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The social construction of a special needs program for hurricanes

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Title:
The social construction of a special needs program for hurricanes
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English
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Tabler, Robert E
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University of South Florida
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Subjects / Keywords:
Disability
Evacuation
Shelters
Emergency management
Grounded theory
Dissertations, Academic -- Community and Family Health -- Doctoral -- USF   ( lcsh )
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non-fiction   ( marcgt )

Notes

Summary:
ABSTRACT: The overall purpose of this exploratory study was to comprehend how in the event of a hurricane Hillsborough County, Florida protected its elderly and disabled residents with special medical needs. This study used Social Constructionist Theory as a framework and Grounded Theory methodology in the collection of qualitative data. To understand stakeholder knowledge and how they constructed the SpNP, three focus groups were conducted, with representatives from agencies on the Planning Committee. Through 30 in-depth, semi-structured interviews, clients of the SpNP, provided insight into their knowledge of the program and how society influenced evacuation decisions. Finally, 10 in-depth, semi-structured interviews were conducted with elites or directors of agencies in the SpNP (bosses of stakeholders), who functioned as key informants to verify results.Examination of how SpNP stakeholders, perceived the meaning of community responsibility for people with special medical needs identified three themes: disaster experience, coalition building, and collective moral responsibility. Examination of how SpNP clients, constructed their meaning of the SpNP, identified five themes: registration barriers, SpNP knowledge, support systems, cultural expectations, and the media. Examination of societies influence on the evacuation decision of SpNP clients identified three themes: risk perception, evacuations barriers and the media. The study highlighted the importance of forming community coalitions to address the needs of vulnerable populations. It is also obvious that the state legislation needs to specifically define special needs and standards of care that must be provided at public and special needs shelters.Implications for public health practitioners, suggest the need to be more involvement with the media, in efforts to promote policies and the perception of risks due to hurricanes. Public health nurses need to receive training on caring for chronic illnesses. Mandatory training for social workers, nurses, and physicians who provide health care to the general population should be considered. There is a need for all agencies that provide services and advocate for individuals with special needs to participate in the SpNP, by registering and educating their clients. Many SpNP clients were confused as to the services provided, which could be partially solved by separating the programs transportation and SpNS components.
Thesis:
Dissertation (Ph.D.)--University of South Florida, 2008.
Bibliography:
Includes bibliographical references.
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by Robert E. Tabler.
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Title from PDF of title page.
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Document formatted into pages; contains 456 pages.
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Includes vita.

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aleph - 002001150
oclc - 319632633
usfldc doi - E14-SFE0002607
usfldc handle - e14.2607
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The Social Construction of a Special Needs Program for Hurricanes by Robert E. Tabler Jr., M.A., C.H.E.S. A dissertation submitted in partial fulfillment of the requirement s for the degree of Doctor of Philosophy Department of Community and Family Health College of Public Health University of South Florida Major Professor: Elizabeth A. Gulitz, Ph.D. Wayne W. Westhoff, Ph.D. Howard N. Jacobson, M.D. Larry J. Polivka, Ph.D. Arron A. Smith, Ph.D. Date of Approval: June 26, 2008 Keywords: disability, evacuation, shelters, emergency management, grounded theory, social construction theory Copyright 2008, Robert E. Tabler Jr.

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Dedication This dissertation is dedicated to my father Robert E. Tabler, my stepmother Betty Ann, my mother Doris Stratton, and my grandmother Mary Tabler.

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Acknowledgements I would like to thank those people who helped and supported me through this process. My committee stuck wit h me, even through it seemed I would never finish. I am thankful for the mentorship and support, pr ovided over the years by: Dr. Elizabeth Gulitz, Dr. Wayne Westhoff, Dr. Howard Jacobson, Dr. Arron Smith, and Dr. Larry Polivka.

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i Table of Contents List of Tables vi List of Figures vii Abstract viii Chapter One Statement of the Problem 1 Introduction 1 Hurricane Threats 1 Evacuating a Special Needs Population 3 Theoretical Perspective 8 Applying Social Construction to Evacuation Studies 8 Theoretical Implications of Social Constructionism 9 Qualitative Analysis using Grounded Theory 10 Purpose of the Study 10 Research Questions and Objectives 12 Delimitations 14 Limitations 14 Disaster Management Definitions 15 Grounded Theory Definitions 19 Social Construction Definitions 24 Chapter Two Literature Review 27 Introduction 27 Disaster Cycle 27 Risk of Disaster 30 Disaster Evacuation 31 Evacuation Research 32 Theore tical Models of Evacuation 36 Spec ial Needs Population 39 State of Florida Spec ial Needs Legislation 41 Special Needs Program 44 Theoretical Frameworks in Disaster Management 45 Social Constructionism Theory 46 History of Social Constructionist Theory 46 Social Constructi on and Special Needs Programs 48 Social Co nstructionism Comes of Age 49

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ii Dialectical Method 50 Social Construction Framework 52 Construc tivism vs. Constructionism 55 St rict vs. Contextual Soci al Constructionism 56 Criticism of Social Constructionism 57 Discourse 61 Social Constructionism and Public Health 65 Targeted Populations 69 Summary 75 Chapter Three Methods 78 Introduction 78 Study Design 79 Gro unded Theory Methodology 82 Data Co llection Procedures and Tools 85 Grounded Theory Data Collection Tactics 85 Written and Media Material 87 Strengths and Limitations of Written and Media Materials 88 Focus Groups 88 Strengths and Li mitations of Focus Groups 89 Semi-structured Interviews 90 Strengths and Limitations of Semi-structured Interviews 92 Study Population 93 Descripti on of Hillsborough County 94 Characteristics of SpNP Stakeholder Population 95 Characteristics of SpNP Client Population 96 Characteristi cs of Elite Population 96 Qualitat ive Data Collection Tools 97 Written and Media Material 98 Stak eholder Focus Groups 99 Sample Size and Pa rticipant Recruitment 100 Non-Participation 101 SpNP Client Se mi-structured Interviews 102 Inclusion and Exclusion Criteria 103 Sample Size and Participant Recruitment 104 Elite Semi-structured Interviews 106 Inclusion and Exclusion Criteria 107 Sample Size and Participant Recruitment 107 Maintenance of Qualitative Data 108 Audiotaping 108 Analysis of Qualitative Data 109 Management of Qualitative Data 109 Data Analysis and Interpretation 110 Rigor in Qualitative Research 112

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iii Reflexivity 112 Validity 113 Reliability 115 Transferability 115 Chapter Four Results 117 Introduction 117 History of the Hillsborough County Special Needs Program 118 Stakeholders Focus Groups 124 Focus Group 1 124 Focus Group 2 137 Focus Group 3 149 Characteristics of SpNP Clients Interviewed 171 SpNP Clients 171 Outcome of SpNP Client Interviews 173 Wave 1 SpNP Client Interviews 173 Wave 2 SpNP Client Interviews 191 Wave 3 SpNP Client Interviews 213 Characteristics of Elite Participants Interviewed 237 Outcome of Elite Interviews 238 Registration for the SpNP 238 Staffing the Shelters 243 Role of Retirement Communities 247 Governments Role in SpNP 250 Weaknesses of the SpNP 254 Agency Disaster Plans 256 Training 257 Non-Evacuation 259 Pets in Shelters 260 Culture of Preparedness or Dependency 262 Hispanic Culture 264 Education 265 Role of Media 268 County Development of SpNPs 269 Future of the SpNP 275 Chapter Five Discussion 278 Introduction 278 Purpose of the Study 278 Overview of Methodology 281 Main Findings: Stakeholders Pe rception of Need for SpNP 283 Disaster Experience 283 Coalition Building 286 Collective Moral Responsibility 303 Barriers to SpNP Development 308 Interaction of Themes 313

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iv Prior Theoretical Research 314 Disaster Experience 315 Coalition Development 317 Collective Moral Responsibility 323 Main Findings: Clients Construction of the Meaning of he SpNP 327 Registration Barriers 327 SpNP Knowledge 330 Support Systems 333 Cultural Expectations 334 Media 337 Interaction of Themes 340 Prior Theoretical Research 341 Registration Barriers 342 SpNP Knowledge 342 Support Systems 343 Cultural Expectations 343 Media 345 Main Findings: Societies Influence on Clients Evacuation Decision 346 Risk Perception 346 Evacuation Barriers 348 Media 356 Interaction of Themes 360 Prior Theoretical Research 362 Risk Perception 363 Evacuation 365 Evacuation Barriers 367 Chapter Six Conclusions and Recommendations 371 Introduction 371 Stre ngths and Limitations 372 Credibility 373 Strengths 373 Limitations 376 Confirmability 377 Strengths 378 Limitations 379 Dependability 379 Strengths 380 Limitations 380 Transferability 380 Strengths 381 Limitations 383 Research Questions Findings 384 Community Development of a SpNP 385 SpNP Clients Construction of Program Knowledge 389 Societies Influence on SpNP Clients Evacuation Decisions 390

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v Implications and Recomm endations for Public Health 392 Recommendati ons for Future Research 397 References 399 Appendices 427 Appendix A: Agency Members of the Hillsborough County Special Needs Program 428 Appendix B: Email Requesting Participation in Stakeholder Focus Group 429 Appendi x C: First Stakeholder Focus Group Interview Guide 430 Appendi x D: Second Stakeholder Focus Group Interview Guide 431 Appendix E: Third Stakeholder Focus Group Interview Guide 432 Appendi x F: Stakeholder Focus Group Informed Consent Form 433 Appendix G: SNP Client Informed Consent Form 436 Appendix H: Sp NP Client Payment Receipt 439 Appendix I: SpNP Client Semi-Structured Interview Guide 440 Appendix J: Letter Requesting SNP Client Participation in Study 441 Appendix K: Elite Informed Consent Form 442 Appendix L: Email Requesting Partic ipation in Elite Interview 445 Appendix M: Characteristics of Focus Group 1 Participants 446 Appendix N: Characteristics of Focus Group 2 Participants 447 Appendix O: Characteristics of Focus Group 3 Participants 448 Appendix P: Characteristics of Wa ve 1 SpNP Client Participants 449 Appendix Q: Characterist ics of Wave 2 SpNP Client Participants 451 Appendix R: Characteri stics of Wave 3 SpNP Client Participants 453 Appendix S: Characteristics of Elite Participants 455 About the Author End Page

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vi List of Tables Table 1. Disability Among Individuals Aged 15 and Older By Age and Severity: 1997 (Percent of Population in Each Age Group). 74 Table 2. Outline of Data Collection Steps for Study of the Hillsborough County Special Need s Population. 98 Table 3. Participation in the Three Wa ves of SpNP Client Interviews by Database Samples and Mailing. 106

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vii List of Figures Figure 1. The Disaster Cycle. 28 Figure 2. Map of the 64 Florida Counties, with Hil lsborough Colored Red. 95 Figure 3. Model of how Members of the SpNP Planning Committee Perceive the Meaning of Co mmunity Responsibility for Individuals with Special N eeds, in an Evacuation for a Hurricane. 314 Figure 4. Model of how Clients Constr ucted Their Meaning of the SpNP. 341 Figure 5. Model of how Society Infl uences the Evacuation Decisions of SpNP Clients. 361

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viii The Social Construction of a Special Needs Program for Hurricanes Robert E. Tabler Jr. ABSTRACT The overall purpose of this explorator y study was to comprehend how in the event of a hurricane Hills borough County, Florida protected its elderly and disabled residents with special medica l needs. This study used Social Constructionist Theory as a framewor k and Grounded Theory methodology in the collection of qualitative data. To understand stakeholder knowledge and ho w they constructed the SpNP, three focus groups were conducted, wit h representatives from agencies on the Planning Committee. Through 30 in-depth, semi-structured interviews, clients of the SpNP, provided insight into their k nowledge of the program and how society influenced evacuation decisions. Finally, 10 in-depth, semi-structured interviews were conducted with elites or directors of agencies in the SpNP (bosses of stakeholders), who functioned as key informants to verify results. Examination of how SpNP stake holders, perceived the meaning of community responsibility for people with special medical needs identified three themes: disaster experience, coalition building, and collective moral responsibility. Examination of how SpNP clients, c onstructed their meaning of the SpNP, identified five themes: regist ration barriers, SpNP knowledge, support

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ix systems, cultural expectations, and the media. Examination of societies influence on the evacuation decision of SpNP clients identified three themes: risk perception, evacuations barriers and the media. The study highlighted the importance of forming community coalitions to address the needs of vulnerable populations. It is also obvious that the state legislation needs to specific ally define special needs an d standards of care that must be provided at public and special need s shelters. Implications for public health practitioners, suggest the need to be more involvement with the media, in efforts to promote policies and the perception of risks due to hurricanes. Public health nurses need to receive training on caring for chronic ill nesses. Mandatory training for social workers, nurses, and ph ysicians who provide he alth care to the general population shoul d be considered. There is a need for all agencies that provide services and advocate for individuals with special needs to partici pate in the SpNP, by registering and educating their clients. Many SpNP clie nts were confused as to the services provided, which could be partially solved by separating the programs transportation and SpNS components.

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1 CHAPTER I: STATEMENT OF THE PROBLEM Introduction This exploratory qualitative study seeks to understand Hillsborough County, Florida provides for the protection of its most vulnerable populations, those individuals with special medical needs in the event of a hurricane. Grounded theory methodology and a social constructi on theoretical framework were used in an effort to understand and describe the Hillsborough County Special Needs Program (SpNP) through the language used by community stakeholders and program participants. A sec ond purpose of this study was to describe the social concept of special needs and develop a description of the process that resulted in the decisions as to what services the co mmunity provides to this population during evacuations for hurricanes. Hurricane Threats Destruction of coastal communities by tropical cyclones is a worldwide public health problem. Developing over warm tropical waters these storms also known as cyclones in the Australasia and Indian Oceans, typhoons in the western Pacific, and hurricanes in the North Atl antic, Caribbean Gulf, eastern North Pacific

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2 and western coast of Mexico. In North America, coastal communities along the Gulf of Mexico and Atlantic coastlines are particularly vulnerable to hurricanes. According to the United States National Hurricane Center, Florida is the most vulnerable of all the coastal states (National Hurricane Center, 2005). Florida forms a large peninsula separating the At lantic Ocean and the Gulf of Mexico. With 8,400 miles of tidally influenced shor eline Floridas landmass at its widest is within 100 miles of a coastline (Culli ton, 1990). Between 1950 and 2000 Florida coastal communities experienced a 487 per cent population growth (U.S. Bureau of the Census, 2006). In 2002, 12.3 milli on Florida residents lived along the coastline, at particular high risk to the e fforts of a hurricane (F lorida Department of Community Affairs, 2005). Since 1884, when the Na tional Weather Servic e began keeping weather records, Florida has been affected by over 114 hurricanes (National Weather Service, 2008). Following two decades of lo w hurricane activity, North American is currently in the middle of a very active hurricane period. In both 2004 and 2005, four hurricanes made landfall in Florida causing great damage, affecting the lives of many residents. A record seas on the 2005 Hurricane Season spawned 27 hurricanes six more than the previous record set in 1933 (The Weather Channel, 2006). This was followed by two quite hurricane seasons, 2006 and 2007 in which Florida was not struck by any hurricanes. In the past, hurricanes would strike coastal communities with little or no warnings, often leaving behind vast destruction of infrastructure and at times killing or injuring residents. With the invention of radar in the 1940s, some warning of

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3 approaching hurricanes became possible. On April 1, 1960, the National Oceanic and Atmospheric Administration (NOAA) launched the worlds first weather satellite (NOAA, 2005). Over 45 years later, tropical systems are tracked as they develop into hurricanes, by a network of weather satellites. Using complex prediction models, meteorologists can now make predictions days in advance a storms potential geographi c landfall. Evacuating a Communitys Special Needs Population Once a community is identified as a probable location for a hurricanes landfall, it is the responsibility of community leaders to decide if and when to order residents to evacuate for safe shelter. The evacuation of a community comes at great personal and economic cost as businesses are forced to close, buildings and homes in flood zones evacuated, and city wo rkers forced to work overtime. The ordering of an evacuation can come at great political cost. Order an evacuation and the hurricane strikes elsewhere, dec ision makers face the anger of a community who were needlessly ordered to close businesses and/or leave homes. If community leaders wait too long to i ssue evacuation orders, there may not be time for all residents to evacuate, forcing some to shelter in place Possibly in structures vulnerable to the damaging effects of the hurricane. The need for communities to integrate procedures into their emergency plans for caring for those in the comm unity with special needs, received national attention on September 11, 2001, after the terrorist attacks on New York City. The City of New York lacked procedures in its disaster plan to care for or evacuate

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4 those individuals unable to evacuate themse lves. Unable to evacuate themselves, many disabled, ill, and elderly individuals were trapped in their homes without access to medical services. In respons e, the National Organization on Disability (N.O.D.) developed an emergency preparedne ss initiative, for individuals with disabilities. Its objective was to help co mmunities integrate into local emergency plans procedures for meeting the special medical needs of residents during a disaster or emergency. According to N.O.D., people with disabilities have a great stake in the effectiveness of public programs aimed at preparing for and responding to all types of disasters (N.O.D ., 2002, p. 2). N.O.D. advocated that by integrating the needs of th is vulnerable population in to local regional emergency plans, community leaders would be better situated to make informed decisions in utilizing available resources, to diminish the adverse impact of a disaster on the community. A community evacuation plan needs to address the movement of three types of special needs populations not able to transport themselves (Perry, 1991). The largest of these populat ion categories, are those not owning or having access to private vehicles, which could be used for transportation to safe shelter. The second population category, resides in inst itutions such as schools, prisons, jails, hospitals, nursing homes, or convalescence centers. The final category includes those residents, with specia l medical needs, who are unable to physically transport themselves without assistance. While t he majority of individuals in this final category require only minimal assistance during transportation, others may be bedridden or obese, requiring transportation by ambulance.

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5 Although the literat ure on evacuation is expansive, very little has been published on issues concerning the evacuat ion of one of the communitys most vulnerable populations, those with special m edical needs. For the purpose of this research study, special needs population only refers to those individuals with needs, medically related. Those indivi duals with special needs related to language barriers and those healthy individuals lacking transportation were not considered in this study. One evacuation study, completed after the 1985 Hurricane Elena, included questions concerning health status and servic es received (Nelson, Kurtz, Gulitz, Hacker, Lee, & Craiger, 1988; Brown, Kurtz, Turley, & Gulitz, 1990; Gulitz, Kurtz, & Carrignton, 1990). Because of Hurricane Elena, more than a million coastal residents living in west-central Florida, including Hillsborough County evacuated their homes. It should be noted that Hu rricane Elena did not make landfall in Tampa Bay. Rather, it hovered off coast for three days, before making landfall in Floridas Big Bend area. During the evacuation period ARC shelters housed 84,000 people (Nelson, Kurtz, Gulitz, Ha cker, Lee, & Craiger, 1988). After Hurricane Elena, managers of ARC shelte rs reported problem s dealing with the many demands related to the specific medical needs of the disabled/elderly shelterees. Their demands included toileti ng, special diets for diabetics, oxygen, electricity for medical monitoring devices and a lack of medications required for treating a variety of chronic diseases (Gu litz et al., 1990; Brown, Kurtz, Turley, & Gulitz, 1990). These researchers also learned that during Hurricane Elena, hundreds of individuals with special needs were stranded in their homes for the

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6 duration of the storm, because of the inability to evacuate themselves. Those individuals with special m edical needs, who were able to evacuate to ARC shelters, found facilities neither equipped no r staffed to deal wi th their special medical problems. This happened because shelters operated by the ARC are designed to provide food, temporary shelte r, the most basic first aid, and do not guarantee a continuous supply of electricity. In response to outcries from the community after Hurricane Elena, Hillsborough County Commissi oners mandated that its Emergency Operations Center (EOC) integrate into the communi tys evacuation plan, procedures for dealing with the special medical needs of t he elderly/disabled population. For that reason in 1985, the Hil lsborough County SpNP Planning Committee was developed; to give community stakeholders the opportunity to develop a comprehensive evacuation plan for t he special medical needs population. The SpNP Planning Committee conducted its first meeting in January of 1986, to review and update the countys plan s for sheltering residents with special medical needs, during hurricane evacuations. Current participants in the SpNP Planning Committee include stakeholders represented by: public companies; government agencies; organizations that advocate for the elderly/disabled; government officials and other pow er brokers in the community. The SpNP was designed to identif y county residents who have special medical needs and require some form of assistance from the community during the evacuation process, and to provide safe shelter with access to electricity and medical support (Hillsborough County, 2005) The planning committee decided

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7 that admittance into a special needs shelter (SpNS) would be restricted to individuals needing medical attention and/or assisted living requirements. Individuals needing care at the hospital level, would not be admitted to the SpNSs, but would be admitted to a hospital. At the SpNSs there would be nurses (sometimes a doctor) and support personal that help provide physical assistance (e.g. serving food, helping people go to restroom). Assistance to evacuees registered with the SpNP may be provided in the form of transportation to safe shelter before the hurricane, sheltering during the hurricane, transportation home after the hurricane, or long term sheltering if necessary. Further, the SpNP attempts to insure that a communitys special medical needs population have access to health care during and after a hurricane. This health intervention will help to manage chronic diseases and/or disabilities. During the 2004, Hillsborough County issued evacuation orders for hurricanes three times, testing the capacity of the SpNP and exposing its weaknesses and strengths. After the 2004 hurricane season, the Florida State Legislature transferred the responsibility for operating and staffing the SpNSs from the county EOCs to the county Department of Health (DOH), which up until then was only responsible for providing each Sp NS with a public health nurse, to supervise volunteer nurses. This tr ansition period was an opportune time to qualitatively examine the pr ogram and the knowledge of its stakeholders, as they evaluated and redesi gned the program.

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8 Theoretical Perspective A review of the literature, found no study of how or why a community develops a SpNP. This lack of scientif ic knowledge on SpNPs suggested that a qualitative study was warranted for this study. Applying Social Construction to Evacuation Studies Social Constructionist Theory was the c onceptual framework for this study. The social constructionist approach places priority on the phenomena of knowledge and sees both data and analysi s as created from the shared experiences of participants and researc her and the relationship they built (Charmaz & Mitchell, 2001). Constructionist s are considered to be more adept at entering public discourse and participat ing in cultural dialogue concerning important timely matters (Jost & Kruglanski, 2002). Social constructionists examine how people develop through personal experiences and social interactions knowledge, attitudes, perceptions and behaviors about a subject (Loseke, 1999). An important component of social constructionism was the context of the so cial problem and the pr emise that reality and the phenomena of daily life are socially constructed (Berger & Luckmann, 1967). Constructionists, in their analysis of the processes people use to assign meaning to their world, generally acknowle dge three principles (Burr, 1995). The first principle was that a persons proc ess of understanding wa s a product of their culture and history and was dependent upon the cultures contemporary social and

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9 economic measures. The second principl e was the way people currently develop understanding and knowledge is dependent on social processes, not an objective observation of the world. The third pr inciple was that people perceive the world though a multiplicity of possible social constructions as socially agreed upon understanding and knowledge can take ma ny shapes and change over time. According to Ibarra and Kitsuse ( 1993), the social construction model makes two assumptions. The first wa s that there was no such thing as indispensable truth. What was asserted to be true should always be treated as a product of power relations among me mbers in a community. The second assumption was that knowledge and its application are not neutral, all knowledge being the product of social relations and t herefore power relations, was subject to change. Theoretical Implications of Social Construction Social Constructionist Theory exami nes how people in a community develop an attitude about a topic as a result of t heir experiences and social interactions, knowledge, perceptions and behaviors. A social constructionism framework can be used to study: social relationships su ch as friendships, neighbors, and family relationships and the support that they pr ovide; shared physical artifacts in the community such as shelters; shared social goals and projects such as helping the elderly/disabled; and shared cultural norms and traditions such as the strong caring for the weak. For example, the social constructionist researcher would be interested in how society creates and underst ands concepts of special needs as it

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10 relates to sheltering and then develop ideas of community responsibility for the disabled, rather than seeking to find an excl usive biological basis for the concept of special needs (Loseke, 1999). Qualitative Analysis Using Grounded Theory There is a duel purpose in using gr ounded theory methodology, in that there was little information concer ning SpNSs in the scientific literature and there was a need to assess how a community protects the special medical needs population during a hurricane evacuation. The intent of using Grounded Theory, in this study was to generate or discover themes in t he data, which could be developed into a model that represented in abstract explanatory diagram s the development of the SpNP in Hillsborough County. Grounded theo ry was selected as it has methods that contain a set of guidelines that helped the researcher examine social constructions and social processes, dire cted the collection of data, conducted the analysis of data, and explai ned the process being studied in the form of an abstract theoretical framework (Charmaz, 2000). Purpose of the Study The purpose of this exploratory study was to understand how a community socially constructed its plan to protect the local special m edical needs population during a hurricane evacuation. This st udy also examined how a community continuously contributed to the developm ent and implementation of health policy by illuminating the effects of class, language, technology, culture, political

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11 economy, institutional stru cture, and professional norms that constrained or influenced the process (Brown, 1995). This exploratory qualitative study focu sed on the use of the SpNP in the event of evacuation for a hurricane. Therefore, only evacuation for hurricanes was examined by this study, as it is one of the few disasters, which could strike Hillsborough County and provi de an extended period for community evacuation. This study was designed to help the researcher develop a comprehensive understanding of the community values that went into the development of the SpNP in Hillsborough County, Florida. Using social constructionism as the theoretical framework and following a qualitative research approach based on grounded theory, the study provided information on preparation, evacuation knowledge, sources of social influence, cu ltural beliefs and attitudes, experiences with the SpNP, reasons for not evacuat ing, community verses individual responsibility, and reaction to local media information on hurricane evacuation.

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12 Research Questions and Objectives The objectives (alphabetical) listed bel ow were selected to direct the investigation of the research questions ( numerated) in the effo rt to understand the social construction of the SpNP in Hillsborough County. Of particular interest was how community stakeholders perceived the need for a SpNP, what the SpNP clients knew about the program, and social influence on the decision by SpNP clients whether to evacuate or shelte r-in-place. The research questions enumerated below served as guidance to aid in accomplishing each objective. 1. Understand how community stakeholders in Hillsborough County, Florida perceived the meaning of community res ponsibility for individuals with special medical needs in the event of a hurric ane evacuation, and what factors affect the development of the Hil lsborough County SpNP. a. Who were the community stakehol ders (agencies and businesses) that served as members of the SpNP Committee? b. What social norms affected t he community stakeholders understanding of the needs of individuals with s pecial medical needs before, during, and after a hurricane? c. What were the st ated goals reported by t he different community stakeholders in the SpNP? d. How was sustainability of the SpNP understood by the involved stakeholder groups? What were the implications of this understanding? e. What determined the param eters of the SpNP (e.g ., inclusion criteria, equipment, staffing)?

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13 2. Understand the meaning of Hillsborough Countys SpNP as constructed by those individuals registered in the program. a. What was the registration process? b. What was the SpNP? c. What preparations, if any, we re made to shelter in place? d. Did people understand evacuation warnings? e. Were the SpNSs considered to be a safe place? f. What factors encouraged or deterr ed evacuation to a SpNS before a hurricane? g. What preparations for evacuation were made? h. What were the past experiences with hurricanes and/or evacuation from their homes? i. What was it like during and after an evacuation for a hurricane? 3. Understand social influences on the decis ions the individual registered in the Hillsborough County SpNP made regar ding evacuation to a SpNS. a. What was the living situation (e.g ., type of home, married, live alone, pets)? b. What was the social support network? c. What social norms affected the decis ion whether or not to evacuate to a SpNS? d. Whose opinions most influenced attitudes regarding evacuation to a SpNS?

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14 e. What was the reaction to informa tion presented by the media concerning evacuation to a SpNS? f. What were perceptions of the countys responsibility for their safety in the event of a hurricane? g. Where was information obtained r egarding hurricanes, sheltering, and evacuating procedures? h. What was the perception of what was available (equipment/materials) in the SpNSs? Delimitations Delimitation of the study included the following: 1. Only individuals with special medica l needs residing in Hillsborough County, Florida and who were registered in the SpNP. 2. Selected community stakehol ders in Hillsborough County. 3. Only individuals who vol untarily agreed to participate. 4. The results of this study were bas ed on personal events and their interpretation of those events and may not re flect everyones experiences. Limitations 1. Results of the study might not be generalizable, as the participants in this study, may not be representative of t hose living in Hillsborough County. Nonetheless, the use of a theoretical framework can offer a platform for the

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15 results to inform what may occur in similar situations (Grbich, 1999; Malterud, 2001; Morse, 1994). 2. The study was based on self-reports. 3. Individuals who agree to participate in the study may have been different from those who did not agree to participate in the study. 4. This study was limited to English speaking participants. Disaster Management Definitions 1. Disability A person is defined as having a disability if: 1) a person with a physical or mental impairment that substantially limit s one or more major life activities; or 2) a person with a history of physical or mental impairment; or 3) a person who is regarded as having such im pairment (American Disabilities Act, 2005). 2. Disaster Any event that causes damage, ec ological disruption, loss of human life, deterioration of health and health se rvices and which exceeds the capacity of the affected community on a scale suffi cient to require outside assistance (Landesman, 2001, p. 172). 3. Disaster Cycle For the purpose of this study t he disaster cycle is the continual intertwined process of preparing for, responding to, recovering from, and mitigation for a disaster. 4. Disaster Response The phase in a disaster when relief, recovery, and rehabilitation occur. Relief is those actions focused on saving lives such as: search and rescue, medical treatment, feeding and emotional care. Recovery

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16 is those actions that help return an affected community to normal. Rehabilitation is the long-term deve lopment following a disaster that reconstructs a communitys infrastructu re to at least pre-existing levels (Landesman, 2001, p. 185). 5. Elderly For the purpose of this paper, t he term elderly will be used to identify those individuals age 60 or older. 6. Emergency Any natural or man-made situati on that results in severe injury, harm, or loss to humans or property (Landesman, 2001, p. 173). Unlike a disaster, emergencies are adverse events that do not have communitywide impact or do not require extraordinary us e of resources or procedures to bring conditions back to normal (Drabek & Hoetmer, 1991, p. xvii). 7. Emergency Management. Emergency management is the discipline and profession of applying science, technology, planning, and management to deal with extreme events that can injure or kill large numbers of people, do extensive damage to property, and disrupt community life (Drabek & Hoetmer, 1991, p. xvii). 8. Emergency Management Agency That government agency (city, county, state, or federal), which is responsib le for planning for and coordination of response and recovery efforts to an emergency or disaster. 9. Evacuation An organized removal of civilian s from a dangerous or potentially dangerous area (Landesm an, 2001, p. 174). 10. Hazard The probability that a natural, tech nological, or civil threat to people, property, and the environment will occur (Landesman, 2001, p. 175).

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17 11. Hurricane Hurricanes are rated Category 1-5 rating based on the intensity of the hurricanes as outline by the Saffi r-Simpson Hurricane Scale. Category one has wind speeds between 74 and 95 m iles per hour (mph), a category two has wind speeds between 96 and 110 mph, category three has wind speeds between 111 and 130 mph, categor y four has wind speeds between 131 and 155 mph, and category five has wind speed at or over 156 mph (National Hurricane Center, 2005b). 12. Mitigation. Measures taken to reduce the harmf ul effects of a disaster by attempting to limit the disasters impact on human health and economic infrastructure (Landesman, 2001, p. 182). 13. Post-impact Phase. The period of time after a disaster event. Often associated with the activities of res ponse and recovery (Landesman, 2001, p. 183). 14. Pre-impact Phase The period of time before a disaster strikes. Often associated with mitigation and preventi on activities (Landesman, 2001, p. 184). 15. Preparedness All measures and policies tak en before a disaster occurs that allow for prevention, mitigation, and readiness (Landesman, 2001, p. 184). 16. Prevention. Primary, secondary, and tertia ry efforts that help avert an emergency. In emergen cy management this is commonly referred to as mitigation. In public health this refers to actions that prevent the onset or deterioration of disease, disability, and injury. Primary prevention is the act of preventing the occurrence of death, injury, or illness in a disaster, such as the

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18 evacuation of residents from flood-pr one areas or substandard housing. Secondary prevention is the act of mitigating the health consequences of disasters, such as evacuating to safe shelter when disasters are imminent. Tertiary prevention shields persons with healt h conditions from negative health effects relating to a disaster, such as providing elec tricity to operate medical equipment (Landes man, 2001, p. 184-188). 17. Recovery Actions of responders, governm ent, and the victims that help return an affected community to normal by stimulating community cohesiveness. The recovery period fa lls between the onset of the emergency and the beginnings of the reconstruc tion period (Landesman, 2001, p. 185). 18. Risk Risk is the probability that a hazar d will occur during a particular time period. Risk is often represents as a product of hazard and vulnerability: Risk = Hazard x Vulnerability (Landesman, 2001, p. 186). 19. Shelter in Place Remains where one is during a disaster (Tierney, Lindell, & Perry, 2001, p. 87). 20. Special Needs Program (SpNP) A SpNP is a comprehensive and organized approach that seeks to integrate loca l service organizations, home health agencies and government entities, and transportation facilities into a workable system to identify, locate and, when necessary, assist residents who cannot evacuate without assistance (Daines, 1991, p. 179). 21. Special Needs Shelter (SpNS) A SpNS is a temporary emergency-type facility capable of providing special medical/nursing care to individuals whose physical or mental condition ex ceeds the capabilities of the ARC

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19 shelters but is not severe enough to require hospitalization (Hillsborough County, 2007, p. 1). 22. Vulnerability The susceptibility of a populatio n to a specific type of event (Noji, 1991, p.13). 23. Warning and forecasting Monitoring events to det ermine the time, location, and severity of a disaster (Landesman, 2001, p. 190). Grounded Theory Definitions 1. Axial Coding The process of relating categories to their subcategories, termed axial because coding occurs around the ax is of a category, linking categories at the level of properties and dimensions (Strauss & Corbin, 1998, p. 123). 2. Category A concept that stands for a phenomena (Strauss & Corbin, 1998, p. 101). 3. Code notes Memo containing the actual produc ts of the three types of coding: open, axial, and selective conceptual ordering. Organizi ng (and sometimes rating) of data according to a selective and specified set of properties and their dimensions (Strauss & Corbin, 1998, p. 217). 4. Coding The analytic processes thr ough which data are fractured, conceptualized, and integrated to form t heory (Strauss & Corbin, 1998, p. 3). 5. Concepts The building blocks of theory c onceptual ordering. Organizing (and sometimes rating) of data according to a selective and specified set of properties and their dimensions (S trauss & Corbin, 1998, p. 101).

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20 6. Conceptual Ordering Organizing (and sometimes rati ng) of data according to a selective and specified set of properti es and their dimensions (Strauss & Corbin, 1998, p. 15). 7. Constructivist Grounded Theory. Researchers believe that human beings do not find or discover knowledge so much as construct or make it (Denzin & Lincoln, 2003, p. 305). 8. Content Analysis. The identification of certain wo rds, coding them on the basis of different categories and counting them (Phillips & Jorgensen, 2002, p. 122). 9. Deductive Analysis. As used in quantitative studies, the researcher advances a theory, collects data to test it, an d reflects on the confirmation or disconfirmation of the theory by the results (Creswell, 2003, p. 125). 10. Diagrams. Visual devices that depict the relationships among concepts (Strauss & Corbin, 1998, p. 217). 11. Dimensions. The range along which general pr operties of a category varies, giving specification to a category and variation to the theory (Strauss & Corbin, 1998, p. 101). 12. Discourse Discourse is the general i dea that language is structured according to different patte rns that peoples utterances follow when they take part in different domains of social lif e (Phillips & Jorgensen, 2002, p. 1). 13. Discourse Analysis The analysis of the patterns followed when people interact (through language) in social life (Phillips & Jorgensen, 2002, p. 1).

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21 14. Document Analysis. Written documents are studied by analyzing the practical social contexts of everyday life in which the material is constructed and used (Miller, 1997, p.77) 15. Fieldwork The gathering of information th rough observations, interviews, and materials helpful in developing theory (Creswell, 1998, p. 61). 16. Generalizability There are two types of Generalizability, internal and external. Internal generalizability is where a conclusion can be used to describe the group studied. External generalizability is where a conclusion can be used to describe beyond the group being studied to other populations (Maxwell, 1996, p. 96-97). 17. Grounded Theory. A means of collecting qualitative data whereby the researcher attempts to derive a general, abstract theory of a process, action, or interaction grounded in the views of participants in a study. This process involves using multiple stages of data collection and the refinement and interrelationship of categories of info rmation (Strauss & Corbin, 1998, p. 12). 18. Memo Written records of analysis that ma y vary in type and form (Strauss & Corbin, 1998, p. 217). There are three main types of Memoing: code notes, theory notes, and operational notes (S trauss & Corbin, 1998, p. 217). 19. Microanalysis The detailed line-by-line anal ysis necessary at the beginning of a study to generate init ial categories (with their properties and dimensions) and to suggest relationships among categories; a combination of open and axial coding (Strauss & Corbin, 1998, p. 57).

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22 20. Negative Case Analysis. Analysis of cases, which do not support the hypothesis ((Patton, 2002, p. 95). Th is may result in the revising of the current hypothesis. 21. Objectivist Grounded Theory Objectivist grounded theory accepts the positivistic assumption that there is an external world that can be described, analyzed, explained, and predicted. This theory assumes that as different observers discovered the world they wil l describe it in similar language (Charmaz, 2000, p. 524). 22. Open Coding. The analytic process by wh ich concepts are identified and their properties and dimensions discover ed in data (Strauss & Corbin, 1998, p. 101). 23. Open-ended Questions The process by which the research asks questions without categories selected beforehand so that the participant is allowed to present their point of view in thei r own terms (Patton, 2002, p. 21). 24. Paradigm. An analytic tool devised to help analysts integrate structure with process (Strauss & Corbin, 1998, p. 123). 25. Participatory Action Research. Refers to the process by which the researcher becomes part of the social change under investigation. The investigator influences the outcome of the st udy (Tedlock, 2003, p. 167). 26. Phenomena Central ideas in the data r epresented as concepts (Strauss & Corbin, 1998, p. 101).

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23 27. Qualitative Research Any type of research that produces findings not arrived at by statistical procedures or ot her means of quantification (Strauss & Corbin, 1998, p. 10-11). 28. Reflexive. The researcher who reflects on who he or she is in the inquiry and is sensitive to his or her personal biography and how it shapes the study. This introspection and acknowledgment of bias, values and interests typifies qualitative research today (Creswell, 2003, p. 182). 29. Researcher Bias. When the researchers select s data that fits the existing theory or preconceptions or selects data that appears to stand out (Maxwell, 1996, p. 90). 30. Reactivity The influence of the researcher on the setting or individuals studied (Maxwell, 1996, p. 91). 31. Selective Coding A last pass at coding qualitat ive data in which a researcher examines previous codes to identify and select illustrative data that will support the conceptual coding categories developed (Neuman, 2003, p. 544). 32. Semi-structured Interviews Open-ended questions asked by the research when there is some knowledge about t he subject matter but all categories have not been identified. Provides deta il, depth, and an insiders perspective while at the same time allowing quantit ative analysis of the interview process (Leech, 2002, p. 665). 33. Sensitivity The ability to respond to the subtle nuances of, and cues to, meanings in data (Strauss & Corbin, 1998, p. 35).

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24 34. Structure The conditional context in wh ich a category (phenomenon) is situated (Strauss & Corbin, 1998, p. 123). 35. Theory A set of well-developed concept s related through statements of relationship, which together constitute an integrated framework that can be used to explain or predict phenomena (Strauss & Corbin, 1998, p. 15). 36. Theoretical Notes Sensitizing and summarizing memos that contain an analysts thoughts and ideas about theor etical sampling and other issues (Strauss & Corbin, 1998, p. 217). 37. Theoretical Sampling. Sampling on the basis of emerging concepts, with the aim being to explore the dimensional range or varied conditions along with which the properties of concepts vary (Strauss & Corbin, 1998, p. 73). 38. Theoretical Saturation. The point in category development at which no new properties, dimensions, or relationshi ps emerge during analysis (Strauss & Corbin, 1998, p. 143). 39. Triangulation Since each source of data (e.g., focus groups, interviews, media, and professional literature) has strengths and weakness in defining a topic, triangulation helps compensate for the weaknesses of one source by collecting data from a variety of sources (Marshall & Rossman, 1989). Triangulation is the display of multiple refracted realities simultaneously (Denzin & Lincoln, 2003, p. 8). 40. Validity The correctness or credibility of a description, conclusion, explanation, interpretation, or other sort of account (Maxwell, 1996, p. 87).

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25 Social Construction Definitions 1. Claimsmaker. Those individuals who say or do things to convince the community that a social pr oblem exists (Loseke, 1999). 2. Context. Places findings in a social, hist orical, and temporal context; careful about, even dubious of, the possibility or meaningfulness of generalizations across time and space emphasizes instead careful comparative case analyses and extrapolating patterns for possible transferability and adaptation in new settings (Patton, 2002, p. 41). 3. Emergent Norm Theory The collective behavior of humans is regulated by norms based on distinctive behavior that emerges from an initially normless crowd without prior planning (Aguirre, Wenger, & Vigo, 1998, p 301). 4. Epistemology. Epistemology is the theory of knowledge and is concerned with the principles and rules by which an indi vidual decides whether and how social phenomena can be known, and how kno wledge can be demonstrated (Mason, 1996, p. 13). 5. Functionalism A broad school of thought that American Psychologist developed in the late 19th century, which emphasized the total organism as it endeavors to adjust to the environment (Britannica Concise Encyclopedia, 2006). 6. General Systems Theory An interdisplinary theor y that examines the system being characterized by the interactions of its components and the nonlinearity of those interactions (Walonick, 2008).

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26 7. Postmodern Theory. An umbrella term that in cludes antifoundationalist writing in philosophy and the social sciences (Denzin & Lincoln, 2003, p. 456). 8. Protective Action Decision Model The process that one goes through when making a decision to take action to protective oneself from a disaster (Tierney, Lindell, & Perry, 2001, p. 89). 9. Rational Choice Theory All action is fundament ally based on reason in character and that people calculate t he likely costs and benefits of any action before deciding what to do (Tobin & Montz, 1997). 10. Social Process Theory. Behavior is a function of individual socialization and the interaction people have with the va rious organizations, institutions and processes of society (Siedel, 2005, p. 156). 11. Utility Theory From the field of economics is a measure of the happiness or gratification that is obtained from consuming goods and services (Tobin & Montz, 1997).

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27 CHAPTER II: LITERATURE REVIEW Introduction The literature review is divided into ei ght main sections: (1) disaster cycle, (2) disaster research as it relates to t he evacuation of communities in response to natural disasters, (3) special needs population, (4) theoretical frameworks used in previous disaster research, (5) Social Constructionism Theory, (6) social constructionism in public health res earch, (7) Targeted Populations, and (8) summary of the material presented in this chapter. Disaster Cycle This section reviews the disaster cycle or the stages that a community goes though in planning for future disasters. When studying disaster policies developed by a community, the researcher must be aware of what stage in the disaster cycle they are interested in studying. Figure 1 illustrates how the disaster cycle is broken down into four overlapping st ages: preparedness, response, recovery, and mitigation (Platt, 1999). The disaster cycle is also referred to as the hazards cycle by some researchers (Tierney, Lindell, & Perry, 2001).

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Preparedness measures enhance the communitys ability to respond when a disaster occurs. The preparedness proce ss involves the attempt to anticipate what community problems are likely to emerge in future disaster situations and then to devise actions to address those pr oblems. It should be apparent that a communitys plan for preparing for a disast er and determining w hat sectors of the community Figure 1. The Disaster Cycle. Preparedness Response Mitigation Recovery must be evacuated should occur well in advance. These preparedness activities include: formulating emergency plans; testing and exercising those plans; providing training for disaster responders and the general public to improve their understanding of what to do in a disaster; communicating with the public; and other related activities (Tierney, 1993). 28

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29 In the case of a hurricane, response ac tivities commence just prior to the event in the form of population evacuati on and infrastructure protection. Response activities continue during a hurricane in the form of sheltering and feeding of evacuees. Immediately after the storm search and rescue response activities continue providing medical attention, protection from looting, and damage assessment (Perry, 1991). During the response phase of the disast er cycle, one of the most critical decisions that community leaders must dec ide is whether or not to order local residents to evacuate. The actual issu ing of evacuation orders has political overtones. Even with todays modern tr acking technology hurricanes are often known to suddenly change directions and strike elsewhere. For community leaders to decide whether or not to evacuat e is a gamble. If they do not issue evacuation orders, they risk being held re sponsible for injury to community residents if the hurricane strikes. If evac uation orders are issued and the hurricane changes direction and misses the community, leaders can be blamed for an unneeded disruption of community life. After evacuation orders have been issued and the hurricane does not strike, people will tend to ignore subsequent evacuation orders, this is referred to as the c rying wolf syndrome (Breznitz, 1984). The line between response and recovery activities blend together as immediately following the hurricane a di verse range of recovery activities commence, which are designed to bring the community back to normalcy (Rubin, Saperstein, & Barber, 1991). These recove ry activities include but are not limited to caring for displaced residents, restori ng flow of transportation (roads, railroads,

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30 airfields, and ports), restoring el ectricity and water/sewage, and repairing infrastructure. Recovery efforts from a di saster may take only few days or continue for years after the disaster depending on the severity of the damage. Mitigation has been defined as any action taken to permanently eliminate or reduce the long-term risk to human life and property and the negative impacts on natural and cultural resources that can be caused by natural or technical hazards (Interagency Flood Management Review Committee, 1994, p. 3). For a hurricane, mitigation activities, such as evacuating before impact and continue through the recovery period by rebuilding in frastructure that it is better able to survive the next disaster (Lillibridge, 1997). Other mitigation activities continue during the preparedness stage as actions such as reviewing plans, applying lessons learned, developing stronger policy are developed to reduce a communities vulnerability to disasters (Platt, 1999, p.71). A comprehensive disaster policy blends together the stages of the disaster cycle, so it creates a seamless plan, for protecting a community from the negative effects of a natural disaster. Risk of Disaster Disaster and risk of disaster differ in significant ways. When studying disasters the researcher examines an event occurring in the past. On the other hand, an examination of t he risk of a disaster is about an event occurring sometime in the future. When disasters are studied, re searchers ask people what

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31 they did. When studying ri sk, researchers ask people w hat they are doing in the here-and-now and about an uncertain future (Tierney, Lindell, & Perry, 2001). When assessing the risk of a community three variables are taken into consideration: (1) the probability frequency of a hazar d occurring in that community, (2) the level of community exposure to the hazard, and (3) the negative outcomes or eventual cost of th is exposure to the community (Haddow & Bullock, 2003). Local emergency m anagers judge the possi ble impact of a disaster by knowing which areas of a co mmunity are more socially vulnerable to disasters. Communities can prioritize w here and how they want to begin mitigation efforts in the effort to reduc e potential disaster impacts. For example, it would not be sensible for communities in Flori da to spend money on equipment used for snow removal. Rather, these communities would be wise to spend tax dollars in mitigation efforts related to hurricanes, a yearly threat. Disaster Evacuation This section begins with a review and interpretation of the historical scientific literature, as it re lates to, the evacuation of communities in response to or anticipation of a natural disaster. As m any consider a natural disaster to be a sociological concept, disaster researcher s have historically abided by the same methodological framework applied by sociol ogical researchers (Kreps, 1984; Mileti, 1987). Strictly, we cannot speak of the me thods of disaster research; there are no special methods unique to this field. Its methods are the methods of social research (Cisin & Clark, 1962, p. 23).

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32 Nigg (1997) promoted t hat as sociological concepts, disasters should not be defined by physical characteristics, su ch as damage caused, but rather on the basis of the disruption experienced by societ y. Thus, from a sociological point of view, a disaster only occurs when a co mmunitys infrastructure and social environments are so disrupted that the available resources are overwhelmed to the point of being incapable of meetin g the populations demands for goods and services. Viewing disasters as discrete events, the classic t heoretical approach was to study disasters using Social Systems Theory, which focuses on assumptions that disasters involve demands that exceed comm unity capabilities called functionalism and social system perspectives (Tierney, Lindell, & Perry, 2001). Evacuation Research Fritz and Marks (1954) conducted the first large-scale sociological investigations of individual and group behavior in natural and technological emergencies and community crises in Ch icago. Fritz and Marks interviewed victims and emergency managers from more t han 70 disasters. They found that the interviewees believed that weakne sses in human character and tensions of social organizations experienced in disast ers caused social chaos, when in fact the opposite is true. Studies of human behavior responding to natural disasters confirmed this theory, as it was evident that people neither panicked nor become immobilized with fear. Rather mo st people behave in a reasonable manner (Bourdeau & Green, 1 989; Lavine, 1989).

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33 Studies in the mid-1950s mostly focu sed on the responses to disasters by individuals, groups, and larger social unit s (Barton, 1969). Burton, suggested that the results to these studies indicated the reasons that di saster plans are not acted on when disaster strikes is due to the fa ilure to provide appropriate resources (funding, manpower, facilities, time to exercise plans, supplies, equipment) necessary to respond to the disaster. Much of the early research about how individuals respond to evacuation orders used Rational Choice and Utility Th eories as the basis for explanation (Tobin & Montz, 1997). Rational Choice Theory attempts to explain the connection between individuals and entit ies that can be economically valuable. A means of examining negotiations that arise when choosing from a num ber of potential courses of action rationally is used to sele ct the course of action bringing the best return. In a review of the literature, Peac ock, Morrow, and Gladwin (1997) found a number of factors, which influenced househ old members decide whether or not to evacuate. The results of t heir review suggested that households were more likely to evacuate if: ordered by authorities, t he evacuation warning was given in person rather than from the media; there were young children in the household; household income was higher than aver age; numbers of people in t he household was small; the household was in a multi-unit structure; and the househol d had made prior preparations to evacuate. The study also suggested that households are less likely to evacuate if: individuals in the household had prior experience with that

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34 type of disaster; there were older individuals in the household; and the household members were ethnic minorities. In contradiction, some studies report ed that prior disaster experience is a powerful predictor of preparedness (Norri s, Smith, & Kaniasty, 1999; Hutton, 1976). Individuals who have experienced a similar disaster are more likely to have made pre-event evacuation plans and hav e already bought supplies needed for evacuation. These studies provided no fo llow-up to determine if these prepared individuals actually evacuated during the nex t disaster. Nor did they report on the seriousness of the disaster. It has been argued that the same socioeconomic factors that put some social groups at greater risk from disaster threats and events also make them more vulnerable to the negative and disruptive c onsequences of disaster events (Miller & Nigg, 1993). Individu als with low social economic status possess fewer resources to spend on mitigation or preparedness activities and have less access to institutional sources of information on haz ards. Being poor may mean not having the means to relocate to safe shelter. Other research has suggested that wo men are more likely to perceive a disaster event or threat as serious or risky (Cutter, 1994; Fothergill, 1996; Riad, Norris, & Ruback, 1997). One of the few evacuation studies that conducted preand post-evacuation interviews found the best pr edictors of a persons intentions to evacuate were a higher perception of risk and the belief that others can influence ones behavior (Riad, Waugh, & Norris, 2001). Research has also suggested that individuals with strong social support groups are more likely to evacuate and

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35 individuals who are not physically well, may have trouble evacuating their homes. Another reason many households do not evacuate is because American Red Cross shelters cannot accept pets becaus e of health and safety regulations and other considerations, such as allergies (Riad et al., 1997). Much of the previous research in evacuation demonstrates that when individuals of a community are ordered to relocate even temporarily, to a shelter, the individual will often resi st and attempt to stay as close to home as possible (Oliver-Smith, 1991). Evacuation, is la rgely a result of people perceiving themselves as being in danger and believing t hat leaving the area in question is both necessary and beneficial (Fitzpatrick & Mileti, 1991). Perry, Lindell, & Greene (1980), argued that there are three issues cr itical in the decision-making process to evacuate ones household: First is the threat perceived to be real? Second, what does the individual perceive their level of personal risk? Third, does the person have a preexisting evacuation plan? (p. 151). A persons ability to evacuate on short notice may depend on two different types of preparedness behavior: proactive and reactive. Proactive behaviors take place beforehand in anticipation of a possible threat and include developing an evacuation kit containing food, water and other supplies needed in an evacuation. On the other hand, reactive behaviors take place when the threat is immediate. Examples of reactive behaviors are f illing the gas tank, boarding windows, and a last minute trip to the groc ery store (Faupel, Kelley, & Petee, 1992; Norris, 1997). The relationship between awareness of risk levels and preparedness is not at all straightforward (Tierney, 1993). To be effective, preparedness activities must

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36 be based on correct assumptions about postdisaster needs. Preparedness in the form of general knowledge and information should facilitate evacuation, by enabling more appropriate response behaviors (Faupel et al, 1992). Both hazard awareness and preparedness are associ ated with socio-demographic characteristics of individuals and households, particularly income and education (Tierney, 1993). Theoretical Models of Evacuation A causal model was used to help explain evacuation decisions made after the 1979 Three Mile Island nuclear power plant accident (Sorensen & Richardson, 1984). Using this model, researchers det ermined that the decision to evacuate was influenced by ten differ ent factors: hazard characte ristics, perceived threat, situational constraints, concern over risk, information provided, coping ability, demographic characteristics, attitudes to wards risk managers, social ties, and risk sensitivity. Quarantelli (1984) devel oped a general analytic model of evacuation behavior, suggesting five sets of fact ors were important in developing an understanding of evacuation behav ior. The first factor is the community context, i.e. the available local resources and components of the existing preparedness plans. The next factor is the threat conditions, i.e. the characteristics of the storm that present a danger to the community. Th e third factor is whether or not the residents of the community define the storm as a threat. The fourth factor, which is strongly dependent on the first fa ctor, is the response-relat ed social process at the

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37 community and organizational levels (threat communication, issuance of warning, evacuation activities, and sheltering behavior). Finally, the consequences evacuation actions might have for future preparedness and response activities are considered. In a study of the evacuation for Hurricane Elena, researchers developed a model with 10 independent vari ables, to predict if a person would evacuate when mandated to by local authorities (Nelson, Coovert, Kurtz, Fr itzsche, Crumley, & Powell, 1989). The model contained five exogenous variables: geographic location (evacuation zone), health problems, inco me, age, and other hurricane experience. The model also contains five endogenous variables: knowledge of tabloid (Hurricane Guide), tabloid use, pets, type of home and evacuation behavior. Because of the appearance of tabloid twic e it might seem that there were 9 independent variables. But the researchers found that awareness of the tabloids existence and people actually using it were separate variables. Evacuees used the tabloid more often than non-evacuees. Variables associated with t he likelihood of evacuating included: living in an evacuation zone; living in small homes or mobile homes; having health problems; higher income: without pets; younger in age; no prior hurricane experience; and using the tabloid (Nelson, Kurtz, Gulit z, Hacker, Lee, & Craiger, 1988; Nelson, Coovert, Kurtz, Fritzsche, Crumley, & Powell, 1989). T he most important variables found to predict if a person would evacuate were: living in an evacuation zone and the type of home (smaller or mobile). Re searchers reported that when they asked people why they did not evacuate, most rep lied that they did not think the storm

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38 was severe, they lived on high ground and if the storm did hit their house was a safe haven. Others responded that they had transportation difficulties or were new to the area and did not know what to do. A few responded that they just did not feel like it. Finding that some individuals evacuation actions do not always seem to be in their best interest, the Protective Acti on Decision Model, was develop based on Emergent Norm Theory and General Systems Theory. This model uses a decision tree of four questions an individual mu st address when deciding if to evacuate (Lindell & Perry, 1992). First, the individual must decide if the th reat really does exist. Next the individual must determine if some sort of protecti on from the threat is required. Then the individual must dec ide if protection fr om the threat is feasible. Finally, the individual must be lieve that protection from the threat will reduce negative outcomes. Other variables in this model include characteristics of the decision-maker (experience, educat ion, personality traits, resources), environmental factors (social behavior, risk communications, physical cues), and social factors (social network, age, ethnicity, socioeconomic status). Quarantelli (1992) has long argued that disasters should be understood and depicted in social terms rather than physica l. Social construction looks at how a community develops disaster plans to mi tigate the impact of disasters and how disasters disturb social order and cultural expectat ions (Horlick-Jones, 1995; Dynes, 1998; Porfiriev, 1998; Tierney, Lindell, & Perry, 2 001). Kreps (1989) argues, that disasters are soci ally constructed, thus disa ster events do not exist but are products of social definition. Community plans designed to diminish the

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39 impact of disasters are also socially pr oduced through claimsmaking activities. From this perspective, what could happen in the physical world, such as death and destruction are not important. What is of importance for a theoretical understanding of natural disasters impact on society is the Social Process Theory, where groups promote their definition of the disaster (Tierney, Lindell, & Perry, 2001). Stallings (1995) believed that eart hquake threats are socially constructed, being the product of promotion and stakeholde rs claims. Social actors frame the earthquake problem as accepted and the social constructionist describes the social process involved in the formulation and use of recommended solutions to the problem. Special Needs Population In 1985, Hurricane Elena resulted in t he evacuation of more than a million coastal residents in west central Flor ida, many of whom were retired and individuals from nursing homes. Amer ican Red Cross shelters housed 84,000 people and with 23.7% of t he respondents reporting that at least one member of their party had a health problem, it is not surprising that shelter managers were overwhelmed by demands related to the specific needs of t he disabled/elderly occupants (Nelson, Kurtz, Gulitz, Hacke r, Lee, & Craiger, 1988). These demands included special diets, oxyg en, electricity for monitori ng devices, and a range of medications needed to treat a variety of ch ronic diseases. Disabled individuals were forced to sleep on small cots or on the floor, as there were no hospital beds in the shelters. Many individuals living in the community, with special medical

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40 needs, were stranded alone in their homes during the storm. Those who did receive help in evacuating arrived at a fa cility neither equipped nor staffed; to deal with the problems presented by the special medical needs required by individuals, with chronic conditions (Gulitz, Kurtz, & Carrignton, 1990). In a 2004 study, after the state of Fl orida had been struck by Hurricane Charley, the Florida Depar tment of Health conducted a rapid assessment of the health status and general needs of older adults in the three counties hardest hit: Charlotte, DeSoto, and Hardee (Center for Disease Control, 2004). Results indicated that older residents reported decrease in their quality-of-life status and experienced disruptions in medical care for preexisting chronic conditions. In Charlotte County, hardest hit by Hurri cane Charley nearly 93 percent of the households structures were damaged. Among those Charlotte County households having at least one older adult resident, one-th ird reported that their social support network had been disrupted, one-third r eported a worsening of a preexisting medical condition, and 28 percent could not receive routine medical care for a preexisting condition. Rapid assessments af ter each of the four hurricanes found, that a total of 12.7 percent of those persons living in the hurricanes paths had problems with access to necessary medica l equipment, such as oxygen or dialysis (Center for Disease Control, 2005a). Having limitations in mobility can generate severe problems for older people in an emergency. The stress may worsen an already unstable medi cal condition or an otherwise stable disability. This need for more intensive medical intervention, will further overload a communitys hospi tal and medical systems, which may be

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41 dealing with persons newly injured by the disaster. It is importa nt that there be some idea of the special medical needs of a community, so that emergency managers can incorporate it into evacuation plans. When developing emergency plans for a community, the planners must appreciate the chroni c problems of older people. Particularly how their difficulties become acute in emergencies as the support they rely is overwhelmed, damaged or destroyed, decreasing their ability to cope with the situation (Fernandez, By ard, Lin, Benson, & Barbera, 2002). Over the past decade, stat e and federal policies have actively promoted the provision of in-home services as a way to allow disabled and elderly individuals to live independently in the community, rather than placement into a facility (Florida Department of Health, 2004). One of the most important roles of local government is the protection of their residents from harm, includ ing providing education and assistance in helping people prep are for and respond to disaster s. A critical part of this responsibility as required by the Am erican with Disabilities Act of 1990 was for local governments to provide disabled individuals access to preparedness and response programs. In 2001, a N.O.D. and Harris Poll Survey found that 58 percent of Americans with disabilities did not know who to contact in their community, to obtain information concer ning local emergency plans (N.O.D., 2002). State of Floridas Spec ial Needs Legislation Florida Statue (F.S.) requires that each of the 67 counties, maintain a municipal special needs regist ry of people with disabilities, who voluntarily register

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42 their names. It is the responsibility of emergency managers to develop a viable program to update registration and to provide assistance when necessary (Daines, 1991). Comprehensive SpNPs integrates local social service organizations, home health agencies, and transportation agencies into a workable system to identify, locate, and assist residents who cannot evacuate on their own. Special needs registration Pr ogram 252.355, F.S., states: In order to meet the n eeds of persons who would need assistance during evacuation and sheltering because of physical or mental handicaps, each county emergency management agency mainta in a registry of disabled citizens located within the agencys jurisd iction. The registration should be utilized to determine who would need assistance and plan for resource allocation to meet these identified needs. As of October 1, 2000, all Home Health Agencies (HHA) were required to develop an emergency managem ent plan. Each HHA was required to collect registration information for special needs pa tients, who will need c ontinuing care or services during a disaster or emergency. This registration information should be submitted to the county emergency managem ent office. Floridas Agency for Health Care Administration developed em ergency management planning criteria to be followed by HHAs. Section 400.492 of th e Florida Statutes (F.S.), outlines the HHAs responsibilities prior to and during an emergency. In order to keep its license, each HHA must have an emergency management plan. After Hurricane Charley hit southern Fl orida it, was evident to Governor Bush that county emergency management agencies were being overwhelmed,

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43 with their responsibilities and issued the Governors Executiv e Order Number 04192. This executive order directed the Fl orida DOH to take over the staffing and operation of the states SpNSs (Executive Order of the Gove rnor, Number 04-192, Section 8, Paragraph C, S eptember 1, 2004). In 2005, Florida Statute (Section 381.0303) required that the DO H be the lead agency for coor dination of the staffing of SpNSs. This statute also ma kes local emergency management agencies statutorily responsible for identif ication and operation of SpNSs. During the 2004 hurricane season ther e were approximately 55,000 persons registered for county SpNPs statewide. However, it was dem onstrated that the county SpNP registry was not very useful for several reasons: 1) many eligible persons were not aware of t he registry, 2) many register ed did not want to shelter at a SpNS, 3) just prior to a hurric anes landfall, many of those unregistered wanted to register, and 4) the lists were not updated and many of the registrants had either died, moved, or no longer met t he requirements (Florida DOH, 2004). During the 2004 hurricanes, the ability of the different coun ties to operate SpNSs differed greatly (Florida DOH, 2004) In some cases, the SpNSs were under-staffed and many workers were faced with shortages of medical support equipment and medications. Many shelters did not have cots appropriate for an elderly, disabled, or obese population, nor were there adequat e quantities of linens, pillows or blankets. Several of the SpNSs experienced roof damage and in one case, the shelter had to be evacuated duri ng the storm. Some shelters did not have generators or experienced problems with generators. Many facilities used for SpNSs did not have appropriate sanitary facilities for the number of evacuees and

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44 in some cases the plumbing broke down. Several SpNSs reported a lack of adequate food supplies and in many cases the food provided wa s not appropriate for an older adult population. After the hu rricanes, some special needs evacuees were discharged even when their home environment was not safe or without electricity (Florida DOH, 2004). Currently, Hillsborough County has th ree SpNSs that can house 3,500 persons. These SpNSs are reserved for people, whose medical conditions are not serious enough to go to hospital, but require a level of care not offered at ARCs shelters. Operated by the Hillsborough County DOH, the SpNSs are staffed mainly by volunteer medial professionals and county social service organizations. Special Needs Programs Because of the chaotic natur e of responding to a disast er, it is critical that advanced planning and coordination of existing resources for persons with disabilities be conducted. Historically such programs identify only a small percentage of the residents r equiring assistance, as many disabled persons prefer to keep their circumstances private and will seek assistance only when an emergency occurs (Daines, 1991). As a resu lt, those individuals who refuse to register with the SpNP will often wait until the last minute to learn what to do during a hurricane. For the local gov ernment it may be very diffi cult or impossible to get help to a disabled individual who needs help evacuating to safe shelter just before or during a hurricane. Before the storm, all available resources may be busy transporting registered disabled indivi duals and during the storm the local

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45 emergency management agency may refuse to send help due to safety issues for the responder. Quarantelli (1995) suggested distinguishing between four different uses of disaster sheltering and housing. First, is emergency sheltering, people only take shelter outside of their permanent homes fo r short periods (hours to a few days) during the duration of an emergency peri od. Second, use of sheltering is temporary sheltering, her e displaced people remain outside of their permanent homes until roads are cleared and basic utility services are returned. Third, residents may have to move into temporary housing, where people resume household responsibilities and activities in th e new quarters but ultimately return to repaired or rebuilt original homes. The fourth and most extrem e situation occurs when people are forced to find new perma nent housing, as th eir pre-disaster residence is not rebuilt. Theoretical Frameworks in Disaster Research Any given set of data can be explai ned by many theories (Reichardt & Rallis, 1994, p. 88). Prev ious disaster research has been conducted following many theoretical frameworks, for exam ple: Theory of Reasoned Action (Ajzen & Fishbein, 1980); Subjective Expected Utility Theory (Sutton, 1982), Protection Motivation Theory (Rogers, 1975), Theory of Planned Behavior (Riad & Norris, 1999), and Ecocultural Theories (Smith & Schwartz, 1996). Subjective Expected Utility Theory was used in an attempt to explain the effects of fear-arousing communicati on about evacuating for a hurricane on

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46 decisions to evacuate (Sutton, 1982). This theory assumes that the fully informed decision maker is most likely to make an a ccurate rational decision. According to this model the strength of a persons intention to evacuate depends on three factors: (1) the possible damaging effects of the hurricane; (2) the perceived reduction in risk to personal injury by evac uating; and (3) the subjective probably of successfully avoiding the hurricane. Sutt on also found, that the amount of fear aroused by the news media had an independent effect on intention to evacuate. Social Constructionism Theory As Social Constructionism was the t heoretical framework for this study. This section: (1) reviews the history of so cial construction, (2) describes the social construction model, and (3) discusses the applic ability of social construction to the study of a SpNP. Theory, as constructed in sociologic al terms, is an endeavor to make sense of the world by applying a compilation of frameworks to describe mans epistemology and ontology. While researchers have proposed many models in the effort to explain evacuation behaviors, there has been no research into the communitys self-prescribed role in ident ifying and evacuating its vulnerable populations in disaster situations. History of Social Constructionist Theory In the nineteenth and twentieth centuries, while many cultures were struggling with the transition fr om a rural to an industrial society, sociologists were

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47 enthralled with the problems of social order. In the early 1900s, a new theoretical framework symbolic interactionism began to compete with sciences positivistempiricist approaches, which emphasized biological determinism (LaRossa & Reitzes, 1993). During this time, sociol ogy in America was greatly influenced by European sociologists and especially by: Karl Marxs work on types of authority in society; Max Webers work on contradictions, change, and conflict in society; and Emile Durkheims work on social cohesion (Bart & Frankel, 1986). Under the influence of Marxs work and Max Schelers phenomenology, Mannhein coined the term sociology of k nowledge. It was Schelers contention that social and political forces pro duced all knowledge a nd beliefs. Mannhein realized that if this was true, then the same social and political forces also produced the interpretations of data by a researcher. Thus, the research had no persuasive force or claim to truth. Mannhein escaped this paradigm of thought, by exempting free-floating intellects that loosely grounded in social traditions and somewhat detached from the social cla ss system, were capabl e of avoiding the pitfalls of total ideologies and could develop dynamic synthesis of the ideologies of other groups (Bart & Frankel, 1986). The sociology of knowledge, involves t he study of the social roots of ideas and the effects that prevailing knowledge has on societies. In the sociology of knowledge, tradition or what seems real to members of a particular social class (capitalist or working), rises fr om the situation of the class. This is especially true, with respect to the economic fundamentals, affecting that class. Socially

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48 constructed reality forms a concept withi n the sociology of knowledge and the social constructionist strand of postmodernism (Hacking, 1999). In the 1930s, Mannheim promoted t he idea that a researcher could mitigate, but not completely escape ideo logizing influences though the systematic analysis of as many of the varying soci ally grounded positions, as possible. The object of thought becomes progressively cl earer with the accumulation of different perspectives (Berger & Luckmann, 1967). O ne of the differences that separate their theoretical perspective from Marx s was that both Weber and Durkheim believed that a scientist could and therefor e should remain free of personal values, when conducting research (Bart & Frankel, 1986). One of the concepts separ ating the sociological theories developed by Weber and Durkheim was their efforts to untangle the role of science and politics when solving social problems. Weber belie ved that science could not substitute for politics. While Durkheim promoted that politics could not substitute for science. Durkheim positivism functionalism and focus on social control, greatly influenced early American sociological thinking. T he focus of functionalism was on how social needs are fulfilled, by the social institut ions developed. Social constructionist theorists, believe that the weakness of functionalisms t heoretical framework, was that it ignored the concept of power (Bart & Frankel, 1986). Social Constructionism and Special Needs Programs The possibility of a hurricane stri king an area can present community leaders with a number of arduous problems. During the storm, roads, telephone

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49 lines, and other transportation and communication links may be destroyed along with public utilities such as water/sewage services and energy supplies (e.g., gas and electricity) being disrupted. Disasters may destroy or seriously limit local health infrastructures, such as hospitals, at the time that their services are most required. After the sto rm casualties may require medical care and people may need long-term shelter. Damage to food sources and utilities may create significant public health threats (Malilay, 1997). Social Constructionism Comes of Age The sociology of knowledge, involves t he study of the social roots of ideas and the effects that prevailing knowledge has on societies. Socially constructed reality forms a concept within the sociology of knowledge and the social constructionist strand of postmodernism. Existing for many years on the peripher y of mainstream, the sociology of knowledge was reinvented into social constructionism and introduced into sociology by Peter Berger and Thomas Luckmann, with their 1966 book on The Social Construction of Reality1. The interest of re searchers using social constructionism, is the discovery of t he different ways individuals and groups create a shared perceived reality. As an approach, it involves examining the ways social phenomena are created, institutionalized, and made in to tradition by people. Social constructionism focuses on the de scription of the institutions and their actions, not on analyzing causes and effects. Socially constructed reality is seen 1 Berger and Luckmanns book The Social Constructio n of Reality was originally published in 1966. The version of their book used in this study was published in 1967.

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50 as an on-going dynamic process, where reality is continuously re-produced by people, acting on their interpretation and t heir knowledge. Social construction describes the subjective, rather than the objective. That is, reality as we can perceive it, rather than realit y as defined by society separate from our perceptions (Berger & Luckmann, 1967). Berger and Luckmann (1967) suggest that: (1) Social interactions play an important part in the devel opment of an individuals curr ent belief about reality. (2) Social interactions between individuals cr eate social institutions and individual personalities. (3) Beliefs about reality, constructed during social interaction, plays an important role in the (re)construction of institutions and peoples beliefs. This third point is important, as it demonstrat es that as people develop a new sense of reality in the world, they recreate their institutions. Dialectical Method Man and his/her social world interact with each other in a dialectical relationship. As conceptualized by Berger and Luckmanns (1967), ultimately the product itself, acts back upon the producer. Broadly speaking, dialectics is an exchange of propositions (thes es) and counter-propositions (antitheses), resulting in a disagreement. The aim of the di alectical method, often known as dialectic or dialectics is to try to resolve the disagreement through rational discussion. Berger and Luckmann assert that ther e are three dialectical stages in the process of constructing of social reality: externalizat ion, objectivation and internalization.

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51 In the first stage, exter nalization, individuals through their own activity, create their social worlds (Berger & Luckmann, 1967). The creation of social order is an ongoing production as the individual is constantly creating and maintaining family relationships, new friendships, and new social institutions. Though social their interactions, people create social prod ucts. These social products may be material artifacts, social institutions, or values or beliefs concerning a particular group. When these products are created, they become ex ternal to those who have produced them they become products exteri or, to the physical self. A situation defined as real, thus becomes real, in its consequences. For example, boys and girls are thought to be different, so society treats them differently. This teaches the children to act differently and they do (Ore, 2003). In the second dialectical stage, objectivati on, there is an objective reality to the social world that is created and language gives meaning to our experience (Berger & Luckmann, 1967). Objectivation occurs when the products created in the first stage, appear to take on a realit y of their own, becoming independent of those who created them. Peopl e forget that they themse lves are the creator of their social and cultural environment and of all interpretations of reality. The products have developed an objective existence and they become another part of reality, to be taken for granted. For example, most of us develop and take disability categories for grant ed, employing an essentialis t perspective that views disability categories as the result of biological or genetic factors (Ore, 2003). The third and final dialectical stage, internalization, initially occurs through socialization of a child by the social wo rld it was born into (Berger & Luckmann,

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52 1967). The ontogenetic process of internaliz ation is the never-ending induction of the child into the objective world of a societ y. Primary socializat ion is the process, through which people learn the objective facts about the cultural products created. After primary socialization is secondary soci alization, were inst itutional values or institution based subworlds, are internalized Socialization is the process of social interaction, where one lear ns the ways of society and ones specific roles in that society (e.g., son, husband, father, boss, long distance runner). With each role, part of an individuals subjective conscious ness absorbs a different set of rules and expectations attached by society to that ro le (Ore, 2003). In America, as in many countries, the mass media operates as a very important socialization mechanism. What we see/hear from the media, and how it is presented, delivers important messages about whom and what is or is not valued. Internalization is the foundation for comprehending the behavior of others and understanding of the world as a social reality (Berger & Luckmann, 1967). Social Construction Framework The social constructionist anticipates that when studying a social program, the different stakeholders will possess dissim ilar perspectives of the program, due to their personal experiences with the pr ogram. The researcher, using a social constructionist framework, endeavors to des cribe the diverse perceptions utilizing open-ended interviews and observations. W hen examining the different realities and implications for the program, the researcher does so without judging which of the realities is more real (Guba & Li ncoln, 1989; Ibaera & Kitsuse, 1993).

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53 Reflexivity is the effort of: questi oning ones own believes abandoning what appears to be evident, paying attention to di verse framings of reality, and laboring to understand the end results of mu ltiple standpoints (Gergen, 1999). Realizing that the goal of an assumpti on-free sociology is an elusive goal, social constructionists do not believe in t he possibility of valuefree foundations or sources of knowledge, nor do they conc eptualize a clear objective-subjective distinction, or a clear distinction be tween 'knowledge' and 'reality' (Ibaera & Kitsuse, 1993). It is the fo cus on the interpretive proce sses of a constructed social world and the substantive meaning, c ontexts, and conditions that shapes inhabitants actions. Through the use of social constructionism, the researcher attains the freedom to take part in the social change itself, referred to as participatory action research (Gergen, 2003). Social constructionists accept that t here are general standards of scientific inquiry, but they are only used as rough guidelines, that may be interpreted in different ways according to demand (KnorrCetina, 1981). Every new research project raises new questions, which the researcher has to be decided whether, the existing rules should be applied. Social constructionists argue that even the most certain knowledge (self-knowledge) is open to contextual variation, multiple interpretations, momentary fl uctuation, skepticism, and doubt leading some social psychologists to argue that it is fundament ally impossible to develop an accurate representation (Gergen, 1982). Theories and methods used by constructionists are concerned with the analysis of how people assign meaning to their world genera lly accept that (Ibaera

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54 & Kitsuse, 1993): (1) the process of under standing is a product of culture and history, and dependent upon existing soci al and economic arrangements within a culture; (2) the current a cceptable ways of understanding are not due to objective observations of the world, but rather to the social processes and interactions when people are engaged with each other; and (3) these negotiated understandings can take many forms and consequently t here are a variety of possible social constructions of the world. Researchers using social construction ar e trying to explain, the process by which people come to describe, explai n, or otherwise account for the world in which they live (Gergen 1985: p. 3-4 ). By examining words used by people to explain how they understand the world, t he researcher can identify social and political processes influenc ing how people define words and explain events. The implications of the defin itions and explanations provided by people, often determine who benefits or loses in societ y. Social constructionism has been influenced, modified, and refined by other intellectual movements such as the social study of science, ethnomethodology, fe minism, post-structuralism, narrative philosophy, post-foundational ph ilosophy and post-positivist philosophy of science among others (Burr, 1995). Constructionists argue that there were two major flaw s with defining social problems as an objective condition: subjecti ve judgment is required to identify a social condition as problematic and objectivism did not provide foundations for more general theories of social problems, due to the labeling of conditions as social problems when the relationship was not significant (Best, 1995).

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55 Constructionists focus on subjective judgment to characterize social problems in terms of claimsmaking by stakeholders. This approach offers a foundation for developing new concepts about cl aims, stakeholders, connections among claimsmaking campaigns, and social policies. Constructivism vs. Constructionism Gergen (1994) distinguished social constructionism from social constructivism in that neither the mind nor objective knowledge (truth) is possible. Easily confused, an important distinction between the two is that constructivism focuses on the meaning-making activi ty of the individual mind and constructionism focuses also include the collective generation [and transmission] of meaning (Crotty, 1998, p. 58). Constructivism examines the unique expe rience of how an individual makes sense of the world, with the conviction that each view of the world is as valid as anyone elses. Social constructionism, examines the bigger picture as it emphasizes the way our culture or communi ty shapes us. Everything is socially constructed as to what is acceptable and th ere is no set of fixed rules that would determine scientific action. Scientists m anipulate the very reality that forms the object of their discourse, in anticipation of the findings that they would like to obtain. Stam (2001) reminds us that there is no single social constructionist position.

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56 Strict vs. Contextual Social Constructionism Best (1989) proposes that a distinction be made between what he terms contextual and strict constructionism. C ontextual constructionists, focus on the process of claimsmaking and respondi ng, but are willing to make some assumptions about objective reality. Meanw hile, strict constructions equate social problems with processes of claimsmaki ng and responding to claims about putative conditions, make no assumptions about objective reality. The strict social constructionists, makes no assumptions about social conditions. A major assertion of strict constructionists is that research should be focused on the constructions, not on the reasons the constructions have arisen or how constructions differ from objective reality (Spector & Kitsuse, 1987). When researching social problems, the researcher should avoid making assumptions about social conditions and avoid using offi cial statistics, as they are not a complete illustration of objective reality (Holstein & Miller, 1993; Ibarra & Kitsuse, 1993). According to this view constructionist should restrict their examination to the perspectives of stakeholders, policymakers, and other me mbers of society. The genuine conditions in society are immaterial ; what matters is what the members say about those conditions. Strict constr uctionists focus on claimsmaking; seeking not to judge, but to understand. Jenkins (2001) di sagreed with Gergens proposal that for social constructionist researc her: the chief locus of understanding is not in the psyche but in social relationships. All psychology traces to mental origins,

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57 might be explained by social constructioni sts, through micro-social processes (Gergen, 1997, p. 724). Sismondo (1993) suggested t hat a mild or contex tual constructionist approach accepts that distinc tly social processes are involved in the construction of institutions, knowledge, and subjective realities, and draws attention to these social processes. Contextual constr uctionists, argue that understanding claims concerning social problems, often depends upon understanding their context in the culture and social setting (Best, 1993, 1995). Claims emerge at particular historical moments in particular societies; they are made by particular claimsmakers, who address particular aud iences. Claimsmakers have particular reasons for choosing particular rhetoric to address particular problems. The issue is if these assumptions somehow damage t he analysis, the constructionist must be prepared to acknowledge and defend the assumptions made. Viewing official statistics as socially constructed, the cont extual constructionist is likely to enquire as to how they are used by s. A re view of empirical studies using the constructionist approach, indica te that the majority of studies employ a mild or contextual constructionism (Burningham & Cooper, 1999). According to Best (1995), by default all constructionist anal ysis becomes a form of contextual constructionism. Criticism of Social Constructionism Social construction is not without its cr itics. Some sociologists argue that constructionists focus on claimsmaking igno res a far more important subject: the

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58 harmful social conditions that are the real social problems. Constructionists contend that social conditions are harmful, only because someone made persuasive claims to that affect (Stam, 2001). Objective sociologists point out that c onstructionist theoretical assumptions are contradictory. Scientists guided by the traditions of positivism, choose research methods consistent with the c onstruction of human beings, as passive organism (Sarbin & Kitsuse, 1994). Human behavior is in principle, predictable from knowledge, of the person and situatio n. In defense of their belief that objectivism is the sole scientific paradigm some sociologist attack constructionism for their use of subjectivity, or they ar gue that objectivism and constructionism can be reconciled. Best (1995), argues t hat these individua ls misunderstand the nature of constructionism, which goes beyo nd just acknowledging that definitions of social problems are subjective. By defining social problems in terms of claimsmaking, constructionists set a new agenda for those who study social problems. Some sociologists argue that construc tionism is internally inconsistent (Woolgar & Pawluch, 1985a). Noting that while constructionists identify their focus as subjective judgments, their analysis usually assumes some knowledge of objective condition. Woolgar and Pawlu ch (1985b), hold that researchers of constructionist theory must be devoid of social and cultural presumptions, having no interpretive frame in which to record their observation. Otherwise they are ontologically floating in midair (i .e. ontological gerrymandering).

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59 It has been argued that constructionism often involves the selective application of skepticism, allowing or denying the existence of phenomena according to the analysts attitude toward s them (Woolgar & Pawluch, 1998). The concept of ontological gerrymandering, forced constructionist to split ranks into two camps: strict and contextual constructionism. According to Ore (2003), Berger and Lu ckmann were actually examining the reciprocal relationship that exists between people and society. Through their creative activity, humans construct the realities of society. Once created social realities become the external, objective rea lity to individuals in that society. The individual then internalizes this realit y, so that it becomes part of their consciousness. People create society, but society, in turn, creates people (Ore, 2003, p. 62). Social constructionists and experimenta lists theorists fundamentally agree, with the notion that people are very ac tive in the creation of symbolic understanding of the world. The main difference between the two viewpoints is that social constructionists have adopted the postmodern thought that depicts reality as arbitrary and relative; whereas ex perimentalists believe that processes of social construction are dependent on the persons cognitive method and by the current social context (Jost & Kruglanski, 2002). A social construction, or social constr uct, according to the school of social constructionism, is an idea, which may appear to be natural and obvious to those who accept it, but in reality is an inventi on or artifact of a particular culture or

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60 society (Gergen, 1985). The implication is that social constructs are human choices, rather than la ws of God or nature. Shotter (1993a, 1993b) focuses on the dynamic, interpersonal processes of construction, which he refers to as joi nt action. Members of a group provide the linguistic productions and activities (first order constructs), which can in turn be subjected to theoretical scrutiny (second order constructs). A construct is an abstract statement, about relationships invo lving intangible processes, which refer to underlying psychological realities (Tzeng, 1991). Each construction can invite a different kind of action from human beings, thus some constructions of the world can help maintain some patterns of soci al action and exclude others (Burr, 1995; Gergen, 1985, 1994). Two constructs that are substantial in this theoretical framework are culture and so ciety. Culture refers to the shared and learned knowledge, beliefs, values, norms, attit udes and behaviors that people within a society share. Society consists of peopl e bound together by social and cultural commonalities. A society also includes people within a geographi cal location that interact with each, other guided by their culture (Loustaunau & Sobo, 1997). Our modes of description, explanati on and representation are derived from relationships and all understandings of relationships are an interchange of history and the cultures existing social conditions (Gergen, 1999). Driven by the researchers worldviews or belief systems, research turns out to be a socially negotiated process (Guba & Lincoln, 1994). According to Burr (1995), social c onstructionism asserts that, because people are products of social processes and since these social processes and

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61 conditions are constantly changing throughout history, people are forced to constantly change as well. Since there is no ultimate truth, we must try to understand where our current ways of understanding come from. In a recent review of the literature, on attitudes and social judgment, it was concluded that researchers have moved increasingly toward a conceptualization of attitudes as temporary constructions (Schwarz, 2000). Discourse Discourse is a way of talking abou t and understanding a particular aspect of the world. Foucaldian theory suggests that discourses can be powerful, in the sense that they can lead to the norma lisation of some ideologies and the abnormalisation of others, thus legitimati ng some actions over others (Burr, 1995; Darier, 1999). The crucial issue, being that the groups involved in discourse, are differentially empowered. The focus is on discursive practices and how they are embedded in social relations of power and i deology. How some will give authority to certain discourses, while subverting others. Thus, revealing the possible implications for future poli cy and practice (Ibaera & Kitsuse, 1993). So it should be possible to explore the so cial power and legitimacy of a particular discourse (Demeritt, 1998). Discourse analysis is just one among several social constructionist approaches, but is one of the most used approaches within social constructionism (Phillips & Jorgensen, 2002). Kitsuse and Spector challenged conventio nal approaches with their vision of social problems as social constructions, that is, the products of claimsmaking and

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62 constitutive definitional processes (Kit suse & Spector, 1973, 1975; Spector & Kitsuse, 1974). Claimsmaking is a proc ess where conditions are turned into problems through active promot ion. Claimsmaking consist primarily of participation on expert panels and committees, appearing in the news, and giving testimony at government hearings. In Iba rra and Kitsuses (1993) view, constructionist studies of social problems discourse can gainfully continue by distinguishing between four analytically discrete rhetorical dimensions that share common characteristics: rhetorical idioms, counterrhetorics, moti fs, and claimsmaking styles. Claimsmaking activities are directed at problematizing specific conditions and developing rhetorical idioms to reference the unique ways, in which their problematic status deserves public attention. Rhetorical idioms use language that pl aces condition claims in amoral context (Ibarra & Kitsuse, 1993). The effe ctiveness of the rhetorical idioms is drawn from the discursive materials they pr ovide to claimants to structure and lend urgency to their claims. If rhetorical idioms produce clai ms that are both rational and moral, then the community must either express sympathy or has acceptable reasons for being unsympathetic. There ar e two types of rhetorical idioms: entitlement and endangerment. T he rhetoric of ent itlement brings attention to the righteousness of ensuring, that everyone has equal institutional access. The rhetoric of endangerment is applied to condition-categories that can be expressed, as threats to the health and safety of the human body. Counterrhetorics are approaches taken by the community to argue against the depictions made by stakeholders (Ibarra & Kitsuse, 1993). Here the

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63 community either makes an a ttempt to deny the problematic status of the condition and/or prevent the call to action. Us ing sympathetic counterrhetorics, the community accepts that ther e is a problem in part or whole, but will block the request for corrective activities. Ther e are five categories of sympathetic counterrhetorics (Spector & Kitsuse, 1987): naturalizing, cost involved, declaring impotence, perspectivizing, and tactical crit icism. In naturalizing the problem, the community accepts the exist ence of the problem, but th ere is no call to action because the problem is accepted as inev itable. When the cost involved in correcting the problem outweighs the perceiv ed benefits, there is no call to action due to budgetary constraints. A community declares impotency, when it really does want to solve the problem but c annot due to lack of resources. When perspectivizing, the community takes the stance that the claim is the claimmakers opinion, separate from the actual state of affairs. Usi ng tactical criticism, the community acknowledges the claims m ade but object to the methods s used in communicating the problem. The community uses unsympathetic c ounterrhetorics, when denying that there really is a problem and there is no need for corrective activities. There are four categories of unsympathetic counterrhetorics: antipa tterning, telling anecdote, counterrhetoric of insincerit y, counterrhetoric of hyster ia (Spector & Kitsuse, 1987). Using antipatterning, the community mainta ins that the claim identifies isolated incidents, not a full-blown social probl em. When using a telling anecdote, the community denies the general ity of the problem. When the community uses counterrhetoric of insincer ity, it is suggesting that there is a hidden agenda. By

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64 using counterrhetoric of hysteria, the co mmunity is implying that the claimants claims are not rational or are emoti onal bases, rather than being based on a proficient evaluation of the state of affairs. The third type of rhetorical dimension, motifs are figures of speech operating as shorthand descriptions/evaluations of condition-categories (Spector & Kitsuse, 1987). The complex relationships between idioms and motifs require empirical explanation. Claimsmaking st yles, refers to the public r hetoric and the politics of claimsmaking. Claimsmaking styles are analyzed in the myriad circumstances in which social problems construction take place including demanding services, filling out forms, lodging complaints, filing lawsuits, calling press conferences, writing letters of protest, passing resolutions publishing exposes, placing ads in newspapers, supporting or opposing government al practice or policy (Spector & Kitsuse, 1987). Constructionist employs narrative as the root metaphor and looks at language and the use of rhet oric and how it influences peoples perceptions of reality (Sarbin & Kitsuse, 1994). Using a construction agenda Best (1987) suggested that truth claims, whether they be scientific or not should be analyzed contextually and in terms of the claims themselves, the stakeholders, and the claimsmaking process. By doing this Gergen (1994), followed Wittgensteins notions of terms acquiring meaning from their function within culture, suggesting that the researcher can critically analyze such claims by focusing on: how they function, in which rituals are they essential, what activiti es they facilitate and what activities they impede, and who is harmed and who gains by such claims.

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65 Claimmakers want to convince others t hat there is a social problem or that they have the solution (Best, 1995). Claim smaking is an act of communicating to different audiences: some try to identify and organize those directly harmed by the conditions described in their claims; others try to educate t he general public; and still others approach the policymakers who c an do something about the conditions. If the mass media can be convinced that their claims are newsworthy, the media will help spread their message. Use of the constructi onist perspective requires focusing on the claims themselves, the stakeholders, and the claimsmaking process (Best, 1995). Claimsmakers must be identified along with whom they represent. Social Constructionism and Public Health Spector and Kitsuse (1987) define social problems, as the activities of individuals or groups making assertions of grievances and claims with respect to some putative conditions (p. 75). Social constructionism shifted from a normative to an interpretative paradigm, wherein t hey were concerned not with the condition itself, but with the people who engaged in claimsmaking activities about the particular condition. Social construction theory has been us ed by a number of public health researchers in the past. This research includes but is not limited to: missing children (Best, 1987), child abuse (Pfohl 1977), wife abuse (Loseke, 1987), elder abuse (Baumann, 1989), gangs (Zatz, 1985), drug violence (Brownstein, 1991),

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66 alcoholism (Reinarman, 1988), and breast cancer (Mathews, Lannin, & Mitchell, 1994). In the mid 80s, the problem of missi ng children was brought to Americans attention through the appearanc e of photographs of those missing children on milk cartons, grocery bags, billboards, as well as televised coverage. Emerging rapidly, the social problem of missing children rece ived extensive coverage in the media, congressional testimony, and written material creating a rich source of data that allowed the analysis of the claims-making process (Best, 1987). Best found that claims-makers, presented the missing children as a social issue to the general public. Ultimately the general public demanded official policies with respect to public awareness, prevention, and control on a social basis to lessen or stop the problem. Social Construction Theory was used in a study of how social forces gave rise to the labeling of child beating as child abuse in the 1960s, which resulted in legislation banning child beating (Pfohl, 1977 ). The study gave consideration to three main data sources. The first source of data was an historic al investigation of the social reaction to child beating. T he second source of data was social values as related to the protection of children, when society discovered abuse of children as being deviant. The final source of data was factors asso ciated with how the medical profession reacted to the new devi ant labeling. In his results, Pfohl pointed out that the discovery of the batte red child syndrome in the sixties greatly benefited pediatric radiology and concluded that by labeling child abuse as a disease criminals were being pr otected from prosecution.

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67 Using a social constructionist framew ork to study violence against women, Loseke maintained that the definition of abuse given by shelter workers, were different from the subjective reality of the abused women (Losek e, 1987). Shelter workers often pinned the abus ed label on women who did not consider themselves abused and at times women viewed them selves as having been abused, to the disagreement of the workers. According to Baumann (1989), when it comes to constructing social problems the role of experts is becoming mo re and more important. In his study of the construction of elder abuse he asserts, claimsmakers seek to persuade readers to accept their conclusions about the necessity for intervention and the appropriateness of the proposed interventio n schemes (p. 65). The claimsmaking by professionals about social problems can limit the ability of those affected making them powerless to meaningfully parti cipate in and contribute to the making of policy. From his studies of Chicago youth gangs, Zatz (1985) suggests both the social problem of gangs and the response by police developed due to the historical composition of social, economic, and polit ical relationships developed over the years. Using a variety of data from t he media, interviews, and court records to explore the gang problem, Zatz fo und that when gang presence became undeniable, school, police, and other local officials became claimmakers of an interpretation of the situation that promot ed their vested intere st (Zatz, 1987). For example, the police departm ent used the gang problem to obtain federal funding for a specialized division. By blaming gangs for a variety of social problems the

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68 policy were allowing the community to avoi d its responsibility for finding solutions to problems associated why people join gangs. Brownsteins studies of drug violence in New York City, illustrated how the news media can be in command of the c onstruction of a social problem and influence responses considered by the co mmunity (Brownstein, 1991). The images presented by the media, project ed a perception of rising violence and random attacks, until an increasingly fearful middle-cl ass demanded a get-tough response. Brownstein suggested that the news media, as gatekeepers of information, have the power to influence the public perceived reality of social problems. The problem aris es when the media is used by official claimsmakers, whose goal is to distort t hat reality to their benefit. In his article The Social Construction of an Alcohol Problem, Reinarman (1988) provides an interpretation of how in the 1980s claimsmakers, Mothers Against Drunk Drivers (MADD), made drunk driving a major social issue. Founders of MADD admitted that the gr assroots movement did not happen in response to any increase in the number of drunken driving cases. Rather MADD members attribute their success in bringing drinking and driving into the public policy spotlight because, as a social pr oblem, legislators and the court system had for too long neglected the iss ue. Reinarman suggested t hat part of the success of MADD as an organization occurred because American public policy was beginning to systematically switch, from a paradigm of social welfare to that of social control. In a study of the social construction of the meaning of a personal diagnosis of advanced breast cancer, by rural bla ck women, researchers interviewed 26

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69 women after they entered the medical system in North Carolina (Mathews, Lannin, & Mitchell, 1994). Analysis of narratives provided insight into the process that occurs, when an individual tries to understand their personal experience with a disease, in relation to the pre-existing m odels of that disease maintained by their culture. The study also provided insi ght, into how individuals modify personal disease models, in response to new knowledge and how conflicts in the interpretation of the meaning of illness are dealt with. Targeted Populations Feminism, Functionalism, and Conflict Theories all approach social problems as objective conditions of the r eal conditions in the social environment that causes harm t. Approaches focusing on social problems, as objective conditions, looked at the actual condition s existing in the real world and did not focus on what people actually perceived as problems. Each approach to social problems as objective conditi ons, started with its own vision of what wais moral, with the researcher often feeling they could inform their audien ce as to how the world should work. Approaches to soci al problems as objective conditions, categorize a condition as a problem, because it violated theoretical beliefs about what behavior was appropriate in society. constructionist perspectives focus on how people come to hold one or another set of beliefs. The constructi onist approach focuses on what humans believe the world is. They ask questions such as: In shaping the world, which people did what, and where did they do it?

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70 For example, the researcher usi ng an objectivist approach when studying disability would view disability as a soci al, condition to be measured. Statistics would be gathered on variables, such as, th e size of the disa bled population or what caused people to become disabled. Using a constructionist approach, the researcher would focus on what claims stakeholders were using to bring disability to the publics attention, how those clai ms personified the disabled, and how the public and policy-makers responded to these claims (Strauss & Corbin, 1997). The philosophy of social constructionism looks at how beliefs and understandings taken to be objectively real by people in their daily encounters are subjective constructions of public t houghts, words, and interactions. Social constructionism emphasizes the centralit y of language, thought, interaction, politics, history, and culture in the ma king of human meaning in lived contexts (Danforth & Rhodes, 1997, p. 359). The soci al construction of a target population refers, to the cultural characterizations or popular images of people or groups, whose behavior or well-being are directly affected by public policy. There is a recognition that shared characterist ics, become socially meaningful in distinguishing or targeting a population of people, from t he rest of the community. These characterizations are normative and evaluative; portraying groups in positive or negative terms through symbolic language, metaphors, and stories (the attribution of specific, valence-ori ented values, symbols, and images to the characteristics (Edelman, 1988). In contrast to traditional approaches, t he social model of disability has argued, people with accredited (or perce ived) impairments are disabled by

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71 societys blatant failure to accommodate their needs (Barnes, Mercer, & Shakespeare, 1999, p. 2). This approach do es not deny that there are differences, either physical or mental, between people, but rather argues, the nature and significance of these differences depend on how we view and interpret them (Began & Taylor, 1994, p. 8). Disability, in th is case, is considered to be a social construction. Social constructions about particula r groups of people are stereotypes created by politics, culture, socialization, history, the media, literature, economics, and religion (Schneider & Ingram, 1993, p. 335). Positive constructions include images such as deserving, intelligent, honest, public-spirited, and so forth. Negative constructions include images su ch as undeserving, stupid, dishonest, and selfish (Schneider & Ingr am, 1993, p. 335). Social constructions of target populations are empirical observable fa cts can be measured. Data can be generated by analysis of the sym bols contained within texts, such as legislative histories, statutes, guidelines, speeches media coverage, and analysis of the symbols contained therein. Social constructions can also be ascertained from interviews of stakeholders, policy-makers media representatives, members of the general public, and persons within the target group itself. For the social constructionist any pertinent data is important in the examination of the process by which social, economic and political forces shape and give meaning to categories. Target populations are assumed to have boundaries that are empirically verifiable and to exist within objective conditions, even though those conditions are subject to multiple evaluations (Edelman, 1988). All conceptions, assertions, and

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72 accounts of ordinary members express thei r understanding of thei r everyday world and must be entertained without regard to va lidity (Sarbin & Kitsuse, 1994). Being seen as the object of medical treatment evokes the image of many ascribed traits, such as weakness, helplessness, dependency, regressiveness, abnormality of appearance and depreciation of every mode of physical and mental functioning (Zola, 2003, p. 440). These traits becom e permanent characteristics when associated with individuals having chronic illnesses and/or disability (Longmore, 1985). According to Longmore, t he person with a chronic disability is seen as incurable and is considered by society to be helpless and dependent on others. In looking at t he reality of being a person wit h a disability the social constructionist views disability, not in physical terms, but rather as social designations made by people th rough their interactions and relationships (Danforth & Rhodes, 1997). Fundamentally, disability is defined by public policy. In other words, disability is whatever policy says it is. This observation embodies an authoritative recognition, that a disability implies a problem or a disadvantage that requires compensatory or ameliorative action. The concept does not seek to specify, whether the problem is locat ed in the individual or in the environment. Nor does it attempt to identify the rationale, for meas ures that are taken in reaction to the perceived disadvantage. Nonetheless, such policies represent an official belief, that a disability constitutes a disadvantageous circumstance that obliges a public or a private agency to offer some type of response (Hahn, 1985).

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73 The U.S. Bureau of Census identifie s disabled individuals as having an activity limitation, who use assistance, or who perceive themselves as having a disability. The Americans with Disabilities Act, defines a person with a disability as (American Disabilities Act, 2005): 1) a person with a ph ysical or mental impairment that substantially limits one or more major life activities; or 2) a person with a history of physical or mental impairment; or 3) a person who is regarded as having such impairment. When speaking of the di sabled population we ar e talking about a very diverse group of persons, not only in terms of type and severity of disability but also in age, race, ethnicity, socio-economic status, personality, and preferences. In 1994, 54 million people in the United States, or roughly 21 percent of the population, possessed some level of disab ility (U.S. Bureau of the Census, 2004). For some this disability is of limited durat ion, such as a broken arm or leg but for many the disability is chronic, such as a missing limb or breathing problems requiring oxygen. Data obtained in the 2000 Census reports, that one percent of Americans aged 25 through 54 requires some sort of assistance, to live in the community. As presented in Table 1, as age categories increases so does the percentage of individuals requiring assistance (U. S. Bureau of the Census, 2000). For those individuals who were 80 years of age or older, 34.9 percent needed assistance to live in the community. While not denying that policy definitions play an important role, in the social construction of disability, it is clear that these definitions are themselves socially

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74 constructed. And further, core and per ipheral ideologies have influenced this social construction to the point where di sability has become a problem of individual disadvantage, to be remedied through the development of appropriate social policies (Oliver-Smith, 1986). ________________________ _____________________ _____________________ Table 1 Disability Among Individual s Aged 15 and Older by Age and Severity: 1997 (Percent of population in each age group). ________________________ _____________________ _____________________ Percent needing Age range assistance 15-24 1.0 25-44 1.9 45-54 3.6 55-64 5.9 65-69 8.1 70-74 10.5 75-79 16.9 80+ 34.9 ________________________ _____________________ _____________________ Source: U.S. Census Bureau, 1996 Panel of the Survey of Income and Program Participation, August Nove mber 1997. Found 10/09/05 at http://www.census.gov/populat ion/pop-profile/2000/chap19.pdf ________________________ _____________________ _____________________ Societal values are directly influenced, by everyday experiences in changing ecological and sociopolitical contexts (S mith & Schwartz, 1996). Cultural values

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75 are used in deciding and justifying to other s, which behaviors are appropriate. From a political point of view, cultural values create priorities, affecting how a community allocates its social and financ ial resources. Cu ltural values as promoted by powerful community leaders are cr itical in the plann ing process, when serving target populations, such as the disabled or vulnerable. Social movements have assumed a variety of forms and levels of organization, ranging form forma l social movement organiza tions to informal social movement communities to loosely struct ured collective action (McCarthy & Zald, 1977; Buechler, 1990; Oberschall, 1993). These different forms are similar in that they allow conflict with an established adv ersary, and challenge the limits of the system, in which action occurs (Melucci, 1996). As a result of these dynamics, social movements have played an integral part, in the making of the modern world (Buechler, 2000). Consequently, it is import ant that stakeholders for people with disabilities make their voices heard, by those in the community involved in developing social policy. When deciding between two forms of conceptualization, the winner will often depend on having the pow er, to impose your definition of reality onto others (B erger & Luckmann, 1967). Summary An investigation into the qualitative literature suggests that social construction theory, if appl ied properly, can provide a better understanding of how communities target their vulnerable spec ial needs population as being worthy of special consideration during a disaster. This is acco mplished through the study of

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76 the voices of program participants, comm unity stakeholders, and key-informants in the community. It has been argued that a qualitative approac h can be utilized, to capture the richness, of the decision process to ev acuate (Quarantelli, 1992). Most of the disaster and evacuation studies, found in a re view of the literature were post hoc. Thus researchers have studied post-disaster populations that will never quite return to a normal pre-disa ster state (Stallings, 2002). Stallings (2002), in his book, Method of Disaster Research, refers to the neglect of disaster researchers in conducting exploratory studies into problem areas, where little empirical research currently exists. Lombardi (2001), in a review of the imp lications of using a constructionist methodology when studying the news media co verage of disasters; suggests that researchers look at risk and events a ssociated with risk, as the process about events not as objective facts. In order to understand risk, the researcher first must understand the interactions among the general public, experts, and policy-makers. This understanding of risk can only be accomplished, by studying the interactions that occur in discourse about risk, rat her than on the content of the medias information about risk. The protection of vulnerable populations living in the community with chronic health conditions, from the harmful effects of a disaster, is a social and public health issue. Stakeholders for the various vulnerable populations are becoming more aware of the need to advocate that di saster plans at the local, state, and federal levels to include procedures for protecting these populations during a

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77 disaster. For those elderly and/or disabled individuals, who have chronic conditions requiring constant medical attention, community planners will have to develop ways of providing access to continuing healthcare even in the event of a disaster.

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78 CHAPTER III: METHODS According to Stallings (2002), while qualitative research is useful for describing the individuals subjective exper ience of disasters, researchers tend to use it to document objective features of disasters such as interorganizational relationships. To the social constructioni st, language actively produces, constructs and shapes our experience. From the social constructionist point of view, when examining risk, the researcher looks at the process of communication about disasters, rather than as objective facts reported by th e media (Stallings, 2002). Different types of social construction focus on: (1) Social relationships such as friendships, neighbors, and family relationshi ps; (2) shared physical artifacts such as shelters; (3) shared social goals and pr ojects such as helping the elderly or disabled; and (4) shared cultural norms and traditions such as care of family members (Mathews, Lannin, & Mitchell, 1994). Introduction This research study was designed to develop an understanding of how stakeholders in Hillsborough County, Flori da constructs a definition of special needs, develops knowledge of people with special needs, and provides for the

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79 special needs population in the event of an evacuation for a hurricane. Using Social Constructionist Theory as a framework and Grounded Theory methodology, data were collected using published literatur e, media materials, focus groups, and in-depth, semi-unstructured interviews to provide insight into those social interactions influencing knowledge and perception of the SpNP, among stakeholders and program participants. Unlik e previous studies, were researchers examined the evacuation of a communitys population as a whole, this study specifically examined community behavior in evacuating those individuals with special needs. Delineating the methodology used in th is qualitative study, this chapter has been divided into seven sections: (1) a description of the study design implemented, (2) a review of the Gr ounded Theory methodology used to direct data collection, (3) a depiction of the qual itative tools and procedures used for data collection, (4) a portrayal of the study sa mple and recruitment procedures, (5) tools used to collect qualitative data, (6 ) data management procedures, and (7) an explanation of how data fo r this study were coded, analyzed, and interpreted. Study Design This research study utilized Grounded Theory methodology for the purpose of collecting, managing, coding and analyz ing qualitative data gathered from a series of focus groups and in-depth, semi -unstructured interviews. For the purpose of this exploratory study, Grounded Theory methodology had several advantages over other qualitative traditions of inquiry or a quantitative design.

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80 Also, the theoretical framework as pr oposed by Social Construction Theory contains advantages over other contem porary theories used in public health research. The theoretical framework from Social Cons truction Theory guided the evolution of a description of the social concept of a special needs population and the portrayal of the processes that result ed in the decisions, as to what services the community provides to the special needs population, durin g an evacuation for a hurricane. 1. Application of Grounded Theory met hodology enabled the researcher to begin the building process, that was used in the effort to descr ibe how Hillsborough County developed its definition of s pecial needs and how stakeholders and claimsmakers negotiated what services to provide through the SpNP, in the event of evacuation for a hurricane. Us ing a methodology that helps build the foundation of information permitted the dev elopment of new theoretical models as opposed to testing a theory is important in this situation, where there is very little empirical information on the efforts taken by a community, to protect the special needs population dur ing evacuation for hurrica nes. In contrast to previous studies of evacuation, wh ich have focused on the population as a whole this study focused only on those individuals having special needs, limiting their ability to ev acuate with the general population or shelter in their homes. 2. Following Grounded Theory methodology, seve ral qualitative tools were utilized in the process of collecting data on t he SpNP, from a number of different sources. There was a review of the published literat ure and media materials;

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81 40 in-depth, semi-unstructured interv iews; and three focus groups. This triangulation of data, allowed the examinat ion of the SpNP fr om the views of a variety of community stakeholders, incr easing the validity of the data collected In contrast, previous research into evacuation has either been quantative in nature or utilized only the qualitative technique of asking predetermined openended questions (Creswell, 1998). 3. A Social Construction Theory framew ork helped provide insight into how a persons understanding of the need fo r an SpNP, is a product of that individuals culture and experiences; and how societys current social and economic situation shapes program devel opment. The social constructionist approach helped the researcher understand t he reality of a SpNP as socially constructed by a community by exam ining personal experiences, opinions, knowledge, attitudes and behaviors. 4. Using Social Construction Theory facilitated access to the public discourse concerning important and timely matters such as community development of a SpNP. By understanding Hillsborough Co untys experiences in developing a SpNP, it may aid other communities, in the development of their own program. 5. An advantage of combining Gr ounded Theory methodology and a Social Construction Theory framework is that bot h accept the existence of multiple realities, held by the various stakeholder s in the community, which facilitates a richer description of the program through the different definitions of the SpNP. Stakeholders such as the media, program participants, and community claimsmakers all have their concept of special needs and what services should

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82 be provided in the event of evacuation. Both theories also maintain that because of the multiple realities held by researchers, there is always more than one way to interpret any qualitative data collected. 6. Another advantage of combining Gr ounded Theory methodology and a Social Construction Theory framework is both pr omote the belief, that what is being studied is subject to change over time. Wi th this in mind, the results of this study are similar to taking a snapshot of the SpNP, a program that will continue to change over time as social condi tions, economics and knowledge change. Grounded Theory Methodology Qualitative research is generally induc tive, rather than a deductive form of analysis, such as quantative research. In deductive analysis, the researcher creates a hypothesis about a problem and then collects data to test that hypothesis. The analysis of the data, info rms the deductive researcher if the preestablished thoughts, on the problem were correct or erroneous. Whereas the inductive researcher, without developing pre-established thoughts, collects data to explain the problem. Analysis of data, then guides the inductive researcher, in the development of theory to expl ain the data. Inductive ana lysis is a very important tool to use when there is little or no t heory on a particular problem, such as how a community provides for the protection of its special needs population, during hurricane evacuation. Once enough inductive analysis on a problem has been performed, the research community can then begin the deductive research process, of testing the newly established hypotheses and theories. In his definition

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83 of qualitative research Creswell (1998), emphasized the need to develop a multifaceted, holistic portrait exhibiting al l the complexity of the social problem under study: Qualitative research is an inquiry process of understanding based on distinct methodological traditions of inquiry that explore a social or human problem. The researcher builds a comple x, holistic picture, analyzes words, reports detailed views of informants, and conducts the study in a natural setting. (p. 15) In quantitative studies, statistical power is the standard used to guide the evaluation of the sampling techniques. The sampling techniques used by the researcher in a qualitat ive study are evaluated by their clarity, which is the goal of allowing others to understand t he exact details of: how the studys sample was accrued, what different t heoretical theories were c onsidered during the analysis process, and how constraints influencing t he selection the sample were identified and worked through (Labors & Rubinstein 1995). The responsibility of the qualitative researcher is to provide a luci d, explicit understandi ng and definition of all constructs used in the development of theory (Neuman, 2003). Ultimately clarity is contingent on the researcher using analytic tools that are powerful and flexible enough to collect kno wledge that is creditable. When conducting a qualitative study, research design should be a reflexive process operating through ever y stage of a project (Hamersley & Atkinson, 1983, p. 28). The practice of being reflexive hel ps qualitative researchers be more selfconscious, so that the research procedure ac tually constructs reality as much as

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84 describes it (Gubrium & Holstein, 1997a). Be cause qualitative research requires a good theory of inquiry that is on go ing and remains flexible enough to accommodate new evidence, it can never be considered a finished product (Tzeng, 1991). For the researcher Grounded Theory meth ods have guidelines that must be followed by the researcher in their: (a) examination of social process under study, (b) collection of valid data, (c) management of the data analysis procedure, and (d) development of an abstract theoretic al framework as an explanation for the social process under study (Charmaz, 2002). Grounded Theory allows the researcher the freedom to use several methodology tactics during the collection and analysis of data (Glaser & St rauss, 1967; Charmaz, 2003). There are two major forms of Grounded Theory methods: constructivist and objectivist. The constructivist approach postulates that data are created by the shared experiences of the researcher, st udy participants, and the relationship that they develop during the study directs anal ysis of the data and its interpretation (Charmaz, 2000). Grounded theorists follo wing the objectivist approach assume that data exist in the world as objective facts and the researchers goal is to discover these facts through the careful appl ication of rigorous methods (Glaser & Strauss, 1967; Strauss & Corbin, 1990). Grounded Theory method is followed as new theoretical concepts are discovered during data analysis or there is the need to clarify categories, the researcher has the freedom to redirect future inquiry through theoretical sampling (Creswell, 2003). Through constant com parison of the categories and properties,

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85 followed up by theoretical sampling the researcher redefines categories and the interrelationships between those categorie s. Grounded Theory requires that the researcher take control of data collection and analysis, by looking for ideas in the data, developing new analytic qu estions and then returning to the field to gather focused data to fill in conceptual gaps ar e discovered. Consequently the ongoing simultaneous process of data collection, data analysis, theory development and modification, expansion or reframing of the research questions, and identification of threats to validity, each have an e ffect on the other. Thus, when using Grounded Theory the research design is so mething that continues during the entire study and it is very possible that the research questions presented, when a study was proposed will change and/or be added to as the study progresses over time (Maxwell, 1996). Data Collection Procedures and Tools Grounded Theory Data Collection Tactics Several grounded theory tact ics, were used in this research study. Analysis of data began immediately and continued to as long as the project was active. Another tactic used in order to discover wide-ranging patterns in the data, was to cultivate themes or cat egories and generate theory, as it became apparent from the data. During data analysis, as the presence of different basic social processes were identified the researcher was abl e to inductively develop theoretical frameworks through the construction of new abstract categories, which then were merged in the effort to clarify caus es, current conditions, and ultimate

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86 consequences (Strauss & Corbin, 1998). The advantage of being able to progressively focus interviews, allowed c hange in theoretical standings according to what information was presented by new data, giving the study theoretical sensitivity (Glaser, 1978, 1992). Glaser and Strauss (1967) suggested, Generating a theory from dat a means that most hypotheses and concepts not only come from the data, but are systematically worked out in relation to the data during the course of the research (p. 6). Another grounded theory tactic was to perform the coding process during data analysis. There are several steps when coding the collection of raw text; selection of relevant text, recognition of repeated ideas, discovery of themes, development of theoretical constructs, wr iting of the theoretical narrative, and identification of research concerns (A uerbach & Silverstein, 2003). During the coding process the researcher moved from the raw text to research concerns in small steps, each step slowly building theor y. First the raw text was read and cut down into small, manageable chunks. Chun ks of text were examined for content related to research concerns. Relevant text was kept for further observation and the rest of the text discarded. Examination of the rele vant text across participants in the study, presented similar words and phrases used to express the same ideas. When groups of repeating ideas having so mething in common were discovered, they were then organized into themes. The researcher then took the themes and organized them into more complex theoretic al constructs. Finally, the researcher organized the theoretical constructs in to a summary of what had been learned

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87 about the research topic of interest, a process referred to as a theoretical narrative (Creswell, 1998). Another tactic used by grounded theoris t is combining several qualitative data collection tools; focus groups, interviewing, and document analysis. As each source of data has strengths and weaknesses, using a combination of different types of data collection tools or triangulati on increases the validit y of the study, as the strengths of one approach compensat es for the weaknesses of another approaches (Marshall & Rossman, 1989). Written and Media Material The media plays an important role in the construction of meaning in our daily lives, to popular beliefs, and how the public responds to a social issue (Lantz & Booth, 1998; Loseke, 1999). Media refers to the major channels of communication audio, visual or pr int distribution systems that can simultaneously reach large numbers of people with the same message. Public and media discourse can create, sustain, or dissolve a collective definition of a situation and the collective identities associated with that definition (Buechler, 2000). By collecting documents from many sources, recording interactions, and then combining this with more directive interviewing, it is possible to build up much more comprehensive id eas of the way participants knowledge and beliefs on a topic are organized compared to using just one source alone (Potter & Wetherell, 1987). The number of publications providing emergency procedures for disabled persons, seniors and emergency managers is voluminous

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88 (e.g., Florida Department of Elder Affa irs, 2005; American R ed Cross, 1994, 1995; National Organization on Disabil ity, 2002; Florida Depart ment of Health, 2003). Strengths and Limitations of Written and Media Materials Materials from the media, are beneficial in allowing t he researcher to capture the widest possible variation in acco unts on a social issu e. The reviewing of official records provides information on actions taken by an agency, along with the agencies justification for and defense of those actions. One of the most important advantages of co llecting naturalistic records and documents is the almost complete absence of researcher influence on the data. Transcripts of everyday conversations, news reports, m aps, legal documents, community plans, scientific papers, letters, and official docum ents are features of the social fabric that the researcher has had no part in producing. However, when using material not self -generated, the researcher must be aware, that many individuals will misuse st atistical results to su pport their position (Patton, 2002). Patton maintains that t he researcher must keep in mind that the media has a tendency to perpetuate the myth s of a culture and that the media is a forum, that competing intere sts manipulate in their e ffort to gain the publics backing. Focus Groups A focus group is an interview with six to eight people simultaneous in a permissive, non-threatening environment (Krueger & Casey, 2000; Morgan, 1997).

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89 A focus group provides information about peoples opinions, attitudes, experiences, and perspectives on a pre-sele cted topic in an effort to discover not only what knowledge participants have about a concept, but also how they think about it, and why they think in the particula r way they do (Morgan, 1997). The goal of the focus group is saturati on, or the point at which a dditional data collection no longer generates new underst anding (Glaser & Strauss, 1967). Use of a more structured form of interview is the quickest path to saturation, helping to decrease the number of focus groups required. Strengths and Limitations of Focus Groups Focus groups can be a useful starti ng point for developing questions that will later be used in individual semi-structured interviews. Through focus groups the researcher can learn about peoples opinions, attitudes, experiences, and perspectives and observe interpersonal intera ctions on a topic. The trademark of focus groups is the use of a small group of people, to produce of data and insights that would not be as accessible without gr oup interaction, as participants respond to the comments of other group members (Morgan, 1997). During the focus group, comparisons that participants make among each others experiences and opinions are a valuable source of insights, into complex sets of behaviors and motivations (Morgan & Krueger, 1993). Since the researc her can direct discussion in a focus group, a large amount of data can be co llected, in a limited period of time. Focus groups do have limitations, in that they are limited to verbal behavior, in what is an unnatural social setti ng (Morgan & Krueger, 1993). Focus groups

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90 provide less depth than a personal interview, on a given participants experiences and opinions. Since the interaction is created and managed by the researcher, one cannot be sure of how natural the inte ractions are. The presence of the moderator affects the behavio r of the participants and the environment is not like that of sitting at the lunch table, di scussing the topic. The group itself may influence the nature of t he data it produces, as there is a tendency toward conformity, in which some participants wit hhold things that they might say in private (Morgan & Krueger, 1993). Semi-structured Interviews An in-depth interview is used, when the researcher seeks information and knowledge that cannot be obtai ned in surveys, informal interviewing or focus groups (Johnson, 2002). For this study t he SpNP client sample could not be interviewed in focus groups, due to their lack of access to transportation, or the fact that it was difficult for them to leav e their homes, due to physical limitations. As there is a need to get the participants perspective of the situation under study, the use of qualitative interviews al lows the researcher the opportunity for active intervention. Through the personal interview, the researcher to free to deliberately question an entire sample of people on the same issues, allowing greater comparability in responses (Potte r & Wetherell, 1987). When conducting qualitative interviews researcher s ask focused open-ended, questions and carefully listens to what the respondent conveys so as to hear the meaning of what is really being communicated (Rubin & Rubin, 1995). According to Spradley

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91 (1979), the qualitative interview allows the researcher the opportunity to analyze thick descriptions of a given social wo rld for patterns and themes used in the development of cultural inferences (p. 8). There are three main types of interv iews used in qualitative research: structured, semi-structured, and unstr uctured (Kvale, 1996). For structured interviews, predetermined questions are closed-ended and given in a strict formatted order. In a semi-structured in terview, the researcher knows what questions will be asked, but they are a sked in a predetermined order. Questions are not prepared for the unstructured inte rview and a participants response to one question provides the material for followup questions, making the process flexible. The researcher in qualitative interviews asks three different kinds of questions: main, probing, and follow-up. Pre-developed main questions, are used to start and guide the interview. When a respondents answer to a main question needs to be elucidated or the researc her wants additional examples, probe question are asked. When a response to a main question presents other implications, the researcher can ask follo w-up questions, to redirect the interview to gather information on the newly di scovered topic (Rubin & Rubin, 1995). The researcher conducts semi-structured interviews, when there is little information about the research topic. Se mi-structured interviews, differ from structured interviews in that: (a) while a questionnaire is prepared before beginning data collection all participants in the study are not asked the same questions in the same order, (b) probe and follow-up questions are freely asked, (c) areas that the respondent have covered in answering previous questions are skipped, and (d)

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92 data are collected and analyzed simultaneously (Gubrium & Holstein, 1997b). The semi-structured interview is different from the unstructured interview, in that there is a prepared list of questions developed bef ore collecting data (Merton, Fiske, & Kendall, 1990). Strengths and Limitations of Semi-structured Interviews The strength of the semi-structured interv iew, are the opport unities it offered the interviewer for flexibil ity, spontaneity, and responsiveness. Questions could be personalized to deepen communication to increase the concreteness and immediacy of the interview questions (P atton, 2002). Unlike a formatted list of questions the semi-structured interview, allowed the researcher to identify and pursue topics as they emerge during the interview (Rubin &Rubin, 1995). Using a semi-structured format, the participant res pondent is able to reveal themselves, by opening up and providing their perspective on the issue. Limitations of the semi-structured in terview are that there can be three possible sources of non-sampling errors attributable to how the researcher administers the questions (Bradburn, 1983). The first of the possible non-sampling errors is due to the behav ior of the respondent, as t hey may try to please the interviewer, by answering questions accordin g to what they think the interviewer wants to hear. Also, the i ndividual being interviewed may try to hide something personal from the interviewer or they coul d make errors in their response, due to a faulty memory.

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93 The second and third sources of non-sa mpling errors are due to the actions of the researcher. The second error is the method of questionnaire administration or the sequence or wording of the questions during the interview. The third source of non-sampling error is the interviewers characteristics or questioning techniques, which could impede proper communication of the questions. Because different questions produce different responses, data obtained from informal conversational interviews, can be hard to pull together and analyze (Patton, 2002). It should also be noted, that semi-structured interviews are both time consuming and labor intensive and boredom and interviewer fatigue can become an issue (Bernard, 2002). Study Population For this research study participants in cluded individuals from three different populations: stakeholders or r epresentatives of agencies t hat were members of the SpNP Planning Committee, clients who were participants or their caretakers in the SpNP, and elites or directors of agenc ies holding membership in the SpNP Planning Committee (the stakeholders boss) This section provided: (1) a description of Hillsborough County, (2) info rmation on the characteristics on the study populations for the three focus groups, (3) characteristics on the study population for the SpNP client semi-structured interviews, and (4) characteristics on the study population for the elit e semi-structured interviews.

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94 Description of Hillsborough County One of 64 counties in Flor ida, Hillsborough is locat ed in the central portion of the state along the Gulf Coast (see Figure 2). With a population of 1,133,152 in 2005, Hillsborough County is cons idered one of the more progressive counties in the state (U.S. Census, 2006). While English is the official language, many of the residents of Hillsborough County are Spani sh-speaking, along with a number of other languages. There are three incor porated cities in Hillsborough County: Temple Terrace, Plant City and Tampa, with Tampa being the largest and the county seat. With 1,048 square miles of land and 24 square miles of inland water, Hillsborough has an unusually high number of unincorporated communities covering 909 square miles and an unusual ly high percentage (66.2%) of its residents living in these areas (Hills borough County Planning Commission, 2005).

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Figure 2. Map of the 64 Florida Counties, with Hillsborough Colored Red. Characteristics of SpNP Stakeholder Population Community stakeholders or claimsma kers were those individuals who worked for agencies in Hillsborough County that were members of the SpNP Planning Committee. They r epresented the disabled in the development of the SpNP or had a role to play when the evacuation plan is oper ational (See Appendix A). The majority of these representativ es were middle to upper level management, whose job responsibilities in cluded disaster response planning for their respective agencies. Those agencies or business in Hillsborough County, which did not provide services to the homebound and were not members of the SpNP Planning Committee, were excluded from participation in the focus groups. 95

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96 Characteristics of SpNP Client Population It is difficult to provide a reliable accurate picture of the special needs population in Hillsborough County. Regist ration in the SpNP was voluntary and many in the community who qualify for par ticipation have not registered for one reason or another. It is felt that approximately one-half of the 10,000 individuals in the community who would qua lify for the SpNP have act ually registered. Also, those who register for the SpNP may or may not need the services for an extended period of time. Another problem, especiall y for those registered to be sheltered in a hospital is the high mortality rate. This makes sense, as many of these individuals have health needs serious enough, that they need services offered by a hospital. Characteristics of Elite Population The elites were those individuals who were directors of agencies that were members of the Hillsborough County SpNP Planning Committee, which represent the disabled or other special needs gr oups or had a role to play when the evacuation plan is operational (See Appendix A). The majority of these individuals were senior executives whose responsibil ities include the overall operation and vision of their respective agencies. Those agencies or business in Hillsborough County, which did not provide services to the homebound and were not members of the SpNP Committee, were excluded from participation in the elite in-depth, semi-structured interviews.

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97 Qualitative Data Collection Tools As an academic endeavor and due to the rigor required for a dissertation, this research study used the more ri gorous objectivist approach of Grounded Theory as proposed by Strauss and Corbin, as outlined in the second edition of their book Basics of qualitative research: Grounded Theory procedures and techniques (Strauss & Corbin, 1998). This study used three qualitative data collection tools: review of written and m edia material, focus groups, and in-depth, semi-unstructured interviews. Table 2, outlines the steps taken to collect data, for this study. The study commenced with a fo cus group of stakeholders in the SpNP Planning Committee. The focus group wa s followed by 10 semi-unstructured interviews with clients of the SpNP. After the analysis of data collected, from the first focus group and 10 interviews with SpNP clients, the second focus group with SpNP stakeholders was conducted and analyz ed, followed by a second wave of 10 semi-unstructured interviews with SpNP c lients. After analyzi ng the data from the second focus group and 10 interviews, the third and final focus group with SpNP stakeholders was conducted and analyzed, fo llowed by the third wave of 10 semiunstructured interviews with SpNP clients. After analysis of dat a, from the three stakeholder focus groups and 30 SpNP cl ient interviews, there were 10 semiunstructured interviews with the elite.

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98 ____________________________________ __________________ ____________ Table 2 Outline of Data Collection Steps fo r Proposed Study of the Special Needs Program. ________________________ _____________________ ___________________ Step 1: Review of written and media material. This is an ongoing process throughout the duration of the study. Step 2: Stakeholder Focus Group 1. Step 3: Random selection of 10 SpNP cli ents for in-depth unstructured interviews. Step 4: Stakeholder Focus Group 2. Step 5: Purposeful Sampling of 10 Sp NP clients for in-depth unstructured interviews. Step 6: Stakeholder Focus Group 3. Step 7: Purposeful Sampling of 10 Sp NP clients for in-depth unstructured interviews. Step 8: Elite In-depth, Unstructured Interviews. ________________________ ________________________________________ Written and Media Material During this study, as part of the anal ysis of community discourse concerning the concept of a special needs populati on and the development of a SpNP, there was an on-going review of news reports, maps legal documents, internet sites, community plans, scientific papers, and o fficial documents. By combining documents obtained from many sources and then using this information to help

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99 directed future interviews, it was possible to create a richer idea of the participants knowledge and perceptions of the SpNP. Stakeholder Focus Group The Hillsborough County EOC provided the setting, for the focus groups with the community stakeholders, who were claimsmakers for the special needs population. Permission was obtained, to use the EOCs media room, a medium size conference room. The three focus gr oups were scheduled, at a date and time when the media room was available. Part icipants were contacted by email three weeks in advance, to request t heir participation (see Appendix B). Though each of the three focus groups were designed to last 90 minutes, participants were told that the discussion w ould run two hours, to help cushion the disruption of the groups dynamics from either those who arrived late or those who left early. Chairs were arranged in a large circle, with the tape recorder placed on a small box, placed in the center. All focus groups followed a semi-unstr uctured platform with the assistance of an interview guide. The interview gui de for the first focus group was developed during the proposal stage, of this res earch study (Appendix B). The interview guide for the second focus group was not developed, until data from the first focus group and the first wave of SpNP clients semi-unstructured interviews had been analyzed. The questions for the second focus group were designed, to answer those questions that came out of the analysis of the firs t focus group and the first wave of 10 semi-unstructured interviews with SpNP clients (Appendix C). This

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100 was also true, for the interview guide for the third focus group, which was not developed until data from t he second focus group and the second wave of 10 semi-unstructured interviews with Sp NP clients had been analyzed (Appendix D). As participants arrived they were greeted, given a nametag, and asked to sign a consent form (Appendix E). At this time, each participant was given a business card, providing the researchers e-mail address and home phone number. Since the focus groups were taped, issues of privacy were very important. At the start of each focus group, participants were reminded that confidentiality was important and what was said in the focus group should stay in the focus group. At the conclusion of each focus group, participants were asked to contact the researcher, if they had any further insights. In the event that someone wanted to talk on a one-on-one basis, after each focus group the researcher remained in the room, until all participants departed. Sample Size and Participant Recruitment To serve as a sampling frame, an updated list of members in the SpNP was obtained from the EOC. The first focus group was conducted with HHAs that serve the Hillsborough County area and were member s of the SpNP. Only HHAs were included in the first focus group, due to the overwhelming number of HHA agencies represented in the SpNP and because of their face-to-face contact with the SpNP clients. There were 53 HHAs, operating in Hillsborough County, dur ing this study. Ten HHAs were randomly selected from t he SpNP membership list and contacted by email, to request their participation. Those agencies reporti ng that they could

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101 not participate, in the focus group, were replaced by randomly selecting another agency from the list who had not previously been contacted. For the second and third focus groups, the remaining agencies in the sampling frame were partitioned into 9 groups or strata, so t hat random sampling could occur in each stratum. To protect the confidentiality of participants in this study, the agencies in these 9 strata will not be identified. One representative from each stratum was then randomly selected, to participate in the focus group. In an effort to provide voice to advocates for the special needs population, two representatives were randomly selected, fr om the stratum contai ning not for profit agencies. A total of 10 stakeholders, were invited to attend each focus group. Recruitment for focus groups was accomplished, by emailing representatives from sele cted agencies and businesses involved with the SpNP and requesting their participation. The format of the email sent to all potential focus group participants, was the same except for the date and time to meet (Appendix F). Every effort was made, to ensure that both the second and third focus groups had a representative, from eac h stratum. Monetar y incentives were not provided to focus group participants. Non-Participation Stakeholders declining to participate in the focus groups, were asked what their reasons were for not participating, so that they could be systematically tracked. This information was tabulat ed and analyzed for patterns, since the reasons given for non-participation in the st udy, might provide further insights.

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102 Twenty-five HHAs were contacted befor e eight representatives committed to participating in the focus gr oup. There were two main reasons given by the HHAs, for not participating in the focus groups. Most HHAs claimed that they were so short staffed, that they could not affo rd to send a representative. Three HHAs offered to send a representative, but it turned out that they had scheduling conflicts, which did not permit them to attend. Even the ei ght HHAs that were represented in the focus group, mentioned they were also short staffed and manpower was a serious problem for thei r agency. In the second and third focus groups, three agencies (individuals) origina lly selected declined to participate, due to conflicting schedules and were replaced by another random selection, from their stratum. While it was hoped that focus gr oups would contain 10 participants, there were two cancellations in both the second and third focus groups at the last minute, limiting the focus groups to eight participants each. Even so each stratum had at least one member participate in a focus group, except for stratum number eight, which represented suppliers and businesses. SpNP Client Semi-unstructured Interviews With three waves of 10 interviews, t here were a total of 30 interviews, conducted with individuals with special need s who were registered in the SpNP. The SpNP clients were instructed to respond to questions and were asked followup questions, to elaborate on his or her res ponses. All interviews were conducted, in a setting and time, chosen by the SpNP cl ient. All but two participants chose to be interviewed in their homes. Two parti cipants chose to be interviewed in a

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103 coffee shop. Before starting the intervie w, each SpNP client was asked to read and sign a consent form (Appendix G). Afte r signing the consent form, participants were given 20 dollars and asked to sign a form, affirming they had received payment (Appendix H). The in-depth in terviews followed a semi-unstructured format, with the assistance of an interview guide (Appendix I). The interview guide covered general topics, such as: knowl edge of the SpNP, knowledge of evacuation shelters, past experiences with disaster s, and how they made their evacuation decisions. Inclusion and Exclusion Criteria Participants included in the study, were those individuals with special needs, who were registered in the SpNP. If t he individual with special needs was unable to communicate, in a coherent manner, thei r caretaker was asked to respond for them. Those SpNP clients unable to speak English were not included in the study, due to lack of funding for translation. T here was one case, wher e the participant spoke a little English and provided a translator, a bilingual friend and was allowed to participate in this study. Individuals with special needs living in a residential institution (nursing homes or Adult Living Fac ilities) were not included in the study, as Florida State laws require that t hese facilities have a disaster plan and management is legally responsible, for evacuating residents.

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104 Sample Size and Participant Recruitment Recruitment for the first 10 semi-unstr uctured SpNP client interviews was accomplished through random selection from the DOHs SpNP database. It was expected that some SpNP clients would chose not to participate; therefore 30 potential participants, were selected from the database. To comply with Health Insurance Portability and Accountability Ac t for the protection of an individuals right to privacy, a letter was sent to pot ential participants rather than contact by telephone, thus reducing the pressu re to participate in the study. Each selected participant was then sent a letter requesting his or her participation in the research study (Appendix J). A participant number placed in the upper, right hand corner of the letter, was used to identify and track potential participants. Information concerning the pr oposed study was provided in the letter. All potential participants were asked to call the researcher, give their participant number and state whether or not they wished to participate in the study. Those not wishing to participate were asked to call, give their participant number, and a no response. Those who wished to participate in the study were asked to leave their participant number, their name, and a phone number so the researcher could call to arrange an interview. In order to insure that they would not be included in any future mailing, those individuals expressing a desire not to participate in the study, had their names removed from the list of pot ential participants. Individuals refusing to participate could only be tra cked, if they voluntarily le ft a reason as to why they did not want to participate, in the study.

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105 After one week, individuals not respondi ng to the first letter were sent a second letter. If there were non-responde nts, one week after the second letter, a third letter was sent. Afte r four attempts, SpNP clients not responding were not contacted again. At this time new potent ial participants, were randomly selected from the SpNP database and more letters were sent out, until the quota of 10 participants was met. All interviews were conducted during daylight hours. After the interview, participants were thanked for their time, given the researchers business card and asked to call if they had further insight on the topic. After the first wave of 10 SpNP cl ients had been interviewed and the data analyzed identifying areas of interest, future SpNP par ticipants were selected, through theoretical sampling techniques. In t he first wave of SpNP clients selected from the SpNP individual s under the age of 18 wee not included. Thus, the second wave of SpNP clients included children who were assigned to Shriners, in the random sample. The third wave of SpNP clients, were se lected only from individuals registered to be evacuated to a hospital, due to their being under represented in the sample interview in the first to wave of interviews (Table 3).

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106 Table 3 Participation in the Three Waves of SpNP Client Interviews by Database Samples and Mailing. __________________________________________ ______________________ Database Samples Sample 1 Sample 2 Sample 3 Sample 4 Client Ma ilings Mailings Ma ilings Mailings Interviews 1 2 3 4 1 2 3 4 1 2 3 4 1 2 3 4____ Wave 1 1 1 1 1 2 2 1 X X X X X X X X X Wave 2 X X X 1 X X X X 2 3 X X 4 X X X Wave 3* X X X X X X X X X X X 1 2 4 1 X ________________________ _____________________ ___________________ Wave 3 of the client interviews has one participant who regi stered for the SpNP during the study and one participant who, though they would qualify for the program services, has never registered. Elite Semi-structured Interviews In-depth, semi-unstructured interviews were conducted among individuals in the positions of power in Hillsborough C ounty. Accuracy of the researchers interpretation of the data, collected from the focus groups and SpNP client interviews was accomplished when the resu lts were presented to elites in the community, who reacted to discoveries. E lites provided a second examination of the data, to help validity and reliability requirements. All interviews were conducted in the office, of the elite being interviewed. Before starting the interview, elites

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107 were asked to read and sign a consent form (Appendix K). The elites were instructed to respond to the informati on presented, then probed to elaborate on their responses. Monetary incentives were not provided. Inclusion and Exclusion Criteria Elites were directors of those agencies or businesses, associated with the SpNP Planning Committee. Interviews with elites, were arranged after the all the data from the stakeholder three focus groups and the 30 SpNP clients semiunstructured interviews, were analyzed. Th is gave the elites, the opportunity to give their opinion of the results, found to that point. Those directors of agencies or business who were not stakeholders in the Hillsborough County SpNP were excluded. Sample Size and Participant Recruitment Elites chosen to participate were cont acted either in pers on, telephone, or email and asked if they would consent to be interviewed for the study (Appendix L). A total of 10 elites were interviewed. Only one of the elites selected declined to participate in the study, saying that their workload was too heavy to participate, at that time.

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108 Maintenance of Qualitative Data Audiotaping To insure richness of data, all intervie ws were transcribed verbatim, to make sure that the data was deta iled and complex enough for a fu ll picture. Before each focus group, SpNP client semi-unstructure d interview, and elite semi-unstructured interview began and after obtaining oral co nsent to participate in the study, participants were asked if they would pe rmit the use of a tape recorder. After agreeing to be tape-recorded, a small Panasonic RR-QR180 tape recorder was used, to record the interview. This digita l tape recorder could hold up to 18 hours of conversation. No one refused to be audiotaped, after agreeing to be interviewed, for this study. The researcher transcribed the audiotape recording, of all interviews and focus groups verbatim, to assist in the elimination of bias and to start generating insight into the data. Due to the time factor, a professi onal transcriber was used to transcribe, five SpNP client interviews and four elite interviews. Once finalized, all transcriptions were read by the researc her, while listening to the audiotapes, to ensure accuracy of transcription. A fter the accuracy of transcription was authenticated, the audiotapes were erased, to protect the identity of the participant and free up room on the tape recor der for future interviews. As this study was based in Grounded Theory, the analysis of data was started immediately, after finishing the first intervie w and continued throughout. The ongoing collection of data, data analysis, theory development and

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109 modification, reframing of the research questions, and identifying validity threats occurred simultaneously Data from audiotapes, were typed into a Word Document and stored on a secured laptop computer, owned by the res earcher. Access to this data on the computer was restricted, through use of a password, known only by the researcher. All interviews were erased, off the tape recorder, after transcription. All hardcopies made of the data are stored along with the individua ls Statement of Personal Consent, in a locked filing cabinet, to which only the researcher has access. Analysis of Qualitative Data After data was transcribed into a Word Document, it was entered into NVivo 7. After a review of the qualitative dat a analysis packages available, NVivo 7 was selected, both for its price and ability to hand le a variety of data. Open, axial, selective coding process and memoing according to Strauss and Corbin (1998) was executed on the data collected. Management of Q ualitative Data In the development of qual itative theory, coding is the strategy used to facilitate the comparison, of the data collected. The coding process is actually two concurrent procedures, perfo rmed by the researcher: th e thoughtful reduction of data into categories and the reorganization of categories into themes, which are used in the development of theor etical concepts. During this process of exploring

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110 the connections between the different categories of data, the researcher used a variety of lens, to expose the elaborate entwined patterns and themes of the social process under study (Morgan, 1997). It is during the c oding process, that the qualitative researcher must be aware of personal biases and not code explanatory variables, in such a way that they s upport preconceived views or theoretical positions (King, Keohane, & Verba, 1994). Data Analysis and Interpretation In Grounded Theory, the unit of analysis can be a single word, a phase, a theme, or even a scenario. Each code had fi ve parts: a name or label, a definition of the codes meaning, the codes flag or description of how it was recognized in the data, any exclusion or qualification issues, and an example (Boyatzis, 1998). During the coding process, the researcher di stinguished four char acteristics of the content of the text: frequen cy, direction, intensity, and space (Boyatzis, 1998). While coding the data, the researcher: (a) studied the data then consulted the scholarly literature, (b) coded the data li ne-by-line, (c) defined data with active terminology to illustrate what people were doing and what was happening, and (d) executed theoretical sampling to follow leads presented by the initial coding (Glaser, 1978). In their version of Grounded Theory methodology Strauss and Corbin (1990), provide a set of instructions on how to identify constructs by systematically developing content from data, using three modes of coding: open, axial and selective. A line-by-line analysis, open coding was the first pass through the

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111 database, to generate initial categories and the suggested relationships among categories (Strauss & Corbin, 1998). Here in itial codes or labels were assigned in a first attempt to condense the mass of data into categories, characterizing the social process being explored, referred to as preliminary concepts (Strauss & Corbin, 1990). This process, of taking a property and breaking it down into its dimensions, is referred to as dimensiona lization (Strauss & Corbin, 1990, p. 61). Focusing less on raw data and more on the preliminary concepts produced by open coding, axial coding provides a collection of actions, whereby data was reorganized by the identif ication of existing links between categories and subcategories (Strauss & Corbin, 1990). Th ese subcategories include: conditions that produce the category, the context in which the subcategory was rooted, the approach by which it was handled, managed, carried out; and the consequences of using those strategies (Strauss & Corb in, 1990). During axial coding, the researcher started organi zing ideas and themes and identified the relationships, linkages and clusters of key c oncepts and categories (Kelle, 1995). After the application of axial coding there was a need to start the development of a theoretical model to vis ually portray the interrelationships of the different categories formed. By id entifying and validating one categorys relationship with other categor ies, selective coding helped to expand categories, as the researcher attempted to adjust the st udy around a core category (Kelle, 1995). Memoing was a principal technique used for recording identified relationships between themes. Three types of memos have been identified: code notes, theory notes and operational notes (Strauss & Corb in, 1990, p. 18). Code notes, were

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112 used, to describe the concepts discover ed during data analysis. The researcher, to summarize ideas concerning what was happening with the data, developed theory notes. Finally, operational notes were about practical matters. Content analysis was an analytic step t hat provided the groundwork, for a more rigorous examination of the material, identified by the selective coding process. The determination as to w hen it was time to stop collecting and processing data, was made according to t he four criteria pr oposed by Lincoln and Guba (1985): exhaustion of sources; satu ration of categories, emergence of regularities, and overextension. Rigor in Qualitative Research In qualitative research rigor, refers to the systematic approach to the research study and credibility was enhanced through the application of rigorous techniques and methods, which resulted in the collection of high-quality reliable data (Patton, 1999). The researcher est ablished procedures that would leave a clear trail, allowing ot hers to know with reasonabl e precision how and why decisions were made, at each stage of t he study. In qualit ative research, the studies rigor will be determined by principles of reflexivity, validity, reliability, and transferability. Reflexivity In a qualitative study, research des ign should be a reflexive process operating through every stage of a project (Hammersley & Atkinson, 1983, p. 28).

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113 To be reflexive, the researcher has to understand what they know, how they know it, and take ownership of t heir perspectives; these preconceptions are not biases, unless the researcher fails to mention them (Malterud, 2001). At each stage of the research process the effect of the researchers presence was assessed and recorded. These audit tra ils traced the conceptual devel opment of the study, as it develops from raw data, through data reduction, analysis, and reconstruction (Grbich, 1999). Praxis was obtained by t he researcher acting in the world with an overall appreciation for and recognition of how his actions inherently express social, political, and moral values that we re developed over a lifetime (Schwandt, 2000). Validity In qualitative studies, researcher bias poses two serious threats to the validity of conclusions: selecting data that fits existing theor y or preconceptions, and the selection of data that stand out to the resear cher (Miles & Huberman, 1994). Four guidelines have been presented, to help the researcher gather quality data (King, Keohane, & Ver ba, 1994, p. 23-26). The first guideline required, the researcher to honestly and accurately record the methods, used in generating data. The second guideline promoted the researcher, to collect data in as many diverse situations (contexts), as possible. Each different situation, found to support the theory increases the power of the explanation, of the results. Guideline three, was for the researcher to maximize the va lidity of the measures with the intent to insure they measure what they think is being measuring. The fourth guideline,

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114 was that from the write-up of the data collection proc edures, other researchers should be able to replicate t he data collection and thereby track the logical used by the researcher, in developing theoretical conclusions. The influence of the researcher, on t he setting or individuals studied, was a problem known as reactivity (Hammers ley & Atkinson, 1983). The researcher made an effort, to understand the influence of his very presence on what the informant said, and how this affects the va lidity of the inferences drawn from the interview. To help control for reactivity in the interviews the researcher did not ask leading questions but instead ask only open-ended questions. The goal was not to eliminate the influence of the presence of the researcher, but to understand it and to use it productively. Triangulation was the process used, to combine of methods to collect information, from an assorted selection of individuals and settings (Fielding & Fielding, 1986). The goal of triangulating methods was to increase the validity of the reported findings, from the different methods used, by offsetting bias and measurement error through c ongruence or the consiste ncy of results (Greene & McClintock, 1985). To help insure validity of the results, all rival hypotheses to the study were examined, to dispute plausible alternative explanations to the re sults of the study (Maxwell, 1996). Validity can be impr oved and the researcher can better understand patterns and trends, by taking in to consideration the negative cases, not fitting the model. Analysis of negat ive cases was very useful, during the process of modifying hypotheses and conc lusions (Patton, 2002). Once a model

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115 started to develop, the understanding of patterns and trends, were expanded by investigating negative cases not fitting the model. Reliability Reliability or trustworthiness was a qualitative concept used as a substitute for many design and measurement issues associated with quant itative techniques (Lincoln & Guba, 1985). Collectively four criteria (credibility, transferability, dependability, confirmability), were co mbined to determine the level of trustworthiness of the resu lts of this inquiry. Reliability of results was also insured, by many of the techniques used to insure validity such as: use of triangulation techniques, key-informant or elite debriefing, negative case analysi s, and the development of rich data by providing a detailed description of all information. Elite debriefing and negative case analysis helped to perform a confirmability audi t to attest that the findings and interpretations were supported by the data and were internally consistent. Finally the keeping of a reflexive journal, a daily diary, helped with a dependability audit where the appropriateness of inquiry dec isions and methodological shifts were discussed Transferability Transferability was related to external va lidity and to generalizability. While internal validity, was being able to genera lize within a group or setting; external validity is the ability, to generalize the resu lts of a study to other persons, settings

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116 and times (Charmaz, 2002). Transferabilit y of qualitative studies helps the development of a theory, which can be ex tended to other cases. Triangulation of data collection tools, in a study of a communities program helps, increase the transferability of results to other communities Patton (2002), states t hat triangulated reflexive inquiry involves three sets of questions. First, self-reflexivity challenges the researcher to reflect on personal epistemologies, the ways knowledge was understood and how knowledge was constructed. Second, there should be refl exivity about the epistemologies of those individuals being studied. And finally, there should be reflexivity about the epistemologies of those who will review and evaluate the research findings, the audience. Before each interview and focus group, the confidentiality policy was reviewed, with all participants verbally. Pa rticipants were then asked to review the Informed Consent Form, approved by the Un iversity of South Floridas Internal Review Board. All participants were gi ven the opportunity, to ask any questions about the consent form and express any conc erns about participating in the study, which they might have. Participants were asked to sign the informed consent form, before proceeding with the interview. To further ensure confidentiality all information such as names, addresses, data and demographic information was stripped of any identifiers that would aide in the identification of the interviewees.

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117 CHAPTER IV: RESULTS Introduction The purpose of this qualitative study was to develop a model, explaining how Hillsborough County, Florida dev eloped a program addressing the communitys special needs population, in the event of an evacuation for a hurricane. This chapter describes the resu lts and is divided into four sections. Beginning with a historical overview of the Hillsborough Countys SpNP, which lead to the development of current procedures, policies, and resources. The second section provides a detailed qualitative analysis of the three focus groups, where 24 stakeholders in the SpNP describe t heir agencies roles in the program and organizational and personal collaborati on; identifies barriers to program development; and provides interpretations of what characteristics describe the development of the programs. The third section analyzes data collected from 30 semi-structured interviews, with clients regist ered in the SpNP. Section four of this chapter, describes the results of 10 semi -structured interviews with elites or directors of agencies active in the SpNP. To help enrich the information provided in this section, a comprehensive depiction of the qualitative dat a collected, from focus groups and interviews with

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118 SpNP clients and elites will be provided. Throughout each section, italics are used to distinguish commentar y, taken verbatim from pa rticipants in this study. Where appropriate, field notes are also provided verbatim. Field notes are identified by a title, the date written and will appear as indented, single-spaced text. History of the Hillsborough County Special Needs Program Information for this section was obtained, by piecing together fragments of stories told by people who worked the s helters during Hurricane Elena, research articles written on the topic, and current information found in the Hillsborough County SpNP Handbook. In 1985, with Hu rricane Elena hovering in the nearby Gulf of Mexico Hillsborough County had no pr ocedures in their emergency plans to care for evacuees, with special medical need s. People came to ARC shelters with numerous medical issues, ranging from needing help with personal care and hygiene, to requiring electricity for medical equipment and oxygen Currently, as in 1985, ARC shelters located in Hillsbor ough County are only equipped to provide shelter to people, capable of self-care or have brought a personal caregiver. There are no cots, no medical supplies, and no generators to guarantee of access to a continuous supply of electricit y. ARC shelters then as now are usually located at county schools, staffed by the schools janitor, security person, and the principal trained by ARC as a shelter manager. Soon after Hurricane Elena, state laws were passed requiring county EOCs to keep records of individuals, with spec ial medical needs. The laws did not mandate how EOCs should prepare to pr ovide for the needs of vulnerable

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119 residents, nor did the laws provide info rmation as to what qualified a person as having special medical needs. In Hillsborough County, a grass roots effort evolved at the community level and working with county agencies, a SpNP was developed. The plan was operational through the Hills borough Countys EOC. In 1987, a means of registration was developed and an e ffort was made to register people in the community whose condition was not serious enough for admittance to a hospital, but whose condition could not be handled at a typical ARC shelter. With a lack of funding and no direction, SpNP regist rations were kept in a file drawer at the EOC. The initial legislation was vaguely written and under-funded and legislation, has yet, to indicate inclusion criteria fo r SpNP participants or the minimum program criteria. Each county was left to devel op their own program, purchase their own equipment, and provide operat ional funding. Consequently, there is no consistency between county plan s; ranging from no plan, to what is considered to be a model plan for the country. In 1992, Hurricane Andrew devastated the southeast section of Florida around Homestead, located just south of Miami. Again ARC shelters were unprepared for the influx of people with special medical needs. There was no plan for dealing with the aftermath of the sto rm, and the need for sheltering and meeting medical needs. As a result, the state pa ssed another law requiring counties to not only to register people and make lists, but to actually have resources to provide for their care. At first Hillsbor ough County tried to get the A RC to provide the shelters,

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120 but for liability reasons, ARC chose not to staff SpNSs. Thus, the county became responsible. May 22, 2007 There seems to be a large gap in inst itutional memory, concerning the Hillsborough County SpNP, fr om 1987 to 1993. During this period ,no major hurricanes threatened Florida. Disaster amnesia seems to have set in and the SpNP kind of just fell by the wa yside. No documentation can be found on the program, during these seven years. Hurricane Andrew and the problems it created for the elderly and per sons with disabilities, once again brought forth to public attention, the i ssue of sheltering people with special medical needs. In 1993, the EOC hired a new planner who was assigned as part of his duties, the management of the SpNP. The new planner found about 5,000 registration forms, stashed away in a de sk drawer. Only 40 people had actually been assigned to shelters, a task assi gned to the Hillsborough County DOH. A volunteer was found to help start a dat abase and the registration forms were simplified, making them easier to complete The volunteer spent a year, calling the over 5,000 registrants, to ascertain who was still in need of the services. About half the people registered, were deceas ed or could not be located and were removed from the list. At the time the DOH personnel were a ssigned to staff the three facilities used as SpNSs. The University of South Floridas (USF) College of Public Health (COPH) offered to provide volunteer staff for a SpNS located on campus. In 1994, Hillsborough County evacuated for Tropical Storm Gordon, which while causing little physical damage to the area highlight ed many weaknesses in the SpNP such as lack of medical supplies, medical personnel, generators, proper shelters, lack of clear eligibility guidelines and lack of cots. Soon afte r in 1994, the DOH reported

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121 that they would only prov ide six nurses, who would serve as shelter managers. Two nurses were assigned, each working 12 hour shifts for each of the three shelters that would hold up to a combi ned total of 4,000 people. The local HHAs, Dialysis Agencies and Hospice were approac hed and asked if they would provide staff to the SpNS. Only Hospice stepped up and offered to move their command center, into one of the shelters. The COPH also made a co mmitment, to recruit more students, to staff the shelters. Arrangements were made with local hospitals and nursing homes to shelter those indi viduals who conditions required medical attention, not available in the SpNS, or who were obese and because of their weight had to be placed on a hospital bed. For several years, the EOC struggled to staff the SpNSs. Hospice took care of their clients, but other special needs evacuees were placed in a shelter staffed only with a nurse from the DOH, a handful of students from the COPH, and a few COPH professors who happened to be regi stered nurses. SpNSs were opened once in 1994 for Tropical Storm Gordon, twice in 1995 for Hurricane Eric and Tropical Storm Jerry, once in 2000 for Hu rricane Gordon (tropical storm names are kept until they are used to name what becomes a hurri cane that makes landfall), once in 2001 for Tropical Storm Gabrielle, and then three times in 2004 for Hurricanes Charley, Frances, and Jeanne. The arrangement with the COPH slowly fe ll apart, as it became difficult to get students or any student from USF to vol unteer. Representativ e of fraternities and sororities, as well as, student representatives and professors from Gerontology, Psychology, Social Work Nursing, and Medicine programs were

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122 asked by a COPH student representative to volunteer to work in the SpNS. In 2000, the only volunteers for Hurricane Gor don were personal friends of the COPH student representative. November 18, 2007 As the COPH student representative to the SpNP I was out of the country and actually had my return flight into Tampa cancelled by Hurricane Gabrielle in 2001. The SpNS was opened for only a Category 1 evacuation. It is my understanding t hat only a couple of volunteers showed up, but luckily neither did many evacuees. After Tropical Storm Gabrielle the DOH decided that they would again provide personnel to staff the shelters, th is commitment was tested the next year 2004 with evacuations for three hurricanes After Hurricane Charles created a special needs crisis in s outhern Florida, the state l egislation mandated that DOH take over management of ev ery county SpNS. After the 2004 hurricane season, it was apparent that the County EOCs were under staffed and not properly trained, to manage SpNSs. June 02, 2006 The researcher had the privilege of working the storms in 1995, 2000, and 2004. This gave me the opportunity to obs erve shelter operations six times. The first three times, the SpNS at USF was only able to operate due to the efforts of volunteer student s from the COPH and several COPH professors who were registered nurses. There was little assistance from the DOH, other than two nurses who took turns managing the shelter and there was no assistance from any other agencie s other than the Area Agency on Aging, which provided someone to help regi ster people as they arrived. In 2004, I saw vast improvement in sta ffing the shelter, as the DOH stepped up. Staffing improved with each of the three hurricanes. One issue I would mention here is that Hillsborough County was spared a direct hit by hurricanes over the years and many people began to believe that the evacuations were unnecessary. This was truly an issue in 2004 with the three evacuations. For the first evac uation the SpNS at the Sun Dome was packed and the upstairs area had to be utilized. During the second evacuation, about half that number evac uated and about half of that number evacuated for the third hurricane, as apat hy set in. There would have been major problems, if Hillsborough County ha d experienced a direct hit during

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123 Hurricane, as many people with special medical needs were sheltering in the community. In both 2004 and 2005 Florida was hit by four hurricanes, creating corridors of destruction that crisscrossed the Stat e of Florida spari ng Hillsborough County, except for some power out age. One of the 2005 hurric anes that hit Florida was Katrina, which went on to create great damage in Louisiana and Mississippi. After these events, interest peaked in the SpNP and agency representation greatly increased. Currently, stakeholders in the SpNP include local, state, and federal government agencies advocates, adult living communities, individuals with special needs, disability groups, not-for-profits (NFP), private businesses (utilities and transportation), health care agencies, HHAs and hospitals (See Appendix A). The 2006 and 2007 hurricane seasons, produced no hurricanes that made landfall in the U.S. As a result, fewer and fewer agency representatives are attending the SpNP meetings. This is especially true, of many of the sm all NFPs. But the program continued to grow, adding an Americans with Disability Act (ADA) subcommittee and has address training issues on serving the needs of persons with disabilities. Over the years as money became available, the EOC bought resources for the three SpNSs. Facilities have been, wit h more wind resistant material and have been connected to large generators, to insure a constant supply of electricity. More equipment such as medical cots, disposable blankets, and medical supplies has been purchased. The new cots purc hased are of a better designed more accommodating to todays body style, adj ustable to a 45-degree slant, and able to

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124 hold a person weighting up to 250 pounds. Much of the money used to purchase supplies for the SpNSs, was obtained thru Homeland Security Grants. Stakeholders Focus Groups Focus Group 1 The participants in the first focus gr oup, were all representatives from HHAs, which provided services in Hil lsborough County and ar e members of the SpNP. Of the 53 different HHAs regist ered in Hillsborough County, 20 were contacted before 10 agencies, agreed to send a participant. Those 10 HHAs who declined to participate in the focus group, explained that they could not send a representative, due to a cu rrent shortage of staff and consequently did not have anyone available to be interviewed. Two of the 10 HHA partici pants who did agree to participate, called at the last minute canceling, also due to s hortage of staff. Of the eight HHA representatives who participated in t he focus group, all were Caucasian (See Appendix M). Two participants were Hispa nic, one of whom was the only male, in the group. The job titles of the participants were: three Social Workers, two Directors of Nursing, a Director of Pati ent Services, a Clinical Director, and a HHA owner. The age of the participants ranged, from mid-forties to early sixties. When asked to describe how the community identifies the criteria that must be met for enrollment in the SpNP, parti cipants identified most of the medical needs that qualified a person to be admitt ed into a SpNS, or if necessary a hospital. All participants realized that one of their roles as HHAs, was to register

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125 people, for the program. Only two parti cipants, were able to identify the differences between an ARC shelter and a SpNS, which is operated by the EOC. Only one of the participants knew that ARC, had no part in staffing SpNSs. Much concern was expressed, for their patients in the event of a large evacuation, because of the lack of special needs beds in the shelters. Expressing feelings of responsibility for their patients, partici pants felt that as health care workers they were presented with a moral dilemma . What do you do with patients who do not qualify for the program? Do we take them home with us? This fear is based on the fact that ev ery person who registers for the SpNP is not accepted into the program, as they do not meet the qualif ications. These individuals may still need personal care, assi stance transferring from a wheelchair, or a special bed, resources not available in ARC shelters. In fact, there are more people registered in the SpNP than there ar e special beds or cots available in the shelters. May 30, 2006 It is unrealistic to expect any count y government, to have in reserve enough special needs beds to accommodate everyone in the community, in a mass evacuation. Not only would the beds be expensive, where would you store everything? Because of high humidity the mattresses, pillows and sheets would have to be stored in a climate-controlled environment. One participant expressed concern t hat the county, had not properly addressed the issue of dialysis residents, because they only made plans to ensure that everyone received dialysis during the days leading up to evacuation. We did not talk about, if these residents were going to have to be off of their dialysis for a week or longer. Participants expressed, they felt dialysis centers, were not addressing the issue. A r epresentative of Network 7, a national dialysis advocacy

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126 group, discusses this issue in more detail in a later focus group. Currently in Hillsborough County, all dialysis patients r egistered in the SpNP are assigned to the SpNS, located at the Sun Dome or a hospital. As of November 5, 2007 there were 506 dialysis patients, out of the 3,951 individuals, regi stered with the SpNP. November 29, 2006 Truth is, the State of Florida still has not defined what criteria constitutes special needs and have left it up to eac h county to determine who qualifies for its SpNP. As a resu lt, the services provided between counties differ. Many HHAs provide services to more than one county and their service providers, may not be aware, as to w hat services each county provide. In Hillsborough County, all dialysis pati ents who apply are accepted into the program and are assigned to one SpNS, the Sun Dome, which is located near several dialysis centers. Participants reported that some of t heir patients would need transportation to a SpNS and wondered what arrangements were in place. The participant whose HHA operated an adult community st ated that Hillsboroug h County sends a bus to their facility, to tr ansport patients. When finding out that reporting to work during an evacuation was in the job de scription of county bus drivers, one participant replied, So we are talking about our general public and we are asking them to leave their families? A participant responded by saying that workers jobs were dependent on their reporting to work, during an emergency. Several of the other participants expressed surprise at th is point, as this was not the policy at their agencies. When asked how they m anaged to get their workers to show up, they were informed, that arrangements were also made to shelter and feed the workers family. When probed about what was done about pets, the participant stated that workers were responsible, to make alternative arrangements to shelter their pets.

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127 It turned out, that the HHA that required their staff to work disasters, was affiliated with an Adult Living Facility (ALF). This ALF, recently built a new building that is considered, the strongest building in Hillsborough County. Because of their experiences in taking their residents to SpNSs and ARC shelters in the past, they felt it was in their best intere st to build their own shelter A big reason why we built our own building, was because you ta ke the elderly out of their environment they psychologically get extremely confused and hostile, become extremely anxious, they begin to wonder. Representatives of the other HHAs expressed how great it was, that the staff went to the s helters, with the patients. Some of the HHA expressed concerns about mandating that their nurses staff shelters, during an evacuation. Fo r example, the HHA nurse may be a single parent and have children or parents who need to be cared for, while she was working. Yet there was no procedure fo r taking care of the nurses dependents, while she worked at a shelter. As one participant replied, And I accept my responsibility and what I have to do, but y ou know most nurses ar e women and it is just one more thing that they expect us to have to do. Ok lets divide you again and see who comes up first? Do you ca re about these people? Do you care about your family? Who do you care about? You know, what are you going to do? And the bottom line is that it is always going to come down to women to split and make the choice, between their job and their family. All female participants in the focus group expressed feelings of being: frus trated, overwhelmed, overworked, and underappreciated. The only male participant kept quiet, during this discussion.

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128 There was general agreement, among t he six participants who were managers or owner of HHAs that they would be working, because of their positions, but felt they really could not r equire their employees to work for a variety of reasons. I tell you when I was a mom and had young kids there was no way in the world you could convince me to either drop my child into a situation like that, nor would I have left my child at home and walked into a situation like that. Now that my child has grown and that my husband will not leave the house, because of the dogs and he understands, that there is no way in the world I can leave my job or my patients and he has accepted that. He is not happy about that, but he accepts it. And I accept my resp onsibility and what I have to do. The other issue that I bring up is, if you are going to have a situation where you are going to say to people you must do this and you can bring your family who is going to take care of the kids, wh ile they are over ther e taking care of the patient? There has to be some process, some structure set up, to help these caregivers. It is one problem after another Maybe there is a solution to that. I do not think we are going to know the answers until we really have to go through something. As far as being forced to do something I do not think we will ever find the right or wrong answers to it. And the bottom line is that it is always going to come down to women, to split and make the choice between their job and their family. Focus group participants considered pets, to be a major issue. They knew some patients, whose pets were the one thin g consistent in their life and would not evacuate, because they could not bring pet s. One participant when talking about

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129 lessons learned from past evacuation stated, I think we learned a lot, especially with regards to the shelters accepting pets, because that wa s a big issue of a lot of families, was the pets Another agency reported that, while it was not mandatory that employees report to work, many did and arrangements were made for both family and pets. Employees were required to bring pets in a cage and supply their own pet food. Two HHAs reported that providing for family and pets, helped to decrease employee turnover rates after an evacuat ion, an action that saved the agency money. Another issue raised by the HHA was t he tracking of the pat ients. Concern was expressed, that individuals signed up may no longer be their patients and may move. They were worried these indivi duals were not being tracked and might fall through the cracks, in an evacuation. Consequently, these individuals may be forced to shelter in an environment, not safe from the power of a hurricane. The next question asked of the focus group was: What social norms and values determine who get services and wh ich needs are met by the SpNP? One of the respondents replied, There was a discussion by somebody and probably a group of people in the county government wi thin the medical community, there was probably some joint decision that people we re worth saving and so they put the process in place and got the fac ilities in place to do that. Another participant said that she believed, caring is the primary value. Caring for people. Bring your sick and needy.

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130 The group discussed how the destruc tion caused by Hurricane Katrina forced not only their agencies, but also whole communities to address plans for caring for people with special needs, in an emergency. The group seemed to come to a consensus that denial was a major issue in accounting for why people did not evacuate, when requested. This wa s especially felt to be true, in New Orleans where people believed that the levies would hold back the water, as they had in the past. Several in the group admitted that many people in the community didnt learn the lessons of Katrina; belie ving that unless a person had directly experienced the effects of a direct hit by a major hurricane, it is difficult to imagine the destruction. As one participant put it, But we are getting flooded with so many people that were never exposed to a hurricane that think, oh really, its party time. Now the countys population is estimat ed to be 1,177,060 (Hillsborough County Government, 2007). With an increase in population, devel opment, and with over 40,000 mobile homes in Hills borough County, a major storm like Camille or Katrina will be catastrophic. As a group, the participants believed that if a Hurricane Katrina hit Florida we would be better prepared as a state, because our communities have developed evacuation plans. In 2004, many communities in Florida had to address their plans, due to the four hurricanes that landed that year. It was fe lt that Hillsborough County, really had its plans tested and they agreed that t here was room for refinement. One plan brought up, was t he Medical Watch Pr ogram run by the Tampa Electric Company (TECO), which impl ements a priority system. If you have

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131 medical needs requiring electricity, y ou would be on a priority list, to have electricity turn back on after a power outage An application is sent out once a year, with a monthly bill. None of the par ticipants had ever seen one with their bill, because as most people, they throw out the excess paperwork and just address the statement. Several Participants complained, about difficulties contacting TECO to get forms and believed that bei ng signed up does not guarantee services will be received, thus making the program ineffective. When probed if they had tried to access the information over the Internet, several of the participants expressed anger. Why do we always have to presume that the computer, is going to solve the problem? Another replied that the state is doing that now with Medicaid forms. You need to apply online. They do not have workers to work with you Another participant replied, and three-fourths of the people that need it, dont know how to work a computer. Let alone recognize it from the TV A major issue addressed by the HHAs, wa s that they all knew there were many people in the community, not rece iving assistance from some agency and a lot of them would have no clue what to do in an emergency. It was felt that the community or the state, needed to identify the special needs population to get an understanding, of just how big the issue is. When asked what are the re sponsibilities of the HHA during an evacuation, every agency responded that they have a pl an for tracking the whereabouts of all their clients, before and after a storm We call every one of our patients and ask if

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132 they need help in evacuation. Where they are going to be, a number where we can reach them. When asked the question: As a Home H ealth Agency representative, what have been your experiences wit h the special needs program, in this county? One participant stated, we did not have to do this in pas t years. This is my first year of experience. The remainder of the participants expressed that over the years, they had a good working relationship wit h the EOC and they had attended SpNP meetings, in the past. Agencies participatin g in the SpNP, reported that this ongoing interaction with the EOC and other agencies involved in the SpNP, had helped their agencies to improve their Emergency Operating Procedures. You get the notices of what is happening. Where things were going. How much time you had. What level they were at. And if we had plans, what we would do at each level that came out. You acted on each of those levels. When probed as to their experiences with working with emergency management in other countie s, all the agencies report ed that they had had very little contact with emergency management, in the other counties. One agency representative reported that her only involvement wit h another county was in 1985, during Elena, when she opened a shelter with no plan. She said, ... I put my foot down when they walked in with a patient on a stretcher, with an IV going and fully catheterized. I said go to the hospital. I think I sent six to the hospital June12, 2006 It is known that over the years HHAs have resisted EOC requests, to provide nurses to help staff the SpNS All but one HHA has refused, even though the county has offered to provide reimbursement for the nurses time, as well as, covering all insurance liabilities.

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133 When asked about House Bill 7149, wh ich would require HHAs to provide nurses to those shelters to which thei r clients evacuated, it was met with a universal negative reaction. It was m ade clear, that one HHA could have one or more clients evacuate to every shelter in the county and still have the majority of their clients sheltering elsewhere in t he county, creating major manpower issues. It was made clear that there is a crit ical shortage of nurses and those HHAs along with other health care agencies, are fightin g over nurses. The issue was also raised, that some nurses actually work fo r several agencies, at any given time. A suggestion was made, that each HHA licen sed in the county be made responsible for staffing one or two shelters. I may be taking care of her clients and she may be taking care of mine, but we are not dying to try and cover all the diffe rent people. The rea lity is that all of my people who go to a shelter do not need 24 hour care. They may need someone to help them toilet, someone to help them keep clean and make sure they get their medicines and are feed. They do not need one person concentrating on them at all times, and so the nur ses and CNAs I send can handle more than one person. Responding to this comment, several of the HHA representatives expressed concerns, about legal liability issues. Many expressed concerns that their agency or they themselves could personally be sued, if something happened. Every participant expressed fears of being sued, for not knowing another agencys plan of care for the patient.

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134 The only potential problems with that is, say I send one of my nurses and one of your patients is on whatever legally there would have to be a disclaimer. I dont know this person and if I touch them I might be sued. Legally, that would have to be taken care of Only one of HHA represents was aware of the fact, that any nurse working at a shelter, would legally be cons idered a Hillsborough C ounty employee and would fall under the county in surance program. In fact the nurses would receive their regular pay, from the county, for their time spent in the shelters. I was surprised that only one of the representatives knew anything about the program, especially since I have seen letters sent to every HHA announcing the program for the past two years. All of the participants agreed, that it was a good idea for each agency to adopt a shelter, by sending a nurse and a CNA. But again a participant raised the issue of liability. The only potential problem with t hat is say I send one of my nurses and one of your patients is on what ever legally, there would have to be a disclaimer. I dont know this person and if I touch them I might be sued. Legally that would have to be taken care of. At this time, the HHAs brought up the issue of sheltering individuals with mental health problems, who may have difficulties coping in an unfamiliar environment. They believed that this was one of the weak points, in the SpNP. The HHAs suggested, having mental health professionals stationed at the each of the shelters in the county, to help people de al with their fears of not knowing what is happening next and of losing their homes and possessions.

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135 Past efforts to recruit volunteers with mental health training, has been difficult. Though during one of the three hurricanes in 2004 one mental health counselor did show up at the SpNS, for a few hours. But to cover all three of the SpNS in Hillsborough County and be able to ro tate in eight hour shifts, would take at least 9 trained volunteers. There is also the problem of individua ls recently discharged from a hospital and do not qualify for the SpNP but they ar e still dealing with health problems. The hospital will not readmit them as they w ould not be covered by insurance thus not having time to fully recuperate the individual is not able to provide for their personal care needs in an emergency situation. One issue brought up, was SpNP restri ction that only one caregiver could accompany a person, evacuated to a SpNS. Three of the parti cipants thought that this caused undue stress on everyone, as other family members must shelter elsewhere, splitting up the family unit. One participant reported that one of her clients had 5 kids at home and stated, I have to get somebody to go with the client, but her kids cant come with her. Another participant replied, that she had a client with three kids and only she was allow ed to go with her sick child to Shriners. She had to leave her other two young childr en with their father. One participant replied that, I understand the human component and certainly I am in this because I care about people. But I care about all peo ple. I care about my clients. I care about my caregivers. At this time one participant stated, My understanding is that all can come to the shelter. And they can bring their pets. While true this is information that has

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136 not been released to the general public, too which there is a good side and a bad side. If you allow people in the SpNP to bring pets to the SpNS, then everyone in the general public will expect t hat they can also bring their pets to shelters for the general public, which does not accept pets. Also by not letting people in the SpNP know that they can bring their pets, t hey may make the decision not to evacuate thinking that they will not be able to bri ng their pets, when in fact they can. Another issue raised, was the difficulty in getting patients an extra months supply of medication, in case of an em ergency. The insurance companies resist paying for extra medications and many people cannot afford to pay out-of-pocket, for back-up medications. There is also the problem of everybody getting a months supply of if the pharmacy has the supply. You call your pharmacy and say hey, I need a months worth of meds. But you ar e not due for another 3 or 4 days. We are running into that right now with a carrier. They ar e afraid Oh no you might take them all at one time. Medicaid not part B will never be able to get their medicine, because they do not know who in the heck to call anymore. Have you ever tried to call Medicaid, anybody on Medicaid? Nobody knows who you are supposed to talk to. These people have to sign up for something Monday and they do not know what to sign up for. I am getting calls now and I cannot make the decision fo r you. What are they going to do?

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137 Focus Group 2 Participants in the second focus group, were mid-level executives and were their agencys representative, to the Sp NP Planning Committee. Eleven agencies were contacted, to reach a minimum of 10 participants. The one agency that declined to participate stated t hat there was a time conflic t and a staff shortage. The day before the interview, participants we re contacted, to remind them of the next days focus group. Representatives from two agencies called at the last minute to cancel. One explained that he had forgotten about his bosss retirement party, which was at the same time as t he focus group. The other participant who cancelled did so, due to an emergency m eeting at their agency. There was no time to contact other agencies, to see if t hey had staff that coul d participate, so the focus group was conducted with eight participants. Participants in the focus group ranged in ag e, from their mid-thirties to early sixties (see Appendix N). Three of the participants were male and five were female. Of the eight participants in this focus group, seven were Caucasian and one African American. The focus group participants r epresented three Hillsborough County agencies, four NFP organizations, and one nat ional agency. Three of the NFPs were national organizations and provide information and/or services to people enrolled in the SpNP. The third NFP, r epresented one of the th ree facilities utilized as a SpNS, which under normal conditions functions as an auditorium for sports, concerts, and other activities. Of the ei ght agencies, only two do not provide any direct service to clients of the SpNP.

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138 When participants of the focus group were asked if they had evacuation plans for their families, only one replied that they did not. As far as an evacuation plan goes, I am developing it currently . Even though hurricane season was only a few weeks away, only four of the eight participants had a supply of non-perishable foods at home. Common replies were, Food supplies are not in place yet, but that is one of the things that as you get closer to it, you start stocking up or I have water and I have batteries . When asked, if the agencie s represented had developed internal detailed plans to respond to a hurricane, all participants replied that they had. Participants reported that their agency had an Employee Phone Tree, which ensured that every worker was contacted and informed of the implementation of the hurricane plan. Participant 4 replied, that their agencys hurricane plan was, umpteen pages long. I am in the process of updating it now, for this year. It is very extensive, we work hand and hand with DOH and the EOC . All agencies expect for the one, reported that they had worked with the EOC, in the devel opment of their hurricane plans. Upon execution of their hurricane pl ans, each of the six agencies that provide services contact their clients to find out what evacuation plans have been made, so that they can be located postevent. As Participant 2 replied, We make sure that we know where all t he clients are going for the disaster . According to Participant 8, For our patients, our plan is to start contacting those for appointment, as soon as possible, to let them know that we are closing at least on

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139 these days and stay tuned for further informat ion. And then to make sure that any of the new prescriptions or whatever is taken care of . Five of the agencies represented, provide staff for t he SpNSs. Of the eight agencies represented when speaking of indi viduals registered in the SpNP four referred to them as patients, two referred to them as clients, and two called them people. July 07, 2007 Those registered in the SpNP are referred to either as pati ents, clients, or people depending on their relationship with the agency speaking about them. For example, in the focus group all the HHA representatives referred to this population as patients. In this focus group those agencies providing health care services, also refers to th is population, as clients. Meanwhile, the two NFP who provide information and referral services to this population, refer to them as clients. The two agencies, which have no real relationship with this population, call them people. All agencies, except for two agencies, we re active in registering people for the SpNP. Three of the agenc ies represented, while active registering people for the SpNP, do not actually provide staff to the shelter. One agency provides staff to the SpNS, where thei r patients are sent, but their staff only provides care for their patients and do not assist with the care of other evacuees. Participant 4 stated, We bring a lot of staff. We bring nurses, councilors, aides, and chaplains. We bring the gambit. And some non-clinical staff also because they can be runners, helps with getting people to the bathroom or whatever . One agency usually provides a social worker and a case manager to each of the three SpNSs, but t hey have been known not to show up, or to leave after people have been registered into t he shelter. When it comes to staffing the SpNS,

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140 the management of the facilit y, supplies a small staff to operate the facility and provides janitorial services. While most of the staff shelters elsewhere when the SpNS is closed, they quickly return, we have to get ba ck to our day-to-day business. Cause once emergency manage ment moves out, we have other events. Representatives from two agencies reveal ed that their focus this year, is educating people to develop alternative plan s and evacuate to a public shelter, only if absolutely necessary. The emphasis bei ng, that the SpNS is not a fine hotel and it is not the place to be, unless there is no other alternative. Its a life raft not a cruise ship . One agency, helps people with di sabilities put together evacuation kits appropriate for their special needs and offers training to shelter workers on disability issues critical to the heal th, safety and welfare of the evacuee. The participants were asked, how t heir agencys commitment to the SpNP was different or similar to sister agencies, in other counties in t he State of Florida. Representing a NFP, Participant 5 replied that they were completely independent and did not work or correspond with other agencies that provide similar services. There are other agencies in the State of Florida, but they are separate identities. We do not correspond or anything with the other agencies. So I would have no idea, how we compare . The representative from the SpNS, Participant 6, reported going to conferences where loss of stadium roofs was an issue. Currently the SpNS is designed to withstand a Category 3, but they are working with the EOC and Hillsborough County to get funding to retrofit the building, to the extent that it could

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141 withstand a Category 5 hurricane. It will support 130-140 mile per hour winds, but the Super Dome about the same thing . They are also going after grant money, to purchase a 17-50 Kilowatt generator for the SpNS that w ould provide enough power to operate the facilities air-conditioning We do as much networking as we can. The groups that we are invo lved with have panels and committees and volunteer groups that s hare a lot of thoughts. W e just got an EMPA grant approved for $250,000. I just went in front of the Board of County Commissioners and got $450,000. So all these different gr ants are adding up to this big project to come in and it will be a portable uni t just a plug and go type situation Participant 7 commended that his agency has sent staff to help posthurricane rescue in other parts of Florida, Mississippi, and Louisiana. A lot of lessons-learned were brought back, particu larly concerning leadership and control over NGOs, that come from places unknown set and try to make a name for there organization. Many of these NGO and animal humane groups, just sweep in and pick up all the little fu-fu dogs and l eave the pit-bulls that nobody wants . The suggestion was also made, that there needed to be a time-period where people can come and find their animal before they ar e given away. As far as comparison with other counties in the state, it was stated, Some of the counties in the state are pretty rural, pretty animal issues are pretty low on their agenda, but it is coming . Currently there are State Agri cultural Response Teams and Disaster Agricultural Response Teams being dev eloped, but the two groups do not communicate with each other.

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142 Participant 8 informed the group, that though her agency was in each of the 67 counties in Florida, they we re in fact a state agency. With that in mind we have regional public health pr eparedness folks, who crosscounties and they are constantly in conference with each other. During the event, there are conference calls going on between direct ors of the health departments Ph.D. folks and so a lot of sharing going on. Going on to explain that each county agency, had a different relationship with the local EOC, often dependent on how advanced the countys emergency management system was. Representing their patient s statewide, Participant 3 retorted that the relationships between dialysis center s and local EOC varies greatly between counties. There is all the way from wont contac t you back, to the relationship that Hillsborough County has. This was agreed upon by several of the other representatives. According to Participant 1, whose agency works with three other counties, There is no comparison at all. Th ey are much behind times as far as their thinking even and their planning . The representative went on to mention, that over the past several months, things had begun to change and most EOCs were becoming more responsive. Participant 1 informed the group, that there were 17 similar agencies in Florida, three were awarded grants to conduct outreach to the persons with disabilities community and provide in formation on personal preparedness. The agency serving Hillsborough County was awarded the most money, as they are to develop in conjunction with the local A RC, a program to educate shelter workers on how to interact with and provide services to evacuees with disabilities. Also, to

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143 be developed is a guide for persons with disabilities, as how to prepare themselves and their families to survive emergency situations. November 20, 2007 As it turned out the author of this disse rtation, was hired as a consultant to help develop the training course and the disaster preparedness guide for persons with disabilities, liv ing in Florida. A thr ee-hour training course was developed, for use on a statewide basis. The course was designed to be a model for training shelter volunteers and managers as to the needs of persons with disabilities, in the different Florida counties. The concept was that representatives shoul d teach the course from the counties agencies, which would change material to reflect local policy and available resources. The preparedness guide developed for pers ons with disabilities was limited to those emergencies that affect Florida Residents such as hurricanes, flooding, chemical leaks, structural fi res, and wildfires. The guide walks the reader through how to perform a self-a ssessment, of what their needs would be under every possible emergency scenario Once identifying their needs the individual, would be educated on how to develop emergency plans of action and building personal networks fo r assistance needed, in the home or work environment. The guide also was designed to help people develop emergency grab-and-go bags for their place of work, car, and home. The next question asked of the focus group was: What effect has the last two hurricane seasons, had on your agencies policy and how does this compare to the policy, in other counties? Participant 6 commented t hat because of their role as a SpNS, they had seen an increase in f unds allowing them to make structural adjustment to the building, so that it could withstand st ronger winds. As far as affect on policy, I cant imagine that it hasnt changed everyones policy, thoughts and approach . The other seven participants expressed similar comments. Participant 7 made a comment that over the past couple of years, they had learned that each hurricane brought along wit h it different problems, depending on its strength, amount of rain and whether the area affect ed was urban or rural. Accordingly, reactions to the storms have been different they have learned

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144 something from every sto rm and hopes that in future storms his agency is, able to bend enough to work those things out as they go . Several of the other agencies, that had also deployed employees to other areas post-hurricane to assist with the re covery, reported bringing back valuable lessons learned. Participant 8 stated, As a matter of fact, a couple of weeks ago we were meeting trying to get informati on from folks that deployed to Mississippi and Louisiana. And some of the things we talked about, were the 800 number that we have will get flooded. If you cannot man the phone lines, then what will the employees do? So we have to take that next step. If you ca nt be reached, what do you do? As a result of these lessons learned, agencies were forced to address their plans, to ensure that they did not repeat the same mistakes. Participant 8 brought up that before someone is now hired in her agency, they are informed that work ing at a SpNS was part of their duties and failure to show up during an evacuation, was grounds for termination. This had also become the policy of Hillsborough C ounty, with the three county agency representatives replying that their workers were also r equired to report to work, during a hurricane. One of the NFP represent atives, Participant 4, commented that employees for some time have been require d to staff SpNS, but over the past couple of years a change in attitude concerning the training had occurred. When I went around and did the training in May, which we do every year. This time theyre watching and they are learning. It is not just t hat you had to mandate it and you had to sit

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145 through it. This time they are listening, they are asking questions and so that is the biggest difference with what Ive seen across with all of our staff. One of the other r epresentatives from a NFP, Pa rticipant 1, commented that in the past they had just closed the office as a response to a hurricane evacuation. They were now in the process of devel oping an internal plan, for protects equipment and office records. Also, bec ause of the last two hurricane seasons they had changed policy, to include register ing clients who were eligible to participate in the SpNP. O ne of the other NFPs, Partic ipant 5, responded that they also had just developed agency plans and that the biggest change in the community served was the shock value . Most employees had not been through a hurricane and were affected by what they saw/heard in the media, after Hurricane Katrina. It was revealed to participants in the fo cus group, that interviews with the first wave of SpNP clients, indicated that few understood how the SpNP actually worked and did not know what services we re provided in the different shelters. This raised the question, as to how to be tter educate these individuals, on what to expect at a public shelter. All participa nts strongly supported, that the issue of education, was important. Participant 1 expressed, that the EOC has been doing a lot of education in the community, on the issue of what to expect in a SpNS. Participant 8 replied, I cannot emphasize enough t he importance of the education. It is all about empowering t he patient to take re sponsibilities for themselves. To this Participant 1 replied, that part of their mission had become, the issue of trying to get people to prepare and plan What do you need to bring?

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146 Whats important? If youre dependent on a caregiver, trying to ensure that you got a caregiver that is going to be able to be with you. Participant 1s agency is educating their clients, as to what t hey should expect in a public shelter and stressing the importance of having an alternative plan. Participant 5 stated that they emphasize to their clients, the importance of being prepared and have a two or three month backup supply of all medications. They try to get their client s to understand that at a public shelter, they are not going to be able to do the things you do at home, because its totally different. Adding that many of their client s, reported seeing Hurricane Katrina evacuees in shelters on TV and this brought the issue home. To this Participant 3 replied, that they had conducted a drill at one of the local dial ysis clinics and conducted some patient interviews. Expressing that, it was amazing after the past two years the mentality of people that someone will take care of me. Reiterating that her agency was trying to get patients to understand, they needed to be responsible for themselves. Participant 4 supported this stating, There is some kind of we havent figured it out, but if somebody does, a kind of a block. You talk to them, give them pamphlets and all kinds of you kn ow the hurricane guides and all of that. One of the things that we have an issue with, is oxygen dependent patients and making them really understand that w hen that power goes out, so does their oxygen source. They think that they c an just call up to a company, our company, and say bring me eight more tanks and t hat just is not going to happen. Participant 8 replied, education doesnt necessarily work unless it hits you full force. She referred to it as the ostrich syndrome, because most people

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147 feel that they are not a ffected by the problem. Its the old story of its not raining so why fix the roof and when its raining I c ant get up there to fix the roof now. We have seen people that oh, I am not going to worry because somebody is going to take care of me. And you tell them that there is nobody, thats going to take on your portion of the responsibil ity. Will I have everything I need packed, so if it gets bad enough Ill leave. Participant 1 replied that there would always be, people who just dont get it. And so you have got to keep hammering. Youve got to have a plan and that is frankly what our job is. You have got to tell them that they have got to have a plan. Theyre not a lot of these people are not go ing to get it on their own. The next question for the focus gr oup, was why they thought that Hillsborough County had put so much effort into its SpNP. Several factors were raised, but most agreed that EOC leadership played a large role, especially when it come to networking with the agencies and tryi ng to get all the players involved to talk on their roles. Consistency of EO C staff over the past decade was considered a positive. Participant 2 replied, Who wants to be a Miami or a Homestead? And the percentages are that we are going to get hit. So we have got to be ready Participant 5 brought up the issue, of Hillsborough County geography and the fact that inland counties had a different mindset, thinking that they would avoid the direct force of any hurricane. Partic ipant 8 supported this, stating that being a metropolitan area, with a large population br ings more funding and key players. This participant also expressed, t hat Hillsborough County was better prepared, partially because of its population density and the fact that it hosted a lot of theme

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148 parks, sporting events, and ot her events that took pl anning and coordination and there was some carry over from that. Some of the rural counties, with much smaller population do not have the staff, to put the system into place. Participant 3 retorted, that it could not be entirely geogr aphy or population density as many large coastal communities in Florida, st ill had not developed extensive plans like Hillsborough County. Participant 1 said that, until we actua lly get hit by a hurricane and have to open the shelters for an extended period of time, we do not know if Hillsborough County has a good plan. Pointing out the issue that many SpNS workers were not experienced, when it comes to working wit h the special needs population, he also complained that t here was a lack of equipment in the shelters, especially appropriate bedding. According to Particip ant 1, without the proper bedding and trained personnel after a few days, there would be major issues with pressure sores. Another issue that came out of the in terviews with SpNP clients, was the media coverage of the forthcoming hurricane season and how a couple thought they were using scare tactics. Most participants responded, that the coverage was adequate and proactive in their efforts to try to get people to develop a hurricane plan. I dont have a problem with scare tacti cs. I think that sometimes they are necessary. Everyone seemed to agree with th is statement and that the media was definitely having an affect on increas ing public awareness. Participant 1 stated, I think the word educat ion has probably come up more than anything. I

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149 wont say all the people, but TV is w hat people do these days that is peoples hobby for the most part. That is the eas iest and quickest way to reach them. The last question of the second focu s group, was how the participants thought that the SpNP could be made be tter. Participant 2 replied that, Until the plan is but to task? I honestly do not know how to respond to that. I guess that we will just have to wait and see. All of the participants made similar comments such as, I think that until it happens we are not going to be able to plug all the holes. It was clear, that participants believed that no amount of pre-plann ing or previous disaster experience with another community could co mpletely prepare any community, for a pending disaster. Focus Group 3 Participants in the third and final focus group were all mid-level executives, in the agencies they represented. Again 11 agencies were contacted, to reach a minimum of 10 participants, for the fo cus group. The one agency declining to participate in the third focus group was t he same agency that could not participate, in the second focus group. Again a conf licting meeting and lack of staff was given as the reason, for not parti cipating in the focus group. As happened in the first two focus groups at the last minute two participants called to cancel: one due to illness and t he other to a conflicting meeting. Agencies represented in the third focus group were: three NFPs, three county agencies, one city agency and one state agency (see Appendix O).

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150 Four of the agencies represented, were actively involved in registering people in the SpNP. There were only two agencies in this focus group that would provide staff to the SpNS, in an evacuati on of Hillsborough County for a hurricane. Two of the agencies represented, dur ing an evacuation, would provide transportation to shelters for SpNP clients. One agency represented, does staff the public shelters. One agency, while not having direct contact with people registered in the SpNP, does help provi de education to the community on the program. Participants in the focus group ranged in age, from mid-thirties to later fifties. As in the second focus group, thr ee of the participants were male and five were female. Of the eight participants in this focus group: two were African American, and six were Caucas ian, one of Hispanic heritage. When asked if the participant agencies had developed an internal response plan to a hurricane evacuation, the six participants required to work during an evacuation, all replied that t hey did. In the process of answering this question, six respondents revealed that they would be working at the EOC, during an evacuation for a hurricane. Six of the focus group participants, were assigned to represent their agencies at the EOC. Du ring an evacuation, the EOC operates as the command center for the county, from where agencies representatives direct the actions of their personnel and use of resources. Many of the NFPs had weak emer gency plans, while two had no internal plans. The representative from one NFP, replied that she was the agency and all records were on her laptop, which she keeps with her. With a ca r for an office, she

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151 was completely mobile. A second NFP was a family operation, head-quartered in Pasco with two branch offices in Hills borough and Orange counties also had not developed an internal plan, for responding to a hurricane evacuation. As the Participant 2 explained, depending on where the hurricane hits, its pretty much come back when you can come back. We don t have a set plan, saying ok this is what we are going to do. According to Participant 6, her c ounty agency had just recently started development of their internal hurricane plan. Currently, depar tmental personnel had assigned roles and knew where to repo rt during an evacuation. She went on to explain, that one of the agencies w eaknesses was that there was no detailed business contingency plans, on how to pr epare offices and what to do with vital records. Participant 8 explained that her agency s internal hurricane plan, was very mission driven in its focus, our agency works the shel ters and we are the ones who do the going out after and doing recon in different areas. Going to different counties depending on the shape we are in. She went on to expl ain, that all staff is expected to have developed plans, fo r caring for their families and pets. It is just like when I was in the military. You have a job to do. We are mandated and we work in shelters, but we are supposed to make sure that our families are taken care of. You cant work, if your families are not taken care of. According to Participant 3, his ag encys plan was more operational or focused on business contingency, such thi ngs as how to close offices, duties during the hurricane, and how to reopen facilities. We also have a plan on

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152 securing our records, storing them, getting them out of the way putting them where they are safe. He went on to explain, that t heir plan did not deal with very well with what to do with employees after the storm; otherwise it was mainly operational, ignoring the human factor. When participants were asked if they had a personal or family evacuation plan, everyone in the focus group replied that they did. But w hen asked if they had supplies stored, three admitted that they did not, even though it was already a full month into the 2006 hurricane season. Two participants cited financial reasons for not storing supplies and a third said, that as a worker in a SpNS food and water would be provided. Of the five parti cipants who reported having supplies, none had their supplies collected together in a box or even in one location. Comments such as, as he said I have sort of stored s upplies that we keep on hand at all times. And we have a propane stove and th ings like that we bought and stuck in the garage, so they are there. But t he stuff is not in a particular box. Responding to the question conc erning caring for families during evacuation, Participant 4 repor ted that this year, for the first ti me, a shelter has been identified for the dependents of people w ho worked for his agency. A school has been identified, as a place for family members to go. A school administrator, a custodian, and an ARC repr esentative will staff the school open to the general public. Participants 5 and 8 reported that thei r dependents would either shelter at home or accompany them to their assigned s helter. One participant who would be expected to work during an evacuati on was single and had made an arrangement for his pets to be sheltered, with his vete rinarian. Two other participants who were

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153 required to work evacuations had spouses who would shelter at home with their families. One of the NFP representativ e plans to shelter with parents and another NFP representative plans to evacuate with family to a nearby ARC shelter, if necessary. When asked what their role was with t he SpNP, Participant 4 admitted that theirs was very limited and the SpNSs were staff by DOH employees. She said that they are currently wo rking on training volunteers for public shelters on how to, recognize the person whos coming in that maybe is inappropriate for a public shelter, so that they can divert them to a SpNS imme diately. You know before they actually get registered and get in wit h the masses. At which point hopefully somebody else, picks up on the fact t hat they are in the wrong place. Participant 4 then raised the issue, that part of the SpNP was plan s to transport many people with disabilities requiring help with pers onal care to public shelters. She commented that, while the public shelters were required to meet certain ADA standards such as handicapped accessible re strooms, the shelters did not have the manpower nor were they properly trained to provide assistance to people needing help with personal care. The criteria that has hist orically been in place is that a person who comes to a public shel ter has got to be able to pretty much handle, take care of themselv es and function independently. January 14, 2006 It was apparent from my interview with several people with disabilities who were registered with the SpNP and were to be transported to a public shelter, they expected there to be people available to help them. Help required, ranged from some help transpor ting from a wheelchair onto a cot, to help with personal hygienic needs.

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154 Participant 6 stated that her agencys ro le was to keep the public informed, with the mission of getting everybody in t he community to develop and know their emergency plan. So throughout the beginning of the season and prior to the start of the season, we are putting out inform ation whether its through the countys access channel or on the website. Or in any informational materials, printed materials urging people to regi ster if they are a special needs situation. And we give the information as to how they can do that. During the focus group It was made appar ent that Participant 2 was a new member of the SpNP, when she made the comment that her organization was, trying to do is come up with a picture t hat that person can put in their window and it well help people know that they need to evacuate, when the cops go by or the EMS program. We want to have some kind of picture in the window, that lets emergency response people know that they ca nt hear you. They are not going to know to evacuate, unless you knock on the door. She was surprised, when one of the other focus group participants, info rmed her that the SpNP had an ADA subcommittee that was already in the pr ocess of developing such a sticker. A person requiring special assistance was to place a sticker that had a six-inch in diameter red dot, on th eir door or a window. January 14, 2006 This shows the problems that arise when organizations in the community dont work together and are not aware of the activities of the SpNP. After the 2004/2005 hurricane seasons, it wa s made apparent that something needed to be done to solve the problem of how people with disabilities, would inform officials that they needed help evacuating in an emergency. Here a NFP and members of the Sp NP independently came up with the idea of developing a sticker, which when placed on a door or in a window would inform emergency personnel that t here was an individual inside, who needed assistance evacuating. If agencies do not work together in

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155 developing a common emergency symbol, a community might end up with a number of emergency stickers, whic h could create confusion among emergency personnel The next question asked of the focus group was: What was the effect of the last two hurricane seasons on your agency s policy and the policy of comparable agencies in other counties? First to respond was Participant 6, From an agencys standpoint, I can tell you I think that no agen cy wants to be known, as not having learned the lessons of Katrina. Nobody w ants to make the mistakes in getting the word out to the citizens and reac hing all pockets of the community. She also explained that the storms of 2004 and 2005, highlighted weaknesses in many Hillsborough County agencies. This was especially true for her agency, which admittedly in the past had not provided emergency management with the attention and resources it deserved. She admitt ed her agency was probably in the middle of the pack, when it comes to comparison to similar agencies in other Florida. Because of the 2004 and 2005 hurricane seasons, where Florida was hit by eight hurricanes, there has been a shift in paradigm at her agency. There is a lot more emphasis, placed on what is happening with emergency management and with emergency response overall. Participant 7 commented that she felt some other counties, were better prepared than Hillsborough County for hurricanes now, because they were recently hit by hurricanes forcing them to addre ss identified weaknesses. Participant 8 responded that immediately after every event her agency had a hot wash, where they examine what work ed, what did not work, and what changes needed to be made.

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156 When Participant 8 was probed about how her agency compared to others in the state, she replied t hat due to their long-term relationship with the local EOC, their hurricane plan was far ahead of others. We really had a good head start through our working with the EOC. And I dont think other counties were as far ahead as we were. Hillsborough County I think had a giant head start on this. We were very ready for 2004. She explained that her agency had sent workers to assist counties in the state, who had been hit by hurricanes and their plans were not as developed as ours. She also in formed the group, that other states had asked if they could use their plan as a model. Participant 1 also revealed that their agencys plan was considered a statewide model. Although he admitted that his agencys hurricane plan, still had some weaknesses. Post-storm issues needed to be addressed e.g., getting employees back to work and how to care for employees at work and child care issues. According to Participant 3, 2004 wa s an eye opener for that agency even though there was no direct effe ct felt in Hillsborough Count y. Like several of the other agencies, his agency sent personnel to help those affected by the hurricanes. Lessons learned from hard hi t areas like Punta Gorda and Arcadia, allowed his agency to observe the amount of destruction a hurricane can cause in a community. Weeks, even months after the storms people were still living in the damaged housing, many without roofs, because there was no place else for them to go.

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157 Because of this experience, Partici pant 3s agency decided that it must develop a plan, to address the issues that evolved out of their experiences in other counties. His agency worked closely with the EOC, over the past couple of years, to make sure that their plan coincided with the countys plan. Currently, other agencies in the state are r equesting Participant 3s agency plan and it is possible that it will be used as a national model. Participant 1 added that since Katri na the citys transportation department had worked with Tampa Housing Authority (THA) and the EOC in the development of emergency routes, that would take bus es into the grounds of public housing located in evacuation zones, so that no one is left stranded if they want to evacuate. Unlike New Orleans, every av ailable bus in Hills borough County would be used in the effort to evacuate people. O ne of the other participants asked, what would be done for those individuals living in public housing, not in an evacuation zone. Participant 3 replie d that if not living in an evacuation zone THA would be asked to hunker down and shelter-in-place. even if they are not in an evacuation zone, they should have a pl an and should be prepared to be selfsufficient for a week. He added that since buses w ould be keeping their regular routes, THA residents did have the option of riding on a bus to a public shelter. Participant 5 commented, Thats something that a lot of people dont do. You need to be ready for 72 hours minimum. Because of safety concerns for volunteers, they will not be sent into an area until it is considered safe because if a volunteer agency gets the repet ition of not protecting t heir volunteers, soon people will not respond. Part of t he problem is that local volu nteers, are affected just like

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158 everyone else in the community and it takes time to bring in volunteers from other counties and states. Preparing to respond takes time and I dont think that people understand that. Participant 4 stated that I think were very, very strong and probably a lot stronger than a lot of other departments, with the caveat that we have been tested in going to other places and helping wit hout having to deal with a situation here . Due to experiences in 2004 and 2005, wher e county personnel were sent to other locations, a great deal of experience wa s gained on issues related to search and rescue. They now provide tactical trai ning to other Fire and Rescue Departments, in Florida. Because of the experti se gained by helping other communities, Hillsborough County personnel now provide tactical training to sister agencies in other counties. Although he admitted that every disaster and every city is different, Hillsborough County would hav e problems that were not an issue in other communities, hit by a hurricane. He added, that his main concern was communication during and after the event wit hin the county. In past, small field events within the county, comm unications had been an i ssue and that was with the cell towers up and operating. Participant 5 admitted t hat if anyone learned a lot about their weaknesses, in 2004 and 2005, it was their NFP. One of the more importance problems, was how to expand and contract their volunteer side. She sp oke of the difficulty in knowing how many people wo uld be available at any given time, because volunteers can decide not to go or leave when they want to. She admitted that part of the problem, was the agencie s inflexibility when interact ing with volunteers. For

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159 example, in many cases the volunteer mu st go through about three days of classes before being deployed. This is a problem as many people show up wanting to go out and help immediately. When told it takes, three days of training they volunteer with someone else, who will put them to work immediately. New training programs were now being developed, so that spont aneous volunteers could be ready to go, within about a four or five-hour period. Participant 5 also admitted, one of t he other things her NFP had learned the hard way, was the importanc e of appropriate risk managem ent. As an example, she said that not all volunteers have a background check done and some inappropriate people were allowed to work with the public. Also volunteers needed to have health checks, to ensure that they were physically able to accomplish their work assignment. She added that while work ing on the recovery effort for Katrina, one of the volunteers had to have a cor onary bypass, making him part of the problem not part of the solution. In the past, according to Partici pant 5, her NFP had been a very fixed culture and rigid in how they reacted to a disaster. She believes it is now understood, that a different culture devel ops around each disaster and the NFP is developing the flexibility to adjust to each situation. S he admitted that there was a lot of resistance to change within the system, from long-term staff You have people, who sometimes are a little too old to think out of the box and you end up with head-butting. The two sides argue over how you can get these things accomplished. She admitted, though the problems have been recognized by the NFP, they have not necessarily been resolved yet.

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160 When probed as to how this NFP compared to sister NFPs in the Florida, the reply was that each NFP covers diffe rent set of needs, depending on the needs of the population in their jurisdiction. She mention, while at a meeting of the Florida Hospital Association, they were discussing roles and responsibilities when one representative mentioned that not every EOC has hospital or NFP representatives participate when they activa te. She said that she was surprised and stated that she thought a ll counties had representativ es from the NFPs and local hospitals, on their disaster planning committees. The response she got was, Oh, yea. I forgot youre in Hillsbor ough County and you know everybody wants to grow up and be Hil lsborough County. She added that she thought, Around the State of Florida the pla nning done in Hillsborough County is highly respected and that the Tampa Bay ARC chapters plan was awesome and was respected nationally. Participant 2 admitted that in the past, her NFP had no plan and only passed on information to clients. When addressing how her agency compared to sister agencies in the state, she admitted that they had little interaction with the other NFPs. She went on to add that t he few times there were interactions between the sister NFPs, conversations tended to focus around what was being charged for their services. When probed further as to how her agen cy compared to other sister NFPs in the state, Participant 2, replied t hat despite lack of government funding her agency was internally strong. Adding, that she had never heard other agencies discuss emergency preparedness issues and could not say what the other

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161 agencies did during hurricane evacuation. But she did know, some agencies in the state, only provided basic services to clients. November 20, 2006 To me the fact that these sister NFPs do not communicate with each other says a lot about the services offered by this agency. It seems that they are only interested in obtaining money for their services and let their clients fend for themselves in an emergency. They then complain that their clients received no services in the shelters and demand to know why they were not asked to provide services. Of course they want to be reimbursed, at the rate of 150 dollars per hour. The next questions asked of the participants was concerning educating the population, especially those with special needs and language issues, as to what services should and should not be expected at the shelters. In the first two waves of interviews with clients of the SpNP, it became apparent that the expectations were extremely high as to what services would be provided, especially in the public shelters. Participant 7 replied that wa s one of the biggest concerns, was that the message was not reaching people, who di d not speak English. She called attention to fact that most people, are leery when someone knocks on the door and says, Hi, were from the government and were here to help you. This was especially true when addressing the migr ant population where people, many of whom are undocumented, are fearful of what the government was going to do with the information. Participant 7 added that lately there had been an increase in efforts to get the information out through respected s ources such as the church, Hispanic businesses, and the Spanish media. But she added that only a few weeks ago, the Spanish media did not show up, when EOC became operational for Tropical Storm Alberto. To this, Participant 5 stated that her NFP and the EOC had

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162 materials in the Spanish language, but the problem was locating the hidden pockets of Spanish-speaking people. Participant 6 stated that reaching the Spanish-speaking population was also a problem for her agency and they were really worried about the elderly, those w ho had no transportation, and people who were homebound. According to Participant 7, in the rura l areas there exists a large population of non-documented Spanish-speaker s, who did not want to be identified. Many of these families have children born in the U. S., who have access to social services, but these services were not availabl e to the undocumented adults. Often these children act as their parents translators, without knowing that t heir parents were in the country illegally. Participant 7 went on to add that it was part of the Spanish culture, to care for your own and during an evacuation for a hurricane whole families will shelter in one home, often a trailer. But as far as evacuating, goi ng to a shelter? No! You wait in line for shelter. I wont have a comf ortable bed. I cant take my espresso. I would rather stay home. Its a shame that our pride wont let us evacuate. They are not going to give me what I need. I have luxury at home and Im not giving that up. She suggested that the majority of t he Spanish population were less attached to material goods and placed more emphas is on life (family, friends, and pets), than the English speaking population. So th ey are less affected by loss of material goods, as they would be by the lo ss of a pet or family member. Participant 2 complained that at the last SpNP Planning Committee, she heard talk that the Hurricane Guide would come out in May just weeks before

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163 Floridas week-long sales tax break on buying hurricane supplies, the first week in June. I am thinking that people are not going to have enough money to buy supplies and that got me heat ed; because I know that I wouldnt be able to buy supplies just like that . In response to this dilemma she developed a list of items that her clients could cheaply buy over time It is the first year that we have actually done anything to try and help individuals in the community. Participant 7 raised the issue that people on disability, get approximately 500 dollars from Social Security and around 10 dollars in food stamps each month. Which the client must cover rent, electric, telephone, and everything else. As they must ration everything, the client cannot afford to pu rchase food and water for future use. She added that majority do not have cars and are dependent on care from parents or children. According to Pa rticipant 7 many of her elderly clients were shut-ins and the only caregiver they see is from an HHA, who comes twice a week to clean or provide personal care. Participant 4 suggested that a lot of people did not regist er for the SpNP, they did not have need of a shelter, bec ause they had a both a plan and people to take care of them. As a consequenc e, he believed that there were many individuals in the community with special needs that were unknown, to the public health system. He added, as you know our whole population is getting bigger. There are a lot more of those folks in t he community than there use to be. have stretchers that can accommodate up to 650 pounds Thats not to say, that it is easy to get a person that weights that much into the back of an ambulance. Both AMR American Medical Response a priv ate service and Tampa Fire and Rescue,

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164 now both have what they call a Bariatric Unit, which has that same capable stretcher. It actually has like a wrench and a ramp that can be used to pull people up. So there are specialized vehicles for that. Hillsborough County Fire and Rescue dont have one, but are getting a hy draulic stretcher, which will help a great deal. Others in the group agreed that there was a need to identify the people with special needs in the community, who under normal situations do not need assistance from the community, but who may need help after a hurricane. This may be especially true, if electricity is lost for an extended period of time. To this Participant 7 replied, that a lot of people did not understand t he issues, with being disabled. Emphasizing the dependency on the family, to the point where you become fearful, you might bec ome a burden. She explain ed that the mentality of the person with a disability was a mixture, of embarrassment and fear. They feel embarrassment, at having to ask for help fr om strangers and they fear that their needs will not be met at the shelter. Participant 7 said that many of th e agencies, actually discouraged people from signing up for the SpNP, by saying that they should rely on family first. She added that families could not always be depended on to provide assistance. All of the other participants insist ed that this was not the case and that they wanted people to register, even if they had no intention of using the services. Participant 5 felt, as a whole the community did a pretty good job at getting the word out about the SpNP, but people pretty much ignore it. You never think that it is going to happen to you, it is always going to happen to somebody else.

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165 Its just the American ment ality that it is not going to happen to me, its always somebody else. And we go on with our lives. Most of the other participants thought more outreach was needed, to educ ate people. Participant 2 emphasized that many in the deaf community, will not evacuate to a shelter, unless an interpreter is always available. She then added in the deaf community many do not evacuate, because they also live in a state of denial, hoping the hurricane does not affect them. Participant 3 pointed out that it was the responsibility of DOH, to make sure that people were educated and that hi s agency helps by passing on that information to residents. He stressed that his city agency, people meeting the qualifications to be in the SpNP register for the program with the caveat that if they did not want to evacuate they did not have to. Our philosophy is to have you register, rather than have you not registered at all. At least we know who they are and that they are registered. And it becom es their decision whether or not to go. But then nobody can come back to us and say you didnt register so-and-so. He added, his agency went to the point of helpi ng to fill out the paperwork and faxing it to the DOH. Participant 8 replied that locally the DOH does not do a lot of education, as that was the function of the state office in Tallahassee. In Hillsborough County, once a person is registered with the SpNP th ey are sent a list of items they should bring to a SpNS, but the same service is not provided to people not accepted into the program or assigned to public shelters or hospitals. She went on to add that the issue was not education, but rather it was convinci ng people to plan. To

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166 support her point, she referred to that whenever a hurricane appears to be headed for the Tampa Bay area, the registrati on forms for the SpNP suddenly pour in It is not like people do not know about the progra m, it is just a level of compliancy, until they feel directly threatened. The whole group expressed frustration, at getting the special needs population to r egister and prepare for evacuations. You can talk to them till the cows come home, but if they arent motivated to act on it, it aint gonna happen. Participant 8 stated We try to tell them year-round, to please register. Do not wait until the last moment, because the la st minute is a bad time. Thats the time that we are getting staff together, we are preparing, and we are getting our resources together in the shelters. We ar e getting people out. T hat is not the time for us to be waiting by the fax machine, fo r your form to come through. You know, at that point we got to get the information to transportation. We got to get the information to whomever so they can come get you. So what is happening when we get those forms when we go to the shelte r its like well shoot ok its like this one doesnt need to go to a shelter. This one goes to Red Cross shelter, needs transportation, needs, needs and you are by hand at that point. And thats a prime time for somebody to get missed. A nd that is not what we want, that is not our goal. We want to take care of people. Participant 2 stated that she thought t hat using scare tactics is a good way to motivate people. To which the Participant 3 replied Speaking of scare tactics after Katrina I was watching I think that it was one of the fire Captains who said: People wont evacuate and people wont leave even though we had asked them to.

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167 Then he came up with the tactic of telling people to take a permanent marker and write their phone number social security numbers down on their arms so that when your body is found, they know who you are. I thought that that was a pretty good scare tactic. Participant 5 informed the group, that in New Orleans after Hurricane Katrina, she learned that bef ore working with a community the cultural brokers needed to be identified and their support obtai ned. For instance, she mentioned that religious leaders, as what they say is taken seriously by that population. Stressing the importance of educ ating people as to what the conditions in a shelter will be, what they need to bring to prot ect themselves, and the need of developing a plan before the crisis. Maybe what we need to do even more than education is if somehow you could teach them motiva tion. Even like a Dale Carnage kind of environment. Because that is really what it comes down to. November 23, 2006 Everyone in the group seemed frustrated with the fact that no matter how hard they try to get the word out, many people with special needs refuse to register or prepare pers onal plans for evacuation. How do you teach motivation? How do you motivate peopl e to prepare for a hurricane that may not come during their lifetime? Public health has been unable to convince people to avoid high-risk behaviors (e.g., smoking, lack of exercise bad nutrition, wearing seatbelts). We still have not convinced the government to develop be tter mitigation steps fo r hurricanes (e.g., not building in flood zones, building hurricane proof buildings,) According to Participant 5, after Hu rricane Katrina, her NFP learned that some people chose not to evacuate, bec ause of pets and farm animals. She added that service animals couldnt be turned away from public shelters, as it is against the law. But it creates a whole new step, in that there is a need to get people with service animals to pre-register for shelters Because we just need to

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168 know that they are coming. Many of t hese individuals are self-sufficient, can take care of themselves and do not need to be placed in a SpNS. But it would sure help, if we knew that they were bringi ng service animals with them. The emotional service animal is another big issue. As the time scheduled for the focus gr oup was about to expire, a couple of questions in the interview guide were skipped and the focus group was asked: Why Hillsborough County put so much effort into its SpNP over the years, while some other counties have not? To which Participant 3 replied, he believed that Hillsborough County is in the forefront of dealing with disast ers and emergencies because the EOC staff, saw the need and are doing whatever they possibly can to meet the need. Several other participants agreed with this and expressed the belief that Hillsborough County had some forward thinking people in emergency planning. Participant 1 stated that he thought that the SpNP is where it is today, because of the actions of community political leaders. Thats why we put them into office, its the right thing to do I gue ss. They have to have the foresight. One of the few things that they had the foresight on, I might add. They just didnt have the political hit on them if things went wrong. He added that with the EOC staff we are very lucky, because not only are they are good at what they do, most have been here a really long time. Thats what happens when you have a good staff they start working together and becom e eventually a really good team. As time was running out and people were beginning to leave, a last question was asked, concerning what they thought could be done to make the SpNP better.

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169 Participant 3 replied that he did not k now how the program could be made better, except that we should be communicating to people, that they should be registered even if they decide not to evacuate in the future. Tell them, Nobody is coming to drag you out of your home and tell you that you have to go. When probed as to how to communicate that to people. He replied, I dont know. I think aside from going door-to-door and registering everybody that has special needs. I dont know. When asked how to improve the SpNP, Participant 5 replied; What can we do better? The two of us (referring to the representative from deaf services) can get together, now that we have met each other. I think that there are some agencies that are involved who work fully with the SPNS, but I think we definitely need to have better communications. She added that she thought that member agencies of the SpNP, needed to improve their communications with each other to improve the program. Participant 7 suggested that if the SpNP involved more people with disabilities and respected them, as regul ar everyday people, then there would be more information out ther e. She added that the disabled community was scared Were scared. Were traumatized. You k now we cant walk like everybody else walk and get around. We dont have a car, how do we evacuate? You know everybody evacuated in their vehi cle, what are we going to do? To this comment Participant 5 responded, The thing is its on going. We ll never get it perfect. The other thing is that youre managing an em ergency, a catastrophic event, things will go wrong. You know nothing w ill ever be perfect. Youll never get it 100 percent

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170 right. You minimize the number of people t hat die, the number of people of people that get injured. You do t he best that you can, with w hat you have and with what youre faced with. And I think we do a good job of that. Now are we going to run a perfect emergency? I dont know that that will happen in our lifetime. The definition of an emergency is that things are not going to go perfectly. And I think that as a society that we forget that. Many of the participants agreed with t he statement that our society wants everything to be perfect. During a stor m nobody should die and we want to be able to set in our houses, with our cable television and air-conditioning. Everyone agreed that most people in America live in a state of denial. Common comments were, We are very spoiled and t he other thing I think is we rely too much on government. I dont have to worry about it as the government will be here in two hours and fix it for me. And its a mentality and I dont know how to fix it. The final comment made by Participant 8 was: The people have amnesia but the workers do not. No matter what you are going to be at that shelter, youre going to be driving, youre going to be doi ng this, youre going to be doing that. And its in our face all the time. Its part of our job. No one wants to not have learned what happened with the leader ship in New Orleans and the embarrassment of the media coverage.

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171 Characteristics of SpNP Clients Interviewed SpNP Clients The first wave of 10 interviews consis ted of four partici pants from the first dataset; five participants fr om the second dataset and one participant from the third dataset (see Table 3). Of the 10 individual s who were interviewed five were male and five were female (see Appendix P). The second wave of 10 interviews consisted of one participant from the first dataset, five from t he third dataset, and four from the fourth dat a set (see Table 3). Of the 10 individuals who were interviewed, five were male and five we re female (see Appendix Q). The third wave of 10 interviews consisted of one participant from the third dataset, seven from the fourth dataset, and two participants who were not in the SpNP database (see Table 3). Of the 10 individuals in terviewed four were male and six were female (see Appendix R). Participants interviewed consisted of, five African-Americans and twenty-five Caucasians, with six of Hispanic descent. Of those interviewed, 25 lived in an urban setting and five in a rural setting. Nine of participants were assigned to an ARC shelter, six were assigned to a SpNS, eight were assigned to a hospita l, and six were assigned to Shriners Hospital. One participant wa s not registered in the SpNP. Two of the participants were dialysis patients. Three of the participants were bedbound. Six of the participants were obese. Thirteen of the participants were dependent on a wheelchair. Eleven participants were depend ent on electricity. Twenty-two of the participants were interviewed directly and fo r four of the interviews a spouse was

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172 present. In eight instances the care taker was interviewed: one father, two spouses, two mothers, and three grandmothers. Eleven of the participants were born in Florida, three in New York, two in Ohio, two in North Carolina, two in Puerto Rico, and one each in: California, New Jersey, New Mexico, South Carolina, Texa s, Virginia, West Virginia, Wisconsin, Peru, and England (father in U.S. Air Force). Ages of the partici pants in the SpNP ranged, from three to mid 80s, with an average age of approx imately 46 years old. The time spent in Florida ranged, from hal f a year to approximately 83 years, with an average of approximately 27 years. The length of time in the SpNP ranged, from six months to 13 years, with an av erage of approximately three years and six months. Sixteen of the participant s claimed to have a good informal support system and 11 were receiving professional care in their homes. Income estimated by value of home or rental unit found th ree in upper-income housing, 11 in midincome housing, and 16 in low-income housing. Nine participants had never experienc ed a natural disaster. Nine participants had experienced a hurricane. Seven participants had experienced a tornado. Six participants had experienc ed a flood. Two participants had experienced an earthquake. Two partici pants had experienced a forest fire. One participant had experienced a snowstorm. Eight of the participants falsely believed, that Hillsborough County was hi t by hurricanes, in 2004. Of the 27 participants in Hillsborough County during the 2004 Hurricane Season: three

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173 evacuated all three times, one evacuat ed twice, seven evacuated once, and sixteen stayed at home. Outcomes of SpNP Client Interviews Wave 1 SpNP Client Interviews When participants were asked, what their past experiences with natural disasters had been, two reported that they had no direct experience. Two reported living in areas of the country as children that flooded, but the fl oods had not directly affected them. When Participant 10 was pr obed as to the how they were affected by the tornado, they responded, It didnt really, I was really sad to see it. But I really never saw one person hurt. I think if I had seen a person hurt, I would have been affected more so by it. Four participants reported their only expe riences with natural disasters were in 2004, when three hurricanes hit Hillsborough County. While Hillsborough County, was skirted by three hurricanes in 2004, actual wind speeds never reached hurricane force. Still Participant 4 said, I was scared being by myself. I sat in the hallway, with a pillow, my bibl e, my cell phone, and a bottle of water. I was talking, when it really got bad I was talk ing to my parents, in Virginia and they could actually hear the wind wh ipping. And the strong gusts they could hear it. If I had not had them to be talking to, I probably would have gone crazy. Because nobody could come over here and get me, because of the fact, you know, I am on a scooter. Back then, I had a bigger scooter, than I got now.

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174 Participant 2 when asked about experienc es with natural di sasters replied, I have seen manmade disasters in war, but as far as hurricanes I recall a hurricane in 1939 and watched a tree fall over on the barn and a few roads clogged up. I have seen the re sults of hurricanes here in Florida, but have had no direct participation in any of them. Having had a direct experience with a hurricane, this participant realized that Hillsborough County had not been hit by hurricanes in 2004. When ask if participants had relatives in the area, only three were on their own. Participants 4, 5 and 9 lived alone, with only a small support system consisting of friends. Participants 5 and 9 evacuated to a friends house for the countys first evacuation, but both sheltere d in place for the following two county evacuations. During the first evacuation Participant 4 waited too long to contact her support group and they were turned back by police on their way to get her. Participant 4 also called her friends to help her during the second evacuation, but for some reason they could not come They could but they didnt. I dont know. It was quite heavy, but they had lifted it befor e. But ya know they got families to think about and take care of. I got invit ed, but unfortunately with the scooter and the ramp; they wouldnt be able to pick me up and carry me out there into their house. Not wanting to impose on her friends again, Participant 4 did not call them during the third evacuation and sheltered in place. Two of the participants interviewed had a spouse or significant others, but no real support system. Participant 3 re cently moved to Tampa from New York with her fianc and they have no local supp ort system. Participant 3 moved to

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175 Tampa just after the 2004 hurricane seas on, but the other participants had their support systems tested during the three evacuations. Though living with her husband, Participant 7 has no professional support system. While living in a flood zone and ordered to evacuate in 2004, they c hoose to shelter in place rather than relocate to an ARC shelter, because of pets. Five of the 10 participant s not only had relatives, but a relatively strong professional support system. With parent s living nearby, a friend as a roommate, and a live in caregiver, Participant 1 probably had the strongest support system. For the first hurricane evacuation he went to his parents, who live close by, but felt the storms never got close enough to evac uate again in 2004. Living with his wife in a local Adult Living Facility, Participant 2 also has a strong professional support system. They were not in an evacuat ion zone during the 2004 hurricane season and stayed in their apartment. Both Part icipants 6 and 8 have children who live nearby and provide support. Living in a trailer Participant 6 went to their daughters during the first evacuation, but did not during the next two evacuations, as the storm did not come close enough. Participant 8 does not live in an evacuation zone and did not evacuate in 2004. Severely handicapped, Participant 10 was 16 years old and is taken care of by his gr andmother. While the grandmother claims that his care, is strictly my job, my life , there seems to be a strong support system. The grandmothers son lives in t he household and takes care of the yard, there was also a housekeeper who came twice a week and the child gets occupational, physical, and speech t herapy. The grandmother evacuated

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176 Participant 10, to the SpNS during the fi rst evacuation in 2004, but felt that the storms did not get close enough to evacuate again. When ask why participants needed to be registered in the SpNP, six participants reported that they were in wheelchairs and would require transportation to a shelter. Reasons for bei ng in a wheelchair varied. Participant 1 was born with spinal bifida. Participant 4 has a serious case of rheumatoid arthritis and her bones are becoming brittle. Though she can maneuver around her small apartment Participant 5 uses a wheelchair, when she l eaves the apartment. When asked why she was in the SpNP Pa rticipant 7 responded by saying, I need help with a lot of stuff. Like, I did not learn that much in school. When probed as to why she was in a wheelchair she did not provide an explanation. Both Participants 8 and 9 were bound to a wheelchair due to t heir obesity, which interfered with their ability to walk. The fianc of Participant 3 register her for the program due to her cognitive disabilities from a recent stroke. The fi anc realized that since they used the bus system for transportation, there was the c hance that she would require assistance getting to an ARC shelter in an emergency si tuation and he would not be able to reach her. The remaining Participants 2, 6, and 10 had access to transportation, but were registered in the SpNP as being dependent on oxygen required access to a continuous supply of electricit y, which was available at the SpNSs. Participant 10 also needed access to electricity, for a variety of medical equipment and monitors required to keep him alive.

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177 When questioned as to how participants learned of the existence of the SpNP, there were a variety of responses. Two of the Participants 1 and 8 were registered by HHAs. Upon moving out of his parents household Participant 1s HHA immediately registered him for the program. Part icipant 8 had been wheelchair bound for almost 9 years, bef ore she heard about the program. After witnessing the damage caused by Hurricane Katrina she expre ssed her fears of being stranded during a disaster to a HHA, who was treating a leg infection. The HHA registered her for the pr ogram. When asked if her do ctor had ever mentioned the SpNP, she responded that he had not. Three Participants 5, 9, and 10 were regist ered by social workers. Living in a housing complex for low-income seniors, Participants 5 and 9 were registered by the facilitys social worker. Partici pant 5 had been registered four years earlier when she moved into the facility. Accord ing to Participant 9, after the 2004 hurricanes the facilities social worker passed out applications to everyone. When the grandmother received custody of Partic ipant 10, Floridas Childrens Medical Services was involved and it was required that she register him for the program. Other participants learned about the program from a variety of sources. A friend of Participant 2 told him about the SpNP. Participant 3 read about the program in the local newspaper Participant 4 rides a bus back and forth to work and was informed of the SpNP by the bus driver. It seems after the 2004 hurricane season, HartLine developed a policy, wher e the bus drivers were to inform disabled passengers about the program. Participant 6 heard about the program in 2002, but he was not sure from where and admi tted that it was difficult to get any

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178 information on the program I just know that I call ed around and asked all kind of questions. I called the doctors office and he did not know what to tell me to do. He told me to call the Heal th Department. I called t he Health Department and I called Tampa Electric, but they didnt know nothing. Then I called 211, and she said how did you get this number? And I said by being nosey. If I got something to do I dont stop till its done. I get a ll the information I can and I study it. When asked what the participants exper iences were during the registration process for the SpNP, seven of the parti cipants reported that the process had been quick and the forms easy to fill out. Two par ticipants admitted that they could not remember the process. The caregiver for Participant 3 complained that it took several months to get a response to t he application. After questioning, the application was made just after the thr ee 2004 hurricanes, when DOH was in the process of taking over the SpNP database. This was a time when there was a lot of confusion and application turn around ti me was very slow, due to the large number of applications for the program. Only one participant knew anything about the program and that was the caretaker of Participant 10, who had onc e evacuated to a SpNS. All the other participants knew little or nothing about the SpNP. The problem for caregiver of Participant 10 was that he has been rea ssigned from the Sun Dome SpNS to Shriners Hospital. Her experiences getti ng information on Shriners were not good. I called Shriners. You know that I had to call three times before I got somebody to return my phone call. Three times over a three-week period before I got someone from Shriners to call me back. And even then they couldnt answer my questions.

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179 They did tell me to go ahead and bring my nu rses with me, that we would not have a nurse from Shriners. So t hey did tell me that, so I said what door will we come in when we get to Shriners? They couldnt tell me. Few really did not seem concerned that they had little knowledge about the SpNP. In fact, Participant 2 admitted that, I have given very little thought to the program other than to the fact that I know it is there and it is available in case it should happen. I know that there has been some planning. How it is going to work out I have no idea as I have no ex perience. I have not been given an evaluation of the program nor do I desire to in vestigate as it is not a high priority today. When probed as to what he would do if a hurricane were headed this way he replied, First I would pray. Then I would get onto the Internet to find out what I could. Then I would start pulling things together. Only three of the 10 participants said that when called to evacuate they would respond immediately. When asked why, Participant 2 replied, I have seen too many people who refused to go have too many problems. The caregiver for Participant 3 said they would evacuate i mmediately due to the number of large oak trees that leaned over the apartment, w ould could fall and crush the apartment during a hurricane. Motivated by what she saw in the news coverage of Katrina, Participant 8 made clear that she w ould evacuate when requested by saying, What you mean? I be trying to get to safe ty. What would stop me I wouldnt even be thinking about that. Yea, any day they come to get me I be ready to go. If it flood you know I want to go.

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180 Three other participants indicated t hat they would not evacuate when requested, unless it really lo oked to them that the hurri cane would make landfall in Hillsborough. Though he does not consider thei r older trailer to be a safe place to be in a hurricane, Participant 6 indicated that they would try to stay in their home because, Everything we have is here. We try to stay here. If we see what we get then we stay here or we make arrangements to go somewhere with my friends or somewhere where there is a house big enough to contain us. When probed as to why they would not go to the SpNS, the reply was from the wife, My husbands fear is that if he gets ar ound a lot of people as bad as his lungs are that he might catch a germ and be back in the hospital. He could die from it. He likes to be alone, he doesnt like crowds, and he is kind of paranoid. She also added I think common sense should tell you when it is time to go. If you ar e a scaredy cat you need to get out of here. If you are not afraid I was born around thunder and lightening storms and stuff. Of course that was 70 y ears ago and that I never was afraid of it. But down here, yea. I am afraid of it since it is more serious Not evacuating in 2004 because it nev er flooded, Participant 7 also admitting that they would wa it until the last minute. When probed as to why they would wait until the last minute they replied, Because of the dog and the birds, they are like our kids. Asked if they were to see on TV that the hurricane was really going to hit would they then evacuate before it starts to flood? Participant 7 responded, Yes, but only if we could take our pets. Otherwise we would not evacuate. It should be noted that up to th is point the only other person interviewed who had a pet was Participant 8. When Participant 8 was asked about

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181 the issue of what she would do with her dog, she replied, A pet, no they aint taking. I have to leave her. I hadn t even thought of her at that time. In 2003 Participant 9 went to a friend s house for the first evacuation but sheltered-in-place for the second two evacuation orders. When asked why he responded, the last two storms did not look lik e they were going to hit us and I did not want to impose on my friend. He then admitted that in the future he might not evacuate if it looked like the storm wa snt going to hit us. Also following only the first evacuation request, Participant 10 explained, It is so much to evacuate. And when you dont know what you are headed into. Like I did not know what all those people in there had. I was so glad that we had to be on the second floor by ourselves over there. Because he has a trake and I keep him as clean as I can. She also admitted that he needs to have nurse s and it was difficult to get nurses to go with they are more interested in taking care of their own children. Two of the participants made it clear that they planned to shelter-in-place. When asked why he would not evacuate, Participant 1 replied, I have a comfort zone here. The house is new and I do not thin k that much could go wrong. It is a smaller house but then it is good to be with family during a disaster. This is my house and I think that I would feel safer in my space. Since her older home had made it through the three hurricanes in 2004, Participant 4 felt that she would be safe sheltering-in-place during future hurricanes. When probed if she would evacuate during a Category 3 hurricane, she r eplied that she would think about it. Participant 4 could not be convinced that the hurricanes had actually missed Hillsborough County, in 2004.

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182 Having a different outlook on the evacuat ion issue Participant 5 felt that it was useless to evacuate. If it is your time to die, it is your time to die. It doesnt matter if I am here or in a shelter somewhere. If it is my time to die I will. Water is going to come from everywhere, from the ri ght, from the left, from below us and I think from above us. There is nowhere to run. Though the truth was that being in a flood zone, it is unlikely that the m anagement of low-income ALF she lived in, would allow residents to shelter-in-place. Seven of the 10 participants admitted that they did not have supplies, such as food, to take with them to a shelter or use at home in an emergency. There were several reasons given and the mo st common was by Participant 4 who responded, At the beginning of hurricane season, wh en it really begins to look like something is going to happen, that is when I start getting ready my food, and my batteries. You know, making sure my pres criptions are in plastic bags, stuff like that. But like, right now it is not necessary. There were also several participants who admitted to having financial difficu lties and were not able to purchase supplies, to be used sometime in the fu ture. The husband of Participant 7 provided the following comment, One reason we have not started preparing anything yet is because they took her SSI and food stamps away after we got married and I get too much money for my di sability. I turn 60 next month and my military retirement kicks in. So we will be better off financially. Participant 1 who has a live-in staff, said that he would get t hem to help develop of checklist of what was needed and then they would go do the s hopping, something that he could not do for himself.

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183 Only Participants 3 and 6 had the requir ed supplies but both admitted that everything was not stored in a singl e location. Participant 3 said, We have everything we need. I can just grab it and throw it into a box if we had to evacuate. Upon questioning the caregiver of Participant 10 confirmed that she had supplies for the child but not for herself. I had not though about us. I had everything that I needed for him, but it was really a blessing. It has always been a hard road for us and he is my first thought. I dont always get to that second thought. When asked, six of the participants sa id that they did not have extra medications for emergencies, because thei r insurance company only provided only a months worth at a time. Both Pa rticipants 4 and 8 had extra medications, because they do not take all of their monthly allotment and have extra saved. Participant 2 gets allotments of three months medication at a time, which can be refilled 10 days, before depletion. Cons equently, Participant 2 would only have a problem if the evacuation occurred just bef ore refills could be made. Participant 6 stated that if extra medications were needed, all he would have to do was call his pharmacy and they would provide the medication. In response to the question as to the evacuees responsibility when evacuating to a shelter, Participants 1 and 5 (who had no intention of evacuating) responded that they had no idea. Partic ipants 2, 6, and 10, who have access to transportation, were in agreement that t heir responsibility was to gather their supplies and arrive at the shelter before the hurricane arrived. The caregiver for Participant 10 added that she would also be responsible for her grandsons care at

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184 the SpNS. The focus is right there, that is the primary focus. And then I always take added responsibility to make sure that where we are at while I try to protect our things. I watch out for the area that we are in. Watch for cleanliness. Watch out for Johns to protect not only him, but people within the area. Dependent on transportation Participants 3, 4, 8, and 9 a ll thought that their responsibility was to get everything together, so that when their ride arrived, they were ready to leave. When asked what the countys responsib ilities were during an evacuation, seven participants (1, 3, 4, 5, 7, 8, and 9), responded that transportation should be provided to and from the shelters. The other three participants (2, 6 and 10), have access to transportation and would not require that service. Six participants (3, 4, 5, 7, 8, and 9), also thought the county was responsible for providing a safe environment at the shelter. According to six participants (1 2, 3, 8, 9, and 10), the county should provide food and water in the s helters. In fact, Participant 8 asked what the county did about peopl e who had special diets. Four of the participants (1, 2, 3, and 9), expected some kind of cot to sleep on. Participant 2 was particularly concerned about the sleeping facilities If we sleep on the floor they will need a lift to get me and my wife up. My wife is in a wheel chair. And while I can get up off the floor it is with great difficulty. Only Participants 2 and 4 brought up the issue of access to electricity. Pa rticipant 2, who is assigned to a SpNS, will have access to a continuous supply of elec tricity. On the other hand Participant 4 is assigned to an ARC shelter, which may not have access to electricity to charge her scooter. Participant 6 thought that the county should be responsible for

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185 communicating to people, when it was necessary to evacuate and to make sure that traffic was kept moving on the highways. When they arrive at a county shelter, f our participants (1, 3, 7, and 9), felt that they should be provided with a ssistance in personal care and taking medication. Since all four are assigned to an ARC shelter, this assistance will not be provided. The caretaker of Participant 3 was concerned that if she had to go to the shelter on her own, she could hav e problems due to her mental status. Say I am not here and she goes by herself and she does not know what to do for herself. That she is taken care of and I do not hav e to worry. Just knowing that mentally she cannot do it herself and that someone will do it fo r her, take care of her. Participant 9 stated that he needed assistan ce getting in and out of his scooter, when going to bed or the bathr oom. Participant 1 felt t hat in addition to personal assistance, the county was required to ensur e that persons with disabilities have easy access to buildings, used as shelters. I think if we are paying taxes we should have the benefits of our tax money. I think it is the moral and legal responsibility of the county government to care for us. They are here to help and govern over us and I think that they should be responsible. I do not think that that is too much to ask. I think that the government should help everybody that they can. Again it might take money, but if it is going to save peoples lives and enrich their lives I think it is well worth it. Unlike the other nine people interviewed Participant 5 had no expectation of the county, in fact, she was not sure t he county should have a SpNP and that it was just a waste of a lot of money. S he thought that it should be up to people to

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186 take care of their own needs. When asked if the county should help those people who needed help getting out of th eir apartments, she replied, I need help as I have no-body to help me. They should stick to people who need help. Let everyone else take care of themselves and just help them that need help. Other participants when asked what they thought of the SpNP, Participants 2, 4, 6, 7, and 8 thought that they did not have enough information to express an opinion about the program. As expressed by Participant 2, I do not know much more about it than I have already told you, so I really do not have much more of an opinion on it, than I have already told you. It does seem to me that some planning has gone into the development of it and how that planning will be put into effect, I have no idea, as I have not seen it done. The remaining participants (1, 3, 9, and 10), held positive views of the program. Most of t he positive comments about the SpNP, were similar to those made by Participant 9. It is great to have for people, for residents so that they w ould have a place to go to get out of the way of danger because there is going to be bad weather. It is a great thing to have in emergencies. Good Safety net. The only person interviewed who had direct experience with an SpNS was the car egiver for Participant 10 commented, You know I couldnt of asked for a better thi ng. And I was really pleased with the way things were handled. Overall I think that it is extremely, extremely efficiently, very organized. When asked what the participant would change to make the SpNP better, eight participants (2, 3, 4, 5, 6, 7, 8, and 9), replied th at they did not know enough about the program to give a response. Participant 2 did not seem to be very

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187 concerned about his lack of k nowledge concerning the SpNP I have given very little thought to the program, other than to the fact that I know it is there and it is available in case it should happen, but w hat the odds are I do not know. I am not one who calculates the odds even in cards. I know that there has been some planning. How it is going to work out, I have no idea as I have no experience. I have not been given an evaluati on of the program nor do I desire to investigate as it is not a high priority today. When asked what he could do to make the SpNP better, Participant 1 commented that there must be meetings and advocacy programs that he could participate in, help at, and express opinions. Only Participant 10 had any direct experience wit h the SpNP, stating that the intake procedure could have been handled in a more effective manner and there should be better cots to sleep on. Keep in mind that I arrived there the next morning. The arrival was not handled very well. So in my eyes they needed to have the table manned and a set procedure for receivi ng people. It did not seem to happen. Maybe the evening before it happened, maybe I did not see it. Got there late and was not able to get one of the better cots The cot that they had was very hard, when you are trying to deal with someone w ho weights as much, you are either on your knees or you are bending over and it is hard on the nurses. All participants felt t hat Hillsborough County developed a SpNP, because it was the responsibility of the government to care for resi dents. Like many of the other people interviewed, Participant 9 believed that it was the governments responsibility to make sure what happened in Katrina never happens again. Participant 3 believed, the government wa s responsible to help the communitys

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188 economically disadvantaged and that by dev eloping a program to help these people the county was dealing with potential future problems. So, deal with it right up front. So it doesnt come back and bite you on the ass up the road. I mean some people care, but basically it is a li ability issue. Lets cover our butts now. Participant 10 also believed that the SpNP was developed by the county, to avoid future litigation issues. Seven of the participants (1, 3, 4, 6, 8, 9, and 10), suggested that Hillsborough County developed t he SpNP because of the large number of people with special needs in the c ounty. Participant 1 sugges ted that the program was developed to, help those that need more assist ance in the community. I think that they saw the need and took the in itiative to do something about it. It was suggested by Participant 9 that the county was worried about the residents with special needs and developed the SpNP to improve the wellbeing of residents. Three of the participants (4, 5, and 10) thought that because the county was located near the water t here was a greater need for a SpNP, than other inland counties. Three participants (4, 6, and 7), thought that the population size of the county provided a larger tax base giving the county access to funding those smaller counties would not have. According to Participant 6, We pay a lot in taxes so they ought to do something. Only two participants stated, they thought that the SpNP was developed due to local leadership. Participant 1 said, he thought that local government saw the need in the community and took the initiative to solve the problem. Participant 7

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189 suggested, since the county has a large pop ulation and has more money to spend it was able to hire people with a better head on their shoulders. During the interview, Participant 5 raised the issue of the local news coverage prior to the hurricane season. Before hurricane season even starts they start warning everyone about this and that. Telling us you had better start preparing. Get people worried, before anyth ing happens. Why do they do that? Every night on the news, they talk about hurricanes, it just worries people. When asked why she thought they had so much coverage before the hurricane season she replied, Because they trying to get people to prepare. If it happens it happens. If it dont, it dont. If I got to go, I got to go. Why keep on and on? Trying to scare people. There should be a better way of telling people. The caregiver for Participant 10 agreed, the news hounds ar e over stating the problem and were trying to scare the public We have a high population of elderly and to hear some of the ways they present it on these news casts things, they probably are responsible for some heart attacks. You k now with the way that they present it. These poor families, they are convinced t hat they are going to be blown away, in a hurricane. And it is possible for them to do it, but I think that they build it up and take it way beyond what they should. The caregiver for Participant 10 also admitted, she watched for their maps and projections as to where the hurricane was headed. I watch for that on the newscast and I listen for the evacuation report. When raising this question in the following interviews, Participant 7 also admitted that the news coverage scared her, but when asked if it scared her

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190 enough to buy supplies she said no, but she will start. Both Participants 8 and 9 maintained that all that news was needed, to get people to get prepared. When asked if the news coverage was too much both responded that it was not enough and that they watched every bit of it. When asked what special needs meant, almost every participant thought that I was talking about their special medical needs, such as medical care. Participant 4 thought, special needs re ferred to people that couldnt do for themselves. There are special needs people who are on oxygen or probably even dialysis. I dont know what they do in a hurri cane. It is not just adults or anything, but there is children who has to be on oxygen, people with asthma and things like that, that they cant get ou t. People who cant walk, like me. You know they just had surgery. All kinds of things like that might count for special needs. Confined to a wheelchair, Participant 8 responded, people with special needs might have needs different from hers. One participant raised the issue of wh y she chose to participate in this study. You know when you wrote me I was ki nda of you see on TV these studies and they want you to come over so they c an do a study on you. I said no. I did not want to get involved. So I spoke with a friend, I said this got to get his doctorial. She said oh, well he trying to become a docto r. I said ok, I participate, cause my needs might help somebody else. That why I decided to call you. You say special needs and I know that I am going to need some help. So I said maybe, I give this a try.

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191 At the end of the interview each par ticipant was asked if they had any questions concerning the SpNP. Only Participant 10s caregiver admitted having much knowledge concerning the program and she had questions concerning her grandsons relocation form the SpNS at the Sun Dome to Shriners. Four of the participants (1, 3, 5, and 9), had no followup questions. Both Participants 2 and 6 asked about the oxygen supply at the shelte r. Participant 6 was also worried about the kind of people that would be at the shelter. Partic ipants 4, 7 and 8 asked if there would be people at the shelter, to hel p with personal care. Also, Participant 8 wanted to know how she could help a relative, get into the program. Wave 2 SpNP Client Interviews When asked what about experiences with nat ural disasters, four of the 10 participants had no direct experiences, one had been in a blizzard in New York, four had been through a tornado, and two had ex perience hurricanes when living in Puerto Rico. Participant 16, who had experienced the blizzard, experienced it at a young age and said that it was a good exper ience since her dad took care of everything. Participant 16 added that s he preferred snowsto rms, to Floridas summer showers. When probed as to why, she replied that with a snowstorm you have advance warning and can prepare. While in Florida you can be driving your car and out of nowhere comes a terrible rain fall. She went on to add that during the rainstorm, you could not see the road and locals do not pull over, or even slow down.

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192 Four participants had experiences with tornados, though one had only heard what sounded like a train, only to find out later that a tornado had landed about a mile away from her home. Two partici pants had lived in home destroyed by a tornado. Participant 14 was living in Ohio when a tornado flipped over the trailer she was living in with her daughter. Apparent ly the trailer landed on another trailer killing two people inside. She and her daughter where not hurt, because they were hiding in the bathtub under a mattress. This was something she had learned, through listening to public safety announcem ents, on television. In Florida, Participant 11 had her home destroyed by a tornado and when probed as to how that experience affected her she replied, Now I am absolutely terrified when they start putting warnings out. I get into the cl oset. I am terrified to get out. I am scared to death. And you know when y ou cannot breathe right and get scared like that, you are in big trouble. Participant 11 went on to add that even though she had never directly experienced a hurricane t hat during an evacuation, it was better to go to the SpNS than to stay at home, because the shelter, your confidence, it might be false confidence, but it makes you feel better. Participant 20 who grew up on a farm in Wisconsin had experi enced several tornados, which damaged smaller buildings on their property. She r eported that tornados in that area were just a fact of life and people had shelters in which to hide during the storm. Two of the participants, had actually experienced Hurricane Hugo while living in Puerto Rico. Participant 18 remembered homes being destroyed, people fighting and even killing for ice. Years later when Puerto Rico was again threatened by a hurricane, Participant 18 said that rather than put her kids through

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193 the experience she took a plane to New Jersey, where she stayed with her father. Participant 19 confirmed that Hurricane Hugo caused terrible damage, to Puerto Rico. I was scared out of my pants. Now talk about disasters, I seen it and it wasnt pretty. Ive seen co ws fly. Ive seen a car fly. Outhouse that was gone. You see the chickens flying. You see the scenes from the Wizard of Oz. Oh my god, it was just crazy and we were just kids, ok. I remember hiding under my grandfathers bed. Participant 15 has a very early memory of a hurricane, from when she was six years old. He father, a fo reman for the railroad, was building tracks down in the Everglades. The hurricane of 1928, dem olished the tracks killing many workers and members of their family. Asked if she was afraid of storms after that, she replied, Oh, you had better believe it. And I am still afraid of storms. Anybody would, that went through that. Especially now, bu t when I was growing up we didnt seen so afraid. We just took it as it came. She went on to explain that in those days, there was no alert system and she was amazed at how they can predict where a storm is going, with the new technology. When asking about the presence of rela tives or a support system it was found, while having relatives that live abo ut an hours drive away, Participant 13 had little contact with them. While havi ng no professional support system, he does live in a low-income housing complex for adults, which provide social workers, who monitor the health and well being of resident s. In 2004, during the first evacuation Participant 13 did evacuate to an ARC shel ter, but did not evacuate for the next two evacuations. Also, living in a chur ch sponsored low-income housing complex

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194 for adults, Participant 18s parents who are el derly and disabled live in the same complex. This complex provides a social worker, but because of her age she does not qualify for professional services. A third participant, also had relatives living nearby that do not provide support, nor was there a professi onal support system. Participant 17, like participants 13 and 18, are too old for CMS and under the age of 62, which would qualify them for the counties aging services. While Participant 15 has children and grandc hildren in the area, they did not visit nor provide any support. As the parti cipant is elderly and received assistance from the countys Aging Services, she has a strong profe ssional support system consisting of a housekeeper, senior co mpanion, and a nurse. According to Participant 15, The point is I am not left home alone much and I would be in a nursing home without all the help . Living in a garage apartment at her daughters house, Participant 11 also receives assistance from Aging Services and responded that she had a good support system. Havi ng a strong local support system, Participant 12 lives with her two teenage children and has other relatives living nearby. Participant 12 is on dialysis and has a HHA, which comes twice a week to help her with treatments. A caregiver represented four of the t en participants in the second wave of SpNP clients, as they were either too young or too sick, to speak for themselves. The grandmother of Partici pant 14 was the caregiver for the six year old. The grandmother has a brother and the mother of the baby lived nearby but did not provide much support. As the child was registered with Fl oridas Department Childrens Medical Service (C MS), there was a strong pr ofessional support system.

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195 Participant 19s mother was the primary caregiver and even though the childs paternal grandparents lived nearby, they provide little support other than transportation on rare occasions. However Participant 19 was also registered with CMS, so there was a strong professiona l support system consisting of speech, occupational and physical therapi sts. A third child regist ered with CMS, Participant 16, a two year old, was also cared for by hi s mother. In this case the childs father was also present. Having just moved to Florida from New York, Participant 16s parents had only one relative living nearby, the fathers brother who lived in Pinellas County. Having no other relatives living locally, Participant 20 was cared for by his wife, a retired nurse. Since Participant 20 is also under the care of Hospice, there was a strong professional support system. When participants were asked why they needed to be in the SpNP, there were a variety of reasons given. Partic ipant 12, a dialysis patient, needs a sterile room to perform her treatments. Six of the 10 par ticipants (11, 14, 15, 16, 18, 19, and 20), were in the SpNP because they need access to electricity for oxygen. Many of the participants also have other conditions that would place then in the program. Participant 14 has a heart murmur. Needing a hospital bed, Participant 15 said she had, everything wrong with me in the book. Participant 19 suffers from seizures. Participant 20 wa s bed-bound and needed help with personal needs. Besides having breathing problem s, Participant 18 reported mobility problems and that, I am sick of my nerves and I have anxiety too. Anxiety attacks.

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196 If she had not been obese, Participant 18 could have been assigned to a SpNS, rather than a hospital. This is also true for Participant 17, who has a number of medical and mobility pr oblems related to his obesity. Very ill with AIDS since the early 1990s, Participant 13 appeared to be in good health. When asked why he needed to be in the SpNP, he replied that he really did not need to be in the program. He kept the SpNP as a backup plan, in case his relatives in Lakeland, we re not able to come and get him. As with the first wave of interviews, few participants had any knowledge about the SpNP or what to expect in a SpNS, unless they had already evacuated at least once, as had Participants 11 and 13. Many of the responses were similar to Participant 12s, Really I dont know much. I dont know what to expect. How do I go in to register my name or anything? When Participant 18 was asked if anyone had ever talked her about the program? She replied No. I really have no idea. I guess I would be very nervous, if they to ld me I had to evacuate. I would be nervous, because I do not know what is waiting for me. Two of the participants comm ented, that the little information that they had on the program, came from watching TV. Participants involved with CMS, were sent a list of items to bring to the shelter, as were participants assigned to a SpNS. Except for Participant 18, who reported that she had a ttended a presentation in her ALFs lobby by the EOC, none of the other participants received any other information on the SpNP. Few had any idea w hat to expect, when they evacuated. Only two Participants 18 and 20 had seen the Hurricane Guide and only Participant 20 had really taken the time to read the guide.

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197 When asked about their experiences regi stering with the SpNP, Participants 11 and 12 said that it had been too long ago and they had no memory of the process. Participant 12 made a comment, th at this was the first time anyone had come to talk about the program. Participant s 13, 14, 19 had a social worker take care of their registration process. The remainder of the participants (15, 16, 17, 18, and 10), seemed to agree that the first time they regi stered it went quickly and easily. All five of these participants, t hen went on to complain that this year everyone had to register and months late r, still had not been co ntacted by the DOH concerning the program. A ll five participants expressed concern, about the lack of a response. This was summed up by a response from Participant 18 who said, They normally send you a letter, but I haven t received it. I am not even sure that they still have me in the program. When asked if the participants had ev er been evacuated to a SpNS, five (12, 16, 18, 19, and 20), of the 10 parti cipants had never evacuated. When the caregiver of Participant 6 was asked: When it came time to evacuate if she knew the directions to get to Shriners? She replied no, but that she would get on the computer and get directions. In 2004, twice his caregiver evacuat ed Participant 14. For the first evacuation Participant 14 was evacuated to Daytona, directly into the path of the hurricane. For the second evacuation, Part icipant 14 was taken to the caregivers church in St. Petersburg. This was a problem, because when the child began to experience breathing problem other evacuees in the church, tried to help but only made matters worst. As a re sult, of the experiences of the first two evacuations,

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198 the caregiver chose not to leave for the third evacuation and any future evacuation would be made to Shriners. Having evacuated to the SpNS at the Sun Dome, Participant 11 knows that it is not very comfortable. But she added, How they could have done a better job with what they had to do with and the type of patients we were, I do not know how it would be possible. Looking at all those people and thinking how can we have done this good. I mean you got 200 people as sick as I am and a lot sicker on a little cot like this. Few people were working there and what a good job they did. Her only complaints were: that it seemed t hat at every meal they served turkey and going to the bathroom was the least pleasant experience. Evacuating once to the SpNS at Erwin, Participant 15 thought it was handled very well and felt that they took good care of her. Participant 15 complained that, They were suppose to evacuate me the other two ti mes, but they didnt come and get me. I saw on TV were they were taking the ones who lived in mobile homes, but they did not come and get me. My life depends on me having air, as I cant breathe without it. And I cant breathe, when the lights go out and they go out quite often here. Due to a worsening of her condition, Participant 15 has been reassigned to a hospital and she does not know what to expect, if she has to evacuate there. Evacuated to a hospital for all three ev acuations in 2004, Participant 17 had radically different experiences. During the first two evacuations, everything was fine and he received good care. There we re complications during the third evacuation, when he was transferred from the hospital that he was assigned to another hospital. He complained, They just ignored us when we buzzed for

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199 anything. So when I was finished doing my business I got my shitty butt up and I climbed into the bed. So I picked up my sh itty butt and I am spreading it all over your sheets and your bed, because t hat is what I am suppose to do. He later found out that the reason for the hospitals failure to provide adequate care was the staff was overwhelmed, because when elec tricity was lost in the community, people not registered with the SpNP showed up at the hospital requesting oxygen. It seemed that many people did not realize that without electricity their machines quit working and needed access to oxygen, they evacuated to the hospital. During an evacuation request, Participant 13 typically goes to Lakeland to stay with relatives. In 2004, he waited t oo long before calling for a ride and it was too late. So he got on a bus at his comp lex expecting to be taken to Middleton, a school used as an ARC shelter, which he believed to be a SpNS. The bus went to Middleton then to USF, where it drov e around and they finally ended up at Middleton. He though the event was poorly planned and caused needless discomfort to the people on the bus the majority being elderly. When asked if anything would deter the participant from evacuating if requested, only the caregiver for Participant 20 said that they would not evacuate. When asked why they would not evacuate, the caregiver responded that the house had hurricane shutters, a generator with th ree days of gas, a large supply of oxygen, and they had supplies for a month. When asked why she did not go to Erin with Hospice, the caregiver responded, Well that is what t he nurse keeps telling me, but that just would not work for us. I dont think that my husband would agree to it, as simple as that.

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200 Participants 11, 12, 14, 15, 16, 18 17, and 19 stated that they would evacuate when asked to do so, without questioni ng the decision or waiting to see if the storm would actually hit. As Participant18 explained, Cause when you stay you are jeopardizing your life and you ar e jeopardizing the lif e of somebody who comes to try to help you, when it is really bad. Five of the Participants 12, 13, 18, and 19 admitted that they would rather not evacuate, unless it looked like the stor m would hit for sure and there would be flooding, they might not evacuate. Both Participants 12 and 13 expressed the fear someone would break into their homes and steal their stuff. Participant 12 added, that after witnessing what happened in New Orleans after Katrina, she had a change of heart and would evacuate. When asked if she would evacuate as soon as she received warning she replied, Oh yes. It be time to go. If I got to go, I got to go. What ever they gonna take they can have I can replace stuff. Me and my family no, I got to go. Participant 13 indicated that he would evacuate his 15th floor ALF apartment, only if sure that it would flood, because he believed that the building could withstand hurricane winds. Participant 18, who lives on the 12th floor of an ALF, reiterated this feeling and believed that the building she lived in could withstand winds at 150 miles per hour. Bu t both realize if the situation were severe, the management of the ALF would ta ke the proper steps to see to their evacuation to safe shelter. Living in an old concrete house surrounded by big trees, Participant 19s caregiver belie ved that her home was a safe haven, because she went through the three hurri canes in 2004. When reminded that the three hurricanes had in fact missed Hills borough County, the caregivers response

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201 was, I know, but I mean Ive been through t he rain. Ive been through the wind. I have been through the scary part. Ive I mean thank god, knock on wood, I mean the lights havent been yes it flickered sometimes the lights go off for like 20 minutes. You know, but then its not been like really, really bad. When asked if she would evacuate, if she thought a hurrica ne would make a direct hit, she replied that she would if the county sent a safe van for her family to ride in. When participants were asked if they had a box of supplies to take, should they need to evacuate, eight of the Participants 11, 13, 15, 14, 16, 17, 18 and 19 said yes. In all seven cases, the participants admitted that the supplies were not all in one place, but would only take a few minutes to collect together. When probed, the caregivers (mother s) of both Partic ipants 16 and 19 stated that while they had supplies for their children, they did not have supplies for themselves. When Participant 19 was asked if s he had prepared to evacuate herself, she replied, No. I dont have. I have everything like, with myself no. I have everything ready for her. I dont have anything for me. The caregiver for Participant 16 response was similar I might forget my stuff. His stuff is whats important. Of the two participants who admitted not having supplies in a box ready to go, Participant 20 has a months worth of supplies in the home, but has no intention of evacuating. Participant 12 does not have supplies for evacuation, but she did say that she did have a bag ready to go with cloths and supplies, when called by the hospital to come in for a kidney transplant. Asked what were the personal responsibilities of the participant, when evacuating to the SpNS, Participants 12, 14, and 16 (who have access to

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202 transportation) replied that it was their responsibility to get to the shelter. Participant 12 and 14 added they were also re sponsible for their childrens safety. Six of the Participants (11, 13, 15, 17, 18, and 19), believed that their personal responsibility, was to make sure that they got their supplies together and were ready to leave when transportation a rrived. Concerning the issue of being expected to bring supplies, such as th ree to seven days worth of food to the shelter, Participant 13 made an interesting comment, When you are poor and you get your monthly check in, your money is gone for bills and what not that first week. Basically you are living on what you pay out, usually at the beginning of the month. I mean you have a little left over for groceries, you know. The caregiver for Participant 20 did not have an answer to this question, as she has no intentions of evacuating. Participant 13 expressed that natural di sasters presented a national security problem, thus it was the responsibility of the government, to mitigate and be prepared to response for the safety of people. Half of the Participants (11, 12, 14, 16, and 19), felt that the pr imary responsibility of the county, was to ensure the safety of people in shelters. People expected there would be some form of security, to keep everyone under control. Two participants (14 and 16), also mentioned, they expected the county to provide shelters that would withstand hurricane wind and remain dry. Participants 11, 13, 12, 15, 18, and 19 fe lt that when evacuating to a shelter, it was the county's responsibil ity to provide transportation, if required. Participant 12 has a car and drives, but felt the county should evacuate anyone who needs

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203 transportation. She said, School buses would be nice You know come and get us up out of there. Participant 18 felt that when transporting people to an evacuation shelter, the county should make arrangements to provide physical assistance to evacuees. This physical help would include everything, from helping to carry supplies, to assi sting people from the apartm ent into the vehicle. According to Participant 13 the governm ent has no excuse, for not evacuating any poor or disabled person. He added that he thought, what happened in New Orleans was just piss-poor planning. How c an you set there and you were informed, plenty of time to set this in acti on. For here, they got to be on the ball; they got to get people out ahead of time. Participants 11, 13, 15, 16, and 18 believed that the county should be responsible, for feeding everybody in the s helters. While Participant 15 expects for the hospital to feed her, she admits, it is hard for a hospital to feed me, as I am allergic to every thing. I cant eat ju st anything cause I am allergic to it. I can only eat one type of baby food. The county should also be responsib le for alerting people, when to evacuate according to Participants 12 and 16. Participant 12 thought that the county should, come by, you know call and get on the mike and drive around telling people to evacuation. You know going from house to house to let us know. Having been on several mission trips overseas, Participant 14s caregiver said her motto was to abandoned all expectations Participant 14 quickly added there should be generators for el ectricity, security and a structurally sound building. Caregivers for both Participants 18 and 20 only expected beds, for the client and

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204 not for themselves. Acco rding to Participant 20s caregiver, for me I dont expect anything. I dont expect them to be supplying anything for the caregiver. Participant 17 expressed that as far as she knew, the county had made preparations to meet her needs in an evacuati on. Being more real istic, Participant 11 felt that the county coul d not accomplish the impossible, but that they know what they can do and do the best they can. Participant 13 though that is was up to each individual to help themselves as much as they can, to lessen the burden on the city, so that they can serve the people who cannot do for themselves. For the most part, when asked what they thought about the SpNP in general, most participants thought that it was a wonderful program. When ask how they would change the SpNP to make it better, Participants 15, 16, 18, and 19 responded they did not know enough about t he program, to answer the question. When the caregiver of Participant 18 was asked if it bothered her that she did not know much about the pr ogram, she responded, Well, I should know more but I dont know where to get the information. Participant 12 said the SpNP di d not need to be changed, though she admitted that she did not know much about the program. Better communications was an issue for Participants 13 and 17. Pa rticipant 13 felt that communication problems were the reason that the busload of evacuees he was with, drove all over town before stopping at a shelter. Participant 17 had in fact been relocated by one hospital to one of its sister hospitals, without informing emergency management, so that they could keep track of his whereabouts.

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205 Two of the participants (14 and 17), thought that people in the community, needed more education on the SpNP. Partic ipant 14, thought that it was very important to inform people, as to what the program does and how to apply. She felt that many people avoid government programs, because programs run by the government have a history of being intrusiv e, getting into your private business and brings more trouble than solutions. A lot of people I kn ow have been burnt, by what we call the government system. And they just dont want to get into another government system. You want someone to help you. You dont want someone to dictate to you. When asked how that percept ion could be changed? Participant 14 responded, More education. This is why we need this information. This is why we do this. If we help you, you dont owe us for the rest of your life, sort of thing. We are not going to take over y our family, if you participate. Also thinking that there needed to be more education, Participant 17 thought that doctors should take a greater role in informing their pati ents about the SpNP, as it was just good preventive medicine. I think that getting the word out is the most particular thing. And I think that any agency that you can us e to get the word out and the one that came to mind when you were talking about it before. Not only the doctors offices but nurses, home health care agencies, and meals-on-wheels. When asked if he thought that peopl e nowadays were more dependent on the government than they use to be, Participant 17 responded Im not sure if it is the government or if it is just a hallmark of our society. Its like we spoon feed a lot of situations. Were so use to getting things, when we want it, on demand. And it has to be faster, faster, and faster. We havent developed the character that our

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206 parents or our grandparent s had. You know that there is hard work and that there is patience involved and you do what you have to do. You dont wait around for someone to do it for you. Participants 17 was then asked, if he thought that it was a resistance to being helped in general or just help from the government? The response was, I can understand the mindset of not wanting to be a statistic. Not wanting to just be a number. But if the gov ernment has the help that is necessary to survive and it is offering, then I think t hat we are foolish not to take advantage of it. You said earlier that a lot of people d ont know about the programs, but they are not asking and for some reason they dont go out and look. Thats right. In my situation I have had to be proactive and I resi sted that. It took me a long time to realize, that I needed to take charge of my little world. He went on to explain that up until about four years ago, he was able to drive himself to work, but he gradually lost the ability. For a year he did not know what to do and was in a state of depression. He thought that some people can dig in and handle the changes but he was not one of those. Participant 17 said he learned the hard way that he needed to continue asking for benefits, even if the answer is no. He added that we think the government will take care of us and we have a false sense of security. Before 9/11 we thought that nothing like t hat could ever happen. Before Katrina, people were saying, yes we live in low-lying areas and we have had floods before, but we have always made it through the disaster Participant 20 thought that many people have, the old feeling that it cant happen to me. Its not going to happen here, its not going happen to me.

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207 Participant 11 thought that the SpNS, should have higher beds and more bathrooms. She also thought the shelter needed more staff. Those girls really did work their butts off. How t heir backs werent gone, I dont know. Im sure a few of them were sore. She also suggested that something be done during the transportation process, to allow people to go to the bathroom. She referred to one evacuation, where a man had been on the bus for three hours and he had to pee. They would not allow him to leave the bus, until all passengers had been picked up and they arrived at the SpNS. When it comes to the development of the SpNP, both Participants 16 and 20 admitted they did not follow politics. Pa rticipant 20 did go on to say, she figured there was a grassroots effort among the county residents for such a program and she had no doubt Hospice was involved in some way. Half of the participants (12, 13, 15, 17, and 18), believed that in Hillsborough County there was real concern for the wellbeing of the residents. Participant 13 expressed it best, I think that this county cares for its people. I have noticed that since I have lived here, this is like the third time I have lived in this city. Y ou just dont expect that out of a bigger city normally. I do not know were it started or who started it, but I guess that they realized that there were a lot of people in need, in this city. After saying that she thought Hillsborough County was concerned for the populatio n, Participant 18 was asked if she had lived in any other county in Florida. To which she responded, No, never. I just compare it to Puerto Rico, where they have nothing. They dont even tell you to evacuate. On the other hand, Partici pant 14 did not think that the

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208 program was developed out of concern for people, but rat her the program developed out of the fear of litigation. Leadership was the explanation for the presence of the SpNP in Hillsborough County, as expre ssed by Participants 11, 13, 14, and 17. Leaders in this community were thought to be forward looking by Participant 17 and willing to address a serious problem by Participant 11. Participant 13 expressed his feeling that the leadership to develop the SpNP came from a gra ssroots movement, rather than from government personnel. Participants 12 and 19 explained that the large number of residents in Hillsborough County combined with the pres ence of a large medical community, account for the presence of a large popul ation with special needs. Two other Participants 14 and 17 believed that Hillsborough Countys geographic location, on the Gulf of Mexicos coas tline, played a major part in the development of the SpNP. Participant 14 believed that progr am developers must have learned from Hurricane Elena, that if t here had been a direct hit by the hurricane, the community would have had a serious problem dealing wit h people in the with special needs. She summarized, they realized they had to develop a program to ensure that the needs of people in the community, were met during and after the storm. Raised in Florida, Participant 17 said, I think that there are so me people, I dont know how many people in city or county government who are natives like I am. If youve been through a couple of storms, whether or not you evacuated, you know what you are in for. Participant 17 went on to say, it is the personal responsibility of people to develop plans, to deal with hurricanes He believed that as a culture, we

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209 have become dependent on the government, to take re sponsibility for our wellbeing. The government needed to be aware of this issue and make appropriate plans, to care fo r people after a disaster. None of the participants thought that the news coverage on hurricanes was too much. Stating that the covera ge was good, Participant 17 added that he thought there was a certain amount of overkill. When you hear it and hear it and hear it you kind of tone it out after a while. Believing that people usually only retain about 10 percent of what they hear, Participant 13 thought that the repetition helped people absorb a ll the information. Participat e 14 also added, that she did not approve of the media in the first place and only believed about 50 percent of what they reported. When you have been overseas and then you come back and then you hear what they are saying here, about where you have been. Its not the same. Completely, completely different. Several of the participants (12, 13, and 14) said that the media coverage of Hurricane Katrina, made then realize, fo r the first time the amount of damage a hurricane could cause. Participant 13 said he, did not think that the reality really hits you in the head until you see something like Katrina. Participant 12 admitted that until she saw the effects Hurricane Katrina, she had never worried about hurricanes, but Last year woke, really woke me up. It shook me. Only Participant 12 mentioned the Hurricane Guide during the interview. She had expected one to arrive in the mail, but si nce it had not she would go and get one at the station. She was given one after the interview, as were all participants.

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210 Participants 11, 12, 13, and 14 expre ssed that the media coverage of hurricanes was educational. Participant 14 said she thought the media missed a good opportunity to educate people, as to consequences of certain behaviors and what people could do in the future, to pr otect themselves during a hurricane. When asked what she meant, she replied, Because we are about the only people on our street who evacuates. Nobody else evacuates and when I am leaving they are out picking up and getting their houses ready and stuff. And laugh and say what are you evacuating for? Were goi ng to have a hurricane party. It would have been a very wonderful teaching tool for Florida, but they didnt do anything like that. I have never seen that on a show, where they said that this is what you do, because this is what happened. You know thats the best lesson ever, to show what consequences are of what you do or dont do. Living in a trailer park that tends to flood during heavy rains, Part icipant 17 commented that he has many neighbors who refuse to evacuate when ask ed, because they dont have any place to go. They dont have the resources to pay for a hotel. And they have pets. They dont have transportation sometime s. And they are not hooked up to a support system that can provide them with that. According to Participant 13, the new radar being used by the weather stations, are really good at showing where a storm is going. He also thinks that the spaghetti models are confusing as hell and that the cone model is easier to follow. He also referred to the com puter-generated footage, showing 28 foot of water coming into downtown, thinking that it was really scary. Participant 13 also expressed that he thought one of the news stations played scary music, when

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211 reporting on the storms, adding to the appr ehension of people According to Participant 13 some of the material present ed by the media in the early stages of flooding in New Orleans was wrong, but was believed by people even when the media later admitted that the information was wrong. For example, Participant 12 was worried about evacuating to the SpNS located at the Sun Dome, Cause what I seen in New Orleans they was raping kids raping little girls, fighting and my kids we not a fighting family. None of the participants had any extr a medications, in case of an emergency. Several of the participants ex pressed concerns, but said that their insurance company would not cover the extra medication and they could not afford to pay on their own. Participant 17 said, he had to make a 30-dollar co-payment on his medications and he could not afford it. After all the interview questions were covered, participants were asked if they had any questions about the SpNP or SpNSs. In this wave of ten interviews, only Participants 14, 16 and 20 had follow-up questions. Participant 14 wanted to know, if there was cooperation between the different agencies in the county, when it came to the SpNP. She believed, t he only way that the county could develop a good program was with interagency cooperation, because one agency cannot do everything. You have to partner together, because one agency cant do it. They dont have enough money, they dont hav e enough people, and they dont have enough knowledge. Participant 16 was concerned t hat Shriners sent her a letter, saying only one adult could go to the hospital, with a child. She wanted to know why she could not take her daughter and husband with to Shriners and would they

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212 have beds for her sick child. The caregive r for Participant 20, wanted to know why the DOH had not sent information on her husbands enrollment status. Half of the participants ( 12, 13, 15, 17 and 19), fals ely believed that three hurricanes hit Hillsborough County in 2004. When Participant 13 was asked if he know that he was in a flood zone, he replied, It wouldnt hurt me; I am on the 13 floor. When asked if she was afraid that a hurricane would hit Tampa, Participant 18 replied, the hurricanes were worse in Pu erto Rico and she felt safe here. When asked why she felt safe here, Participant 18 replied, because Tampa had not been hit in so long and that the building s he lived would protect her. Participant 14 believed that she lived a block away from the flood zone, while in fact she lived in flood zone 2, one block away from flood zone 1. During the second wave of 10 interviews with clients of the SpNP, several participants brought up issues that were not a ddressed, in earlier client interviews. The mother of Participant 16 admitted, they bought a house in Hillsborough County because the school system and medical servic es were better here, than in other nearby counties. They have better schools here and better medical services. She added, They have nurses in the school that can take care of his trach if something goes wrong. According to Participant 14 there is a big difference between the Medicaid programs, depending on if you live in an urban county, like Hillsborough or a rural county like Pasco or Polk. She admitted that her daughter had moved to Pasco County, but moved back to Hillsborough, because she the medical care provided by Hillsborough County was so much better. In Hillsborough County, she believed that access to appropriate health services, was dependent on whether or

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213 not you had a good case manager. If you have a good case manager, youll get all the information and you will receive all services that you need. If you have what I want to call someone who could care less, someone who is just drawing a paycheck, then you will get nothing. Youll get no services, unless you ask. No services, unless you push. No services, unless you do it yourself. Because I been there. If your case manager doesnt do their job to help you, then it is your place to say, I want a new case manager. Participant 18 wanted to know why her mother was listed for a different hospital than she was, even though they lived in the same ALF. It was explained to her, the nearby hospital her mother was assigned to might not have been able to shelter her, because of her obesity. Wave 3 SpNP Client Interviews The 10 SpNP clients, we re questioned about their experiences with natural disasters and only Participant 27 reported having none. Participants 22 and 28 reported being affected by a tornado, Part icipants 25 and 29 by fires, Participants 21, and 22 by earthquakes, Participants 22, 25, and 29 by floods, and Participant 21, 23, 26, 28, and 30 by hurricanes. Four participants (21, 22, 25, and 29), had experienced several different natural disasters, over their lifet ime. For example, one participant who had moved often had exper ienced floods in West Virginia, tornados in Oklahoma, and earthquakes in California. During Hurricane Elena, Participant 28 experienced a tornado that caused some damage to her home, but when aske d for additional information, admitted

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214 that it was not serious and did not affe ct her much. Part icipant 22, who had experienced tornados in Oklahoma, also did not seem fearful. Did that affect me? No. Cause, I felt like notification was ear ly and we were safe, as the shelter was where we were supposed to go. And then I lived in CA and had earthquakes and of all the natural disaster s, they are the scariest. Tornados you can see them coming and run away. A fl ood they notify you and you can get out of the way. But with an earthquake, you never know and it is very scary. Especially, when they wake you up at night. I think that is the hardest thing to get prepared for. The other two participants, who had experi enced earthquakes, did not appear to be affected much by the experience. The two participants, who had experi enced forest fires, seemed little affected by the experience. Participant 25, besides fires had experienced floods and earthquakes, while living in California he felt that the experiences made him better prepared to deal with future natural di sasters. Participant 29 admitted, his experience with forest fires, was more as a disaster tourist. Stationed in California, during a local forest fire he and some friends drove up to sightsee. They left, when firemen informed them, they could be conscripted to work the fire. Participants 22, 25, and 29 had experi enced floods. Only Participant 22 reported, they had to evacuate their home, because of flooding. Participant 29 said, You know the river would flood the north parts of the county, the town. A lot of places in that area get floods. I lived by the river, but I was high up and I never had to deal with the water myself. It flooded a lot, but I was able to avoid it. But I knew people that lost everything. Participant 29 lived, in a low-lying area in

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215 Hillsborough County, where t he streets flood after only a few inches of rain and was prepared to evacuate quickly. Four of the participants had experienced hurricanes in the past. As in the second wave of interviews with SpNP participants, two experienced hurricanes while living in Puerto Rico. Participant 23 experienced two hurricanes in Puerto Hurricanes Hugo and Georges. As a nurse in a San Juan hospital, she was required to work and saw little of the des truction, as the area where she lived was spared. On the other hand Participant 21 had a small farm destroyed by three hurricanes: Betsy, Hugo, and Georges. He complained that FEMA provided no assistance during the rebui lding process and that there had been big problems containing water. Participant 26 reme mbers Hurricane Hazel hitting New Jersey, when he was young and though that the experience was fun. I thought that it was fun, because everyone was running around, you got special treats. Everybody was like, under one blanket. Everybody was sleeping in one room and that lasted for several days. Participant 30 claimed to have experienced two hurricanes in her lifetime, but after probi ng it was discovered that these hurricanes had come close, but actually missed. Participant 28 believed that s he had experienced three hurricanes in 2004, when in fact Hillsbor ough County had been missed. She went on to explain her family had been in Hillsborough County for seven generations and had survived several hurricanes, even though they never evacuated their homes. Her current home, built in 1925, had survived many hurricanes and she had no doubt that it would su rvive any future hurricane.

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216 When the 10 participants were asked if they had relatives that lived in the area or had professional support at home, Pa rticipants 22, 29 and 30 said they did not have either. Receiving no professional services at home, both Participants 21 and 23 have children who live in Hillsboroug h County; but admitted that did not provide much assistance. It should be noted that Participant 21s wife and daughter, who live elsewhere in Hillsborough County, are also in the SpNP. Two female participants (24 and 26) had relative s in the area, but the only caregiver services received, was provided by their fiancs. The parents of Participant 25 provide fo r her care and the father contended, she really had no need for any professi onal support. When asked why Participant 25 was registered in the SpNP, her father replied, they required access to a phone line in case his daughters pacemaker needed to be monitored by doctors. My daughter has a heart pacemaker, but for the most part she is independent. There is monthly monitoring over the phone. For the most part she is a normal kid The father of Participant 25, not only knew nothing about the SpNP, he did not even know his daughter was r egistered in the program My wife takes care of that. I dont know that she had us involved with something that had an evacuation plan for us. The mother of Participant 25 was originally scheduled to be interviewed but when the researcher arrived at her of fice the father was there instead. Parents also provide care for Particip ant 27, but his medical condition was complex, so he receives professional t herapy. Bed-bound, both Participants 27 and 28 were represented by their caretake rs, mother and daughter, respectively. According to the mother, Participant 27 was born with brain damage, cerebral

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217 palsy, and seizers. Besides needing a sterile environment, there is a need for constant access to electricity he is using oxygen ma chine, suction machine, feeding machine, and has 4 machi nes that use electricity. Cared for by her daughter and granddaughter, Partici pant 28 also receives services from Hospice. The daughter of Participant 28 explained that her mother had severe osteoporosis, could barely move on her own. There were also three participants (21, 24, and 30), wheelchair bound and at the time needed access to transportation Bound to a wheelchair Participant 30 was not registered with the Sp NP even though at the time of this interview required transportation. Though meeting the requirements for admittance to the SpNP, Participant 30 had made other arrangements to shelter with friends, in the event of an evacuation. Requiring hospital beds to sleep on, due to their morbid obesity, Participants 23, 26 and 29 were also dependent on ox ygen. Participant 26 had numerous medical conditions related to obesity, su ch as: complications from a stroke, diabetes (open wounds on legs), high blood pressure, heart disease, apnea, apnea, reflux disease, neuropathy and vision problems. When asked what they knew about the SpNP, all participants, except for Participants 27 and 30 admitted, they k new very little about the program. Participant 27 has twice evacuated to a Sp NS. Participant 30 is an advocate for people with disabilities and a me mber of the SpNP Planning Committee. Six of the participants (22, 25, 26, 27, 28, and 29), or iginally received their information from healthcare providers: Dialysis Center, HHAs, CMS, or Hospice. Living in different

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218 ALFs, both Participants 21 and 23 learned about the program through educational sessions, conducted by EOC representatives. Participant 24 found out about the program, from a neighbor who was interviewed during Wave 1, of this st udy. The individual saw the researcher interview the neighbor and finding out what the topic was, called the researcher (a business card is left after each intervie w). The next day an application for the SpNP, along with a stamped envelope addre ssed to the Hillsborough County DOH, was left at the house of the person who ca lled. A note was left asking the person to fill out the application, mail it in, and ca ll the researcher when the DOH replied. The process took almost exactly 2 months, but she was accepted into the SpNP. When asked, Participant 24 knew which ARC shelter she was assigned to and that the county would transport her in case her fianc was working. Participant 24 was not sent a list of items to bring when evacuating or what accommodations and services to expect at the shelter. Participant 24 w ould have been eligible for inclusion into the SpNP four years ago, but she did not know that the program existed. She asked, why her doc tor had never mentioned the program. For the most part, participants found t he registration process for the SpNP to be easy. Participant 29 expressed real frustration with the r egistration process, complaining that t he DOH had sent him a letter in 2005 with no date on it. Confused, he had to make several calls to the DOH, before speaking to someone who verified he was still enrolled in the progr am. He added that this year he called in April to reapply. They said an acc eptance letter would be mailed, within two or three weeks, but it never arrived. After many phone calls, he finally got the

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219 approval letter in early June, after the start of hurricane season. He plans on calling DOH again next year in April, about his registration. I had such a bad experience with the people I called. All I got was the check is in the mail type thing. You know, Im persistent I think a lot of people would have said, the hell with it and given up. Though not registered in the SpNP, Participant 30 had an interesting experience, while volunteering to answer phone calls during a hurricane evacuation. At the last minute, Participant 30 received a call from a woman with a very impaired adult son, asking how she could get into a SpNS. You know, the hurricane is coming and its like you havent signed up yet? When asked why someone who qualified for the SpNP refused to sign up? Participant 30 replied that maybe they have other alternat ives or maybe they know the, shelters are suppose to be the bare-bone minimum, even the SpNS. So if you have other alternatives, you may want to look at that, because you would probably be more comfortable. Participant 30 thought that many people might not sign up for the SpNP, because they did not know about the program or thought t hat the shelters would be inaccessible for people with disabilities. Participant 30 also added, some people just do not plan ahead, because t hey think it will not happen. When a hurricane does appear they wait unt il the last minute to prepare. Of the ten participants only three left their homes, at l east once, during evacuations for the three 2004 hurricanes. Participant 30 evacuated once to a friends house, describing the experience as uncomfortable. Participant 30 did not

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220 evacuate for the second two evacuations, due to the feeling that the hurricanes would not strike Hillsborough County. In 2004, Participant 22 evacuated twice to a friends house and stayed home for the third evacuation. When asked w hat her evacuation experiences were, she replied, it was uncomfortable but t hat whenever she leaves home she is uncomfortable. She explained that her ki dney disease caused her a great deal of pain. At home I have the facilities, little things that I do to help me focus on something else and get off the pain. But when you are away from your home you cant do that so easily, so you experience more pain. I dont sleep much anyway, but away from home I wont have a chance to sleep. When asked why she did not evacuate for the third hurricane she replied, I got a better feel for what they were gonna be like and if they were coming or not. I had enough time to get to my girlfriends house. But I decided after 2004, t hat if those hurricane s were a 3 or a 5, Im out of the county. Im gone. Also evacuating twice during the 2004 hurricane season, the mother of Participant 27 said the ARC did a good j ob operating the SpNS at the Sun Dome and that the whole process was well organi zed. During the second evacuation there was a problem, when due to overcrowding, she was asked to relocate Participant 27 to Shriners Hospital. Though she had had good experiences getting treatment at Shriners, she refused to transfer, because it was raining and she had just started his feeding, a one-hour process. After feedi ng the child, rather than transfer to Shriners, she chose to take her child home and shelter-in-place. By then it was apparent, the storm was going to miss Hillsborough County.

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221 Seven of the participants (21, 22, 23, 24, 26, 29, and 30) expressed that in the future, when requested to evacuat e their homes, they would comply immediately. Both Participants 29 and 30 realized, that they lived in a Level 1 flood zone and would be among the first to experience flooding. Participant 21 said he would rather not evacuate, his ground floor apartment, because a bathroom would provide safe haven from the hurricane. When informed that he lived in a flood zone, he immediately changed his mind and replied he would evacuate, when requested. Even though she believed that her newer home could withstand a Category 3 hurricane, Participant 22s plan was to evacuate and stay with friends in Lakeland, about an hours drive. When ask ed why she thought she would be safer in Lakeland, Participant 22 replied, she felt that the electricity in Lakeland was less likely to go out than in Hillsborough. If the electric ity goes, she was concerned about her dialysis treatment. I dont want to endure t he possibility of not having water and uh electricity. I mean I know a little bit of what life can be like without food and necessaries. She went on to explain, she understood why many people who owned a house, did not want to evacuate. This is my house, these are my things, and I am going to stay here during a disaster. I think that that is a pervasive feeling, when someone has owned a home for a long time. Even though he did not live in a flood zone and thinks the apartment complex he lived in would survive a hurri cane, Participant 26 would comply with an evacuation request. Expressing that if registered with a program, like the SpNP, he should listen to the advice given by program managers. So if somebody tells

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222 me that something has to be done and I dont listen to them, then I am the stupid person. Mother always said that you c ould take a horse to water, but you cant make him drink. You can give them all the information you want and all the assistance you want and if that person doesn t want to do someth ing, then there is not a darn thing that you can do about it. Living in an area surrounded by wate r and where the roads flood during heavy summer showers, Participant 29 sa id that he had neighbors that never evacuate. When asked what he thought co uld be done to convince his neighbors to evacuate, he replied, What do you do with stupid people? Its a free country. But when it comes to helping people after t he storm, I say that you help those that truly need it first and put these other people at the bottom of the list. Participants 25, 27, and 28 indicated that they would not evacuate when requested, unless they were convinced the hurricane would hit Hillsborough County. The caregivers of Participant 25 plan to shelter at their home, which they believed survived the three 2004 hurricanes, but would evacuate to a safer location if it looked like a major hurricane was going to hit the area. The caregivers of Participant 27 would not evacuate, unless news reports indicated a direct hit. Like the last time, you know, we are seeing t he worst. They go down, down, down I say ok I dont think we need to go. You know when it is really time to do it. Participant 28s caregiver felt that her 80-year-old house had survived many storms and planned to shelter at home. When asked what the caregiver would do if electricity was lost, she replied, that last year dur ing one of the hurricanes they lost electricity for three days. It wa s not that hot and she was able to keep her

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223 mother cool, by applying wet cloths. Adding that she felt that due to her mother brittle bones, the process of transferri ng her to a SpNS was going to cause physical damage. She added that her mot her experienced great pain, every time she was moved. Participants 22 and 28, who were both assigned to the Sun Dome, indicated that they had fears concerning shelteri ng at that location, due to what they witnessed at the Super Dome during Hurri cane Katrina. As Participant 28s caregiver pointed out, she was afraid that t he roof would come off, like the roof of the Super Dome. She was also afraid of infections, people that you got people from all over. You know you got street people. Youve got clean people. Youve got people that arent clean and you got people murdered. Participant 22 complained that in 2004, three hurricanes came within two or three weeks of each other disturbing her life, as she had to prepare her home each time. After each event, she did not have t he energy to get out of bed, for two or three weeks. By not evacuating, she can pace herself, while preparing her home and not be overwhelmed. Believing the crow d at the Sun Dome would be like that at the Super Dome, she was afraid that due to her weaken condition she would either be trampled or taken advantage of, in the struggle for surviv al of the fittest. Having concerns about going to the shel ter alone, she wondered what services she would receive and who would care for her. As a dialysis patient, Participant 22 liv es a life full of pain and discomfort. She feels that people have the right to deci de, if they want to evacuate or not. People weight it out, when they are faced with life or death de cisions. If I am in a

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224 lot of pain and I know that my death will be ve ry painful. Now I am in the middle of a disaster, where do I want to die? Do you want me to leave my home? And when anyone says you need to leave your home, who are they? How are they going to take care of me? Do I take care of myself? You know there are a thousand questions. There are times when I could see someone wanting to stay and die in their home. Maybe they have made a plan to die and thats where they want to die. And I respect that. If I decide if that was my decision, because I came to those crossroads because dialysis is not easy, it is very painful for me. Of the ten participants in this wave of interviews, only the caregiver for Participant 28 declared that they did not have extra supplies in the home, in case of a hurricane. When asked why she had no supplies. She responded that she had been out of work, due to illness and currently was not financially stable Well to be honest with you, I always had extra food. Its just that Ive been out of work for four months and money has been very scarce around here. Ive used all my supplies. The caregiver for Participant 27 adm itted that while having supplies for her child, she did not have supplies fo r the remainder of the family. When they announce by TV something come, then we buy stuff and we are ready for it. Of the nine participants who had supplies, onl y Participant 22 had all of her supplies together in one place. I have things in the back of my car: my first aid kit, my water, my blanket, and my flashlight. A nd I dont put any food in there, until the season comes around and I havent done it yet. So if I am on the road, it is nice. When it come to having an extra supply of medications, only Participants 22 and 26 said that they did. Both Partic ipants 25 and 30 claimed that they took no

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225 medications. The caregiver of Participant 28 said that her mothers medication was controlled by Hospice. Getting three months worth of medications at a time through the VA medical system, Pa rticipant 29 claimed that he rarely has less than a weeks supply, but he has run out before. You are dealing with the government and you have to watch them because some times they get a little back order and they dont get it to you on time. According to Participant 26, Hurricanes are fine, if youve taken your steps to have food in the house and your pills. There are all kinds of steps that you can take, so that when the disaster hits, its not a disaster. During this wave of interviews, only Participants 21 and 23 were asked what their responsibilities were, during an ev acuation to a SpNS. Both replied that they were to be ready, when transportation arri ved to take them to a shelter. Both of Hispanic origin, Participants 21 and 23 add ed that they would volunteer and try to help, those evacuees in worst condition than they were. Participant 23 was a retired nurse and had worked several hurricanes, when living in Puerto Rico. According to Participant 23, the counties only responsibility when evacuating people to a shelter was to in form people, where the shelters were located and to ensure that t he shelters were staffed with the appropriate personnel. The only other expectations t hat participants had of the shel ter, was that there be food, water, and cots. Like many of thos e interviewed Participant 29, expects little the bare bones from the county except for a safe, handicapped accessible shelter The father of Participant 25 indica ted, he thought people should care for themselves and not be dependent on the county Montana had this blizzard and people were snowed in for weeks and theyre never asked for help they just dealt

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226 with it. He added that part of personal res ponsibility, was follo wing the advice of local emergency management, if people refuse to follow orders to evacuate they should be charged if they have to be re scued. Send them a bill. Its your own fault, you got yourself into the situation. But many people want to help others and are full of compassion. Having lived in several other states, Pa rticipant 22 claimed that Florida does more to provide for its residents, than any other state. Part icipant 30 made the statement, Lots of other states dont have any thing that leads to having a SpNP and accessible SpNSs. As an advocate for people with disabilities, Participant 30 expressed the feeling that in the future other states would be mandated to follow Floridas lead, through legislative activities on the national level. Participant 30 also thought that the State of Florida was looking at wh at counties like Hillsborough were doing, in the effort to develop best practices, which would be used statewide. Participant 30 added, that currently at the stat e level, they were trying to come up with a definition of the criteria for admittanc e into a SpNS. Because of competing priorities for funding issues, stakeholders and participants in the SpNP needed to be vigilant and keep pressure on local and stat e governments for funding, because the squeaky wheel gets the oil With a tendency for amnesia and changing priorities, it is the responsibility of stakeholders to keep the issue of special needs, in the forefront of government policy. Part icipant 30 explained that after Hurricane Andrew, special needs bec ame a state issue but years of no hurricanes resulted in the problem getti ng swept under the rug, as money was diverted to address other issues confr onting the state and local communities.

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227 The majority of the participants ( 21, 22, 23, 26, 27, and 29), thought Hillsborough County developed the SpNP, be cause people living here cared about their fellow citizens. According to Participant 21, they had the money and figured out hey how we can help our fellow citizens. The caregiver of Participant 23 thought the SpNP was devel oped, because of the effo rts of professional and grassroots efforts I see on TV where local peopl e are helping the old people to paint their house. People in Tampa have a big heart. They dont care that they have to spend money, to help save a life. Participant 29 expressed, I think that people in the community m ade the leaders get on the st ick and get things going and build decent programs to ta ke care of these people. Having moved to Hillsborough County just before the start of the 2004 hurricane season, Participant 22 express ed surprised at the behavior of people living in south Florida, after being hit by Hurricane Wilma. She remembers seeing news reports, of people complaining that th ey had to stand in line for supplies and accusing the state of a slow response. Finding humor in their behavior, she commented that not only was Hurricane Ka trina a recent event, but they had to know that Florida was vulnerabl e to being struck by hurricanes. You could have planned. Why are you complaining that the state didnt do anything? Its not up to the state to take care of you. You have to take care of y ourself. I must say that of all the states that I have lived in, this State is the most impressive, as far as taking care of their people. I dont believe that there is any other state that is more centered on grassroots. When asked what grassroot s efforts she was referring too, the example given, was the statewide weeklong suspension of taxes on

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228 hurricane supplies You know somebody came up with some good ideas to, you know, help the bottom line person. Y ou dont see that in other places. Participant 22 thought that Hillsborough, due to a large population base, has a larger tax base than many of Floridas ru ral counties, thus allowing it to provide the money to start and operate the SpNP. She agreed with Participant 26, that Hillsborough County might have a more educated population than some of the surrounding, more rural counties. Participants 22 and 26 agreed that the Hillsborough County commissioners were mo re educated, willing to listen to new ideas, and cared more about the community than in their own personal gain. Participant 25 believed that Hillsbor ough developed its SpNP, because it was apparent that the old program to shelter people could not provide care, to the counties most vulnerable population. According to Participant 26, the soci al and health services are better in Hillsborough County than surrounding counties. I hear stories from friends who live in other places and the stuff that t hey have gone through. And its not what I am going through. He believed that the main reason more and better services were being provided by Hillsborough, was due to the existence of a number of large urban centers (cities) With this population dens ity, the county obtained a number of colleges an d professional sports teams, which created an environment that attracts a different kind of person. I think Hillsborough is a hub and it attacks like a magnate, the right people. This was confirmed by Participant 21 who thanked God, that his family moved fr om Puerto Rico to Hillsborough county, were he, his wife, and his son could get Medicaid and get the medical services

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229 they needed. Also recently moving to Hillsborough County from Puerto Rico, Participant 23 made the move, because in P uerto Rico they wanted to cut off her leg, but here she received proper treatm ent and now her leg is doing fine. A member of the SpNP Planning Commi ttee, Participant 30 believed that the program was developed, because the staff at the EOC has been very aggressive in trying to create plans to protect Hills borough County residents. Explaining that local professionals support ed the efforts of the EOC staff and advocates in the community helped improve upon what already existed. Participant 30 informed the researcher, that Hillsborough County is getting recognized on a state level for being proactive and taking a much greater l eadership role than other communities in the state, when it comes to the special nee ds population. When asked if Participant 30 t hought that Hillsborough was a caring community, the response was, I also am in a position where I hear a lot of complaints. So I dont know t hat there is a caring environment. Its been quite a number of years that under Mayor S andy Freedman, there was the Mayors Alliance for Persons with Disabilities. T hen back in, I think it was, 1994 the County Alliance with Citizens with Disabilities was formed. There has been community action thru these different alliances, so there have been advocat es, who have tried to improve the quality of life and the opportuni ty for participation and involvement in the community for persons with disabilities. Adding that many other communities had similar alliances, but here it has had some effect on decision and policy makers in terms of the services bei ng provided to meet the needs of that population. According to Participant 30 the SpNP continues to evolve, as anyone

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230 is welcomed to the SpNP Planning Committee meeting, where there is a willingness to listen to advocates as to how to improve the program. Based on all of that communication that took place, we were able to get in touch with a provider of sign language interpreters that said that Ill work with you to try to help you out. So you know, somebody kept pounding away about the need and it was finally heard, that we have got to find a way to do this. Other than Participant 30, none of the participants felt that they could change the SpNP, to make it better. Many expressed they did not know enough about the program, to suggest changes. Acco rding to Participant 27s mother, her two evacuation experiences to a SpNS were good Very organized, helped me to feel Im in the correct place. So maybe is wonderful. Because there is a lot of people. She added that within about 30 minutes of arriving they had completed registration and were assigned to a locati on, where she could plug in her sons machines. As an advocate for people with di sabilities, Participant 30, felt that the SpNP could provide more services. One of the issues identified, was keeping individuals who are deaf, informed as to what is happening during the event. But the major weakness identified, was the training of workers in the shelters, on how to interact and meet the needs of people with a variety of disabilities, many with multiple medical conditions. Part of t he problem with training shelter workers, was that many are volunteers and cannot be fo rced to devote their time, to long hours of training. When asked about what they thought about the recent news coverage of hurricanes, eight participants (21, 22, 23, 24, 25, 26, 27, and 29), thought that it

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231 was educational. According to Participant 21 I watch it and I hope a lot of people watch it and become aware of what they sh ould do. And dont be ignorant about it. Several of the partici pants (22, 26, 27, and 29), ex pressed that because of what they saw after Hurricane Katrina they realized that it could happen here, compelling them to face t heir limitations. Once accepting and identifying their limitations, they develop emergency plans. For example, Participant 27s mother said that they developed a calling network identifying one family member in Puerto Rico, as the person everyone should call to deliver and receive information. The caregiver for Participant 23, admitted t hat because of what he learned from media coverage of the 2004 and 2005 hurricane seasons for the first time ever he has stored supplies. The caregiver of Part icipant 25 also admitted they only developed a family disaster plan, a fter the 2004 hurricane season. Several of the participants (21, 22, 25, and 26,), expressed they believed the chaos in New Orleans, was the fault of political leaders. Though she believed that the situation should be blamed on lo cal political leaders, Participant 22 expressed that she could not believe that President Bush did not show up immediately after Hurricane Katrina, to show support for the people. Participant 21 believed that the political inaction in New Orleans, was because the people affected were poor and African-American Because I know of the discrimination,; of the humiliations. Especially, because Im Hispanic. They may be black, but they are Americans. They may be poor, but they are still Americans. An AfricanAmerican, the caregiver for Participant 24 did not think that the issue was racial, but rather economic. Believ ing that the government looks down on the poor and

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232 after a disaster will provide assistance to the richer neighborhoods, before reaching out to the communitys poor resi dents. When probed, if he thought that the government had learned its lesson, afte r Hurricane Katrina. He responded, that he did not think so. When asked if he thought the mistakes would be repeated in future responses to hurricanes. He replied that it would depend on where the hurricane hit. Because people in New Orleans were poor, black, and democrat I think that they were forgo tten. I really, really do. But and if it had been California or New York, I think money would be there instantly. Three of the people interviewed for Wa ve 3 were Hispanic and were asked what they thought of the Spanish medias coverage of the hurricanes, compared to the material provided by English channels. All three of the participants (21, 23, and 27), maintained that the Spanish chann els provided very little coverage on hurricane preparedness. Having no idea as to why Spanish TV did not provide hurricane preparedness information, Participant 21 commented that the local Spanish stations in Puerto Rico pr ovided plenty of hurricane preparedness information, through its programming. A ccording to Participant 23, English channels on TV provide more information because, Americans have very more people with special needs than do the Spanish people. Claiming that the Spanish channels only show general information, Participant 27 asserted that to get details as to what is going on, she watches t he English channels. When asked if she thought that this was a problem for the Spanish community, Participant 27 said that it was an enormous problem, for those Hispa nics who did not speak English. She added that many Spanish people live close to evacuation zones, but often do not

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233 clearly understand evacuation orders. T he solution she offered was for all the information on the English channels, to be simultaneously translated into Spanish. Of the 10 participants, only Partici pant 27 had actually evacuated to a shelter before and at the end of the interview she had no questions about the program. Half of the partici pants (21, 23, 25, 26, and 28), admitted that they knew very little about the SpNP, but at the conclu sion of the interview when asked if they had questions concerning the program they did not. Participant 22 had a number of questions, concerning the structural int egrity of the Sun Dome and the type of people, who would be allowed to enter t he SpNS. When Participant 29 was asked if he had any questions concerning the SpNP, he responded by pulling a list of questions out of his pocket. Of the 30 SpNP clients in terviewed for this study Participant 29, was the only one to have a list of pre-prepared questions. Assigned to a hospital, he wanted to know if he c ould bring a portable television. If the hospital would they supply medications, if he ran out? He wanted to know what security would be like and if he could bring important records to the hospital. He also wanted to know if the county would pr ovide transportation to the hospital, if he were sick, when asked to evacuate. Four of the participants (25, 26, 27, and 28), wrongly believed that Hillsborough County, had been struck by three hurricanes in 2004. While true that the county requested evacuati on three times, each time, the hurricane force winds missed the area. The father of Participant 25 expressed, To me it seems less likely that a hurricane would hit Tampa directly, because we are sort of buried

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234 here. We are on the west coast of Florida, sort of in the middle of the state and somewhat inland. I think it is less likely to get hit, than other parts of the State. Misinformed that they were not allo wed to bring pets to the shelters, Participant 22 and 26 were surprised to learn that t he county had made arrangements for the pets to be sheltered at the SpNSs, during the evacuations. Participant 22 also wrongly believed, she would be charged for using the SpNS, when the county provides all SpNP services free. Participants were informed that the EOC wanted everyone in the county, who meet the qualification for the SpNP, to register. Participants were asked what they thought could be done to get more people to register for th e SpNP, if for no other reason that in case of a disaster, the EOC knows where they are located in the community and can send assistance. Th ere were several detailed answers. A retired social worker, Participant 26 believe d that part of Americas society wanted to be left alone and really did not care about the problems of others. He added many did not seem to understand, that some of the pr oblems everyone must deal with during life are better solv ed, when dealt with by the community as a whole. If you network and you listen to the overa ll group and you make a game plan for the majority, then that usually is a good thi ng. But when all you are doing is selfinterest, then because it is such a small wi ndow, you are not really taking care of anybody. When it comes to planning for disasters, Participant 26 felt that many people in the community think that if some thing is not broken, why fix it. They dont realize that if you don't have a game plan, when it becomes broken, what do you

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235 do? Some people use their common sense and some believe that the Lord will protect them. Well I believe in the Lord too; but I also believe in having food in my closet and extra water under the sink. In response to a question as to how to educate people so that they get t he message, he suggested using humor. I always felt that people learned or kept in t heir brains more information if you added humor to the message. I think humor helps people to remember things that they might otherwise forget. Another problem getting people to regi ster in the SpNP, raised by Participant 26 was the absence of having someone to talk to, when filling out the registration form. He personally k new a lot of people, who had given up on government programs, due to the frustration of dealing with the system. They just get to a point that they have so much pressure on them that they dont care. He went on to express, that he felt that many people do not identify with their own problems, having no identity of self. Ex plaining that it had nothing to do with education or preparedness, it has to do with the people and each one of them will do exactly what they please. You c an do all the preparedne ss in the world. You can have the best programs. You c an have the best alert systems, but if the people are not intoned, they will not benefit from the program. And the thing is that you do not know what percentage of the population you reached. Participant 28 thought, that most people ignored information on the SpNP they hear on TV, because they did not think it pertained to their situation. She suggested, that it was the responsibility of the medical profession to have a nurse or a social worker sit down and provide a detailed description of the program to

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236 people, who might qualify for the program. This way, they would be getting the information, from someone that they trusted and respected. When Participant 23 was asked if she thought that the Spanish community was underserved by the SpNP, because of a lack of knowledge of the program. She replied that in her AL F, the EOC spoken in their community room, about the SpNP and it was translated into Spanish. According to her, You talk to the people but they dont give a damn, because they think every day going to be a shiny day. What happen to the people in New Orleans by Katrina they see that, they believe that? But they think something like that, it not happen no more. The caregivers of Participant 28 res ponse, to the question of how to get more people in the community to enroll in the SpNP, was surprising I understand the concern. There is so much involved in taking care of a person that is bed ridden, people that are on oxygen. I know that this is not pertaining to what Im saying is that the city and everybody worries about people not having their needs, during a storm. But the truth of the ma tter is, there are a lot of people that have needs, without a storm. Tampa Electric will come out here and turn me off, without thinking twice and not have any compassion for me. She wanted to know why all the concern after a disaster, when nobody cares about her wellbeing on a daily basis. At the end of her interv iew Participant 22 said, I got tired of being sick. Now I feel better. I got your first two lette rs while I was sick and didnt respond. In fact, I didnt even consider it. But when I felt better, I changed by mind. Ya know, when you are disabled, you just have to take things from one day to the next

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237 This explained why she was one of the few participants, responding to the fourth letter asking for participation in this study She said she was glad she granted the interview. I now feel safer now, that I know more about the program, if things really get out of control. Though, I am still afraid of being trampled. I really have been asking questions and have been getting a lot of information from you. I feel like, I know a lot more about the program. I may be more apt to go to the Dome. I mean, just the thought of going there I am not thrilled about it. I envisioned a shelter for more than just people with special needs. Characteristics of Elite Participants Interviewed Ten elite participants were chosen, due to their ability to help fill in gaps in the data, their knowledge about the SpNP and community resources. This allowed them to confirm or refute theoretical concepts developed by the researcher. All elites were directors of agencies: three were in their 40s, five were in their 50s, one in their 60s, and one in their 80s (s ee Appendix S). Four of the elite participants, were male and six were female. Of the elite partici pants interviewed: four were representatives of state agencie s, two represented a county agency, two represented adult retirement communiti es, and one representative each for the federal government and a NFP. All elites contacted to participate, agreed to be interviewed and a meeting was scheduled on a timely basis.

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238 Outcome of Elite Interviews Registration for the SpNP The elites were informed several of the SpNP clients, had complained in their interview, that the registration process took too long. The hurricane season was here and they were not sure if they were registered in the program. Elite 1 explained, one of the problems was that the DOH, had only recently taken over the SpNP database and registration process fr om the EOC. Initially there was a manpower issue, as no additional funding wa s provided, to hire new personnel. Apparently, the Hillsborough County DOH has recently realigned resources and now has staff dedicated to the staff. Now every year in March, everyone in the SpNP database will be sent a new registration form, accompanied by a letter explaining they need to reregister. The new application must be returned by a s pecific date or that individual will be removed from the database. The purpose of a yearly registration was to update the SpNP clients condition, an advanced triage, which will expedite the SpNS registration process during an evacuation. This yearly registration allows DOH to predetermine, how much oxygen to have at the shelter and to estimate how they should prepare to accommodat e the special needs of the population, evacuating to the SpNSs. So when the person checks in, we are kind of like a hotel. Do you have a reservation? Well that form in the database, is their reservation. Once registered, when an individual arri ves at the shelter, they only have to be asked to identify any changes to their condition since registration. People will not be left out of the shelters. DOH does not have the staff, when trying to bring up

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239 the shelters, to devote time to enter ing all this stuff in the database. During the evacuation period, people cal ling the DOH wanting to r egister for the SpNP, are referred to the Citizens Ac tion Committee located at t he EOC. The volunteers, answering the phones at the Citizens Ac tion Committee, take initial triage information and turn it over to the DOH r epresentative at the EO C. Based on the persons condition, they are informed if t hey qualify for the SpNP and if so, what type of shelter they have been assigned to: a SpNS, hospital, or ARC shelter. If the person requires transportation, their address is handed to the transportation representative at the EO C, who makes arrangements for the appropriate transportation such as a: van, bus or ambulance. According to Elite 3, in the past ther e were problems with the Citizen Action Committee system, because it could not han dle the huge increase in the number of calls received, during an evacuation. Consequently, when many people called to get evacuation information, they were forwarded to a recorded message asking them to call back. People with disabilities a lot of times, dont have their own phone. You make the special effort to ca ll and get a recording it says leave your name and phone number, well it fizzles. Elite 3 added that the system had been upgraded and can now handle a gr eater volume of calls. Assignment to an ARC shelter, Sp NS, or a hospital depends on the persons overall condition, the amount and type of help required. According to Elite 1, You know the criteria for SpNSs is kind of weird. In that, you can meet the criteria to come into a SpNS, even though you are not elec trically dependent. Every body thinks electricity. You can be oxygen dependent, without needing

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240 electricity. The current legislation requires that everyone on oxygen should be admitted to a SpNS, even if they are not electric dependent. Due to limited space, those not electric dependent and able to provide for their own care, are sent to ARC shelters. When asked if there was any idea, how big the special needs population was in Hillsborough County that could be receiving servic es from the SpNP, none of the 10 elites interviewed had any idea. One of the elites responded, We know that there are a lot of people out there, but we are without data for proof. We know some people are not going to register. And you know what, you might disagree with me, but I think that that is ok. As long as it is an informed decision and they have an alternative plan. And the best plan, for someone with special needs, is to leave. The thought is, people with special needs, should make an evacuation plan and only register for the SpNSs as a s helter of last resort. The SpNP should only be used when the primary plan has complications, such as, the car being in the shop and there is no way of ev acuating to a safe shelter. I dont need 20,000 people showing up to the Sun Dome, it wont handle that. I do need those people, to think about what they are going to do and have a plan prior. Should they register with us as a last re sort? Yes, just in case. A couple of the elites expressed conc erns about using the term special needs when talking about the population be ing served and the services offered. I dont care for the term special needs but I guess we are locked into it. According to Elite 4, few people underst and what the SpNP is all about and what services are offered. Elite 4 complained that the m edia, would focus on what to bring to a

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241 SpNS, but did not explain what constitu ted being identified as having special needs. Several of the elites felt that conf usion over the term special needs existed, because the state had not yet created a lega l definition, leaving it up to each county to come up with their own. Elite 6 explained that the DOH is just now writing a definition, of who should be regarded, as a special needs client. So how can we expect them to have a clear picture of what it is, when it took us all this time to write it? Many of the elites were asked, wh y there were so many people in the community requiring the services of the SpNP, but had not registered. The elites felt, that some people in t he community did not know about the SpNP and others either felt that they did not need or w ould never need the services, provided by the program. Most expressed that people with special needs, were no different than other people in the general population, when it came to prepar ing and developing plans for responding to hurricanes, in that they also waited until the last minute. Several of the elites had worked the Citizens Action Committees phone lines, during an evacuation and confirm ed that hundreds of people called during every evacuation, inquiring about the SpNP. Elites who worked the phones, said they had received a number of horri fying calls, from people needing help evacuating One young Mother in her thirti es, with three little children and two senile adults, who could not be moved. She is listening to the news reports and wondering what should she do. A mother with three little kids and two elderly senile parents is barely keeping her head abov e water, keeping everybody fed and their diapers changed. She knows that s he needs to register with the SpNP, but

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242 cant fit it in. The day that I was taking calls, I spoke to no fewer than three women and they were all younger than me tied to oxygen and had anxiety disorders. They just had great concerns, about getti ng in the car and going somewhere. When informed that the majo rity of the SpNP clients interviewed were living in low-income housing, Elite 1 said that most of the people registered in the SpNP, were of a lower income status. Explaini ng, that typically those with the financial resources, either have plans to leave the area and take a vacation or visit family. Some prepare their homes by buying sto rm shutters, a massive generator, and a large diesel storage tank. When informed that many people felt they could not afford to leave, Elite 1 replied, But then again how can they afford to stay? Elite 1 went on to explain, if the disaster hits, in the long run it cost more in money and discomfort to stay than to leave. All of the elites felt, there had been an enormous effort to get the public informed, so they could dev elop appropriate emergency plans Hit it from every possible direction. Hoping a little piece will stick here, another little piece there. Several of the elites expressed, recently there has been an increase in the media coverage, of how emergency management plans to deal with persons with disabilities. Both of Hillsboroughs co mmunity TV channels, have produced and aired segments on the SpNP. One network did a one-hour show, on what to expect at a SpNS. The focus is people do not know and a lot of money in the legislature is going towards education and community outreach. Elite 10 explained, when someone is registered with Hillsborough County Aging Services and should be registered in the SpNP, they are identified and

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243 registered for program. Aging Services tries to convince people to develop evacuation plans, but realize some will refuse to evacuate. You cant force them and you dont want to necessarily scare th em, but there comes a point where it is too late. According to Elite 7 when working wit h the elderly you must realize that, They never did it before and they are not goi ng to do it now. If they are going to die, they are going to die t ogether. Im not leaving and Im not pulling up stakes and living anywhere else. All of the elites felt that no matte r what outreach was done, there would always be some people, who did not get the information and others who would refuse to register. According to Elite 6, It may be a control type thing. Some people dont want to be put on a lis t and give up that information. Elite 2 gave the example, of recently m eeting a person who was parapl egic that had achieved a level of independence and refused to si gn up for the program, because they did not considered themselves as someone with special needs I am not sure what this individual would do in an emergen cy and there are a lo t of people like that. Elite 9 explained that another problem was, there are many non-documented immigrants in the county, who did not trust the government. This hidden population, will not come forward, due to fear of being deported. Staffing the Shelters One of the major issues, raised by the three focus groups for SpNP stakeholders, was the staffing of SpNSs during evacuations. During an evacuation individuals with special needs registered in the SpNP, are taken to a number of

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244 different locations including ARC shelters, SpNSs, hospitals, and nursing homes. Those SpNP clients, with acute medical c onditions are transported to hospitals and nursing homes, which are staffed by tr ained personnel and have the equipment to provide for the needs of this population. Those SpNP clients not requiring professional medical assistance, access to electricity for medical equipment, or oxygen are transported to ARC Shelters. The SpNSs are the catchall for those SpNP clients, whose medical condition ei ther requires professional care not available in an ARC shelter, or whose c ondition does not require the services or equipment only availabl e in a hospital. According to Elite 9, even with the DOH deploying the core of their staff to the three SpNSs, there would not be enough space to shelter all the special needs evacuees for a category four or five hu rricane evacuation. A fourth SpNS has been identified, but the county cannot provid e the appropriate staff, to open it. Both the county and state have offered to reimburse HHAs, who provide staff for SpNSs, but only one company has done so. The state just passed new legislation that requires home health providers including Hospice and Home Health Agencies, to insure that their patients receive compat ible care during the storm. The problem is, it doesnt tell them how to do, just that they are suppose to have plans. Several of the elites expressed frustrat ion, that in past evacuations agencies would send people to the SpNS, without pr oviding the staff necessary to ensure that their clients needs were met. It seems that several agencies, expect the SpNS to have staff available, to provi de medical services. Elite 9 gave as an example, a complaint from one NFP that th ere were not sign language interpreters

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245 for the deaf, at the shelters. Yet these very agencies, wanted to charge 150 dollars an hour, for their personn el to staff the shelter. When asked, why it took legislati on to get some of these agencies to participate in staffing the SpNSs, Elite 1 felt that what it came down to the agencies commitment to the community and that manpower was only used as an excuse. Its an individual decision that people make at the local level. Im not doing anything without funding. Well you dont ne ed money to do it. On those days that you are in the shelters, obviously you will not be doing your regular work. You are still getting paid. So what is your problem? In a disaster an agencies commitment to the community changes and in some ca ses, that means sending personnel to help staff shelters. According to Elite 9 when it came to the HHAs, the problem was their nurses were independent agent s, used as needed and there were very few full-time employees. Consequently, one nurse could work for four or five different agencies, being bound to none. Elite 9 further explained, that most of the people in SpNSs do not need a full time nur se, they just help getting to the bathroom and taking their medications. Several of the elites raised the issue that the HHAs have a very strong lobby and anytime the legislation tries to pl ace more stringent requirements on the industry, it gets removed. Even so, under th e new legislation the HHAs will have to describe how they will ensure for the c ontinued care of their patients during a disaster, wherever they may shelter in the community They will not be able to avoid it, they will have to address in some way. It could be an agreement to pool their resources. It could be an agreement post nurses at the SpNSs and then have

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246 them to travel around. It could be them soliciting volunteers to work in SpNSs. No one has told them how to do this. This is something that they must come up with, that we are going to be working with them on. In the past, CMSs role in the SpNP wa s only the enrollment of their clients. In 2006, Florida legislated through House B ill 7121 made CMS directly responsible for providing care for their clients, in the SpNSs Kind of like hospice. They have their own staff and they have their own special equipment. According to one of the elites, it came in at the tail end of the legislative session and though language had been bantered about for m onths, the sponsor did not take all the recommendations from the county DOHs or CMS agencies. This year in Hillsborough County, if ther e is a hurricane evacuation, pediatrics will be sheltered in the SpNS at the Sun Dome. In the future, CMS will have to identify their own shelter. According to Elite 5, the biggest issues for CMS, were identifying appropriate shelters and training issues. A standardized policy has not been developed by CMS, because of t he clarity of their exact role as legislated, so the different counties will have di fferent ideas as to the exact role CMS will play. The biggest thing, is just trying to find a common ground, in the definit ion of the role of CMS. Employees of CMS are now required to sign up for emergency duty and if they fail to show up for work during an emergency, they face getting fired There are going to be dollars, but where they are coming from we dont know. All the hospitals in Hillsborough Count y are used for hurricane evacuations, except for the one hospital, located in a level one-flood zone. According to the

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247 DOH, there are currently about 300 people, assigned to hospitals. People with medical conditions requiring intensive ca re, which cannot be handled by the SpNS staff, such as ventilators are sent to hospitals. Also those people over 300 pounds who cannot lie on the floor and are too heavy fo r the cots at the Sp NSs, are sent to hospitals. As the issue was raised by a couple of obese SpNP clients interviewed, several of the elites were asked about the presence of pers onal care, at the hospitals. The answer was surprising. You got to understand, this is not like a regular admission into the hospital for medi cal reasons, where you are going to get the medical care. We are me rely providing a place to shelter. That person has the option of bringing a caregive r, as each individual is per sonally responsible. The hospital does not have the nursing staff ava ilable, to watch each and every person. Now should an emergency arrive? Yes they would be jumping right in there. But to help people get in and out of bed, you k now, is going to be if they have time. They are running on a skeleton staff. While the VA tries to get veterans to go to the SpNS they will take vent patients, because they have few places to go, as many local hospitals do not specialized in vents. According to Elite 7, when evacuating to the VA, patient s are expected to arrive wit h their own medication and caregiver. Role of Retirement Communities During the interview with Elite 2, t he issue of the role of retirement communities and facilities in protecting resi dents, during disaster s was raised. In the 2004 and 2005 hurricane seasons, many elderly frail residents were trapped in

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248 high-rise buildings, with no electricity to operate elevators. The operators of the buildings were not prepared, to deal with the crisis. Many residents suffered, before they could be rescued and remov ed from the building. Consequently, representatives from two retirement co mmunities in Hillsborough County were included in the elite interviews. These representatives were also active in the SpNP. Developed over 40 years ago in located in the southern part of Hillsborough County, this large, upper-class retirement communitys residents must be at least 55 years old. A city in itself this u pper-class retirement community has its own hospital, nursing homes, volunteer emergency squad, and four private ambulances. The person interviewed act ually developed a special needs plan for this large retirement community, befor e Hillsborough County had such a program. According to Elite 2, this community is proud of being able to take care of the needs of its residents and do not use count y programs, as much as the county would like They believe that they are so well educated and experienced that they can take care of all their communitys needs. According to Elite 8, government representatives from H illsborough County did not underst and the implications of this upper-class retirement community having a private emergency system. Because residents did not use the 911 emergency system, the county saves money, by not having to answer an additional 12,000 calls a year. When asked why the program was develop ed at the upper-class retirement community, Elite 8 replied, You couldnt go into these houses day-after-day and not see that there were needs. Because if nobody is in the house is under 90 and

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249 you normally have a caregiver who takes care of you and they are not going to be able to come, because they are with their family then you can be at risk. According to Elite 8, the community has about 250 people registered in the SpNP. Elite 8 had some complaints, about t he new system being implemented by the DOH. In the past, t he higher income retirement community would screen residents for the SpNP and sent a list to t he EOC, who would a ccept their list and consider everyone registered. Now the DOH, wants people to fill out and turn in their own registration form. According to Elite 8, You cant always get these people to fill these forms out right. They won t or they worry that if they did, it means that they have to go. You cant convince them that it is just a form to fill out and to give them the information. Let me tell you, what we do with the list. We are gonna stick with my list, not their list. Unlike the higher income retirement community, the second elite from a retirement community interviewed, r epresented a lower income retirement community, whose residents were of low to middle income. With many of its residents living in trailers, this community started out as Secti on 8 housing in 1970. In 1984, this community was licensed by the State of Florida Agency for Health Care Administration as an Assisted Living Facility and has an Extended Congregated Care license, which allows it to operate a nursing ho me onsite. The lower income retirement community, wa s located in a level 4-flood zone. In 2004, the lower income retirement community evacuated twice to a local high school, taking 250 residents and 50 staff, along with three day worth of supplies. People were tr ansported, using a combinatio n of retirement community

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250 vans and buses supplied by the county. Residents were also transported to the SpNS by the county, where they are accompanied by a registered nurse and a nurses aid, for every 10 evacuees. According to Elite 4, having familiar support personal at the SpNS helps, the residents adjust to the new environment, in the shelter. When asked if st aff were required to work in the shelters, Elite 4 responded, that all new staff must si gn a contract agreeing to work during hurricane evacuation Of course we give them time to go home and set up their homes and make sure their loved ones are ok. They are allowed to bring their family, but they cant bring their whole extended family. Animals are a problem. When asked if lower income retirem ent community, provided any hurricane preparedness information to the residents, Elite 4 responded that they did. Besides briefing in the lunchroom and re sident council meetings, information is available on the facilities private info rmation TV channel. All residents are required, to evacuate during a hurricane and everyone is encouraged, to stay with a friend or family in a safe area. T hough Elite 4 admits a person cannot be forced to evacuate, the police visit those refusing, so that if they choose to stay the management of the retirement community was not liable for their safety. Governments Role in SpNP The director of the EOC has been known to say, We are here to take care of the needy not the greedy words that speak for themse lves. Meaning that those who are physically and finically able, shoul d have plans and care for themselves, in the event of a hurricane. Florida is known national, for legislation suspending

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251 taxes on the purchase of hurricane relat ed supplies and equipment in June, the first month of hurricane season. When asked about major changes were made over the past couple of years in the SpNP, many of the elites being in terview referred to House Bill 7121, which had recently been passed by Floridas l egislation. Bill 7121 mandates, that agencies having clients evacuated to a SpNS, must provide staff or some sort of support to local emergency management. This includes, both government agencies (Department of Education, Departm ent of Elder Affairs, Childrens Medical Services, American Health Care Association, and Department of Health) and public agencies/businesses (Home H ealth Agencies, Home Medical Equipment Agencies, and Nurse Registries), that provided services paid for by Floridas Medicaid system. As a result of this bill, Elite 6 felt that as a whole the state, was more organized and have starte d developing plans and specific goals for SpNSs statewide. When asked why it took legislation, to get some of the agencies to participate in the SpNP, several of t he elites agreed it was a funding issue With the exception of very few agencies, the duties related to SpNSs are in addition to what people are already doing. Agencies ar e working with bare staff as it is and they are overworked. The legislation did bring about some funding. Some went toward education and some went for the re trofitting of the shelters. But the majority of things added, are dut ies without the back up of funding. According to Elite 5 since HB 71 21, CMS has standardized policies and procedures, across the six-county region. When asked why CMS did not make

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252 these changes years ago, Elite 5 replied, Because I dont think they really thought a need for it. I think that there was a subs tantial amount of ti me, when there were no big storms that hit Florida. I think a lot of that apathy happened, believe it or not. Elite 10 expressed that with the current attention to Sp NSs, there is a lot of funding available and progress is being made, but it may not continue. Noting that the SpNP was a government pr ogram, many elites worried that the current funding commitment may not conti nue, into the future. I dont see a lot of new money coming down the pike and I ju st dont see a very coordi nated dollar. So no Im not overly hopeful. According to Elite 6 the same funding pattern is going on with the pandemic flu scare. There is so much money being out there and people give you this money and you have got to spend it by this time period. So right from the start, the money isnt necessarily being spent on what it needs to be spent on, because there are these tight restrictions and time limits. I keep bringing up funding, but it is not necessarily a total lack of money, but more poor management. When asked why the changes were being made now and not years ago after Hurricane Andrew, Elite 6 replied, I would say the 2004 hurricanes. I think that from my observation what usually causes some kind of change, is an event. Now why the hurricanes of 2004 as opposed to Andrew, I am not exactly sure. But all the same stuff we ar e doing now, was started a fter Andrew, but was not followed through. Several of the elites thought that since the 2004 hurricane season, many more agencies have gotten serious about the SpNP and have

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253 started coordinating thei r planning, with other agen cies in the program. I have noticed the last couple of years, there hav e been big jump in the number of people attending the SpNP meetings especially agencies that I havent seen before. Non-profits have all of a sudden started showing up. Advocacy groups for the disabled are showing up. There is mu ch more advocacy and immigration between those groups, so that there is a coor dinated approach, instead of a scattering of unconnected groups. According to Elite 1, since the DOH has gotten involved in the SpNP, the EOC staff has the freedom to work on obt aining grant money for new equipment for the SpNSs. When asked if they thought Hurricane Ka trina, had a part to play in the recent interest in the SpNP. Elite 3 replied, Thats why we are here. It scared people and did wake some peopl e up. When they first started showing some of the media, you know the videos on TV of th e victims, the drowning victims. One of the first people I saw, was a double amputee. From a government official standpoint 10 percent were woken up and 90 per cent are running scared. From a population standpoint woke up, about 10-20 percent of the population. Apathy comes back. You know they say that Hurricane Camille, killed more people during Katrina than it did in 1969, because of the false sense of security. People lived in areas not touched by Hurricane Camille, but were completely destroyed by Hurricane Katrina. When Elite 3 was asked why it had taken so long for many communities to address the needs of people with disabilitie s, during an evacuation he responded, that he did not know. It is partially the fault of the government, but it is also

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254 partially the fault of the disabled not advocating for themselves. It took something like 9-11 that really woke people up. I think there should hav e been a disability movement long before that. When probed for more information Elite 3 replied, You know, put yourself in a life with disabi lity. Put yourself back in school twenty years ago, you know, when nothing was a ccessible. Put yourself in the psychological position and see how other people view you. You tend to put yourself into a shell and try not to make a lot of waves. Weaknesses of the SpNP When questioned as to what were the weaknesses of the SpNP, several of the elites believed, the major weakness with the program were due to issues between the county government and the various city gov ernments in Hillsborough County. See the county looks after residents of the county. The cities look at residents of their city. A nd each of those cities is more important than anyone else, cities fighting with the county. When asked why the SpNP database was only updated once a year, Elite 9 responded that it gets updated a ll the time, as new people sign up. The DOH gets the death list for people over 18 and using Social Security Numbers they remove those individuals, who die during the year. When informed that the representative for the higher income retirement comm unity felt that the database should be updated quarterly; Elite 9 said that DOH did not have the manpower, to contact the 4,000 plus people in the database quarterly.

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255 Asked why children assigned to Shriner s were only allowed to have one caregiver accompany them to t he hospital, Elite 9 replied, Weve done away with that because it was a stupi d policy. A child in many cases needs both parents, especially a pediatric child who really needs that emotional support. In the past, problems have occurred when an individual assigned to a SpNS arrives with extended families (grandparents, aunts, uncle s, and cousins), up to 20 people. Another weakness of the SpNP was t he sheltering of individuals, with mental health issues. According to one of the elites, the legisl ation defines mental health, but gives the local community the opinion of making a judgment call when admitting people with mental health issues, into to a SpNS. I think it was very well intended verbiage, but the person who put it in didnt know what they were saying, with the language. I would nev er say that our legislator s dont know what the hell they are doing, but yes, they dont know what the hell they are doing. Because some special interest group pushed the button and got this included. According to Elite 10, one of the weaknesses of the SPNP was that it focused on preparedness and response, not recovery. Its the reality of recovery and how do you go on? That will be probab ly the most incredible learning experience for us. It has been over two years since Hardee County was devastated and they still only have one road in and out. You have got to remember, when a community is devastated by a hurricane, everyone is affected. First responders may be helping other people recover from the disaster, meanwhile they may have to deal, wit h the fact that their homes have been destroyed.

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256 Agency Disaster Plans Many county SpNPs have been improvin g how they deal with people with disabilities, in the shelters. According to Elite 3, emergency management at the state level sent a letter to all the emergency management o ffices, encouraging them to contact the Centers for Indepen dent Living (CIL) to begin a dialogue on sheltering people with disabilities. Enclos ed in the letter was contact information and maps identifying the location of loca l CILs. All this, was a part of the governors initiative to establish a culture of preparedness, in Florida. According to Elite 2, Hillsborough C ounty has always had a hurricane plan and we thought it was a good plan. During the 2004 and 2005 hurricanes seasons, Hillsborough County employees were sent to help with the recovery work, in areas devastated by hurricanes. With lessons learned brought back, county agencies were able to improve thei r own programs. One of the lessons learned, was that people in the community needed to have a disaster plan in place, before a hurricane. According to Elite 2, this is especially true for government workers, who are relied upon by residents to continue vital services. As a result Hillsborough County dev eloped a program, Have a plan, know your plan to ensure that all county workers knew their work role in a disaster and had plans to care for their families Soon our ID badges, will include a sticker on the back that will say what your role is for an emer gency and a number to call, when we are setting up our post disaster headquarters. Since the 2004 and 2005 hurricane s easons, Elite 5s non-government agency, has developed a continuity of operati ons plan. Basically, the plan lays out

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257 what actions need to be taken, before and after the storm. For example, after the storm they do a call down to s ee if their clients are okay. We also have to be able to schedule those patients at the clinics and places for di stribution of medications. So all those things that would provide t he same service, that they would have had pre-storm, we have to attempt to provide as much as possible post-storm. The local DOEA tests their agency plan yearly, going as far as, relocating to an alternative location to work. Each year the disaster plan is updated and personnel receive training. Still Elit e 10 expressed concerns, that because Hillsborough has not exper ienced a direct hit, their pl ans may have holes that have not yet been identified. When a hurricane warn ing is posted, the local DOEA office is in constant communication with the Tallahassee office. Local providers are contacted and all banking and client data is relocated out-of-state. Training Since mandated to staff pediatric s helters, CMS has developed quarterly orientation for new employees and yearly trained for everyone. CMS also offers training, to pediatricians and lo cal community partners, if requested. They are also developing presentations for fa milies, on disaster planning. Receiving grant money from Volunteer Florida, the governors commission on Volunteerism, Elite 3 said that his agency was targeting training, in a couple of different ways. One component was to train staff, for th e SpNSs and ARC shelters on disability issues and other critical information useful, when sheltering persons with disabilities The one I use most often that ca tches everybodys attention, is

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258 that most quadriplegics lose the ability to sweat. And as you know, sweating is the bodys way of regulating tem perature. So when a quadripl egic asks for a cold wet towel, its important, not a luxury. It is a matter of medical survival. The other aspect of the training grant was to get people with disabilities, registered in the SpNP, if t hey need the services. The grant was also to be used to train people with disabilities, how to prepare their home and what supplies to purchase, if they plan to shelter-in-plac e. Finally the grant was to be used to convince people with disabilities, the bes t plan should be to get the heck out of Dodge and evacuate to an area, not in the path of the hurricane. SpNSs and ARC shelters should be a plan of last resort and utilized, only if absolutely necessary. For those who plan to evacuate to a public s helter. the training will be directed at insuring the person knows, what necessa ry supplies they should bring and more importantly what to expect at the shelter. People are in formed that at the shelter, they should only expect a roof over their head. You are not going to get any medicine. They are not going to give you ba ths. They are basically there to keep you alive. So dont go in there expecti ng that. You are going to have to prepare your own stuff. During the training people are given to go bags, that contain most of the essentials and instructions of what items should be in the bag for the particular needs of people with a certain disability. The grant also had a focus in providing outreach, to Spanish-speaking populations, in rural areas. Elite 3 said that to reach the rural Spanish populat ion, they were working with the Spanish Services Council and Spanish churches.

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259 Non-Evacuation When asked why many people in the commu nity choose to remain in their homes, even after being ordered by emer gency management to evacuate; Elite 5 expressed the opinion, that many people in Hillsborough wrongly believe they experienced hurricanes in 2004. They are convinced that it is not going to be a problem. People who are going to stay in their homes and if a category 4 or 5 comes in through Tampa Bay, they would be devastated. There are going to be people who take it seriously at the very last minute, so SpNSs are going to be bombarded. Not just SpNSs, but all shelters. When confronted with the iss ue that many of the Sp NP clients interviewed expressed fear, when discussi ng the possibility of evacuating to a SpNS; Elite 9 replied, it was fear of the unknown. Expl aining that this fear was especially true of the elderly, You take a person who has been coc ooned in their home for the last year, in a very controlled environment and s uddenly you rip then out of there. You take them to a place they havent been to and surround them with strangers, bright lights and noise. Yes, they are going to be afraid. Elite 9 went on to explain, the only thing that can be done, was to continue to talk to people and give an honest description of the situat ion in the shelter. Tell them that its not a cruise ship, it is designed to keep you alive. You may not be totally comfortable, but you will be safe. Most people who come to a SpNS ar e elderly and in fairly bad shape, with many confined to wheelchairs or cots. Many of the ca regivers, accompanying the SpNP client are also elderly, often with chronic medical conditions of their own.

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260 When informed that many people feared going to the SpNS at the USF Sun Dome, because they identified it with the New Orleans Super Dome, a shelter of last resort. Elite 9 explained, this fear was partially the fault of the medias coverage of Hurricane Katrina, where t hey showed what happened at the Super Dome but should have focused cover age on what happened to those people that stayed home. Elite 10 thought, what was needed was a, better marketing campaign on what our shelters really look li ke. What they can really do. How they can be of help. And what they cant do. The client must develop a sense of trust, that the SpNS will provide a safe haven, during a hurricane evacuation. Pets in Shelters Many of the elites were asked what they thought the future would be for those people, who want to bring their pets wit h them, when evacuating to a shelter. According to Elite 9, currently all the SpNSs are pet friendly but of the 50 ARC shelters in Hillsborough County, only two allo w pets. That is of course except for service animals, which are allowed in any s helter. The fact that SpNSs were pet friendly was not advertised, but if they pets were brought in cages, the shelter will have staff from Animal Services t here to take care of them. According to the Elite 9 a conservative estimate, was that there are over half a million pets in Hillsborough County, not counting farm animals. There are some kennels and veterinarian offices that can board pets, but the numbers of those are relatively small. Elite 9 explained t hat for many people, es pecially the elderly population, pets are a very int egral part of their family and they will not leave them

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261 behind when evacuating HartLine and Sunshine Line have agreed to take pets to and from the shelters, but the School B oards Transportation Department have not agreed to transport animals. Elite 1 believed it came down to the question, as to whose life is most valued by the community, humans or pets and emergency management should focus on humans. People decide whether or not to have pets. Consequently, during a disaster pets should be the re sponsibility of the owners, not the government. Even though pets ar e accepted at the SpNSs, there was a limit to the number that can be sheltered. If the SpNS gets to where space was limited, the shelter manager will have to make a difficult decision and stop taking pets Im sorry that we are not going to be able to take them in, because Mary registered first, so her dog is more important than your dog. Blaming the pet situation on the media, Elite 1, contended that the media went out and filmed stranded animals and then switched to a child crying stirring public sentiment. The medi a made it appear the government was responsible, for the rescue of these pets. The media should have taken pictures of abandoned pets and then interviewed emergency managem ent, who could explain that this happened because people were irresponsible. If the story had been presented a different way, it would have been a non-issue it would be the responsibility of that owner. For years, people have been told that they need to make arrangements for their pets, during a hurricane evacuation. Elite 1 thought, it is time to start calling people on that.

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262 Culture of Preparedness or Dependency Elite 1 believed that when developi ng emergency plans, the planner must accept that a very large porti on of Americans, will not listen. Its always going to happen to someone else. California has earthquakes, yet they build billion dollar buildings within two miles of the fault line. Youve got that mentality of its not going to happen or if it happens it will be minor and we will get by. Here you have people saying, well I have lived here all my li fe. I have survived all these storms. Whats the big deal? Well the big deal is they have no idea what they are talking about, because they have never been through a major storm. According to Elite 8 where ever y ou live there are weather hazards, you have to prepare for and be ready to deal wit h. Live in Minnesota, expect and be ready for snowstorms. Live in Florida, expect and be ready for hurricanes. People should only be dependent on the government, when nature delivers a surprise to a community, like a snowstorm in Florida. When asked about the role of the government in responding to a hurricane, Elite 4 responded that many Americans, expect the government to ta ke care of everything. Well the government cant take care of everything and people need to lear n that. What ever happened to work and helping others when they need it? Who ev er said that we have to go to the government for every last thing? Elite 7 had been at a SpNS, when several families abandoned SpNP clients. Two wives dropped their spouses off at the shelter, with no caregiver. The wives returned home to care for the pets and set out the storm in t he comfort of their

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263 homes. I didnt think that I would ever s ee the day, when family members treat family like that. When it comes to people with disabiliti es, Elite 3 believed the system itself creates a situation where people are fo rced, to be dependent on the government. The government does this, by not providing the appropriate services necessary to allow some people, to live independently. An example from this study would be access to transportation, by individuals with mobility difficulties. A couple of the SpNP clients interviewed, lived close to accessible public transportation, are able to leave home and be part of the community. Meanwhi le, another SpNP client interviewed with mobility problems, lived over a mile from the nearest bus stop, could not afford to pay for a taxi and was essentially homebound. A retired social worker with great communications skills, th is person would like to contribute to society, but because of the lack of public transportation cannot. The researcher informed the elites interviewed, there appeared to be a lot of apathy, among both residents and professionals. Elite 9 thought the apathy was, the result of years of hurricanes not co ming close enough to Hillsborough, to cause much damage. Elite 5 gave an example, where she asked a nurse if she was prepared for the hurricane headed for the area and got the response, Its not a hurricane anymore, because it had just been dow ngraded. Its a tropical storm, so why do I need to plan? Apparently the nurse di d not understand, the tropical storm could easily become a hurricane again or that tornados also spin off of tropical storms.

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264 Hispanic Culture Seven of the 30 SpNP clients interview were Hispanic. All were Puerto Rican, except for two. One was a se cond generation Cuban, who had spent most of her life in Puerto Rico and the other wa s from a Cuban family, which had been in Hillsborough County for several generations. According to Elite 6 this is not surprising, as recently the DOH had co mpleted a survey of people with Hispanic backgrounds and found that the Puerto Rican population was rapidly growing. None of the elites expressed surprise, when informed that many of the Hispanics SpNP clients interviewed express feelings, that they would rather not evacuate the comfort of their home. Acco rding to Elite 2, part of the Hispanic culture is being self-sufficient and taking care of their ow n family, but added that the mindset of the elderly was generally different than the y ounger generation. In that, many of the elderly have already lived l onger than they expected and their lives were in the hands of god. The elites were informed that inte rviews with Hispanic SpNP clients, suggested that they had little knowledge about the program and they blamed their ignorance on the Spanish media. To this Elite 9 responded, I think some part of it is they stay very closed in their own little cocoons and they live in a very, very closed tight little society. Elite 9 confirmed that all the material on hurricanes was available in Spanish, as were the county s Hurricane Guides. Elite 9 also reported that Spanish-speaking stations have interv iewed representatives of the EOC and have aired educational segments. Also EO C representatives in the effort to educate the public about the SpNP, have ta rgeted to Spanish audiences in the

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265 community and at ALFs. Elite 9 express ed frustration with the Spanish community in general. We can put it out there, make it avail able, and if they refuse to do that we cant force them. We cannot be babysitters. Elite 7 repeated this sentiment after informing the researcher, the VA had a ll of their material translated into Spanish. All we have to do is cover ourselves and give them the information. Then it is up to them to take it on and use it or dispose of it. According to Elite 2, the county has hired an interpreter, w ho translates into Spanish all emergency material. This information is then distributed though public agencies, special interest groups, and churches. Education The elites were informed, it was appar ent that few of the SpNP clients interviewed, had any idea what the program was about. Though these people had been registered in the SpNP, they really had no idea, what serv ices the program did and did not provide. Agreeing with this statement Elite 6, suggested that for some people the SpNP was just another heal th care program, they were enrolled in. According to Elite 3, thos e residents in his ALF who had never been evacuated thought the SpNP was only connected with hurricane evacuation. Even myself, when reading and listening on my TV s pecial needs is there, but they really dont tell you and it is kind of lost. When asked what could be done to help people in the community develop a better understanding of the SpNP, Elite 3 r eplied, educating people is a far better than trying to shove something down somebodys throat. The majority of times in

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266 my career, when I sought change through educational type st ance, people were much more receptive. Several of the elites ex pressed, they have used many different modalities to educate the public, about the SpNP. All HHAs are required by law to register new patients, who qualif y for the program. There is the Citizens Action Line, which is active daily for 16 hours and a place were people could call to get information about the SpNP or to regist er. Every year registration forms are included with a bill, from the Tampa Electric Company. Also according to Elite 9, the EOC gives close to 200 talks a year on the SpNP and there is a good working relationship with the local newspapers, which have been very supportive and put out all kinds of information. Elite 1 pointed out that DOH realizes that knowledge about the SpNP was an issue. They had just assigned a nurse to direct the program and one of her new duties is to provide information, to anyone who would listen. Included in these briefings was information on what to ex pect in the shelters, complete with photographs of previous evacuations and what to bring with you. But you got to accept the fact that you have to continue advertising and educating. Not scaring, advertising and educating. Then you have to a ccept the fact that not everybody is going to listen. When asked what the disability community thought about the SpNP, Elite 3 replied, that most people are scared and worried that the program might not accommodate their needs. The ones who havent been there, they are probably scared to death. As a solution Elite 3, suggested that an accessibility study of the SpNSs be performed and there should be an awareness day, where people with

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267 disabilities can go and experience the shelte r for a few hours. She added that an awareness day, would be a great opportunity to get some free media attention. The elites were informed that one of the SpNP clients interviewed, suggested that a video be developed, publiciz ing the different shelters SpNP clients might get sent to. Let people see what to expect and what not to expect at the SpNSs, Shriners, the hospitals, and the ARC shelters. Show what they really are, what to expect, and what not to ex pect. The suggestion was made, that the video be comical, poking fun at the unprepared individual. The actors in the video should be multicultural and represent diffe rent age groups. Copies of the video should be sent to people after acceptance in to the program. With a video format the SpNP client can pop it in and watch it when requested to evacuate, refreshing their memory concerning the program. Both Elite 4 and 10 thought that the use of comedy was a good idea and would probable hold the viewers interests, rather than us ing a stuffy, dry format. If you keep their interest theyll get it. They will get the m eaning of everything, when they see it. Elite 10 suggested that the video include a mock opening of shelters, so that people can see what to expect and what staff is going to be available. Elite 10 emphasized the importance of making sure, people understood the transportation and sheltering aspects of the SpNP. Elite 1 and Elite 9 expressed concern, about the cost and effectiveness of giving everyone in the program a video. Both thought it would be expensive massproducing and mailing out copies of the video. Elite 9 thought that many of the elderly do not have VCRs, CD pl ayers, or computers and c ould not play the video.

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268 As an alternative, both elites stated that arrangements shoul d be made with the public TV stations, to broadcast the video at certain times and send letters to SpNP clients as to when to watch. Again El ite 9 brought up the issue, that many lowincome people may not have cable TV and would not be able to watch the broadcast. When asked if they thought t hat the video would make a difference, both thought that it would hav e a moderate effect on educ ating people, as to the workings of the SpNP. When it comes to educating people, Elite 8 expressed that the message needed to be targeted to the physical ab ilities of the audience. She gave an example of a demonstration s he, the EOC, and ARC gave to 600 elderly people in one of the local retirement communities. They talked about filling these large thermoses with water and pulling a mattress ov er your head in t he bathtub. I got up and said before I speak, will everybody raise their hand, who could pull a mattress over their head? And the place roared. You dont carry something this big with water, you cant do it. I said now lets talk how you prepare here. You find a safe bathroom and you pull a couch mattress over your head. Things that they say you should do are not pr actical for older people. Elite 8, emphasized that educators must make sure that their material is appropriat e, to the audience they are speaking too, because not everyone is young and healthy. Role of Media The elites interviewed, were asked if they thought the media went a little overboard, in its coverage of the upcoming hurricane season. None of the elites

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269 expressed concern, that t here was too much media cove rage. Many, like Elite 3, said that the more coverage provided the better. If you have to shove it down peoples throats, until t hey wake up, do it. Elite 1 replied that when operating a SpNS, a television is set up and the news is on constantly, because people want to see it. According to Elite 1, the updat ed information on the hurricane helps to calm people, because lack of knowledge is one of t he worst things to have in a shelter. When people do not have access to accurate information, it created a perfect environment for rumors to develop, which spread like a wildfire creating fear and anxiety. Elites were informed that the Hispanic SpNP clients interviewed, felt that the Spanish media did not provide adequate co verage of hurricanes and they had to turn to an English station fo r information. Elite 9 expre ssed, that he disagreed and the Spanish media was very interested. E lite 2 felt that in the past, the Spanish media were not involved as they should have been, but had recently changed their mindset. When probed as to why they were engaged now, the response was, I think as the community has grown, bec ome more sophisticated, and now they understand the need for that type of information. County Development of SpNPs All elites were asked why SpNPs and SpNSs, were so different between counties. Each county in Florida is independent and responsible for developing a SpNP, according to Elite 1. Each county is required to have SpNSs, but some of the rural counties do not have buildings meet ing the construction codes, to serve

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270 as shelters. These counties have devel oped regional agreements, to send their SpNP clients, to other count ies. Elite 6 expressed, that some counties sheltered their SpNP clients with the general popul ation, confused residents of those counties that separated the popul ations. As a result, so me people are afraid of going to shelters, where they might be exposed to undesirable elements. Because of the large population it se rves, the Hillsborough County DOH has over 500 employees and provides medical ca re at their clini cs. Some of the DOHs, in smaller counties, contract pr ivate health care providers to provide medical services. As a result, these DOHs did not have many nurses on staff, to operate SpNSs. Actually Hillsborough is faci ng the same issue, as there is a need to open a SpNS in the Northwest area of the county, but DOH does not have the personnel to staff a fourth shelter. While the DOH will provide management for the new shelter, the county must come up with a method of obtaining appropriate staff. When asked to compare the different c ounty SpNPs, Elite 5 thought that for the most part Hillsboroughs was the strongest in the area. But since being affected by three hurricanes in 2004, Polk County had recently developed a strong program, as well. Severa l of the elites thought that Hillsboroughs SpNP was currently the strongest in the state, because they were looking at the big picture, while a lot of other counties did not. One example given wa s that Hillsborough provides transportation not only to SpNS and hospitals, but has developed plans to get many persons with disabilities to ARC shelters. Hillsborough also has made arrangements to provide transportation to ARC shelters, for people in the general public, who have no access to private transpo rtation. A second example, were the

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271 efforts made by Hillsborough County to allow evacuees to bring their pets to shelters, even going so far as to get public transportation to take pets. Most of the elites pointed out that c ounties hit by the eight hurricanes in 2004 and 2005, were forced to examine t heir emergency programs, as serious weakness had been exposed After the first hurricane passed it was bad. Then more people started talking to each other. More than I had ever seen before. We learned from the first storm. And then by the second and third hurricane, you had things in place. Several of the elites interviewed thought that Hillsboroug h had the strongest SpNP, because they held several meetings each year and involved every agency or business they could get to attend. It was made clear that every representative at the meeting, was given the opportunity to express their opinions, which were discussed and acted on. Because of this openness and cooperation, everyone on the SpNP Planning Committee, had a sense of program ownership. Several of the elites claimed, some of the other counties had few m eetings and generally exclude other agencies from the plannin g process. As a result some, of the counties, just are not getting it done Of the 10 elites interviewed, four wo rked for agencies that had jurisdiction over several counties. All four of the elites, either attended the Hillsborough SpNP Planning Committee meetings or were repr esented by staff, responsible for that program. When asked, if t hey attended SpNP meetings in other counties, only two did so. One of the elites expressed t hat at least one county wanted her agency to send a representative to their SpNP Pl anning Committee meeting; but since the

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272 agency was headquartered in Hillsborough it wa s not realistic, because of the driving distance. According to Elite 10, one of the reas ons Hillsborough Countys SpNP is so strong was because of the fact, that the county was heavily committed to providing social services. This not only provi ded professional personnel, but the expertise needed to understand the issues, associated with meeting the needs of a special needs population. Also according to several elites, Hillsborough was the only county that made the commitm ent to reimburse medical personnel, for working in the SpNS or reimburse ALFs and nur sing homes for sheltering clients. When probed as to what factors caus ed Hillsborough Countys SpNP to be better than other counties, many of the elites were quick to point out it originated with the EOC staff. A ccording to Elite 1, Hillsborough is probably the best prepared in the nation. It was a small core group of people who are very, very good at what they do. They are not afraid to speak their minds and push the issues. Typically when you do that and you are not threatened by your audience, you can actually start driving home points. You become a more effective communicator and a lot of people a ttribute that to leadership. When asked how Hillsborough developed it s plan over the years, Elite 9 responded, I think that there has been a long hi story, a certain representative of the EOC, always had committ ees that have worked with various parts of the community such as the hospitals. He went on to explain, when new issues came up, the EOC made the effort to contact the appropriate agency to deal with the problem and got them to become members of the Sp NP Planning Committee. We

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273 started sending our Set-Reps to every body, so that people know who we are. This outreach by the EOC, over the years, brought many agencies into the planning process (e.g., Tampa Housing Au thority, Hospice, HHAs and dialysis companies). Hillsborough was able to purc hase supplies for the SpNSs, by using Homeland Security grant money, earmark ed for developing programs responding to terrorism attacks In some counties the emphasis all went to terrorism. But if youre smart you realize that responding to a terrorist attack or a hurricane 90 95 percent of the preparation is the same and the equipment is the same. So if you buy the things for one, theyre good for the other. Several of the elites expressed, the director of the Hillsborough EOC, Larry Gispert, was well trained and ahead of his time. Elite 2 stated, he built a team of largely retired military and was well positioned to get a state grant, which does come very often. You know there is a cycle of state and federal funding. He just happened to be there and be well positioned and have the support of the county policy makers at the right time. Over the years the EO C quietly developed a plan and exercised it yearly with few resources, other than the commitment of people in the SpNP Planning Committee. When informed that several of the elit es had expressed, they thought the military background possessed by the majori ty of EOC staff had something to do with their success, Elite 9 (a re tired Army Colonel) replied, It depends on your background, if you were an intelligence per son and want to hold everything close you may not want to talk with anyone. I think it is also the atmosphere put in place by your boss. And Larry our boss has a very open he says go out there work

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274 with people and bring them in. If you have an emergency manager who is closed, then that permeates the staff. He went on to add that the EOC gets great support from the County Commission an d the County Administrator I think Hillsborough County is lucky, in that there are a lot of really good people, who work for this county. There are really dedicated people, who are there every day to try and make things better. According to Elite 2, Hillsborough is basically a blue collared working class community, with many needy people and pe ople who live from paycheck to paycheck. Since many people in the commu nity are transient, the county must focus on taking care of all these newcomers. In the past, because of the Spanish, Italian, and German communities who were outcast from Tampas broader society a community developed that was very strong, when it came to caring for its own. As the community became larger, people we re dispersed out in the community, but they still had their roots. Elite 2 explained that though Tampa became a large metropolitan area, that sense of caring fo r its own remained. When informed that several of the SpNP clients interviewed st ated that the reason that they moved to Hillsborough, rather than live in one of the surrounding counties, was because of the social and medical services. Elite 2 stated, that it did not surprise her. Another reason for having such a good working emergency plan was because of the existence Hillsborough County Emergency Operations Group, comprised of the County Sheriff, three County Commissioners, and the mayors of Hillsboroughs three major cities (Tampa, Plant City, and Temple Terrace). This group meets on a regular basis and has been briefed on the activi ties of the EOC.

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275 It is also apparent that t he EOC leadership, demonstrates great vision. A comment made by Elite 2, about a trip she took to a large urban caucus, where she attended a special emergency workshop. There were top public health people presenting on the panel and one of them said Id bet nobody here knows what I am talking about when I talk about a pandemic. Do any of you have a plan for your community in a pandemic? Pat Bean raised her hand. He was flabbergasted. She was the only one, in a very crowded room. The county had just completed the first county pandemic exercise, in the United States. Future of the SpNP When asked what improvements need to be dealt with in the future, Elite 3 expressed, that ther e needed to be somebody in FEMA who focused on disabilities. Guidance from the federal level would help standardized community plans, for sheltering people with disabilities. According to Elite 3, many people had lost medical equipment due to hurricane damage, and Medicare guidelines state that equipment can only be replaced every five years. As a federal program Medicare, will require legislative action to allow for the timely replacement of medical equipment, lost to disasters. Elite 10 commented, t hat we know that the Sun Dome will not take winds over 130 mph and that was a problem. If building on USF campus, why not look at constructing buildings to accommodate ev acuees. They are doing that with new high schools being built in the state. They are not built as SpNS, but regular

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276 shelters. But SpNSs that would be crit ical and you need the proper wiring. You need the generator. When asked when the SpNP should be in the future, Elite 6 responded, Ideally there would be designated buildings in every county set-aside as SpNSs. They would have everything t hat they need, as far as, supplies and manpower that would be my goal. With the purpose in mind, that if some one from one county needs to go to another county to work, that they can just fit right in. In order to achieve standardized SpNS s on a state-wide basis, ev ery county program would have to make some type of adjustment, but some counties are locked into their program and are resistant to change. Most all of the elites interviewed said that they were worried that the funding for SpNPs and SpNSs would dry up and like so many other government programs collapse, because of apathy. Elite 4 t hought private companies must get more involved, to prepare for and respond to local disasters. Theyre also affected and they cant just take. They work here, they make their money here, and they need to contribute just like everybody else. Individuals will donate their time. Companies need to donate their money. They are part of the community and they should help fund things. Another issue that several elites t hought must be addressed nation-wide, in the future, was that communities will have to accommodate an aging population. With a rapidly aging population, there will be more people living in the community, who will have special needs. According to Elite 10, housing in ALFs will be a major issue, as few facilities are being built fo r middleand low-income residents. When

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277 asked why nursing homes and ALFs were allo wed to be built in flood zones, Elite 10 replied, Is that not nuts ? Even though all the nursing homes and ALFs are required to have evacuation plans, Elite 10 noted that they all contract with the same ambulance companies to assist in their evacuation, as does the county. However the county has the power to requisition the ambulances, leaving the ALFs and nursing home in a difficult situation. In the 1970s and 1980s church groups built ALFs downtown for low-income residents downtown, where there was access to transportation, medical facilities, and shopping. They didnt think well if I build a 15 story building and Im right on Tampa Bay there is a good chance that it will be seriously damaged. And how in the heck do you get people out, who dont have the vehicles. Maybe if more bu ilder, were thinking of that. After being interviewed, several of t he elites commented that the questions asked, were thought provoking. According to Elite 5, As you are asking me questions it makes me think, okay have I really checked on this area?

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278 CHAPTER V: DISCUSSION Introduction Following is a discussion of the findings from this study, of the social construction of a Special Needs Program in Hillsborough County, Florida. The chapter presents the researchers interpre tation of the findings, as presented in the previous chapter, in relation to the rele vant literature and is divided into five sections: study summary, overview of methodology, main findings concerning research question one, main findings c oncerning research question two, main findings regarding research question three. Purpose of the Study The purpose of this exploratory study was, to understand how Hillsborough County, FL constructed its SpNP, to pr otect the local special needs population during a hurricane. Of particular intere st was: 1) how community stakeholders perceived the need for a SpNP; 2) what SpNP clients knew about the program; and 3) the social influence on the decision by SpNP clients whether to evacuate or shelter-in-place.

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279 The destruction of coastal communities, by tropical cyclones, is a worldwide public health problem. Of all the coasta l areas in North Am erica, the most vulnerable is Florida, exposed to the destructive forces of hurricanes from both the Atlantic Ocean and Gulf of Mexico. Flor ida also has the added dilemma, of having a large disabled and elderly population when compared to other states, many of who live in flood zones. According the hurricane expert for t he weather channel, Dr. Lyons, the six American cities most vulnerable to hurricanes are Long Island, Wilmington, Galveston, New Orleans, Miami, and Ta mpa (The Weather Channel, 2007). Of the six cities Tampa, located in Hillsborough C ounty, is particularly vulnerable to storm surge and associated flooding, due to the water level of the Gulf of Mexico being very shallow leading to the mouth of Ta mpa Bay. Because of shallow waters, a hurricane producing a 17-foot water surge in Miami would create a 30-foot surge in Tampa, with 15-foot waves at the top of t he surge. In a wors t-case scenario, the City of Tampa would be covered by 28 foot of water, topped with 15-20 foot waves. Past evacuations have revealed that many disabled, ill, and elderly individuals are unable to evacuate them selves, without outside assistance. Consequently, there is a need for local emergency management agencies to integrate the needs of the vu lnerable population into regional emergency plans, to diminish the adverse impacts of a hu rricane on the comm unity. Hillsborough County started its SpNP in 1985, after exper iencing difficulties in sheltering its special needs population, dur ing the three-day evacuation for Hurricane Elena.

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280 Emergency planners in Hillsborough County expend a lot of energy, in the effort to get residents with special needs, to enroll in the SpNP. At the same time, they encourage people to develop plans to l eave the area or stay with friends in the event of a hurricane evacuation, rather than seek refuge in a pu blic shelter. In November of 2007, there were 3,951 people, enrolled in the SpNP. Emergency management estimated there are at l east another 1,000 people living in the community, who should be registered, but are not. To accommodate the approximately 4,000 people registered in the program, the county has three SpNSs, with space for 2,500 people. In the SpNS there are 600 medical cots, which are adjustable and able to support a person, weighing 250-300 pounds. The SpNP has 38 children assigned to Shriners Hospital, 353 people to one of six hospitals, 1,510 people to one of 12 ARC shelters, and 2,137 people registered to one of three Sp NSs, 506 of whom are dialysi s patients. According to a representative of Network 7, a national dialysis agency formed in 2005 after Hurricane Katrina, there are approximately another 1, 900 dialysis patients in Hillsborough not registered in the program. This was a problem, because after a disaster these people need to be found quickl y, because being without dialysis for 3 or 4 days could result in illness or death. Another problem wa s that it has been estimated, that only 10 of the 19 dialysis centers in the county would be able to provide services, after a Category 4 Hurri cane and most of these would only have enough fuel to operate their generators for 24 hours. The minimum number of people, requir ed to staff a SpNS, during each 12hour shift is 32. In addition, to the medi cal staff, at least 10 extra people are

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281 necessary such as facility maintenance, a radio operator, food services personnel and security personnel. Currently, DOH supp lies approximately 50 nurses, to staff the three SpNSs. In the past, SpNS support staff came from Hospice, County Aging Services (representing the DOEA), a Advanced Life Support Ambulance team from either Hills borough County or Tampa Fire and Rescue Department, volunteers from the USF Co llege of Public Health, and caregivers accompanying evacuees. Overview of Methodology Designed to help the researcher develop a comprehensive understanding of the community, values that went into the development of the SpNP this study, only focused on the evacuation for hurricanes. As the study of SpNPs was an unexplored subject matter, an exploratory approach, using qualitative methods was utilized. Using social constructionism as the theoretical framework and following a qualitative research approached based on Grounded Theory, this study examined the SpNP from two points of view; that of the program stakeholders and that of those people registered to receiv e services from the program. To understand how community st akeholders in Hillsborough County perceived the meaning of community res ponsibility for indivi duals with special needs in the event of a hurricane evacuat ion, three focus groups were conducted; one each on May 9, June 7 and June 28 of 2006. Participants for these focus groups were recruited using a randomized cluster sampling technique, to help ensure that the different types of agencies in the SpNP Planning Committee, were

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282 represented. Each focus group was approx imately 90 minutes in length and had eight participants. To understand what SpNP clients knew about the program and the social influence on their decision to evacuate or shelter-in-place, a total of 30 semistructured interviews were conducted, between May 5 and September 4 of 2006. Each interview was between 45 and 65 minutes in length and all but two interviews were conducted at the participants hom e. The other two interviews were conducted at a local coffee house. Data fr om SpNP clients were collected in three waves of 10 participants each, with each wave occurring a fter a focus group. This allowed new concepts identifi ed by the SpNP clients, to be presented to the focus groups and vise versa. Once the three stakeholder focus groups and the 30 SpNP interviews had been conducted, 10 in-depth, semi-struc tured interviews were conducted with elites in the community. Elites were senior executives of organizations, which were members of the SpNP Planning Comm ittee. Each interview was between 55 and 75 minutes duration and occurred in the participants office. Final evaluation included material fr om: 1) stakeholder focus groups; 2) SpNP client in-depth, semi-s tructured interviews; 3) elite in-depth, semi-structured interviews; 4) researcher observations and memos; and 5) a review of relevant records, reports and professional literature and media materials.

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283 Main Findings: Stakeholders Perception of Need for SpNP Focus groups with stakeholders and interviews with elites were conducted, to understand how members of the SpNP Planning Committee perceived the meaning of community responsibility for individuals with special medical needs, during evacuation for a hurricane. Selectiv e coding of the independent categories integrated and refined the connections bet ween categories, until only four main themes remained: disaster experience, coalition building, collective moral responsibility, and barriers to SpNP devel opment. The central explanatory theme of the data was determined to be collectiv e moral responsibility, which directly affected the development of the SpNP coalition and how people and institutions experience disasters. Disaster Experience The first theme affected the stakeholde rs perceptions of the SpNP, was disaster experience. Disaster experi ence was found to have two sub-themes, which were directly related to each other: personal disaster experience and institutional disaster experience. There were three levels of disast er experience: prim ary, secondary and tertiary. The primary level was characteri zed by direct personal experience, where the person has actually lived through a disa ster. One of the major problems, in Hillsborough County was that there are few residents, with any primary experience with a hurricane. A person can experienc e a secondary disaster experience in one of two ways: indirectly through conver sations with family and friends or by

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284 participating in recovery assistance. C onversations with family and friends, can give insight into the mental trauma, caus ed by a hurricane. Participating in helping a community through the recovery period, especially the early stages, offers a sense of hurricanes destructive effects without having a prim ary experience. Tertiary disaster experiences were deliv ered worldwide, through visual images, provided by the media. According to a NFP participant, in one of the focus groups, his agency became directly involved with the SpNP after Hurricane Katrina. Many of their clients, who witnessed the events that unfolded in New Orleans became fearful, that because of their disabili ty they could possible suffer the same consequences, should a hurricane strike Hillsborough County. This tertiary exposure affected many agencies associ ated with the SpNP, by giving their personnel a visual of what they would face, if Hillsborough County was affected by a major hurricane. Several focus group participants expressed that because of the active 2004 and 2005 hurricane seasons, there had been a change in attitudes for many of their staff, who were becoming more involved in the training process. Institutional disaster experience co mes from two main sources: direct experiences of personnel and through agen cy emergency plans designed to direct actions of personnel during a disaster Since Hillsboro ugh County has not been directly affected by a hurricane, since t he Tarpon Springs Hurricane in 1921, it was unlikely that any agency has personnel with direct memory of that storm. Consequently, there was no primary source of instit utional memory of the devastating effects of a hurricane, exc ept that brought in by employees who experienced hurricanes while livi ng or working elsewhere.

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285 During the 2004 and 2005 hurricane seas ons many of the agencies in Hillsborough County associated wit h the SpNP sent staff to communities in Florida, Mississippi, and Louisiana to help with recovery efforts. All agencies involved with recovery efforts in other communities, expr essed that many valuable lessons were brought back, particularly concerning leadersh ip. The result of this secondary exposure to disasters provided many lessons learned, allowing agencies to readdress emergency plans to ensure that mistakes made by other communities, were not repeated here. A common co mment, when comparing agencies in Hillsborough County to similar agencies in other counties, was that local plans had been tested and strengthened, because of the th ree false evacuations in 2004 and experiences with helping other counties affected by the 2004 and 2005 hurricanes. This secondary exposure came from having a much larger workforce than many counties, allowing Hillsborough County to provide personnel to other communities. Several of the stakeholders and elites, thought that since the 2004 hurricane season, more agencies had gotten serious about the SpNP and started coordinating their plans wit h other agencies in the program. Since 2004 there has been an increase in the number of agencies, especially NFPs, attending SpNP meetings. This larger membership re sulted in a more coordinated approach to planning, rather than a scattering of unconnected groups in the community. Several forms of tertiary disaster experience influenced institutions: media coverage, training, and false evacuations. First, the media coverage of the 2004 and 2005 hurricanes highlighting the social and medical problems, associated with the hurricanes. This media coverage was seen by Hillsborough County residents,

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286 who then contacted agencies an d government officials, expressing concerns that they might experience the same tribulations should a hurricane strike this area. As a result, many agencies were forced to review their plans, to ensure clients continued to receive services in a disaster situation. Coalition Building A second theme affecting stakeholder perceptions of the need for a SpNP was coalition building, to address the iss ue of caring for and sheltering people with special needs, during an hurricane evacuat ion. The coalition process had three main sub-themes: stakeholders, leader ship, and barriers. The sub-theme stakeholders, was defined by nine categories: defining special needs, diversity, planning, education, registration, tr ansportation, staffing SpNSs, benefits and agency continuation of operation plan. Ethical decisions are fundamental to shaping any communitys disaster plan, when making decisions, as to which re sidents to protect and to what degree of safety (Phillips & Knebel, 2007). The first step in developing a SpNP was for stakeholders, to come to an agreement, as to the definition of special needs. In the early stages of the development of the SpNP, each agency promoted their specific meanings, when using the term speci al needs. Over the years, as these stakeholders met and developed the SpNP they came to general agreement as to who in the community should be consi dered as possessing special needs, which must be addressed during county evacuation. Using this definition of special needs, decisions where made as to who was to receive services and what those

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287 services would be. The definition of special needs and the services provided though the SpNP, has changed over the years, as new stakeholders became members and the needs of the p eople they represented addressed. Hillsborough Countys capital seat is the City of Tampa, a la rge metropolitan area. Stakeholders expressed that wit h the large population comes more funding and key players. Due to population dens ity, there was a diverse group of agencies, involved with caring for people with special needs. Stakeholders felt that because of the existence of a shipping port, an international airport, a large military base, a number of them e parks, and various spor ting events many county agencies have the benefit of experience in working together to manage large events. Membership in the SpNP included a very diverse group of government agencies, not-for-profits, and private busines ses. Government was represented at the state, county, and city levels. These government agencies provide many services: transportation, fire and rescue, pol ice, animal services, social services, medical services, mental health services public health services, communications, education, and emergency management. Ther e were a number of NFPs in the SpNP, including the United Way, ARC, Salvation Army, and many groups representing people with disabilities. Seve ral private businesses were represented that provide services to the SpNP, such as: communication, electricity, linen, oxygen, and transportation. As new agencies were integrated into the SpNP, they were offered assistance in rewriting their di saster plan, so that it coincided with the

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288 countys plan. Integrating each agencies di saster plan in the countys plan, helped insure that in an emergency, services will not be duplicated. According to several of the elites, one of the reasons Hillsborough Countys SpNP was so strong, was because the c ounty was heavily into providing social services. This not only provided profe ssional personnel, but t he expertise needed to understand the issues associated, with meeting the needs of a special needs population. Also according to several elites, Hillsborough was the only county in Florida, which reimburs ed medical personnel for working in the SpNSs or reimbursed ALFs and nursing homes for sheltering clients. A disaster plan is worthless, if it sets on a desk and never tested to help expose weaknesses. Every year Hillsborough County conducts a tabletop hurricane evacuation exercise, where t he SpNSs are made operational. The hurricane evacuation plan and SpNP also ge ts exercised occasionally, when there were evacuations for an approaching hurricane. In 2004, evacuations were ordered and SpNSs were opened, for three different hurricanes. After every exercise and evacuation a hot wash wa s conducted, were SpNP agencies bluntly discussed, what went right and what went wrong during activation of the SpNP. Done in a professional manner, without poi nting fingers or placing blame, an environment was created, wher e people felt free to pres ent and address problems. This honest exchange of information hel ped people buy into the program, as agencies realized that as a team, every one needed to work together to develop a better program.

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289 According to many stakeholders and elites, educational outreach has been a major focus, of the SpNP. Education is the process of, communicating the risk of being affected by and how to prepare for hurricanes. Several agencies represented, stated that t heir focus was educating people to develop alternative plans and evacuate to public shelters, only if absolutely necessary. The belief was that education, empowered people, to take personal responsibility. One of the biggest concerns, express ed by many stakeholders and elites was that the message was not reaching peop le, who did not speak English. This was especially true, when addressing the migrant population where people, many undocumented, were fearful of what the government would do with the information. Hidden, this population will not come forward, due to fear of being deported. Recently, there had been an increase in e fforts to get info rmation out through respected sources such as the church, Hispanic businesses, and Spanish media. Many stakeholders believed it was not t heir efforts, of educational outreach or information access that was the problem; rather it came down to people having the motivation to act. This point of view was supported, in that whenever a hurricane was predicted to strike Hillsborough County, SpNP registration forms suddenly pour in and agencies were inundated with phone calls about the program. It was felt that when it came to preparing and develop ing emergency plans, people with special needs were no different than the general population, in that they also waited until the last minute. Everyone in the group seemed frustrated, by

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290 the fact that no matter how hard they tried to get the word out, many people with special needs refused to register or prepare pers onal evacuation plans. All of the stakeholders repr esenting NFPs that provided services to people with disabilities, agreed that motivation was an issue but that was also true for the general population, as a whole. The issue was raised, that people on disability get approximately 500 dollars a month from Soci al Security and another 10 dollars in food stamps. On this limited income rent, electric, telephone, and other living expenses must be covered. Consequent ly, everything must be rationed and there was no spare money to purchase emergency supp lies, for future use. Also due to this low-income, many people with disabilitie s living on Social Secu rity, do not have cars and are dependent on either family or public bus systems for transportation. While the State of Florida mandates t hat every county, maintain a special needs registry, it is a volunt ary. Every year in March, each person in the SpNP database will be sent a new registration form accompanied by a letter explaining the need to reregister. The new application must be returned by a specific date or that individual will be removed from the database. The purpose of a yearly registration was to update the SpNP client s condition, an advanced triage, which will expedite the SpNS regi stration process during an evacuation. This yearly registration also allowed DO H to predetermine, how much oxygen was needed at the shelter and estimate how to prepare to accommodate the special needs of the population, evacuating to the SpNSs. Once registered, when arriving at the SpNS, the SpNP client only has to be asked to identify any recent changes to their

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291 condition. A yearly registration, also allows the removal of any individual, no longer requiring the programs services. There was also the issue, that many people cannot transport themselves, during an evacuation. Transportation falls into two categories: those without cars and those with mobility limitations. The 2000 census, estimated over 14,000 residents of Hillsborough County, live in ev acuation zones without vehicles. To deal with this, HartLine and volunteer dr ivers, will run over 24 routes with 200 buses. For those individuals who ar e bed-bound or wheelchair-bound and cannot get to shelters, the county will provide appropriate transportation, such as vans or ambulances, to assist these individuals. While the core of the DO H staff in Hillsborough County was assigned to the three SpNSs, there still will not be enough space to shelter all the special needs evacuees, for a category four or five hu rricane evacuation. A fourth SpNS has been identified, but the county cannot provide the appropriate staff, to open it. In order to help with the recruitment of medical personnel to staff the SpNS, all shelter workers are considered de facto county employees, so that they can be covered by the countys liabi lity insurance and Workers Compensation Insurance. When asked what the biggest changes we re over the past couple of years in the SpNP, many of the elites being in terview referred to House Bill 7121, which had recently been passed by Floridas l egislation. Bill 7121 mandated, that agencies having clients evacuated to a SpNS, must provide staff or some sort of support to local emergency management. This includes both government agencies (DOE, DOEA, CMS, PWD, AHCA, DOH, VA, and Emergency

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292 Management) and public agencies/businesses (HHAs, Home Medical Equipment Agencies, and Nurse Registries), which pr ovided services paid for by Floridas Medicaid system. Legislation was also passed requiring HHAs, FAHAs, ALFs, and nursing homes, to continue to provide hea lth care services during an emergency, such as an evacuation for a hurricane. At first, this legislat ion was designed so that it if a person receiving care from one of these agencies evacuated to a shelter, the agency would be required to send staff to provide the required care. As with much of todays legislation, interest groups with powerful lobbyists were able to change the language. So while these agencies are required to continue providing care, after an emergency, there was no guidance as to how this is to be accomplished. Representatives from the HHAs expre ssed concern, about legal liability issues. Many expressed concern, that their agency could be sued, if something happened. The five nurses and the HHA owner all expressed fears of being sued, for not knowing another agencys patient plan of ca re. They seem to have either forgot or did not know that every HHA agency had received email and letters from the EOC, informing them that every nurse or nurses aide working in a SpNS, would be considered a county employ ee and would be covered by county insurance. Another issue, with recent emer gency management legislation was how people with mental health issues, were to be included in SpNSs. Special interest groups wanted everyone with mental health issues, no matter the severity, be placed in SpNS. Luckily, verbiage of the legislation was again vague enough that

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293 local communities could make judgment calls, when admitting people with mental health issues into to a SpNS. It shoul d be noted, that ther e are many people with mental health issues, who with proper support would do very well in public shelters. When asked why it took legislation, to get some of the agencies to participate in the SpNP, some of the stak eholders felt that it was a funding issue It was felt, that many state agencies were al ready overworked and evacuation duties were mandated, without additional funding fo r new staff. Other stakeholders felt, that what it came down to was the agencies commitment to the community and that manpower and funding was only used as an excuse, because when staff was working in SpNSs, they were released from normal duties. It was believed, that in a disaster, an agencies commitment to t he community changed and it was the responsibility of the agency to address and plan for that change. For example, in the past CMSs only role in county SpNPs, was the registration of their c lients. Emergen cy management and DOH felt that CMS should also send staff to the SpNSs, to ens ure that their clients received the proper care, which DOH nurses were not trained to provide. House Bill 7121, made CMS directly responsible for providing care for t heir clients, in the SpNSs. According to several stakeholders and elites, the bill wa s passed at the tail end of the legislative session and though language had been banter ed about for months, the sponsor did not take all the recommendations from the DOH or CMS agencies. With the new legislation, employees of many agencies are now required work emergencies and failing to show up during an emergency, face termination

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294 Several of the stakeholders and elites, sugges ted that there was a lot of resistance to change within the system, from long-term staff. Until the SpNSs open for another evacuation, there will be no way of knowing, who will show up to work. In every focus group and in every elite interview there was a sense of pride in being a part of the SpNP, which was felt by most to be the best program in the state, if not the country. Many gover nment agencies and NFPs reported that their emergency plans, were considered state or even national models, because of their working relationship with the EOC and other SpNP agencies. Several stakeholders and elites stat ed that because of their pas t experiences, they were called upon to provide trai ning, to other counties. This suggested that professionals in other communities re spected the work done, in Hillsborough County. When asked if agencies had developed internal detailed plans, to respond to a hurricane, most stakeholders replied that they had. Many agencies had an employee phone tree, to contact workers and informed them if the hurricane plan was implemented. All governmental agencie s, expect for one, reported that they had worked with the EOC in the development of their hurricane plans. Many of the NFPs, commented they also worked with the EOC, in plan development. A couple of the NFPs, expressed that they had no plan to protect equipment and vital office records or for reopening afte r the disaster. Several of the agencies thought that, while their response plan was well developed, it did not deal very well with what to do with employees after the storm. This brought up the issue, as to how these agencies, will continue providing services after a hurricane.

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295 A second sub-theme, found under coalit ion building, was leadership. EOC leadership, played a large role in the develop ment of the SpNP, especially when it come to networking with the agencies and trying to get all the players involved to discuss their roles during an evacuation. Leadership was found to have five categories: consistency, collaboration, communication, flexibility, and vision. Several elites thought Hillsboroughs SpNP, was currently the states strongest, because it looked at the big picture. One example given was that Hillsborough provides transportation, not only to SpNS and hospitals, but has developed plans to get persons with disabilities to ARC shelters. Hillsborough also has made arrangements to provide transporta tion to ARC shelters, to those people in the general public, who have no access to private transportation. A second example was the efforts made by Hillsborou gh County, to allow evacuees to bring their pets to shelters, even going so far as to get public transportation to take pets. Several of the elites interviewed thought that Hillsboroug h had the strongest SpNP, because they held several meetings each year and involve every agency or business, they could get to attend. It was ma de clear, that every representative at the meeting, was given the opportunity to express their opinion and suggestions are discussed and acted on. Because of this openness and cooperation everyone on the SpNP Planning Committee, has a sense of ownership of the program. Several of the elites claimed, that so me of the other counties had few meetings and generally excluded other agencies, from the planning process. When asked how Hillsborough developed it plan over the years, it was apparent there had been a cultur e of cooperation in the county, with the EOC.

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296 When new issues concerning the SpNP come up, the EOC made an effort to contact the appropriate agency, to deal with the problem and worked to get them to join the SpNP Planning Committee. This outreach by the EOC, over the years, brought many agencies into the planning process. Hillsborough was able to purchase s upplies for the SpNSs, by using Homeland Security grant money earmark ed for developing programs, responding to terrorism attacks. While some count ies placed all their emphasis on terrorism, Hillsborough County purchases equipment that could be used not only for terrorist attacks, but for hurricane evacuation It was felt by many, that consist ency of EOC staff over the past decade was one of the reasons the program, was so well developed. By maintaining the same leadership, over a period of 13-year period, stakeholders in the SpNP knew who they were dealing with and where they were coming from. A stakeholder expressed, the belief that Hillsborough County was in the forefront of dealing with disasters and emergencies, because the EO C staff were aware of the needs and did whatever they could to meet thos e needs. Several stakeholders agreed with this statement and expressed the be lief, that Hillsborough County had some forward thinking people, in emergency planning. Several of the stakeholders and elites felt that Hillsboroughs SpNP was probably the best in the nation, because of a core group of people, who were very good at what they did and wher e not afraid to speak their minds. It was believed, this freedom to speak freely without fear of losing their jobs, allowed EOC staff to be effective advocates. This was attr ibuted to good leadership, at the EOC.

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297 Several of the stakeholders and elites, expressed that the director of the Hillsborough EOC, was well tr ained and ahead of his time. Over the years, the EOC quietly developed a plan and exercised it yearly, with few resources other than the commitment of stak eholders in the SpNP Planni ng Committee. According to one stakeholder consistency, collaboratio n, communication, flexibility and vision were only possible if workers receive t he proper support from management. This atmosphere of openness, by the EOC leadership, permeated the staff. When asked what their agencies relations hip was with the EOC, most every stakeholder agreed, that there was a sense of collaboration in the SpNP. Several of the stakeholders, who worked with other county EOCs in Florida, commented that working relationships varied great ly between counties. Some agencies complained, in some counties the EOCs excluded them, from the planning process. Yet many stakeholders added that since the 2004 and 2005 hurricane seasons, most EOCs had become more response, realizing the need to collaborate and coordinat e with other agencies. Of the 10 elites interviewed, four wo rked for agencies, with jurisdiction over several counties. All four of these agenc ies, were represented at the Hillsborough SpNP Planning Committee meetings. When asked if they attended SpNP meetings in other counties, only two did so. One of the elites expressed, that at least one county wanted their agency to send a representative to their SpNP Planning Committee meeting, but since the agency headquarters was in Hillsborough, it is not realisti c because of driving distance.

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298 When asked what could be done to im prove the SpNP, one stakeholder thought that communications could be im proved between agencies, especially with agencies that had recently joined the Plan ning Committee. The focus groups themselves become objects of change, as several participants who had only seen each other across the conference r oom, were now exchanging ideas. A couple of the elites, expressed conc erns about using the term special needs, when talking about the population being served. Several of the stakeholders, complained that the media wo uld focus on what to bring to a SpNS, but did not explain what constituted being identified as having special needs. One stakeholder explained that part of the c onfusion existed, because the DOH had yet to write, a definition of what constituted a special ne eds client. Without a statewide definition of special needs each county was left on it own to develop their own definition, resulting in confusi on as agencies moved between counties. The term special needs, is widely used within disaster services and the emergency management world. It generally re fers to an extremely broad group of people with disabilities, people with serious mental illness, minority groups, the non-English speaking, children, and the elderly (CDC, 2007). Since there was an 80% chance, everyone will experience a temporary or perm anent disability at some point in their lives; this definiti on of special needs could cover more than 50% of Americas population; renderi ng the term meaningless (Kailes, 2002). Some stakeholders, suggested that medical needs shelter may be a more useful term, as most people with disabilities do not require a medical shelter.

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299 Another language issue became apparent, when stakeholders and elites referred to people registered for the SpNP, in their interviews. Those registered in the SpNP are referred to either as pati ents, clients, or people depending on their relationship with the agency speaking about them. For example, in the focus group all the HHA representatives, referred to this population as patients. In other focus groups, those agencies providing health care services also tended to refer to this population, as patients. Meanwhile, the two NFP who provide information and referral services to this population, refe rred to them as c lients. Two agencies having no service-providing relationship, with this population, called them people. One stakeholder commented t hat over the past couple of years they learned each hurricane presented different problems depending on its strength, amount of rain, and whether the area affected was urban or rural. Accordingly, reactions to hurricanes have varied and they learned someth ing different, from every storm. It was hoped, that in responding to future storms, the agency remains flexible enough to work issues out as they arise. One NFP representative admi tted that part of their problem was inflexibility, when interacting with volunteers. For exam ple, in many cases the volunteer must go through three days of cla sses, before being deployed. This was a problem, as many people show up, wanting to help imme diately. When told it took three days of training, they volunt eer with another NFP, who will put them to work immediately. New training programs we re now being developed, so volunteers could be ready to go, within a four or five-hour period.

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300 The third and final sub-theme to the development of the SpNP, were factors that have been barriers, to the SpNPs success. Seven categories of barriers were identified: legislati on, identifying targeted popul ation, educating targeted population, staffing of SpNS s, training, resistance to change, and power struggles. During the 2004 and 2005 Hurricane Seasons, eight hurricanes struck Florida and many residents with special needs suffered, because their county did not have provisions in the emergency plan to provide for their needs. While past legislation, required co unty emergency management agencies to develop a SpNP and keep a list of people in the community with special needs, there were no guidelines on how to maintain the list or how to provide for the special needs population. Consequently, the SpNPs dev eloped by counties ranged from just keeping applications in a desk drawer, to the development of comprehensive emergency evacuation plans and identification of SpNSs. After Hurricane Andrew, a Special Needs Task Force released a 1996 report identifying the vulner ability of Floridians with special needs, as a major concern. Recommendations included: developing a definition of people with special needs and coordinati ng and strengthening the regist ration process (DOEA, 1996). Yet 10 years later, the state st ill has not developed a definition of people with special needs, nor has it developed a coordinated registration process. None of the agencies, in the SpNP had any idea how big the special needs population, was in Hillsborough County. It was felt, many people did not register for the SpNP, because they had a both a plan and people to take care of them. The thought was people with special needs, should have an evacuation plan and

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301 only register for the SpNSs as a shelter of last resort, when the primary plan had complications, such as, the car being in the shop. At least if a person was registered, they were known to the emergency management system, in case of some other form of emergency evacuation. There was a sense, that there had been an enormous effort to get the public informed, so that they could develop appropriate emergency plans Many stakeholders, felt that no matter what outreach was done, there would always be some people who did not get the information and others who woul d refuse to register. It was thought many people, did not trust the government with personal information, afraid that they mi ght lose control of their lives In American society, most people are leery, when someone knocks on the door and says, Hi. I am from the government and here to help you. There was also a feeling many people, did not believe they would ev er be affected by a disast er, referred to as the ostrich syndrome . Several stakeholders and elites r eported that many people lived in denial of the situation, because they belie ve that when a disaster occurs, someone from the government would be there to take care of them. One of the problems, with providing education was the need to ensure that the information provided, targeted the physi cal abilities of the audi ence. It must be remembered, that not everyone was young and healthy and could accomplish the same tasks. A second problem with providing education, was many people assumed because the information was on the Internet, everyone has access to it. It must be remembered, that many elder ly and low-income people do not have access to, much less, know how to operate a computer.

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302 Each county was required to have SpNSs, but some of the rural counties do not have buildings meeting the construction codes, to serve as shelters. These counties have developed regiona l agreements, to send their SpNP clients, to other counties. The fact, that some counties sheltered t heir SpNP clients with the general population, confus ed residents of those count ies that separated the populations. As a result, some people are afraid of going to shelters, where they might be exposed to undesirable elements. According to a survey of SpNS wo rkers, during the 2004 Hurricane Season conducted by the DOH, approximately 61 per cent were uncertain about the safety of family and loved ones (Florida DOH, 2004). Many of the stakeholders felt, it was part of their job to ma ke sure that their family was cared for, during an evacuation. Several stakeholders, most ly HHA representatives, expressed the concern that emergency planners did not pr ovide supervision, for the children of SpNS workers. It was felt that pl ans needed to be developed, to take care of workers children, while parents were working during an evacuation of the community. The issue was raised, that the majority of the staff in SpNS were women and often they were the head of households, with children. This is especially a problem, for agencies that send nurses, to help staff the SpNS. What do you do if they refuse to go? An agency threatening to fire a nurse has little effect, when both parties know that because of the extreme, nation-wide shortage of nurses there are plenty of agencies that would be more than happy to provide a job.

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303 There was a problem in staffing SpNSs, in that public health nurses are not currently trained to provide health care, to patients with chronic conditions. Their training was in preventing diseases, in t he community. This limited the ability of the public health nurses, to respond to m any medical emergencie s, in the SpNSs. Another training problem i dentified, was the training of HHA personnel, as to the specifics of the SpNP. It was apparent, that many of the HHA representatives interview, had no idea as to the role of t he ARC during an evacuati on. Of the eight HHA representatives, only one knew the difference, between a SpNS and an ARC shelter. This is a serious problem as, by law, the HHAs are required to register their patients for the SpNP who qualify and if not properly informed as to the specifics of the program, how can they be expected to educate others? Another weakness of the SpNP, were power issues between the county government and a city government in Hillsbo rough County. It seems a waste of money, for a city to deve lop a separate emergency agency, when the county was required by law, to maintain an offi ce of emergency management. There was some feeling that this duplication of agencies, created problems when procedures differ, causing a struggle for control of operations within the city. Collective Moral Responsibility The third and central theme, as perceived by stakeholders, was collective moral responsibility. Collective moral responsibility was found to have three subthemes: cultural expectations, per sonal responsibility, and government responsibility.

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304 As part of the SpNP, there were plans to transportation many people with disabilities, who required help with personal care to public shelters. While public shelters were required to meet ce rtain ADA standards such as handicapped accessible restrooms, the shelters will not have the properly trained staff (volunteers) to provide assistance to people, needing help with personal care. Much concern was expressed by the HHA s for patients, in the event of a large evacuation, because of shortages of s pecial beds in the shelters. They also felt, as health care workers they were pr esented with a moral dilemma, as to what do with patients who dont qualif y for the program and would not be able to function in a public shelter without personal assistance. According to some of the stakehol ders, there have been cases where a spouse would transport a client to a SpNS drop them off at the front door, alone with no caregiver. The spouse returned home to care for pet s and set out the storm in the comfort of their homes. There was general agreement among the six HHA stakeholders, who were either managers or owners that they would be working, but felt they could not require employees to work for a variety of reasons. The principal reason being, there were no plans to provide adequate care for the children, of workers in the SpNP. Stakeholders also considered pets, to be a major issue. They knew people whose pets were the one consistent thi ng in their lives and some would never evacuate, unless they could br ing their pets. Believing that it came down to the question, as to whose life is most va lued by the community humans or pets;

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305 several stakeholders expressed that emergency management, should focus on humans. According to many stakeholders people decide whether or not to have pets and consequently during a disaster they should be responsible for their pets, not the government. Even t hough pets are accepted at the SpNSs, there was a limit to the number that c ould be sheltered. Several stakeholders and elites blame the pet situation on the media, who shaped public sentiment, by going out filming stranded animals and children crying for lost pets. The media made it appear that the government was responsible for the re scue, care, and reuni on with pet owners. According to the stakeholders and e lites, the media should have used the opportunity to educate the public by expl aining that this happened, because people were irresponsible and failed to plan for the care of their pets. According to stakeholders, people should only be dependent on the government when nature delivers a surprise to a community, like a snowstorm in Florida. Many stakeholders expressed the feeling, that many Americans expect the government, to take care of everything. Many stakeholders agreed with the statement, that our so ciety wants everything to be per fect. For example, during a hurricane, the public believes that nobody s hould die and people want to be able to set in their homes with cable television an d air-conditioning. Stakeholders felt that the general public did not understand, when managing an em ergency the response will never be perfect, because of the uncertainty tied to hurricanes. Currently, the SpNP operates under a model, based on a persons medical condition. For example, anyone on oxyg en was automatically admitted into a SpNS, but modern oxygen deliv ery systems can operat e without electric ity. Under

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306 an ability-focused model, those people on oxygen who do not need medical supervision and could provide for their own ca re would be placed in public shelters. The current medical models rules and paperwork are designed to regulate the care provide to people, when everyone has different needs, requiring different plans of care. This was a major probl em, when it came to getting people an extra months supply of medication, in ca se of an emergency. The insurance companies, resist paying for extra medications and many people cannot afford to pay out-of-pocket for back-up medications. Stakeholders made it clear, people under Medicaid, would not have access to ex tra medication. This was something, many felt should be addressed, by state legi slation. There was also the problem of pharmacies, having the needed supplies on hand, to allow them to give everyone an extra month supply of medication. Even if the pharmacies had the medication on hand would, the pharmacists have the time to dispense medications to everyone, in the short period before people have to evacuate? Several stakeholders expressed, that government at all levels was partially to blame, due to the notion that it no longer had a social responsibility for citizens. For a politician, mitigation is spending money, on something t hat may not happen. Since politicians are only elected for four years, mitigation effo rts such as buying cots and supplies for SpNSs may be considered a waste of money, if not used. The issue was also raised, that o ften legislators do not understand the issues, surrounding the policy they build. For example, the HHA stakeholders felt that policy makers did not understand that the majority of t heir workforce was

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307 contracted and many worked for four or five different agenc ies, at any given time. As contractors, they had the right to refu se to take a case, or work at a SpNS. Americas immigration laws were also an issue, as in Floridas rural areas there exist a large population of nondocumented Spanish-speakers, who do not want to be identified. Many of these families have children bor n in the U.S., who have access to social services, but thes e services were not available to the undocumented adults. Often these childr en act as their parents translators, without knowing their parents, we re in the country illegally. As a result of states, not addressing i ssues of sheltering people with special needs, the federal government has begun to issue mandates. The U.S. Department of Justice (DOJ) has rel eased regulations, on what emergency shelters must do, to be in compliance with the ADA of 1990 (DOJ, 2007a). The DOJ developed a checklist for selecting emer gency shelters. In its ADA Guide for Local Governments, the DOJ set out requirements that local emergency management offices must meet: 1) solicit and incorporate input from people with different types of disabilities regarding a phases of emergency planning; 2) develop ways to inform people who are deaf or hard of hearing of an impending disaster; 3) develop plans for evacuating people wit h disabilities including providing appropriate transportation; 4) make sure shelters are ADA compliant such as accommodating service animals, refriger ation for medications, and accessible communication for people who are blind, deaf, hard of hearing or have speech disabilities; and 5) identify temporary acce ssible housing if people can return home after a disaster (DOJ, 2007b).

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308 It was expressed that with the current attention to SpNSs, there was a lot of funding available and progress was being made, but it may not continue. Noting that the SpNP was a governmental program, many stakeholders worried that the current funding commitment ma y not continue, into the future. According to one stakeholder, the same fundi ng pattern was currently going on, with the pandemic flu scare. There was a lot of money bei ng spent, but those who receive the money were given very short time periods to accomplish their work, resulting in poor planning and management. Money was being wasted, because many different agencies were receiving money and with no coordination, efforts were being duplicated. When asked why the changes were being made now and not years ago after Hurricane Andrew, one of the stakeholders replied, that it takes a big event to occur before the government responds The stakeholder added, that the government did respond after Hurricane Andrew but that the funding quickly dried up, due to years of mild hurricane seasons. Consequently, pr ograms started after Hurricane Andrew, disappeared after a few years. Barriers to SpNP Development Several stakeholders raised the issue that HHAs have very strong lobbyists and anytime the legislation tries to pl ace more stringent requirements on the industry, it gets removed. Many agencies across the state, tried to get legislation passed requiring HHAs to provide staffing to SpNSs, that their clients use. HHA lobbyists were able to convince legislators to change the language of the bill, so it

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309 did not specifically state, st aff must be sent to SpNSs. Even so, the new legislation requires HHAs to describe how they will en sure for the continued care of their patients during a disaster, wherever they shelter in the community. A stakeholder made it clear that in the social service field, there were people that really cared about thei r jobs, but because of the low pay and excessive work they could quickly burn out. When someth ing new is added to their duties, like staffing the SpNSs, they will go along with c hange as much as they can; but it was just one more thing for them to do, when t hey already do a little bit of everything. The stakeholder believed, there was some apathy to change and there are those who will do, as little as possible. In the past, residents of a local reti rement community, registered for the SpNP through their own system and the EOC would enter the list into the SpNP database. The DOH now wants each person, to fill out and turn in a standardized registration form, each year. The represent ative from this retirement community insists, many residents will not fill out the forms, either because they do not want to give out the information or they are afraid of being forced to evacuate. There was great resistance from the re tirement community, to this new registration process, which will only create future problems. There were also many complaints, from SpNP clients interviewed, concerning the new registration process. Many were particularly concerned, that they had reapplied months ago, but had not received notification of their acceptance into the program. They were f earful they were no longer, in the SpNP database. The problem originated, when t he DOH first took ov er the database.

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310 Due to a lack of staff at the EOC and a faulty computer program, the SpNP database was full of individuals, who no longer required the program but had not been removed from the database. To clean the database, DO H required that everyone, re-register for the program. This process invo lved, sending out over four thousand letters, asking people to reregister or be removed from the program. The volume of returned applications, overwhel med the staff assigned to evaluate if the applicant required evacuation to a SpNS, hospita l, or could stay in a public shelter. During the focus group with HHA stakehol ders, it was apparent that they were not able to identify, differences between public shelters and SpNSs. Only one of the participants knew that ARC had no part in staffing a SpNS, because she had actually been at a SpNS, several times. HHAs reported that some of their patients needed transportation to SpNSs an d wondered what arrangements, were in place. Another issue raised by the HHAs, was the tracking of the patients. Concern was expressed that individuals si gned up, may no longer be their patients and may move. They worried these individu als, were not being tracked and might fall through the cracks in an evacuati on. They thought it should be the responsibility of the SpNP, to track these people. But how can the SpNP keep track of people, when they move, unless they are informed of the move? It seemed the HHAs felt, their patients were not personally responsible for their own safety, but were the respons ibility of the government. A major issue addressed by the HHAs, was they all knew there were many people in the community, who are not rece iving assistance from some agency and a lot of them would have no clue what to do in an emergency. It was felt, the

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311 community or the state needed to identify the special nee ds population, to get an understanding of just ho w big the issue was. Many stakeholders agreed, denial was a major issue in accounting for why people did not evacuate, w hen requested or why they did not buy emergency supplies. It was felt that as a whole the SpNP did a pretty good job at getting the word out about disasters, but people pre tty much ignore it, having the mentality that it would not happen to them. Still stakeholders believed more outreach was needed, to educate people. Two types of apathy were found: personal and institutional. Many of the stakeholders believed, apathy was the result of years of hurricanes not coming close enough to Hillsborough, to caus e much damage. One stakeholder expressed, that apathy was a major iss ue with Hurricane Katrina, because of the area previous experience with Hurricane Ca mille in 1969. Many people, having survived Hurricane Camille, had a false sense of security. People living in areas, not touch by Hurricane Camille, were completely destroyed by Hurricane Katrina. For the three 2004 evacuations in Hillsborough County, 600 people evacuated to SpNSs for Hurricane Charley, 400 evacuated for Hurricane Frances and only 240 evacuated for Hurricane Jean ne. For each mandated evacuation, fewer and fewer people complied. Several stakeholders believed, in each case where an evacuation was called and the st ormed missed people began to believe, emergency management was just crying wolf. Many stakeholders also believed, becaus e of the lack of big storms hitting Florida since Hurricane Andrew in 1992, many agencies and the government

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312 developed apathy. Consequently, these agencies and the government failed to see the need, to develop emergency plans. There were still many agencies in the community, who should be involved with the SpNP but are not. HHAs still, do not provide staff to the SpNSs. Nursing home representatives, do not participate in the planning process. Great efforts have been made, to get mental health represent atives involved in providing staff to SpNS, without much result. In the pas t, the SpNP had few members, advocating for people with disabilities. There has been great improvement in participation of NFPs, representing people with disabilitie s, but they have not stepped up to help staff the SpNS. For example, one stakeholder emphasized, many in the deaf community would not evacuate to a shel ter, unless an interpreter was always available. Yet agencies that provide inte rpreters, want their contractors to be reimbursed, at a rate of 150 dollars per hour. When asked why it took so long for the disabled community to become part of the SpNP and advocate for themselves; one of the NFP stakeholders admitted that there had been a lot of apathy, but that part of the explanation was the mindset of many people with disabilities. She explained, that many people with disabilities did not want to be dependent and withdrew, not wanting to be a burden on others. One SpNP weaknesses identified by stakeholders, was that the program focused on preparedness and response activities, not on recovery. The example was given, that it has been over two y ears since Hardee County was devastated and still they had only one road in and out. Stak eholders felt that recovery plans

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313 needed to be developed, because when a community is devastated by a hurricane, everyone was affected. First responders may be helpi ng other people recover from the disaster, while having to deal with the fact, their homes had been destroyed and their families displaced. Interaction of Themes Stakeholders interviewed during this study identified three main themes as the driving force in the development of the Hillsborough County s SpNP: disaster experience, coalition building, and collective moral responsibility (see Figure 3). Collective moral responsibility was found to be the main theme and directly affected the development of the SpNP coalition and how people and institutions experience disasters. It was apparent thr oughout the interviews with stakeholders and elites that they deemed that t he community had a collective moral responsibility to protect people with special needs during a hu rricane evacuation. After the evacuation of Hillsborough Count y for Hurricane Elena in 1985, it was clear that a program needed to be develop ed, to provide adequate shelter and a system to provide care for people with s pecial needs during an evacuation. While Hurricane Elena, did not actually make l andfall in Hillsborough Co unty, it forced a three-day evacuation of the community. During the evacuation workers in public shelters were over-whelmed, by those ev acuees with special medical needs. The combination of feelings, of collective mo ral responsibility and secondary disaster experience, resulted in the formation of a coalition called the Hillsborough County Special Needs Program Planning Committee. Over the years, t he SpNP evolved,

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as it incorporated the resources, disaster experiences and moral responsibilities of new stakeholders as they joined the coalition. Figure 3. Model of how me mbers of the SpNP Planni ng Committee perceived the meaning of community responsibility for individuals with special needs, in an evacuation for a hurricane. Collective Moral Responsibility SpNP Barriers Disaster Experience Coalition Building Hillsborough County Special Needs Program Prior Theoretical Research Many researchers argue that rather than discrete events, disasters are social constructions and as such are pr oducts of social definition (Kreps, 1989; 314

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315 Drabek, 1991; Dombrowsky, 1998; Gilbert, 1998; Quarantelli, 1998a). According to the constructionists point of view, it was the organized activity of claimsmakers (stakeholders), which ultimately constructed societys definition of what constitutes a disaster (Sarbin & Kitsuse, 1994; Tier ney, et al, 2001). As different groups promoted claims about disasters and thei r potential and probable consequences to the community, social problems were i dentified and defined. Once a social problem had been defined, st akeholders engaged in activities to influence the public agenda, so that the issue was addressed. Usually, social problems are addressed through actions taken, at some level of the government. Disaster Experience Research suggested disaster experienc e, contributed to higher levels of household and community preparedness (Tie rney et al, 2001). According to results from a meta-analysis of the literat ure, a communitys efforts in disaster planning, was directly related to the frequency of disasters in that community (Drabek, 1986). Communities or agencie s having repeated experiences with disasters, will often develop disaster subc ultures, with beliefs about what actions should be taken to protect people (Wenger, 1978). According to Wenger, disaster subcultures only develop in a community, w hen three factors are present: repeated disaster impacts, impacts result in significant damage, and risk knowledge. Results from this study did not suppor t Wengers view. It can be argued that Hillsborough County developed a strong disaster subculture, even though the community has not received significant damage from a disaster, in over 80 years.

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316 In fact, many agencies in Hillsborough County have a high level of knowledge, of the risks presented by hurricanes. This knowledge of risk, can be attributed to four primary sources. Fi rst, many agencies have employees who experienced the damaging effects of hurricanes, while living elsewhere. Second, over the years Hillsborough County has activated its evac uation plans several times, due to threats from hurricanes, which were ultimate ly diverted to other locations. Third, much of the knowledge of risk was gained through the experiences of agency workers from Hillsborough County being deploy ed, to help communities affected by hurricanes with search and rescue then reco very efforts. Fourth, the media broadcasted images of the devastating e ffects, hurricanes created in other communities. In 2004, the SpNP was made operational three times, for hurricanes that ultimately missed. After closing the shelters and EOC, those people involved with the SpNP, were able to go home and watch media coverage of the damage the hurricane caused in other communities. While nothing could be found in the liter ature, on the effects of personal experiences with disasters and the effect on the agencies they work for, some researchers have examined the effect s of exercises on systems-level preparedness (Livet, Ritcher, Ellison, Dease, McClure, & Feigley, 2005; Burke, Sarpy, Smith-Crowe, ChanSerafin Salvador, & Islam, 2006; Dausey, Buehler, & Lurie, 2007). To study public health and heal th-care sectors, abilities to cope with large-scale public health emergencies, re searchers conducted content analysis on exercises simulating emergencies (Biddi nger, Cadigan, Auerbach, Burstein, Savoia, Stoto, & Koh, 2008). Exercises were found to improve two levels of

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317 preparedness: individual and inst itutional/system. At the i ndividual level, exercises were found to provide handson education, to personnel on a communitys disaster plans and procedures. At t he institutional or systems level, exercises help to reveal the plans weaknesses, disclose missi ng resources, and clarify specific roles and responsibilities for participating agencies. In Hillsborough County, their SpNP was tested yearly, in conjunction with the annual hurricane evacuation exercise. Im mediately after every exercise, there was a review of the exercise or hot wash at the emergency management center. During the hot wash, the performance of every agency was critiqued, weaknesses in the plan identified a nd improvements to plans suggested. Agencies then conduct their own internal hot wash and repor ted results back to the EOC planner. The planner then developed a comprehensive document, identifying all issues raised by the different agencies and provided this information to all members of the SpNP. This same protocol was followed, for the 9 hurricane evacuations Hillsborough County has conducted, since Hurricane Elena. Coalition Development The social constructionist examines so cial activities stakeholders engage in, to develop a program to address a social problem (Tierney, et al, 2001). This process of taking action, to ensure comm unity agencies are able to protect people in the event of a disaster, was referr ed to as social preparedness (Gillespie & Streeter, 1987). The pr ocess of social prepar edness involves a financial commitment, planning, training, and community education.

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318 There was a growing body of literature on the importance of agency collaboration when addressing social problems. Coalit ions are defined as, interorganizational, cooperativ e and synergistic working alliances (Butterfoss, Goodman, & Wandersman, 1993, p. 316). Community health projects, relying on coalitions and partnerships between agencies to bring about change, have increased dramatically over the past 30 years (Berkowitz, 2001; Kadushin, Lindholm, Ryan, Brodsky, & Saxe, 2005; Zakocs & Edwards, 2006). Review of the literature found, coalit ions to be important in seven ways (Butterfoss, et al, 1993). First, through coalitions organizations can share management and development of programs. Second, coalition activities can develop wide-ranging public supp ort to address social problems. Third, using joint action coalitions enabled individuals and organizations to maximize power, allowing the group to achieve objectives that could not be done individually. Fourth, coalitions can help provide a s eamless system to deliver services, in a manner that minimizes duplication of efforts. Fifth, a coalition of agencies provided access to more skills, resources and abi lity to influence action on an issue than organizations working alone. Sixth, coalitions provided pathways to recruiting knowledgeable people from t he community, to help address the issue. Seventh, flexible coalitions are able to exploit new resources, as community situations change. The findings of this study would ag ree with findings from the literature review by Butterfoss, et al (1993), but w ould suggest that flexibility is the most important of the seven variables. Only th rough the flexibility of coalition members,

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319 can the other six variables be achieved. The researcher has often heard the phase, flexible like Gumby and a flexible, green Gumby can be found in the EOCs reception room. Currently, one of the barriers to the SpNP reaching its full potential was that there ar e several organizations in the community, who have not committed personnel to help staff shelters. Members of the coalition have tried to get these organizations to participate but in some cases have failed. Several organizations have recently been legislated to participate, through the members of the SpNP advocating legislators to pass laws, requiring their participation. The literature suggests coalitions c an be categorized into three types depending on differences in membership, fo rmation patterns, functions of the coalition, and types of stru ctures in place to address these functions (Feighery & Rogers, 1989). The first type of coalition was organized by volunteers, in times of crisis, to apply grassroots pressure on polic ymakers. The second type of coalition was formed by professional organizations, to increase power and influence. The third type of coalition was community-based and was formed by professionals and grassroots leaders, who join forces to influence community pr actices for the longterm. Criteria for a community coalition wa s that it involved multiple sectors of the community, addresses local community issues, and helped resolve social problems through collaboration (Berkowit z & Wolff, 2000). The Hillsborough County SpNP, because of its membership diversity would be considered a community coalition. Five factors were found to contribute to the maintenance of coalitions: extent of formality, leadership characte ristics, membership characteristics,

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320 organizational climate, and quality of relationship with external support systems (Butterfoss, et al, 1993). (1 ) Formalization was the extent to which the coalition defined rules, roles and procedures. Acti vities included writing memoranda of understandings, by-laws, defining policy an d procedures. (2) Strong leadership was important in maintenance of coa lition activities. Leaders need to be supportive of member concerns and be abl e to negotiate, gather resources, and resolve conflicts and problems to maintain coalition operations (3) The primary asset of a coalition was the resources and skills members bring. Membership was maintained when the benefits of collaboration ( networking, information sharing, and resource sharing) outweigh the costs a ssociated with participation (time, lose of autonomy, sharing resources, additional responsibilities). (4) Organizational climate can be characterized by relations hips among members, relationship with staff, communication patterns, and proce sses for resolution of conflict, problemsolving and decision making. (5) Coalitions are also maintained through external supports such as funding from grant s and support from local politicians. These five factors were found in a sec ond review of the literature by Zakos and Edwards (2005), examining coalit ion functioning and community-wide changes. In this meta-analysis coalitions were found to be more effective when there were formal procedures for governance, encouragement of strong leadership, cultivation of diverse member ship, active participation by members, and a sense of group cohesio n and collaboration (Zakos & Edwards, 2005). The Hillsborough County SpNP disp layed all of these factor s and a sixth factor, which is pride in being part of a program that was consider ed a state model if not a

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321 national model. Many of the stakeholders reported, with a sense of pride that their organizations emergency plans were c onsidered models and they were often asked to help provide traini ng to sister organizations. A meta-analysis of emergency response exercises involving public health agencies found five domains: leader ship and management; communication; surveillance and epidemiology; disease cont rol; and mass care (B iddinger, et al, 2008). The leadership and management dom ain had four themes: understanding of roles and responsibilities; interagency coordination, decision-making process; and strategies to reduce staff absenteei sm. The communications domain had three themes: information sharing among agencies, Health Alert Network, and issues in communication to the public. The surveillance and epidemiology domain had the theme of patient tracking. Finally the mass care domain had the theme of surge capacity and sub-themes of sta ff shortage and credentialin g of volunteers. The findings from the study of the Hil lsborough County SpNP found that two of the domains had themes that were issues leadership and management and mass care. The issue with leadership and management was with strategies to reduce staff absenteeism. It was assum ed, all staff assigned to shelters had developed plans to care for family member s and pets. Not ever y staff member has someone who can care for their family/pets, while they work in the shelter and many staff do not have the financial res ources to pay someone. Failure to adequately plan to provide for shelter staff s family/pets creates resistance, to participation in the program. This is especially true of single mothers, who have small children and do not want to abandon them during a disaster.

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322 In this study, three themes were found in the coalitions development of the SpNP: stakeholders, leadership, and barrier s. The theme stakeholders had eight sub-themes: defining special needs, divers ity, planning, education, registration, staffing, benefits, and conti nuation of operations plan. Two of these sub-themes, registration and continuation of operations pl an, were not identified in the empirical literature on coalition building. In this study, the majority of the stakeholders interviewed felt that identification and registration of the special needs population, was a critical issue. It was also clear, for organizations to be able to respond to a disaster as functional member s of a coalition, their organization needed to have developed a detailed continuat ion of operations plan for responding to disasters. The theme leadership, in this invest igation, was found to have five subthemes: consistency, collaboration, communication, flexibility, and vision. The subthemes collaboration and communication were identified in the literature, as subthemes of leadership but cons istency, flexibility, and visi on were not. In this study consistency of staff at t he EOC, was identified as a major contributor to the success of the SpNP, by the majority of the stakeholders. The EOC responded, their success was due to the freedom to be fl exible. This flexibility allowed the EOC staff the freedom to speak their minds, without fear of reper cussions, even if what they have to say annoyed some people. Finally, the theme barriers to the fo rmation of the SpNP had eight subthemes: legislation, identif ying targeted population, educat ion, motivation, staffing, training, resistance to change, and struggle for power. All the sub-themes, except for identifying targeted population and motiva tion were previously identified as

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323 barriers to the success of coalitions. While the literature did re fer to the struggle for power as a barrier to some coalitions successes, in this study the power struggles were not within the coalition itself, but was a struggle between levels of government. In this coalitio n the county was the major force, but the au thorities of a major city wanted to have control ov er operations, in their jurisdiction. Collective Moral Responsibility During the development of a communitys disaster response plan, serious ethical decisions on numerous issues mu st be made by stak eholders (Roberts & DeRenzo, 2007). For example, who in the community will be protected, what resources will be committed to the plan, and what level of safety will be provided? According to Roberts and DeRenzo, there are two theories of ethical behavior that are applicable to the planning process for em ergency situations that may result in mass-casualties: consequentialist and duty-based. Developed by Bentham, consequentialist ethics or utilitarian theory, asserts that public policy should maximize t he good for the greatest number of people possible. This form of ethics evaluates what is good, based on whether or not the outcomes of the proposed actions will be good. When basing policy decisions using consequentialist ethics, stakeholde rs must be aware of two major weaknesses. First, it was di fficult to predict consequenc es of a disaster because each disaster was different. Second, w hen maximizing the good for the greatest number of people, minor ity groups may find their rights ignored.

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324 In opposition to consequentialist ethics was duty-based ethics. Developed by Kant, duty-based ethics, also known as deontology focused on nonconsequential-based notions of good (N ational Endowment for Financial Education, 2006). Duty-based ethics asse rted that public policy was good if it meet the duties and obligati ons of the stakeholders. The major weakness of dutybased ethics was during a disaster, a person may have conflict due to duties associated with different roles. Disast er workers will have to choose, between duties associated with their pr ofessional role at work and their role as family members. In the empirical literature, a person s role has been identified as a moral concept in the health care and welfare professions (Bowie, 1982). Along with a role comes obligation, which has traditi onal, legal, and moral obligations. When assuming a role, one no longer acts strictly as an individual but was bond to operate within a certain set of rules and expectations (Downie, 1982). For example, cultural expectations obligat e certain occupational groups; such as police, firefighters, nurses and other emer gency workers put their own individual self-interest aside when disaster occurs (Tierney et al, 2001). According to Bowie (1982), the rules and expectations of any role, can be divided into one of three categories. T he first category was the roles customary elements or behavior norms one was expect ed to conform to, even though they may not be written down. The second categor y consists of a roles legal elements; those formal rules and regulations one must adhe re to if they wish to retain the job.

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325 Category three consists of the moral obli gations of the role. There is a close connection between legal responsibility and collective moral responsibility. During the interviews with stakeholder it was noted that people in the SpNP were labeled in several different ways: patient, client, consumer, and people. While there did not seem to be any confus ion on the part of stakeholders as who was being referred to, the use of different terminology has conno tations. The term patient insinuated, the person was passive, leaving the health care professional to direct care. The term client suggests dependency, under the protection of another. Consumer on the other hand implied, the person was the arbiter of his or her needs, and it was the role of the prof essional to meet those needs to the consumers satisfaction. A study of populations from four clinics indicated, in the medical setting sick individuals tended to id entify themselves as patients (Deber, Kraetschmer, Urowitz, & Sharpe, 2005). It should be obvious, that health and welfare are bound together and professionals from different agencies should work together, to provide a seamless system of care (Downie, 1982). Downie identifies two types of collective responsibility, in the care of people: vert ical and horizontal. Vertical collective responsibility represents the institutional ro le in providing care where the individual represents a profession and its duties and values. In horizontal collective responsibility, a variety of professionals s hare responsibility for care of people. Three ethical questions must be dealt wit h, in collective decision making (Pellegrino, 1982). First, will moral responsibility be shared between agencies in collective decisions? Will agencies keep individual moral responsibility or was

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326 there a collective moral responsibility transcending individual responsibility? Second, when making collective decisions does one cooperate with decisions not meeting personal moral standards? Does one fight for personal believes to the death or was there some compromise? Third, faced with conflict of obligation who should be the primary benefactor of moral responsibility? Each member of a collective decision has three categories of obligations, (1) to the group being served, (2) to partners in the collective decision, and (3) to personal moral principles. In this study, the third theme, collective moral responsibility had three subthemes: cultural expectations, per sonal responsibility, and government responsibility. The sub-them e cultural expectations had four categories: protect vulnerable populations, womens role, pet s, and medias role. The second subtheme personal responsibility, was the expectation that if a person is able to care for themselves or have someone to care fo r them in a disaster they should be able to provide for themselves during a disa ster and not rely on the government. The third sub-theme, government responsibilit y had three categories: medical model, legislation and funding. The government pl ays a big part in the development of many programs to address social problem because, as a culture, we expect our government to act as the agent in satisfying our feeling of moral responsibility. The fourth sub-theme were barriers to the SpNPs development, which has six categories: resistance to change, training, denial, apathy, missing players and the plans Achilles heel as if focuses on prepar ation and response but failed to plan for disaster recovery.

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327 Main Findings: Clients Constructi on of the Meaning of the SpNP In this section, the second of the th ree research questions, how clients of the Hillsborough County Special Needs Progra m constructed their meaning of the program, are discussed. To understand how c lients of the SpNP constructed their meaning of the program, 30 in-depth, semi-s tructured interviews were conducted. Issues raised, were verified by in terviews with elite participants. Five major themes were identified: r egistration barriers, SpNP knowledge, support systems, cultural expectations, and media. The central theme explaining how clients constructed their meaning of the SpNP was cultural expectations. Registration Barriers Both Client and elite groups agreed, there were five main sub-themes as to why people did not register including: lack of knowledge, mistrust of government, and denial. Several people commented that after hearing about the SpNP, they had a difficult time getting specific in formation on the program. Many people expressed real frustration, with this y ears registration process. Required to reregister for the first time, many SpNP clients commented though they had sent their application in months ago, they st ill had not received verification of their registration status. Many were worried that if a hurricane came, they might not be evacuated. After recently being mandated to maintain the SpNP database DOH, required all SpNP clients to re register in the effort to remove the names of people, no longer needing the programs services. Lack of sufficient DOH staff created long delays, because the extra workload was not accompanied, with additional

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328 funding. According to several of the e lites interviewed, through realignment of resources, the DOH now has the appropriate staff in plac e to deal with the yearly registration process. One of the biggest barriers identified by SpNP client s, that helped to explain why more people have not registered for the SpNP, was the role of medical professionals. None of the SpNP c lients interviewed, reported receiving information on the program, through their primary physicians. Many clients and elites expressed beliefs, it was the respons ibility of the medica l profession to have a nurse or a social worker sit down and provide a detailed description of the program, to people who might qualify for th e program. By getting the information from health care providers, people would be getting information from someone that they trusted and respected. It was co mmented by one client, that registering people in the program, was just good preventative medicine. Several of the SpNP clients intervie wed, suggested that many people did not register for the program because not trusting the government, they refused to provide the requested health information. Though-out Americ an history, many people have been resistance to what they consider government intrusions into private lives. Many disabled and elderly people living in the community are afraid, if the government knew of their health condi tion, they might be forced to relocate to an ALF or to a nursing home. Many elites and several SpNP clients thought that information on the SpNP presented on TV was ignored, because peopl e did not think it pertained to their personal situation. In the case of an evacuation for a hurricane this may be true,

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329 as these individuals may be able to eit her evacuate themselves or have strong support systems to help with evacuation. Others may reside in sturdy homes and have prepared for hurricanes, so that they are not reliant on government services. Many SpNP clients and elites interview ed in this study expr essed, that some people with special needs did not register for the program because of denial. People were in denial that this area could be struck by a devastating natural disaster, such as a hurricane. Others with special needs were in denial of their potential need for assistance in an emergency evacuation, thinking they would not be affected. A good example given was that when a hurricane was in the Gulf of Mexico, as many as 150 new SpNP appl ications arrived daily at DOH and emergency management offices. It was not uncommon for up to 1,500 applications to appear in three or four da ys. People knew about the program, but did not register, until danger was at their doorstep. People did not seem to r ealize that other natural disasters such as floods, tornados, or floods might also force evacuati on of county residents. Evacuation of residents may also be required because of manmade disasters, such as, ammonia or gas pipeline leaks or hazardous material spills because of truck accidents or train derailments. Hillsbor ough County was also thought to be at high risk of a terrorist attack due to the presence of severa l professional sports facilities, family entertainment parks, and the biggest Performing Arts Center south of Washington, DC. Also located in Hillsborough County is McDill Air Force Base, headquarters for Central Command, the command site fo r wars fought in Afghanistan and Iraq. Because of these other potential hazar ds, emergency management would like to

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330 know the location of any individuals need ing assistance evacuating on notices too short for personal sup port systems to react. In summary, several registration barrier s were found, during the analysis of interviews with the 30 SpNP clients and 10 elites: lack of access to and knowledge of the registration process, mistrust of government, and denial. The clients lack of SpNP knowledge existed, because many of the programs stakeholders had little knowledge about the program. Confusion about the SpNP also existed among clients, due to the tran sition of the registration process, from emergency management to the DOH. Clients interv iewed found little assistance with the registration process from medical profe ssionals they received services from. According to clients and elites, there also existed a general mistrust of the government. As a result many refus ed to register in government programs because of distrustful as to what woul d be done with information provided. This distrust was thought to be especially true fo r individuals of Spanish heritage, either because of language barriers or not having proper documentation. Finally, many clients and elites believed t hat some people did not regist er with the SpNP, due to a state of denial of potential hazards or the belief that per sonal support systems would provide assistance in any emergency situation. SpNP Knowledge When SpNP clients were asked, w hat the term special needs meant to them, almost every participant expressed that it referred to thei r particular medical needs. Many people interviewed thought that the SpNP was a reference, to their

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331 personal medical plan of care. Severa l clients expressed disappointment, upon learning that the interview was not focu sed on their health care program and the services they did or did not receive. Though the purpose of the interview was clearly stated in the letter requesting their pa rticipation, when informed as to what the SpNP was many replied, Oh, the hurricane program. Though registered in the SpNP, many of th e clients interviewed, had no real knowledge as to what services the program did or did no t provide. Agreeing with this statement, one elite suggested that for some people, the SpNP was just another of the many health care program s they were enrolled in. The little knowledge, SpNP clients had about the prog ram came from a variety of sources (e.g., public announcements on television, newspapers, HHAs, and talks given by emergency management personnel). Several SpNP clients claimed that after hearing about the program, they obtained the kno wledge they needed through personal persistence. In other words, t hey kept calling different agencies in the community, until they got the information. Each year thousands of copies of the Hurricane Guide, providing evacuation and SpNP information are printed. Even though these guides can be found in post offices, libraries and supermarkets, only fi ve of the 30 people interviewed reported seeing a copy. Of the five who had seen the Hurricane Gu ide, only two confirmed that they had actually read it. Not surprisingly, due to transportation issues, many clients had no reliable access to post offices, libraries and grocery stores. Part of the problem was, the Hurricane Guide print ed by local newspapers, looked like any other section. An examination of the Tampa Tribunes 2008 Hurricane Guide

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332 found it contained mainly adver tisements. SpNP and SpNS information was buried in the back of the guide. As a resul t, this year the EOC developed its own Hurricane Guide, which contained no adver tisements, just information on flood zones, disaster preparedness, evacuation pr ocedures, and the SpNP. The EOCs hurricane guide will be delivered to all pos t-offices, government facilities, HHAs, and will be mailed to everyone who register s with the SpNP. The guides will also be handed out at community forums on hurric anes delivered by staff from the EOC or DOH. Several barriers to accessing SpNP knowledge were expressed during the client interviews. Some clients compla ined that though they had sought knowledge on the program, agencies contacted could not provide information. The parent of one client remarked, they called their a ssigned hospital for information several times. It took over th ree weeks to get any response and then the hospitals representative could not answer any questi ons, not even which entrance they should use. In summary, it was apparent that m any clients had little knowledge about the SpNP, thinking it was just another of t he many health care programs they were enrolled in for their special medical needs. This lack of knowledge was determined to be mainly the fault of health care professionals, including HHAs and primary physicians, who provided little if any SpNP information. Because of mobility and transportation issues, many did not have a ccess to the Hurricane Guide. It was evident, that many clients had given very lit tle thought to the SpNP. Yet, they had

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333 expectations that if evacuation was necessary, the government had made plans to accommodate their needs. Support Systems Once registered with the SpNP, it became part of a persons personal support system. For some clients there was no other support system but for a few friends. In 2004, during Hurri cane Charley, several clients evacuated to a friends house. Not wanting impose on their fri ends and become a burden, they remained at home alone, during the following two evacuations. There were also clients who, though they had family nearby, c ould not depend on their support. Many clients had strong support syst ems consisting of family, friends, and/or professional health care services. This was especially true for those SpNP clients who were children and being cared for by parents or grandparents. In cases involving children, the caregivers appeared to take great pains to ensure that needed emergency supplies were availabl e for the child, but often failed to plan for their own needs. Several caregive rs admitted that they would probably arrive at the shelter, without bringing supplies for themselves. Several clients interviewed, lived in low-income housing complexes for adults. These complexes, while not regi stered as ALFs, which are designed to provide professional health care services to residents, had on-staff social workers who monitored the health and wellbeing of residents. These facilities have become pseudo ALFs, as residents age in place, receiving onsite professional health care services. One resident of a low-income, adult housing facility admitted

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334 that she had a very strong professional support system from many agencies and without these services she woul d be placed in a nursing home. In summary, many of the SpNP client s interviewed reported that they had good personal formal and/or informal support syst ems. This was especially true for children registered in the SpNP, being cared for by parents or grandparents. Those clients living in low-income housin g for adults could depend on the facilities social worker, as a support system and many were receiving onsite professional health care services. One problem identified for SpNP clients relying on friends assistance to evacuate, was that they did not want to become a burden, when multiple evacuations were order ed during a short time period. Cultural Expectations One of the cultural values, held by many Americans, was that it is the responsibility of people to care for themselv es and their families. Because of this attitude, many Americans consider reliance on government programs as a sign of weakness, of not being able to stand on your own two feet. Several clients and elites, interviewed in this study, believed t hat many Americans want to be left alone and really did not care about the problems of others. Another cultural expectation held by many Americans, was that those needing financial or professional health care, should turn to the government for assistance. This belief that people, who are poverty-stricken or medically needy should be taken care of by the government, was in direct contrast to the belief that people should take care of themselves.

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335 It was expressed, that natural disa sters presented a national security problem, making it the responsibility of the government to mi tigate, prepare to respond, and provide for peoples safety. A SpNP client commented that while it was the personal responsibility of people to develop plans to deal with hurricanes, as a culture, we have become dependent on the government to take responsibility for our wellbeing. Consequently, the gov ernment needs to be aware of this dependency issue and make appropriate plans, to care for people after a disaster. A person or family may become dependent on assistance from others for a variety of reasons, such as: poverty, la ck of preparedness, and/or disability issues (physical or mental). Many Americans, dependent on ot hers, live on a very limited income and struggle to survive from one day to the next. Several clients interviewed admitted to financial difficult ies and were not able to purchase supplies to be used sometime in the future. All clients interviewed felt it was the responsibility of the government to care for people. Consequently, it was the respons ibility of the government to care for residents with special needs and develop pr ograms to improve their wellbeing. When probed, most clients commented that during an evacuatio n the government was responsible for providing accessible safe shelter, appropriate transportation to shelters, security, food, and water, cots, electricity, and personal care attendants. Several of the SpNP clients expre ssed beliefs that the chaos in New Orleans was the fault of po litical leaders, believing t hat slow government response was ultimately due to the affected population being poor and predominately African-American. Though one of the AfricanAmerican caregivers interviewed, did

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336 not think that the issue was racial, but rather economic. He felt the government looked down on the poor and after a disaster, would provide assistance to richer neighborhoods, before reaching out to poor residents. When probed if the government had learned its lesson after Hurricane Katrina, several clients responded, they did not think so. When probed further, concerns were expressed that the governments future reactions would depend on where a hurricane hit, with wealthy republican communities being served first. In summary, Americans in general, expect that it was the responsibility of people to care for themselves and their fa milies. Those who are physically and financially capable are expected to develop emergency plans and buy supplies, so they are not dependent on others, during and after a disast er. In contrast, those who do not have the physical capability or financial resources to care for themselves, become the responsibility of the government. This dichotomy of cultural expectations, held by Americans, as to when the federal government should be responsible after a disaster and when it should not was complicated. By design, the state does not commit its resources until requested by local government and the federal government does not get involved until requested by state officials. Even afte r a major disaster, no politic al representative wants to appear unable to get the job done, when it comes to meeting their constituents needs. Consequently, factors triggering when the disaster becomes the responsibility of the next level of government, are not universal.

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337 Media Review of the qualitative data indicated a strong relationship existed between the theme media and the themes: SpNP kn owledge and cultural expectations. While both the SpNP and Sp NSs are issues covered by the media, the term special needs, has never been adequately defined for the public. The media informs the public of the existenc e of the SpNP and SpNSs and the need to register, but the information provided was considered by many of the participants in this study, to be very superficial without getting into the specifics of the program. Upon reflection it would be difficult fo r the media, which provides coverage to numerous counties to get more specific about the scope of a SpNP and setup of the SpNSs when each county has its own unique plan. Additionally, Florida legislators, have yet to specifically def ine what constitutes special needs and has failed to identify what services count ies must provide. Consequently, some counties provide services not available in other counties and some shelter people with special needs in public shelters, along with the general population. Thus providing information via television or radio on one countys SpNP would create confusion among people livi ng in other counties. Many of the elites commented that detailed information on the SpNP was provided on the Hillsborough Counties Emergency Management Departmental website. Yet several of the SpNP cli ents, stakeholders, and elites thought that many people with special needs did not hav e access to a computer nor know how to operate a computer.

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338 The Hillsborough County Hurricane Guide was thought to be a great source of information on the SpNP by stakeholders and elites. When probed, five clients reported seeing the guide and only two said they had actually read it. The guide was available in numerous gr ocery stores and HHAs routinel y give copies to their new patients. Still many people with spec ial needs are either not receiving the information or ignoring it once they get it. After the extremely active 2004 and 2005 hurricane seasons, the media was geared up to announce the coming of the 2006 season. The television stations news departments were prov iding copious amounts of information on hurricanes and what supplies were needed to deal with a hurricanes aftermath. Several SpNP clients interviewed thought the amount of coverage amounted to overkill. Some complained the media was using scare tactics and created an environment of fear. When probed if the coverage had motivated them to purchase supplies and prepare for the forthcoming hurricane season, many clients responded not yet. Many SpNP clients and elites interv iewed expressed feelings, that the amount of coverage was not too much. They thought the coverage was educational and repetition helped people, absorb all the information. In America the media, es pecially television, plays a pivotal role in the formation of public expectations and opinions. Through its selection as to what news was covered and how that informati on was presented, the media shapes public perception of im pending disasters and how government reactions to disasters are judged. Seve ral SpNP clients and elit es interviewed express concerns that the media had missed a good opportunity to educate people as to

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339 consequences of certain behaviors. One client commented that even though she lived in a flood zone, none of her neighbors obeyed evacuation orders. Instead, they planned to shelter-in-place and have hu rricane parties. It appeared that the media had missed providing the public with a powerful teaching tool, by not showing the consequences of not properly preparing or reac ting to evacuation orders. Another good example given of the medi as failure, to educate people was concerning the responsibilities of pet ow ners. After Hurricane Katrina, the media covered the plight of pets left behind, when their owners evacuated. The media played this up, making it appear the government was responsible for rescuing and caring for these animals after the storm. As a result, there was a great influx of money to animal shelters, sent by peopl e concerned about the plight of these animals. Some rescued pets were given to people, who were not the original owners, creating a public outcry that the government had carelessly given away peoples pets. Many of the par ticipants, in this study, ex pressed felt that if the media had covered the issue differently, public reaction would have been different. Many believed the media should have focused on the irresponsible actions of the pet owners, for leaving pets behind. If the media had spent it s efforts tracking down pet owners, demanding to know why they left their pets behind, it would have helped to educate the general public. In stead blame was directed from the pet owner onto the government.

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340 Interaction of Themes Analysis of qualitative interviews with SpNP clients and elites was conducted to explain how clients constructed their meaning of the program identified five main themes: registrati on barriers, SpNP knowledge, support systems, cultural expectati ons, and media (see Figure 4). Once a person was registered in t he SpNP three major barriers were discovered that interfered wit h knowledge of what servic es the program provided: stakeholder knowledge, information s eeking behavior, and expectations of government. Once enrolled in the SpNP it became a part of each clients support system, though this relationship was directly related to knowledge of the SpNP. Many clients expressed that they were hesitant to utilize the program, because of a lack of knowledge of the services prov ided by the program and fears as to the conditions in they would find in a SpNS. A persons support system has a twoway relationship with cultural expectations. The type of support system a person has, formal (professional) or informal (family and/or friends), appears to be directly related to what was expected of society. Duri ng a disaster, it appears that those able to care for themselves or have a good supp ort system expect little assistance from society. Meanwhile, those people unable to provide for personal care, expected society to provide the assistance they needed to safely survive the disaster.

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People with Special Needs SpNP Registration Knowledge Barriers SpNP Knowledge Support Systems Media Cultural Expectations Registration Barriers Figure 4. Model of how clients construct their meaning of the SpNP. Prior Theoretical Research A comprehensive, exhaustive review of the literature determined that there were no qualitative or quantative research studies previously conducted, to examine a communitys SpNP. There were however a couple of studies, that while studying the general populati on provided some information on the problems people with disabilities faced, duri ng community emergencies. 341

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342 Registration Barriers In a study of 2,400 people with disabili ties, living in 15 Florida counties, 475 (19.8%) commented that in an evacuation si tuation they would need the services provided in a SpNS (Florida DOH, 2007). Yet, when these individuals were asked if they were pre-registered in a local SpNP only 40 (8.4%) indicated that they were registered. Of the 435 not pre-registered for a SpNS 100 (23%) indicated that their reason for not registering, was a la ck of knowledge as to where and how to register. In the General Analytic Model of Evacuation Behavior, discussed in chapter two of this manuscript, one of the fi ve factors in understanding evacuation behaviors is community context, the availability of local resources and components of existing plans (Quarantelli, 1984). A community can allocate sufficient resources and have the best plans possible, but if the community served does not know this knowledge, then it serves no purpose. SpNP Knowledge In a study conducted after Hurricane El ena, researchers found that in Hillsborough County 86.6 perc ent of evacuees were aware of the countys Hurricane Guide, though only 48.0 percent actually used the guide (Nelson et al., 1988). For those not evacuating the Hurricane Guide knowledge was 76.4 percent, with only 40.0 percent actually usi ng the guide. In this study of SpNP clients, 55.5 percent reported having seen the Hurricane Guide but only 6.9

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343 percent had actually read the guide. Seve ral clients interviewed expressed that they had heard of the existence of t he guide but were unable to get a copy. Support Systems Previous research suggests that t he presence of strong support groups, may actually impede an individuals decision to evacuate (Raid, Norris, & Ruback, 1997). Most of the clients, interviewed for this study, reported that they had an informal support system consisting of family friends, or a combination of family and friends. Those with informal support syst ems were found to be slightly more likely to evacuate immediately, when co mpared to those without informal support. Of those clients reporting the presenc e of had a formal support system, few planned to evacuate immediately, when com pared without formal s upport systems. For those 12 clients, with both a formal and informal support system, only one planned to evacuate immediately. There were six people who claimed not to have either a formal or informal support syst em, all of whom lived alone and were confined to wheelchairs. Those without any support systems a third planned to immediately evacuate. This suggests t hat the presence of formal and informal support systems may provide people with special needs with a sense of safety supporting the findings of previous research (Raid, et al, 1997). Cultural Expectations In the U.S., individualism and sanctity of private property, are considered to be important cultural values (Tierney, Li ndell, & Perry, 2001). Thus, many people

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344 are reluctant to evacuate to shelters where they would be dependent on others and would not be able to protec t their property from thief. One of the participants in this SpNP study asked, why TECO and the government so worried about people only after disasters? She commented that TECO and Tampas Water Department were quick to disconnect her services, when she failed to pay her bills, because of lack of money. According to Blocker and Sherkat (1992), recent cultural trends in the U.S. have defined disasters as acts of man, rather than as act s of God. This suggests that many U.S. residents believe, it is the responsibility of government to protect citizens from the e fforts of disasters. Appar ently God is no longer being held responsible for the devastating effect s of nature. Rat her, the damage caused by natural disasters, are attributed to t he failure of government to properly mitigate for natural disasters. This would explain why 27 percent of evacuees for Hurricane Elena complained they had expected provisions at ARC shelters, such as, food and cots that were not t here (Nelson et al., 1988). Another cultural trend in the U.S. is the ownership of household pets. Greater than 50 percent of U.S. households own pets and the more pets a household owned, the higher t he risk of evacuation failure (Heath, Kass, Beck, & Glickman, 2001). A 1986 survey, estima ted that 51.5 percent of Hillsborough County residents had pets (Nelson et al., 1988). As a policy public shelters do not take pets because of lack of facilities and t he fact that many ev acuees are allergic to animals (Raid, Norris, & Ruback, 1997).

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345 Media In a review of 1590 articles, it wa s determined that individuals and families were less likely to be held accountable for their actions (13.8%), than the federal government (86.2%) when it came to ev acuation decisions (Meacham & Erickson, 2007). Media reports of Hurricane Katri na focused more on government response efforts and less on the level of indi vidual and community preparedness or responsibility (Barnes, Novilla, Meacham, & Erickson, 2008). This resulted, in a media-driven disaster policy t hat highlighted the deficiencie s in the delivery of relief by the government, rather than on the re sponsibility of individual and local preparedness. The truth is, the press and media do not always reflec t reality, but rather filters information in the effort to shape public opinion. By concentrating on a few chosen issues, the media is able to shape pubic perception that certain issues are more important than others (McCombs & Shaw, 1972). The sight of animals stranded in floodwaters, pulls at the hearts trings of the public, because they can visualize their beloved pets in similar sit uations compelling them to continue to watch the news coverage. If the media had instead focus ed, on the failure of pet owners to provide for their animals, it would have forced people to analyze their own failure to plan to protect pets in simila r situations. By forcing people to accept their own failure, to properly plan, it w ould have likely caused people to ignore the issue and turn the news off.

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346 Main Findings: Societies Influence on SpNP Clients Evacuation Decision In this section, the third of the three research questions, how society influenced the evacuation decision of clients of the SpNP will be discussed. To understand how society influences the decis ions SpNP clients make regarding evacuation to a shelter 30 in-depth, semi-structured interviews were conducted. Issues raised were then discu ssed with elite participants. Using open coding of the 30 interviews three main themes emerged: risk perception, evacuation barriers, and medi a. The central theme explaining how society influenced, the evacuation decision of SpNP clients was determined to be risk perception. Risk Perception Each client interviewed reported understanding, that a hurricane could possibly strike Hillsborough County. O ne thought that, becaus e of the counties geographic location, it was less likely to be st ruck than other areas of Florida. Only 36.percent of the people interviewed, reporte d that they would immediately comply with emergency management evacuat ion orders. Of the elev en: five lived in flood zones, three were oxygen dependent, two lived in one-story apartments surrounded by large oak trees, and one felt safer in the SpNS. (This person actually looks at the evacuation to a SpNS, as an enjoyable social event). Having a disability can increase a pers ons perceived sense, of being at risk to the environment. Several SpNP clients ad mitted they were afra id, of what might happen to them in a hurricane. One client interviewed expressed the believed, that

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347 it was the responsibility of people to evacuate when requested by the government; because failure to evacuate not only put their own life in danger, but also jeopardized the life of first re sponders who would try to help. Several SpNP clients realized that while their homes were structurally sound and in all likelihood would survive a hurric ane, there were trees on their property that would crash down on the house. Others felt that th eir older home would be safe in a hurricane, because it had survived many storms over the years. Two clients interviewed commented, their fam ilies had lived in Hillsborough County for generations and had never before evacuated fo r a storm. This information was given with a sense of pri de, especially by one caregiver, who did not plan to evacuate when asked. She felt that her 80-year ol d house had survived many storms over the years and could take anythin g that nature threw at it. She did not want to be the first in her family, to turn tail and run from a hurricane. Of the seven people interviewed who lived in high-rise, low-income housing many felt, that even though the structures were built in flood zones, they would be safe because they lived on an upper floor Several of the Spanish SpNP clients interviewed, had survived Hurricane Hugo in Puerto Rico and felt that they were safe in Hillsborough County, because the buildings were stronger. A few SpNP clients expressed, that because Tampa had not been struck by a hurricane in so long, the area was impervious to hurric anes. One caregiver believed it was unlikely a hurricane would make a direct hit on Hillsborough County, because of its location on the west coast of Flori da, in the center of the state.

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348 One SpNP client believed that she did not live in a flood zone, saying it was a block away. What she did not seem to realize, was she actually lived in a flood zone 2, one block away from a flood zone 1. Luckily, as the caregiver of her grandson and young daughter, both with health issues, she always evacuated the area when requested by emergency management. In summary, those SpNP clients who perceived themselves to be at high risk and planned to immediately evacuate wh en ordered, felt at risk because they lived in a flood zone, had dangerous trees hangi ng over their residence, or were dependent on electricity for oxygen. It wa s apparent, that while being a person with a disability can increase a person s perceived risk to environmental hazards, many interviewed have lower perceptions of risks attributable, for a variety of reasons. Many of the SpNP clients in terviewed would not immediately follow evacuation orders, because they felt safe in their homes, even those who those who lived in the upper floors of high-rise building. Several of the clients interviewed believed that due to its, geographic location; Hillsborough County was less likely to experience hurricanes, than other areas of Florida. This confidence of being somewhat protected, may be attribut ed to the fact that the county has not been struck by a hurricane since 1921. Evacuation Barriers Only 11 of the 29 (37.9%) SpNP clients interviewed for this study reported, they would immediately follow evacuation orders, due to an approaching hurricane. Reasons given for not evacuating immediatel y were: disability, fear, pets, social

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349 support systems, disaster experience, income, and source of evacuation information. Many of the SpNP clients intervie wed and several of the stakeholders representing agencies t hat provided services to people with disabilities felt, most people did not understand the iss ues with being disabled. As a dialysis patient, one of the SpNP clients interviewed lives a life full of pain and discomfort. During the 2004 Hurricane Season, when the thr ee hurricane evacuations occurred with about a month, each time her life was disr upted, as she had to prepare her home. After each event she complained, she did not have the energy to get out of bed for two or three weeks. She believed by not evacuating, she could pace herself while preparing her home and not be overwhelmed. Shelter assignment, was dependent on the condition of the person, enrolled in the SpNP. Those disabled who ar e not oxygen dependent and do not need professional medical care, because they c an care for themselves are assigned to ARC public shelters. Usually, these individ uals are in the SpNP because they only require transportation to the shelter. T hose disabled needing oxygen, professional medical care, or are on dialysis are assigned to a SpNS, staffed with medical and non-medical personal to assist them. Those who are obese or have complex medical conditions are assigned to a hospital. When examining the shelter the SpNP cl ients were assigned to it was found that of the 10 people assigne d to an ARC shelter, only three (30.0%) planned to immediately follow evacuation orders, comp ared to two (33.3%) of the six assigned to a SpNS, five (71.4%) of the seven adul ts assigned to a hospital and none of the

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350 six caregivers whose child/grandchild was assigned to Shriners Hospital reported they would immediately follow evacuat ion orders. This discrepancy between adults and children assigned to hospitals was explained, by the childrens caregivers, feeling they could predict when the storm would hit and would have time to evacuate to the hospital. M eanwhile, the adults we re dependent on the county for transport to a hospi tal and realized that due to their complex medical conditions, they could not survive without professional assistance or hospital beds. In total 17 people interviewed commented that in order to evacuate they would require outside assistance, but only six planned to immediately follow evacuation orders. Compared to the 13 people not requiring outside assistance, five did not plan to evacuate immediately. It was clear that many people requiring outside assistance to evacuate did not woul d to burden their friends unnecessarily. Others did not seem to rea lize that by waiting until the last minute to request county transportation to evacuat e, they might be refused because of safety issues. Transportation vehicles are pulled off t he roads, when wind speeds reach 40 miles per hour. It was emphasized that many people with disabilities were dependent on family and friends, to the point where they become fearful, of becoming a burden. It was explained, that the ment ality of the person with a di sability, was a mixture of embarrassment and fear. In a shelter, t hey would be embarrassment, at having to ask for help from strangers and feared that their needs would not be met. This thought was reinforced by a client, who expressed fears about evacuating alone to a SpNS, she was unsure as to what se rvices would be prov ided and who would

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351 care for her. Other fears expressed in going to a SpNS were: concerns of being trampled, uncomfortable in crowds, and being exposed to infections and diseases. Some SpNP clients reported they did not want to evacuate their home because of fears of being robbed, while they were away. One client, who had not evacuated in the past because of the fear of thief, said because of what she saw on television during Hurricane Katrina, she would follow future evacuation orders. Others expressed fears of going to shelte rs, because of what they witnessed on televisions during the evacuation for Hurricane Katrina; these topics will be discussed in the next section on media. All SpNSs and public shelters are requi red by law, to accept service animals. The SpNSs can accommodate some pets but only two ARC public shelters in Hillsborough County accept pets. Many people were misinformed that they were not allowed to bring pets to the SpNSs. This misinformation came from the fact that the SpNP Planning Committee, decided not to rel ease information that pets would be accepted. Some of the st akeholders and several elites commented that they had decided not to inform peopl e they could bring their pets to the SpNSs, because only a few animals could be accommodated. Eight (26.7%) people interviewed had pet s, of whom, only two planned to immediately follow evacuation orders. Both people with pet s, who planned to immediately follow evacuation or ders, indicated that they would leave their pets at home to fend for themselves. Many of the participants commented they would have liked to have a pet, but were not allowed because of health problems or apartment regulations.

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352 When looking at social support systems, the 15 people wit h strong family support systems only three plan to immediately evacuate. Of the seven people with only friends as a support system five plan to immediately evacuate, and of those eight people who reported living alone with no support system only three plan to immediately evacuate. In the study, there were 15 people who lived alone, 13 were wheelchair bound 9 of whom plann ed to evacuate immediately. One of the clients who had evacuated once in 2004, to his parents house, reported that he did not intend to evac uate again. He felt that his newly constructed home was a safe haven and was not in a flood zone. This client was also the only person interviewed, who had live-in health care professional, who provided 24-hour health care services. Thirteen people reported that they had professional health care support, of which, only two (planned to evacuate immediately. This is compared to 9 of the 17 (who did not have professional health care support. This suggests that the exis tence of professional health care support system provided a sense of safety. These individuals did not appear to realize, that if the area were struck by a hurricane, their health care providers would also be affected and might not be able to provide the required services. Eighteen (60.0%) of the people intervie wed had previously experienced a natural disaster: one experienced a forest fire, three experienced earthquakes, four experienced snowstorms, six experienced floods, seven experienced tornados, and eight experienced hurricanes. Three of the 18 people interviewed reported experiencing two different types of di sasters and four had experienced three different types of natural di sasters. When asked if they would immediately obey

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353 evacuation orders, of the 12 who had never an experienced a natural disaster four said that they would. When the same question was asked of the 18 who had experienced a natural disaster, seven replied that they would immediately evacuate. Of the seven people who had experienced multiple disasters, one reported they would immediately follow evac uation orders. This suggested, that those who had survived a variety of natural disasters were either better prepared to deal with disasters, or it gave them faith they could dea l with what nature throws at them. This concept was supported by the fa ct, that those 18 people who falsely believed that Hillsborough County had been st ruck by hurricanes in 2004, only three (planned to immediately comply with evacuation orders. They believed this, even though Hillsborough Count y had not experienced winds at hurricane strength. In fact, the county has not been struck by a hu rricane in over 80 years. In contrast, eight of the 12 who were aware that the 2004 hurricanes missed the county, planned to immediately fo llow evacuation orders. Of the 28 people interviewed, living in Hillsborough County during the 2004 Hurricane Season, 14 had evacuated for at least one of the three mandatory evacuations. All 14 reported evacuating fo r the first mandatory evacuation, seven also left for the second evacuation, but only four left for the third mandatory evacuation. When asked if they planned to follow future mandatory evacuation orders, only six said that they would i mmediately comply. Of the 14 who had not evacuated in the past, only five planned to immediately obey future evacuation

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354 orders. Suggesting that those who evacuat ed in the past, were only slightly more likely, to evacuate in the future. There were 21 people who reported having a disaster plan, eight of whom intended to immediately follow evacuation or ders. Of the 9 people reported having no disaster plan, three said that they would evacuate immediately. So there appears to be little difference in immediat ely following evacuation orders, between those with or without a disaster plan. When the 29 SpNP clients interviewed for this study were ask where they would receive their evacuation information: 16 replied they would receive a phone call from the EOC and 13 said they would get their evacuation information from the media. Of the 16 reporti ng the EOC would inform them, when it was time to evacuate; seven said that they would i mmediately comply. Compared to three of the 13 who would get their in formation, from the media. Nineteen (63.7%), of the 29 SpNP clients reported t hat instead of immediately following future emergen cy management evacuation orders, they would shelter-in-place; until convinced that the storm was severe enough and would make landfall in Hillsborough County. Many of the people interviewed, commented they would base evacuate decis ions, on televised computer models. This could be a serious problem for emergency managers, as these computer models can change radically, within a very short period of time In summary, SpNP clients interviewed we re more likely to report they would immediately evacuate, when they t hought that emergency management would personally contact them. It was also found, that individuals assigned to a hospital,

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355 were more likely to evacuate due to t heir complex medical needs. When that person assigned to a hospital was a child, under the care of a parent or grandparent, none planned to immediately fo llow evacuation orders. It was apparent, those with an informal support system consisting of family were less likely to evacuate, than those whose informa l support system consisted of friends. Individuals identified as living in low-income housing were much more likely to report that they would follow evacuat ion orders, probably due to having fewer resources to care for themselves afte r a disaster. People without a formal professional support system, were more likely to evacuate than those with a good formal support system. A high percentage of people who lived alone, planned to evacuate immediately, when requested. M any people did not plan to immediately follow evacuation orders, because they could not take their pets to the shelters. Several people reported not wanting to leave their homes, because of fear of thief. Some people were hesitant to evacuate, because of fears their needs would not be met and fears of exposure to disease or infections. Those individuals with no disaster exper ience were slightly less likely to indicate they would immediately fo llow evacuation orde rs, than those with experience of at least one type of natural disaster. While those people who had experienced multiple types of natural disasters, only one of seven, planned to immediately follow evacuation orders. Those individuals, who falsely believed hurricanes had struck Hillsbor ough County in 2004, were less likely to evacuate, than those who realized the hurricanes had missed.

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356 Many people seemed to live in a state of denial. Not only did they believe that Hillsborough County was unlikely to be affected by a hurricane, many requiring help to evacuate, commented they did not plan to immediately follow evacuation orders. During the interviews with the clients, the researcher, w ho provided clients with accurate information, addressed all false beliefs concerning the SpNP and SpNSs. For example, one SpNP client wrongly believed t hat she would be charged for using the SpNS, when in fact, all SpNP services are provided free by the county. Also after the interview, clients we re given the opportunity to ask any questions, they had concerning the program. At the conclusion of the interviews, many clients expressed thei r fears had been diminished, now that they know more about the SpNP and SpNSs. Even so, some of the fears had been so ingrained by the medias coverage of Hurricane Katrina they lingered and could affect future evacuation decisions. Media There were many types of media forma ts referred to by the participants in this study: radio, Internet, newspapers, television (education shows and news coverage), and the Hillsborough County Hurricane Guide. Only five (16.7%) of the 30 people reported, they had seen the c ounties hurricane guide and only two (6.7%) commented, they had actually read it. Of the five people who had seen the hurricane guide, three (60.0%) planned to evacuate immediately.

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357 Many SpNP clients interviewed ex pressed, that media coverage of Hurricane Katrina, made them realize for the first time, the amount of damage a hurricane could cause. Several clients claimed that Hurricane Katrina forced them to face their physical limitations and mo tivated them to develop appropriate emergency plans for future hurricanes. A couple of SpNP c lients, who never evacuated in the past, now plan to follo w future evacuation orders by emergency management. Most of the fears expressed by the SpNP clients interviewed, were based the medias presentation of the events, occurring in New Orleans after Hurricane Katrina. Images presented by the medi a, included the plight of many people who were particularly vulnerable because of their special needs; including horrific pictures of frail elderly and people with disabilities. T here was an elderly woman in a wheelchair, she died, only to be cove red with a sheet and pushed to the side. There were media clips of dead handicappe d people, floating in the flooded city streets. Other people wit h special needs, where shown begging for help. Many were without their medications, which were ei ther forgotten or had to be refilled, as it was the end of the month. The basic needs for life, such as, food and potable water were not available. The media coverage gave accounts of people being robbed, beaten, and killed. There were stories, of you ng girls being molested and raped in public. Many of these stories were ultimately proved to be false, onl y rumors. But the damage had been done and even a fter the media retracted their stories, many people continued to believe, the events had actually occurred.

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358 Many clients made comments, th ey had seen what had happened at the Super Dome and did not want to go to t he Sun Dome. Several, SpNP clients expressed, they did not w ant to evacuate to the SpNS s, due to the presence of large crowds. One client expressed, her husband was a little paranoid of crowds. Another client expressed, because of her frail state s he was afraid of getting trampled. A couple of clients expressed fears, the roof of the Sun Dome, would come off like the roof of the Super Dome. Some of the SpNP interviewed stated, they did not want to go to the SpNS, due to fears of being exposed to germs carried by the other evacuees. It was fe lt, that with so many sick people being crowed into a small area, some people would have contagious diseases and it would be impossible to keep the environment sterile. As a result, of what they heard and the visuals of the crowd in the Super Dome several of the SpNP clients expr essed concerns about evacuating to the Sun Dome in Hillsborough County. Not r ealizing that the Super Dome was not a SpNS, but was a shelter of la st resort, for the general po pulation of New Orleans. Except for those SpNP clients with direct shelter experience, everyone expressed some sort of fear, at the thought of evacuation. Many of these fears were the result, of a lack of specific knowledge of the SpNSs, as people had no idea what to expect at the facility. This void of information, was filled by the information and images presented by the media, duri ng coverage of Hurricane Katrina. After reviewing the qualitative data collected, it was appar ent that the media played a major role, when SpNP clients make their decision to evacuate for a hurricane. Many elites expressed, the biggest change they have seen in the

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359 disabled community, was the shock value, of what they saw/ heard in the media after Hurricane Katrina. When probed, all of the Spanish partici pants complained that the Spanish media did not provide much coverage on hurricane preparedness and none of those interviewed, had heard any coverage by the Spanish media about the SpNP. As a result, to get adequate news coverage on local activities and programs, Spanish speakers must watch local Englis h stations, a problem for those who do not understand English. A r eason for this, could be because the few Spanish TV stations available are national and do not provide much regional coverage, in their broadcasts. One participant poi nted out that in Puerto Ric o, the Spanish stations provided plenty of hurricane preparedness information, in its programming. Many of the clients reported, watchi ng the televised weather reports for information. It was often commented by c lients, the new radar systems being used by the weather stations, were really good at showing where a storm was going. Many of the participants felt, after watchi ng the tracks of the eight hurricanes, that struck Florida in during the 2004 and 2005 s easons, they could judge whether or not the hurricane was going to actually st rike Hillsborough County. During the 2004 Hurricane Season, several of thes e individuals only obeyed evacuation orders for the first storm, as this fals e sense of security caused many people to ignore the second and third evacuat ion orders by emergency management. In summary, while media coverage of hurricane damage in other locations may increase a persons leve l of perceived risk, the medias technology and forecasting capabilities, may actually decreas e feeling of vulnerability. Those who

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360 ignore initial evac uation orders by emergency m anagement, because many SpNP clients believed, they could predict a hurricanes path by watching the medias weather reports. There was a trust that the modern technology provided by the new radar systems, would provide people with enough time to evacuate, before a hurricane strike. Many of the people inte rviewed expressed fears of going to a SpNS, because of what they saw on tele vision, regarding the experiences of evacuees to the Super Dome in New Orleans. Not realizing, that the Super Dome was a refugee of last resort, not a pre-designated SpNS. Interaction of Themes Analysis of qualitative interviews, with the clients of the Hillsborough County SpNP, identified six main themes integral to their evacuation decision making process: risk perception, evacuation barriers and media (see Figure 5). Risk perception, was found to be the major ov erriding theme and directly affected the decisions SpNP clients make, when it comes to following evacuation orders by local emergency management. During the development of the model, representing how society influenced the evacuation decisions of clients of the SpNP, it wa s recognized that there was no clear delineation between the themes found to explain how clients constructed their meaning of the SpNP (research question 2). Consequently, the model developed in response to research questi on 3, was a continuation of the model developed for research question 2.

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People with Special Needs SpNP Registration Knowledge Barriers SpNP Knowledge Support System Media Cultural Expectations Risk Perception Evacuation Decision Evacuation Barriers Registration Barriers Figure 5: Model of how society in fluences the evacuation decisions of SpNP clients. 361

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362 The cultural expectatio n, of the roles of per sonal support systems and the government was found, to be directly relat ed to perception of risk. During the interviews, it was apparent that percepti on of risks played a major factor in the decision process, when deciding to evac uate or shelter-in-place. The media directly affected several of the other themes: SpNP knowledge, cultural expectation, evacuation barriers, and risk per ception. The media was often cited, as the main factor in the ev acuation decision making process. Prior Theoretical Research A review of the literatur e, did not find any resear ch studies examining the role of a SpNP, during community evacuati on. In fact, there was only one study, which focused solely on the disaster behaviors of people with special medical needs. This 2007 study, of 15 Florida counties, conducted by the Florida Department of Health Task Force for Pe rsons with Disabilit ies and Preparedness, found that only 19 percent of people with disabilities had previously discussed their emergency plans with their health care prov iders. This lack of involvement by health care providers is as major issue, as they are in direct contact with people with special needs, unlike the DOH or emergency management officials. Previous research into evacuation of the general population, suggested that people not physically healthy, ma y have greater difficulties evacuating, due to their medical condition (Riad, Norris, & Ruback, 1997). People for whom living day-today was an ongoing crisis were not likely to be able to protect themselves against

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363 the crises that disasters produce (Tierney, Lindell, & Pe rry, 2001). Thus, they are dependent on the support provided, by in formal and/or formal support systems. Risk Perception One of the earliest modes developed, to explain the primary issues involved in the decision-making process people un dergo before evacuating; was developed by Perry, Lindell and Greene in 1980. T hough their research, they found three critical issues influencing evacuation decisio ns: 1. the threat is perceived to be real; 2. perception of the level of personal risk; and 3. existenc e of a preexisting evacuation plan. Later research, suggested that evacuation, was largely the result of people perceiving themselves as being in danger and believing that evacuating an area was both necessary and beneficial for their wellbeing (Fitzpatric & Mileti, 1991). Lindell and Perry (1992), found th at peoples evacuation actions were not always in their best interest and through their resear ch developed the Protective Action Decision Model, which is a decision tree of four questions that people address when deciding to evacuate: 1. does the thre at really exists, 2. was protection from the threat required, 3. was protection from threat feasib le, and 4. the believe that protection from threat w ould reduce negative outcomes. Why evacuate if you are relocating to an area that was less safe than where you lived? In this SpNP study, it was found that many people were afraid to evacuate to a SpNS, due to fears for their safety and/or being exposed to diseases.

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364 It was determined, that 92.5% of Afri can Americans living in New Orleans, did not evacuate before Hurricane Katrina (E lder, Xirasagar, Miller, Bowen, Glover, and Piper, 2007). A qualitat ive study, of African-Americans from New Orleans, who evacuated to Columbia, SC, found th ree themes: perceived susceptibility, perceived severity of hurricane, and perceived barriers to evacuation (Elder, et al., 2007). Perceived susceptibility was low, due to confidence base on prior hurricane experience and optimism about Hurricane Katr inas outcome (religious faith). Many participants reported, t heir perception of the seve rity of Hurricane Katrina was affected by conflicting messages from the mayor and governor, causing confusion about the need to evacuate. Pa rticipants reported, perceiving two major barriers to evacuation: money and community networks (Elder, et al., 2007). Money was a major problem for many people, especially those dependent on government subsidizes, which arrive on the first of the month. Hurricane Katrina arrived on August 29, the end of the month, when many were broke. Consequently, many report ed, they could not afford to buy gas or obtain transportation, to evacuate. Community networks problems identified were twofold. First, because of nei ghborhood crime, many people were afraid to evacuate. Because they could not protect themselves when traveling to shelters and they feared their home would be ransacked if evacuated. Second, rumors were circulating in the community that law enforcement was blocking paths to shelters, stopping the poor from passing through midd leand upper-income neighborhoods. The media coverage in New Orleans must have been very different than what this researcher observed in Tam pa, FL, where the media was questing why

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365 people in New Orleans were not evacuating. It also seems ironic that people were dependent on God to protect them from Hurricane Ka trina, but blamed the damaged caused by the hurricane on the government, instead of being an act of God. The results of this SpNP study, suggests that race does not play a factor in the evacuation decision, as 40 percent of African-Americans plan to immediately follow evacuation orders. In comparison, 36 percent of Caucasia ns reported, they would follow evacuation orders immediately. Previous research, also suggests wom en, were more likely to perceive a disaster event as serious (Cutter, 1994; Fothergill, 1996; Riad, Norris, & Ruback, 1997). Consequently, women were more lik ely to evacuate, when requested. In this study of the SpNP, there were 20 fe males and 10 males interviewed. Seven of the females (35%) and four of the male s (40%) stated, they would immediately follow evacuation orders. Suggesting, gender was not an issue in the evacuation decision making process, made by people with special medical needs. Evacuation Past research, suggests that households we re more likely to evacuate if the household: had young children, had a higher than average income, had only a few people living there, had prio r evacuation preparations, and/or was part of a multiunit structure (Peacock, Morrow, & Gladwin, 1997). In this study of SpNP clients, six people lived in high-rise building for lo w-income adults, half of whom planned to immediately follow evacuation orders. T he others did not seem to realize, the

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366 buildings administration would force ever yone to evacuate, if deemed necessary. Four of the people in this study lived in multi-unit st ructures, with three (75%) planning to immediately follow evacuations orders, due to either living in a flood zone or the presence of dangerous trees. One person interviewed commented, that even though they lived in a flood zone t hey would wait to evacuate, until it actually started to flood. A study for evacuation of Hurricane Elena in 1985, found five exogenous and five endogenous variables, affecting evacuation decisions (Nelson, Coovert, Kurtz, Fritzsche, Crumley, & Powell, 1989). The five exogenous variables were: geographic location (evacuation zone), health problems, income, age, and hurricane experience. The five endogenous variables were: knowledge of hurricane guide, use of hurricane guide, pets, type of home, and evacuation behavior. The researchers found that awar eness of hurricane guide and its actual use were two different variables. Variables most important in predicting if person would evacuate: living in an evacuation zone and type of home (smaller or mobile) (Nelson, Kurtz, Gulitz, Hacker, Lee, & Craiger, 1988; Nelson, C oovert, Kurtz, Frit zsche, Crumley, & Powell, 1989). Most import ant in predicting if person would not evacuate: storm not severe, not living in flood zone, st ructurally sound home, transportation problems, lack of knowledge because new to area, and just did not feel like evacuating. Preparedness in the form of general knowledge and information facilitates evacuation, by enabling more appropriate re sponse behavior (Faupel et al., 1992).

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367 Individuals with exper ience with similar disasters were found to be more likely to have pre-event plans and have purchased evacuation supplies (Hutton, 1976; Norris, Smith, & Kaniasty, 1999). In this SpNP, five of the eight people (62.5%) with hurricane experience had a disaster plan compared to (77.3%) with no hurricane experience. Of the eight people with hurricane experience six reported, they had evacuation supplies (75%), compared to (59.1%) with no hurricane experience. Suggesting, while those with hurricane experience are more likely to have evacuation supplies, they are less likely to have a pre-existing disaster plan. All of these variables were also identifi ed by SpNP clients, interviewed in this study, except for problems with transportati on. Transportation was not an issue in this study, because the county has made arrangements to ensur e that appropriate transportation to shelters is provided to everyone, enrolled in the SpNP. Though transportation could become an issue, for thos e 18 clients who plan to ignore initial evacuation orders and wait until they are certain that the storm will strike Hillsborough. It was clear t hat they did not realize, when wind speeds reaches 40 miles per hour, the county would no longer provide transportation, because of safety reasons. Evacuation Barriers A 2007 survey by Harvard School of Pub lic Health, of residents of counties within 20 miles, of the coast in eight states Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South Ca rolina, and Texas found that 31% of residents would refuse government offi cials request to evacuate due to a

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368 hurricane. Higher than the survey average, 33% of Florida residents reported, they would not evacuate for a major hurricane. Th is is compared, to 23% who said they would not evacuate in a 2006 survey (J ohnson, 2007). In this SpNP study, 19 (63.3%) do not plan to immediately follow evacuation orders, but 29 (96.7%) would follow evacuation orders if sure the hurricane would make landfall nearby. Being poor may mean not havi ng the financial resources, to relocate to safe shelter (Miller & Nigg, 1993). As mentioned earlier this was not relevant in this study of SpNP clients, as anyone registered in the program, was provided free transportation to their assigned shelter. A review of the literature suggest ed that households are less likely to evacuate if: older individuals in househol d or if household members were ethnic minorities (Peacock, Morrow, & Gladwin, 1997) In this study of a SpNP, there were six Hispanics, two (33.3%) plan to immediately follow evacuation orders, compared to 40 percent of African-Americans and 35.3 per cent of other Caucasians. Suggesting that for those in the SpNP, ethnic minorities are just as likely to evacuate as Caucasians. In th is study of SpNP clients, of the 30 households, 12 (40%) had an elderly resident 60 or older; one being a caregiver of a grandchild. Of the 12 households, wit h an elderly resident, four (33.3%) indicated they would not immediately evacuate when requested. The same percentage found for the general population in Flor ida (Johnson, 2007). A review of the literature, suggest ed that households are less likely to evacuate if there has been a prior experienc e with that type of disaster, (Peacock, Morrow, & Gladwin, 1997). Weller and Wenger (1973), hypothesized that

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369 experience with a particular disaster agent (e.g., seasonal hurricanes), rather than enhancing preparedness may instead produce a subc ulture of complacency. This occurs, because households learn to live with the hazard and accept losses encored. Subcultures can develop, that actually encourage risk-taking behavior (e.g., hurricane parties). In fact, some disaster experi ences may reinforce feeling of relative invulnerability, leading people to discount real threats (Drubek, 1986). In this SpNP study, seven of 18 people (38.9% ) with disaster experience planned to immediately follow evacuation orders. This is compared to four of 12 people (33.3%) with no disaster experience. Of the eight people w ho had experienced a hurricane, four (50%) plan to evacuate immediately, compared to (31.8%) of people with no hurricane experience. The accuracy of past evacuation warnings, enhanced the chance that future evacuation warnings will be followed. Past experiences with disa sters that are not severe, may lead people to think that di sasters are not anything to worry about (Lindell & Prater, 2000). Also people walk away with dissi milar lessons from near misses and minor disaster experiences, than they would from disaster experiences involving emotions of intense fear and considerable human and physical losses in the community (Lindell & Prater 2000). In this study of SpNP clients, those who realized that in 2004 Hills borough County was not affected by hurricanes, 66.7 percent planned to immediately follow futu re evacuation orders; as compared to only 16.7 percent of those, who held false beliefs that the county had experienced hurricanes that year.

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370 During the evacuation for Hurricane Elen a it was found that 77 percent left their pets at home, 11.4 percent took pet s to shelter and left them in car, 3.5 percent took pets to a friends or relative s house, and only 3.5 percent took pets to a pet shelter (Nelson et al., 1988). Currently, it is estimated that there are only 19 Pet Evacuation Centers in Hillsborough Coun ty, which can only provide shelter to 714 pets (Hillsborough County Special Needs Evacuation Plan, 2008). In this study, only eight of the SpNP clients (26. 7%), owned pets. Many citing they would like to have a pet but could not, because of resident regulations or medical problems. Of the eight peopl e with pets, seven said they would not evacuate, without their pets and one repor ted she would leave her pet to fend for itself. In a review of the literature, it was suggested that households, were more likely to evacuate if: ordered by authorities and warnings were given in person rather than by the media, (Peacock, Mo rrow, & Gladwin, 1997). In contrast in 1998, Dow and Cutter reported household ev acuation decisions were being influenced more by the media, than by actual warnings from emergency management. Media influence was supported by the findings from this SpNP study. There were 18 people (60%), who st ated, they would not immediately follow the recommendations of emergency management officials, to evacuate. Rather, these individuals would wait, until they were sure that the hurricane would make landfall in Hillsborough, using information presented by the media.

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371 CHAPTER VI CONCLUSIONS AND RECOMMENDATIONS Introduction This chapter begins with a discussion of the original themes identified from the data, using Grounded Theory as the methodology and Social Construction Theory, as the theoretical framework for this study. The chapter then continues with a discussion of the strengths and lim itations of the study and a general description of the findings for each of the three research questions. Recommendations for public health practi tioners, in the fi eld of disaster management are offered. Finally, the c hapter concludes with implication and recommendations for future research, for public health researchers and practitioners. There are several factors that should be kept in mind, when looking at the results of any qualitative study concerni ng: the researcher, the participants, and the context of the study. The realization of these lim itations and their qualitative roots does not, in any way, w eaken the principles of the study. Instead it enhances the finding of this study by making t he fundamental hypothesizes, foundations, and methodology transparent, and open to eval uation by other researchers.

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372 As with any qualitative study, the re searcher is the primary actor and through symbolic interaction had eminent influence on the researchs procedures and outcomes. The researcher initia lly developed the studys framework, conducted focus groups, interviews, and developed models based on personal interpretation of the statements and expe riences communicated by participants. The researcher also determined what literature was relevant to the findings. By remaining grounded in the participants pers pectives and only using the literature as a means to better understand their vi ews, this study fo llowed appropriate qualitative research techniqu es. Stakeholders, elites, and clients in the SpNP, interviewed gave power to the researcher to give voice to the data, when they could not. Strengths and Limitations Collectively four criteria are combined to determine the level of trustworthiness of the result s of an inquiry: cr edibility, confimability, dependability, and transferability (Lincoln & Guba, 1985; Ulin, Robinson, & Trolley, 2005). As explained in the literature, qualitative inquiries are inherently different from quantative inquiries, as expressed by different language and concepts. In qualitative research credibility replaces inte rnal validity, transferability replaces external validity, dependability replaces reliability, and confirmability replaces objectivity (Lincoln & Guba, 1986).

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373 Credibility Focusing on conviction in the truth of the findings, credibility is dependent on: a) the findings showing a logical relationship to each other, b) the findings being grounded in and substantiated by, th e narrative, and c) does the population under study consider reports to be a ccurate (Miles & Huberman, 1994). The credibility of qualitative research depends on the skill, competence, and rigor of the person doing the fieldwork (Guba & Lincol n, 1981). A tactic used by grounded theorist is combining several qualitativ e data collection tools; focus groups, interviewing, and document analysis. As each source of data has strengths and weaknesses, using a combination of di fferent types of data collection tools increases the validity of the study, as the strengths of one approach compensates for the weaknesses of another approaches (Marshall & Rossman, 1989). This process, of utilizing a diverse range of data sources to validate and cross check findings in the effort to increase clarity or cr edibility is referred to as triangulation. To collect high-quality qualitat ive data that is credible re search strategy requires that the researcher: be neutra l, collect data systematically, have rigorous training, and have external reviews. Strengths The researcher had been a member of the SpNP Planning Committee for over 10 years, at the time of this study. As an inside r, the researcher had already gained trust and developed rapport with other members of the committee. By pre-

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374 establishing creditability with stakeholders and elites, the researcher was able to reduce bias. The researcher adopted a perspective of neutrality and did not set out to prove any preconceived theory. Nor did the researcher manipulate the data, so that the results confirmed any preexisting believes. Instead, the researcher was committed to allowing the participants in t he study, to communicate the world as they understood it. The researcher tri ed to be reflexive as possible, through developing a conscious of self-awareness. This was accomplished by persistently being attentive to personal perspectives and being aware of personal ideological, society, cultural and political believes, and linguistic origins. Thus, praxis was practiced by the researcher, who dev eloped an appreciation for and recognizing that personal actions expressed the influences of social, political, and moral values obtained during his life. One of the strengths, of the sampling methods, was that participants were randomly selected and were contacted up to four times, to request their participation in this study. Once the researcher determined a need to include SpNP clients, assigned to ARC shelters and hospitals, this was accomplished through purposeful sampling. Near the end of the study, it was determined that SpNP clients assigned to Shriners Hospital were under-represented and consequently participants in this population were targeted, through over-sampling. Materials from the media were benefic ial, in allowing the researcher to capture the widest possible variations on t hemes, as they were discovered. The reviewing of official records, provided information on actions taken by an agency,

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375 along with the agencies justification for and defense of those actions. One of the most important advantages of collecti ng naturalistic records and documents was the almost complete absence of researcher influence on the data. Transcripts of everyday conversations, news reports, m aps, legal documents, community plans, scientific papers, letters, and official document s were features of the social fabric that the researcher had had no part in producing. Focus groups were a useful starting point for developing questions that were later used in individual semi-struc tured interviews, with SpNP clients and elites. Through focus groups the re searchers learned about stakeholders opinions, attitudes, experiences, and pers pectives and observe interpersonal interactions on a topic. Participants in the focus groups were selected through stratified random sampling techniques, to ensure all subgroups in the SpNP Planning Committee were represented. Du ring the focus groups, comparisons that participants made among each others expe riences and opinions were a valuable source of insight, into complex sets of behaviors and motivations (Morgan & Krueger, 1993). Since the researcher coul d direct discussion in a focus group, a large amount of data was collected, in a limited period of time. The strength of the semi-structured inte rview was the flexib ility, spontaneity, and responsiveness, offered the interviewe r. Questions could be personalized, to deepen communication, which increased the concreteness and immediacy of the interview questions (Patton, 2002). Unlik e a formatted list of questions, the semistructured interview allowed the researcher to identify and pursue topics, as they emerge during the interview (Rubin &Rubin, 1995). The semi-structured format

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376 permitted participants to open up and provid e their perspectives (Finch, 1999). During the focus groups and semi-structured interviews, all questions were openended. Asking of open-ended questions, enabl ed the researcher to develop an understanding and capture view s of participants, without predetermining points of view through previously selecting categories for topics of interest. The asking of open-ended questions allowed the researcher to obtain copious, rich information. Semi-structured interviews with elites, t hose who were particularly knowledgeable about the inquiry setting, provided insights that were extremely useful in helping the researcher understand, what was happening with the data and why. Limitations Researchers of Social Constructi on Theory are to remain neutral and objective, devoid of social and cultural presumptions (Bernard, 2000). Some researchers argue that through their creat ive activity, humans construct the realities of society and social realities become the external, objective reality to the individual in that society (Ore, 2003). The indi vidual then internalizes this reality so that it becomes part of their consciousness. It is argued that social constructionism is internally inconsistent, contending while constructionists identify their focus as subjective judgments, the analysis usually assumes some knowledge of objective condition (Woolgar & Pawluch, 1985a). Thus social constructionism often involves the selective application of skepticism, allowing or denying the existence of phenomena, according to the analysts atti tude towards them (W oolgar & Pawluch, 1998).

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377 Qualitative research requires, that t he researcher has received disciplinary training and rigorous preparation (Patton, 2002). While this researcher had taken one graduate course in qualitative methods and had participated in two previous qualitative studies, it would be a reach to say that he was properly trained when starting this study. The researcher dev oted a great deal of time and financial resources in reviewing the qualitative liter ature. But the lack of experience was evident, as the first few interviews result ed in obtaining short direct answers from those interviewed. Over time, the re searchers data collection techniques improved, as apparent from t he fact that the data obtained from interviews became richer and richer, over time. The perspectives of elites are limited, selective and biased. Data obtained from elites naturally repr esented their perceptions and not necessarily the truth as presented by the data. To ensure that the perceptions of the elites did not influence the findings, the researcher was careful to ensure that observations made in the field and from the data collected during in terviews with stakeholders and SpNP clients were not confounded. Confirmability Reliability of results was also insured by the variety of techniques used to insure validity such as: use of triangulation techniques, key-informant or elite debriefing, negative case analysi s, and the development of rich data by providing a detailed description of all information. Elite debriefing and negative case analysis, helped to perform a confirmability audit to attest that findings and interpretations

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378 were supported by the data and were internally consistent. Finally, keeping a reflexive journal, a daily diary, helped with a dependability audit by discussing the appropriateness of inquiry decisio ns and methodological shifts. Strengths Application of Grounded Theory methodol ogy, enabled the researcher to begin the building process to describe how Hillsborough Count y developed its definition of special ne eds and how stakeholders and elites negotiated what services to provide through the SpNP, in the event of evacuation for a hurricane. Following Grounded Theory methodology, several qualitative tools were utilized in the process of collecting data on the SpNP, from a number of different sources. There was a review of the published liter ature and media materials; 40 in-depth, semi-unstructured interviews; and three focu s groups. This triangulation of data, allowed the examination of the SpNP from the views of a variety of community stakeholders, increasing the validity of the data collected. Previous research into evacuation, has either been quantative in nat ure, or utilized only the qualitative technique of asking predetermined openended questions (Creswell, 1998). During the early part of gathering data, the researcher watched for emerging patterns. As these patterns emerged they were confirmed or disconfirmed, with the collection of new data fr om the professional literature and through interviews with participants in the study. The quality of analysis must be asse ssed by an expert audit review, examining the process and the product (Linco ln & Guba, 1986). For this study, the

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379 expert audit review, was conducted by mem bers of the researchers dissertation committee. Limitations The expert audit review for process was conducted, by the dissertation committee, during the reviewing of the di ssertation proposal. The review of the product was conducted, during the revi ew of the manuscript, before the dissertation defense. A limitat ion to this study was that the experts were not very involved, during the data collect ion or data analysis process. Dependability The degree, to which findings can be replic ated, by other researchers, is an essential evaluation of quantit ative reliability. The keeping of a reflexive journal, a daily diary, can help with a dependability audit, where the appropriateness of inquiry decisions and methodological shifts were discussed. The diary outlined procedures leaving a clear trail, allowing ot hers to know with reas onable precision, how and why decisions were made at eac h stage of the study. In qualitative research rigor, refers to the systematic approach to the research study and credibility is enhanced through the application of rigorous techniques and methods, resulting in the collection of high-quality reliable data (P atton, 1999). In qualitative research the studies rigor will be determined by principles of reflexivity, validity, reliability, and transferability.

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380 Strengths A diary was kept, to help the researcher collect information on the focus groups and interviews with SpNP client s and elites. After each focus group and interview, the researcher wrote down personal observations as to actions of participants and the physical environment wher e the interview occurred. In the diary, new concepts were identified and methodological shifts discussed. Limitations It should be noted, that the researcher di d not write in the diary, on a daily basis. While the researcher made an atte mpt to carry the diary at all times and wrote down ideas on a timely basis, entries were not made daily. Transferability Transferability is related to external va lidity and to generalizability. While internal validity was being able to generaliz e within a group or setting, external validity was the ability to generalize the resu lts of a study to other persons, settings and times (Charmaz, 2002). Transferabilit y of qualitative studies helps the development of a theory, which can be ex tended to other cases, if samples were conscientiously chosen to symbolize vi ewpoints and experiences reflecting the research questions fundamental issues (Miles & Huberman, 1994). Triangulation of data collection tools, in a study of a communities program, helps increase the transferability of results to other communities

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381 Qualitative research places findings in a social, historical, and temporal context. The researcher must be carefu l about, even suspicious of, the possibility or meaningfulness of generalizations ac ross time and space. Instead emphases must be placed on comparative case analyses and extrapolating patterns for possible transferability and adaptation to new settings (Patton, 2002). Patton (2002) stated that tr iangulated reflexive inquiry, involves three sets of questions. First, self-reflexivity challenges the researcher to reflect on personal epistemologies, the ways knowledge is understood and how knowledge is constructed. Second, there should be refl exivity about the epistemologies of those individuals being studied. Finally, there should be reflexivity about the epistemologies of the audience who will re view and evaluate the research findings. Strengths This study was conducted on a single community, Hillsborough County, with a small number of participants. The purpose of this study was to explore in depth the experience of these spec ific participants, not to dev elop a theory that would be transferable to all communities. Any atte mpt to do so, would not be in keeping with the purpose of this study. Confidence in transferability from samples to populations was dependent on representativeness (Tashakkori & Teddlie, 1998). By sticking to the professi onal criterion for trustwor thiness, the researcher developed a foundation for the transfer ability of the studies outcomes. Consequently, results from this study ma y contribute to the understanding of a communitys experiences, when developing a program to care for residents with

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382 special medical needs, during a hurricane ev acuation. By using good qualitative methodology and trustworthiness, results of this study could provide a foundation for future research, into the development of special needs programs in other communities. A Social Construction Theory framework, helped to provide insight into how the participants understanding of the need fo r an SpNP was a product of that individuals culture and experiences; and how societys current social and economic situation shapes program devel opment. The social constructionist approach helped the researcher understand the reality of this SpNP, as socially constructed by this community by ex amining personal exper iences, opinions, knowledge, attitudes and behaviors. Usi ng Social Construction Theory facilitated access to the public discourse concerning important and timely matters, such as community development of a SpNP. By understanding Hillsborough Countys experiences in developing their SpNP, it may aide other communities in the development of their own program. An advantage of combining Grounded Theory methodology and a Social Construction Theory framework was that bot h accept the existence of multiple realities held by the various stakeholders in the community, which facilitates a richer description of the program through the different definitions of the SpNP. Stakeholders such as the media, mem bers of the SpNP Planning Committee, program clients, and elites all had their c oncept of special needs and what services should be provided in the event of a hurricane evacuation. Both theories, also maintain that because of the multiple real ities held by researchers, there was more

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383 than one way to interpret the qualitative data collected. Another advantage of combining Grounded Theory methodology and a Social Construction Theory framework was both promote t he belief that what was bei ng studied was subject to change over time. With this in mind the resu lts of this study are similar to taking a snapshot of the SpNP, a program, which will continue to change over time as social conditions, economics and knowledge change. Limitations As with any study where participation was voluntary, those individuals agreeing to participate may be di fferent from those refusi ng to participate. SpNP clients were only paid 20 dollars, for their par ticipation in this study. A sum so low, that many potential participant s may have felt that it was not worth their time, or not enough to invite a stranger into their homes. Also, due to lack of funding to hire translators, this study was restricted to participants who spoke English. Consequently, the results of this study can not be generalizable to the entire population of special needs resi dents, in Hillsborough County. There were also issues of limitations of the SpNP databas e. For instance, demographics on income, race or ethnicity we re not available. Another issue with the SpNP database was that it was up-to -date, as there were hundreds of people registered, who were deceased or no longer required the program. According to the DOH, during this study there were approximately 4,000 peop le registered with the program. After the recent re-regist ration process, approximately 1,000 names

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384 were removed from the database, as they no longer required the services of the program. Results of this study were based upon self-reports. The researcher asked SpNP clients to comment on what actions they would take, if there was a future hurricane evacuation. The problem was t hat those actions people think they would perform in an emergency situation and what actions they actually take, may be totally unrelated as suggested by research on the relationship between attitudes and actual behavior (Fishbein & Azjen, 1975). Research Questions Findings This was the first study to explore a communitys development and understanding of a SpNP, and t he intended outcome of this study was to develop models, which set the foundation for futu re researchers in their formation of theoretical perspectives on a communitys development of programs to help people with special needs during evacuation for a hurricane. The following research question initially guided the study: 1) How did community stakeholders in the Hillsborough County SpNP perceive the meaning of community responsibility for individuals with special medi cal needs, in the event of a hurricane evacuation and what factors affected the development of the program?; 2) How did individuals registered in the SpNP construct t heir understanding, the meaning of the program?; and 3) How did society infl uence evacuation decisions made by individuals registered in the SpNP?

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385 Community Development of a SpNP Focus groups with stakeholders and in-depth, semi-structured interviews with elites were conducted, to under stand how members of the SpNP Planning Committee perceived the meaning of communi ty responsibility for individuals with special medical needs, during hurricane ev acuations. Three main themes were identified: disaster experience, coa lition building, and collective moral responsibility. Disaster experience was found to have two sub-themes: personal disaster experience and institutional disaster experi ence, which were found to be directly related to each other. Types of disaster experiences were: primary, secondary and tertiary. Primary disaster experience occurs, when the individual or institution actually experienced a disaster a hurri cane. Secondary disaster experiences occurred, either through conversations with fa mily and friends or by participating in recovery assistance in another community. Finally, tertiary disaster experiences were delivered worldwide through visual images, as provided by the media. The realization of the need for a community to preplan for potential hurricane strikes, was directly related to the second major theme, coalition building. Coalition development wa s found to have three sub-themes: stakeholders, leadership, and barriers to program development. The stakeholders promoted claims, directing the developm ent of the SpNP and made the ethical decisions as to who would receive what type of services. Educational outreach was a major focus of the stakeholders, with the goal of motivating everyone with

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386 special medical or transportation needs, to register for the program and prepare for future evacuations. Another issue with coa lition building was encour aging all agencies, who dealt with the special medical needs population, to become members and be educated as to the specifics of the progr am. Of particular concern was getting medical professions involved and properly trained, so that they could identify, register, and educate clients for the program It was found that some stakeholders only participated in the progr am, when mandated by stat e legislation. Those stakeholders who were forced to partici pate, often did so begrudgingly and did not fully buy into the SpNP. The sub-theme, leadership was found to be the strong point of the SpNP. Over the years, Hillsborough Countys Emergency Operations Center, has diligently worked to bring stakeholders to the table and developed an environment encouraging collaboration and communication. Consistencies of leadership at the EOC, who not only offered a clear vision of the future of the SpNP, but built in flexibility to change, allowed the SpNP to change directions as new resources and stakeholders were brought to the table. As a re sult, the SpNP developed in Hillsborough, was often used by other communities as a model, in the development of their SpNPs. Consequently, many stakeholders have found their agencies plans held up as models for sister agencies, installing a sense of pride in being a part of something special. There were several factors discover ed that acted as barriers to the development of the SpNP: legislation, identifying targeted population, educating

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387 targeted population, staffing of SpNSs, tr aining shelter workers, resistance to change, and power struggles. Legislation written concerning SpNPs were often vague and did not provide specific guideline for counties to follow in development of programs. This has resulted in inconsistencies between programs and created confusion among clients, as to what servic es are to be expected. Since the SpNP is voluntary, there is also the issue of identifying people in the community, who would qualify for the program. Staffing of SpNS has been an issue for ma ny years, but recent legislation has mandated that t he DOH be responsible for provid ing appropriate staff. The issue now was that public health nurses, who have been training in providing preventive health care services to their c lients, are being asked to provide direct medical care to patients with chronic health issues. Something that public health nurses, have not been specifically trained to do. Another staffing issue was that many of the services provided in the Sp NSs, do not require trained nurses, but rather staff to provide pers onal assistance. Individual s are needed to lift people off cots and transporting them to restrooms, duties that require physical strength not medical training. Another issue with staffing SpNSs was providing for the care of the workers families. Many nurses have children or disabled family member to care for and no arrangements have been made by the SpNP, to ensure that these individuals are cared for. Resistance to change was identified as a problem for some of those agencies mandated to participate in staffing t he SpNSs. This was especially true, for workers who have been with the agency for some time and are now being

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388 required to accept new duties. Part of this resistance to change included obtaining knowledge of the SpNP, which could be rela yed to people, served by the agencies. This was especially found to be true of agenc ies, having direct contact with people with special medical needs, such as Home Health Agencies. Another underlying problem, to the development of the SpNP was the pr esence of more than one emergency management office, in Hil lsborough County. Two emergency management offices currently exist: a county EOC and Tampas EOC. This division, though not by intention, leads to less communication, possible duplication of services, splitting of the available pool of funds, and no clear single authority. The third and central theme was found to be collective moral responsibility, which had three sub-themes: cultural ex pectations, personal responsibility, and government responsibility. It was apparent throughout the interviews with stakeholders and elites, deemed the co mmunity had a collective moral responsibility, to protect people with s pecial medical needs during a hurricane evacuation. Government workers are expected to be avail able when disaster strikes. Cultural expectations demand t hat police, firefighter s, emergency medical services, and health care workers put aside personal needs in times of disasters and respond to the needs of the general public. It was also expected, that those who are able take care of their own needs, during an emergency do so. This includes, taking care of family and pets. When people in the community are not able to provide for their own needs, they become dependent on the government, which was responsible for the development of legislation and programs to meet these needs. This development of l egislation and programs, which assign

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389 agencies with specific responsibilities in both SpNPs and SpNSs has been a difficult issue, due to the presence of l obbyists. Another issue is government health care programs like the SpNP, oper ates under a medical model, instead of an ability focused model. Consequently, anyone on oxygen was to be admitted into a SpNS, even though modern technology has developed oxygen delivery systems, which are not electric dependent. M eanwhile, frail individuals who barely maintain independence in their homes are fo rced to evacuate to public shelters, where they struggle to care for themselves. SpNP Clients Construction of Program Knowledge In-depth, semi-structured interviews with SpNP clients and elites were conducted, to understand how clients constr ucted their meaning of the program. Five major themes were identified: regi stration barriers, SpNP knowledge, support systems, cultural expectations, and the media. Cultural expectations were found to be the central theme, explai ning how clients constructe d their knowledge of the SpNP. Registration barriers consisted of a lack of knowledge, mistrust of government and denial. The biggest barriers identified as barriers to registration was, the lack of program knowledge in the medical profession. Neither HHA representatives nor physicians knew much about the program. The clients lack of knowledge, concerning the SpNP could be explained, by the lack of knowledge by many stakeholders and difficulties accessing the Hurricane Guide.

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390 Clients with good formal support systems were less likely to perceive themselves at high risk and often reported, they would not imm ediately evacuate. Many of those clients whose social suppor t system consisted mainly of friends, were less likely to evacuate when mult iple evacuation were requested during a hurricane season, because they did not want to become a burden. The study found a paradox re lated to cultural expectations. On one hand, people are expected to take care of t heir own needs and failure to do so was considered a sign of weakness. On t he other hand when a person has difficulties caring for themselves because of financial or physical difficulties the government was expected to develop programs to care fo r them. In Americ a, the media plays a vital role in the formation of public expectations and opinions. The media often fails to educate people, on the consequences of their actions, by displacing the blame for lack of personal preparedness and planning onto the government. Societies Influence on SpNP Clients Evacuation Decisions In-depth, semi-structured interviews with SpNP clients and elites were conducted, to understand how society influences the evacuation decisions made by SpNP clients. Three major themes we re identified: risk perception, evacuation barriers, and the media. The central them e, explaining how so ciety influenced the evacuation decisions of Sp NP clients was determined, to be risk perception. Though it was recognized, there was no clear delineation between themes and many overlapped like risk perception, cultural expectations and the media.

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391 Those SpNP clients, perceiving themse lves to be at high risk were more likely, to plan to immediately follow evacuation orders. Ot hers did not feel that they were at risk and were likely to remain at home, until absolut ely sure that the hurricane would strike. Those SpNP clients, with strong support systems consisting of professionals or family were less likely to evacuate, immediately upon request. Several people commented they would resist evacuation, bec ause they could not take their pets to the shelters. Others would not evacuate immediately because of fear of theft, crowded conditions, and exposure to infectious diseases. Many SpNP clients appeared to live in a state of denial, not believing that it was likely that a hurricane would strike the county, becaus e of its geographic location. This was supported, by the fa ct that since 1985, there have been nine evacuations for hurricanes that c hanged directions, missing the county. Many SpNP clients expressed that the media coverage of Hurricane Katrina had for the first time, made them realiz e the amount of damage a hurricane could cause. But these same media account s of people who evacuated to the Super Dome in New Orleans being beaten, robbed, raped and killed created a fear of evacuating to the Sun Dome in Hillsborou gh County. These fears remained, even after the media retracted the majority of their stories. M any clients felt, by watching the weather reports provided by the media, they could predict whether or not the hurricane would actually make landfall in Hillsborough. Also, an issue was the lack of coverage of hurricane by the Spanish me dia, forcing Spanish-speaker to tune in to English stations for relevant information.

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392 Implications and Recommendations for Public Health Todays health care delivery systems has resulted in many people receiving medical services at home, for conditions that in the past, were provided only in hospitals, nursing homes, or other facilities. Thus, living independently is a freedom enjoyed by a growing se gment of the populat ion. In times of disasters, this care can be difficult to maintain, especially if transportation on roads is compromised. Flooding caused by Hurricane Katrina in New Orleans, highlighted that emergency management is not prepared, to properly respond to the needs of people with mobility restrictions. An estimated 1,800 people died in Hurricane Katrina and its aftermath, fatalities were disproportionately elderly, with 71 percent of the victims older than 60, and 47 percents over the age of 75 (Cah alan & Renne, 2007). Most of the elderly killed during Katrina, most were disabled, had mobi lity restrictions, and lived independently in the community. It is important, that those who are most vulnerable during a disaster be located, so that they can be assisted during an emergency. Consequently, the challenge of addressing the medical needs of the population, in times of disaster is a problem for emergency managers and health care providers (Fernandez, Byard, Lin, Benson, & Barbera, 2002). This study highlights the importance of collaboration an d the forming of coalitions to address the needs of vu lnerable populations. A problem with coalitions is sustainability. For exam ple after the 2005 hurricane season the SpNP Planning Committee meeting in 2006, had over 120 representatives from different agencies present. Every HHA in the c ounty and many advocate groups for people

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393 with disabilities were present and were acti vely expressing their concerns that the SpNP did not meet the needs of all people with disabilities. At the 2008 SpNP Planning Committee meeting, only 42 representatives were present, a third of those present in 2006. It should be noted that only one HHA representative out of 54 agencies and only one advocate group for peo ple with disabilities was present at the meeting. The future of coalitions should invo lve the use of technology to connect stakeholders, who could remain in their o ffice during the meetings, where they only have to focus on content relevant for their agencies needs. In this manner, agencies with vast experience and knowle dge, concerning the SpNP may be able to better communicate and to help those with less experience. This may mean, representatives from the EOC and DOH will no longer be in charge of the SpNP Planning Committee meetings, but it becom es a joint operation controlled by the stakeholders themselves. It is also believed, that the EOC and DOH should develop an assessment tool, which should be used by organizati ons, to assess their preparation and response plans. This assessment tool should be updated yearly, with those agencies exhibiting great improvements, being publicly rewarded to celebrate their achievements. This public recogniti on should help motivate agencies, to continually update and improve their plans, resulti ng in a better SpNP. For example, there needs to be be tter planning by CMS for the ca re of their clients. There also needs to be a better system developed to assign workers from the various HHAs to the different shelters, a mechanism that would help the county

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394 open a much needed fourth SpNS. Finally, it is clear that ther e needs to be more planning with mental health agencies, as to the care for their clients, one of the major weaknesses with the SpNP. Curr ently, many people with mental health issues (e.g., autism and severe mental illnesses) are not well served in the shelters, due to the lack of timeout s pace and the absence of mental health professionals. Many of the issues involving CMS, HHAs, nursing homes, FAHAs, and mental health agencies will have to be addre ss through legislation. But this legislation must be develope d, with the direct involv ement of representatives from emergency management and t he DOH, along with the agencies involved. Once the legislation is dev eloped, there must be a hands-off policy, so that lobbyist cannot weaken the l egislation in favor of the agencies involved. Far too often in the pas t, lobbyists have been able to render meaningful legislation to t he point of being useless, much to the benefit of the agencies involved. There is one legislative issue that must immediately be addressed, concerning those individuals dependent on oxygen, who are automatically admitted into a SpNS. Many of thes e people, who are oxygen dependent, are capable of taking care of themselves in an ARC shelter. Modern oxygen delivery systems are no longer electric dependent. Consequently, there is no reason to assign these individuals to SpNSs, because of the need for access to electricity.

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395 To understand the nature of health care today, the norm can no longer be individual, but collective responsibilit y (Downie, 1982). In order to devise appropriate strategies to address the special needs of many people in the community, plans must be built into emergency level County-State-Federal progression of responsibility for disast er assistance. At the progression of personal preparedness must develop a similar paradigm Personal-AgencyCommunity (Fernandez, Byard, Lin, Bens on, & Barbera, 2002). The medical profession needs to be more involved and mandatory conti nuing education for nurses and physicians should be consider ed. Copies of the Hurricane Guide should also be delivered to all facilities, providing health care in the community. Training must be designed to increase awareness, among SpNP stakeholders about the needs of persons with di sabilities related to disasters. For example, Public health nurses, by the ve ry nature of their specialty, focus on preventive care and are not very experienced in the care of the chronically ill and disabled. Continual training related to t he care of chronically ill and disabled is necessary. Training must also be designed to increase awareness, among people with disabilities about their personal responsib ility, in disaster events and during evacuations. There is a need to develop a national model, which can be adapted by communities to meet their local needs Over the past few years, various government and NFP organizations (often u nder a government grant) have been developing guidebooks for the disabled. These agencies need to build a coalition,

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396 develop a single definition of special medical needs and agreed upon standards of care. It is important that public health be involved with mass media organizations, to advance broad social views and promote policies and changes that will enhance health outcomes, in disaster situati ons and change the perception of risk due to hurricanes (Barnes, Hanson, Novilla, Meacham, McIntyre, & Erickson, 2007). Public health practitioners must become knowledgeable about media practices, in order to help in the presentation of a public health oriented agenda. Redundancy is vital to effective communication stra tegies. Communication of all emergency and evacuation information in multiple forma ts, including large print, Braille, closed captioning, sign language interpreters TeleTYpewriter-Telecommuncations Devices for individuals who are deaf, and any languages commonly spoken in the area (Cahalan & Renne, 2007). From the results of this study, it is apparent that the SpNP Planning Committee needs to come up with a solution, to care for the families of workers in the SpNSs. A good model would be that eit her in or very near every SpNS, there has to be accommodations for the families of emergency/disa ster, staffed by professional caregivers. Th is would allow workers in th e SpNSs, to focus on their work and not be concerned for the safety of their families. After completing their shift the workers could, quickly reunite with their families. It was suggested by many participants in the study, that a video needed to be developed, showing what should be ex pected in the SpNS and/or public shelters. Such a video, would help alleviate the fears of many individuals who

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397 have developed false beliefs, as to what t he conditions at the shelter would be. While there are some upfr ont expenses involved with the product of the video, costs of replicating onto CDs and mailings to SpNP clients, would be relatively inexpensive. To help the SpNP client with knowledge concerning their placement in the program, a credit card size information document should be provided, designating the shelter they are assigned to and important phone numbers. Many SpNP clients interviewed were confused, as to what services they should expect, from th e SpNP during a hurricane evacuation. There are really two different services, provided by the program. The first service is transportation only, where the SpNP client is transported to an ARC shelter, wher e they are expected to take care of their own needs. T he second service, may also involve transportation services to a SpNS, where healt h care services are available. Many of the clients interviewed, who were only receiving transportation to ARC shelters, were under the assumption that since they were in the SpNP, medical services would be available. This issue could be solved, by having two different programs. One of the programs could be called the Special Ne eds Medical Shelter Program and the other identified, as the Special Needs Transportation Program. Recommendations for Future Research The purpose of this study was to ex plore in depth the experiences of participants from Hillsborough County, not to develop a theory that would be generalizable to all SpNPs in Florida, much less the country. The constructionist approach used implies that t he research was not seeking to discover an objective

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398 reality that exists, but instead understand the reality that these participants portrayed as constructed in social contex t. Consequently, additional studies could improve the transferability, of the results of this study. Recommendations for future research, in clude studies that focus on: a) the effectiveness of interorganizational trai ning programs, b) c hanges to the current standards of education and training, c) asse ssing the viability of coalitions in protecting vulnerable populati ons before, during, and after disasters, d) evaluation of organizational differences within SpNPs, e) developing an integrative framework that captures the core competencies and process required within collaborative bodies to facilitate success, f) effectives of legislative mandates in responding to disasters, g) agency resistance to legi slative mandates, h).involving non-English speakers, i) different ethnic groups r epresented in the community, j) the best media approach is necessary-using a social marketing approach, and k) more research related to the effectiveness of c oalitions, as past studies into coalitions examined external outcomes and did not in vestigate which factors of coalitionbuilding produced which outcomes (Zakocs & Edwards, 2005).

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417 National Endowment for Financial Educat ion. (2006). Duty based ethics: A framework for making decisions. Retrieved May 23, 2008, from http://nefe.danielsfund.org/eth ics/section_three/dbe.html. National Hurricane Center. (2005a). U. S. mainland hurricane strikes by state, 1851-2004 Retrieved October 11, 2005, from http://www.nhc.noaa.gov/paststate.shtml National Hurricane Center. (2005b). The Saffir-Simpson hurricane scale Retrieved October 11, 2005, from http://www.nhc.noaa.gov/aboutsshs.shtml National Oceanic and Atmospheric Administration (2005). Brief history of weather satellites. Retrieved October 11, 2005, from http://www.ncdc.noaa.gov/oa/climate/extremes/2000/apr il/extreme50400.ht ml National Organization on Disability. (2002). Emergency preparedness initiative: Guide on the special needs of people with disabilities for emergency managers, planner s and responders Washington, DC: The National Organization on Disability. Retrieved September 24, 2005, from http:// www.nod.org Nelson, C. E., Kurtz, A. Gulitz, E., Hacke r, G., Lee, M., & Craiger, P. (1988). Posthurricane survey of evacuees shelte red I the Tampa Bay Region during Hurricane Elena in 1985 (STAR Grant 87-030). Tallahassee, FL: Department of Community Affairs, Division of Emergency Management.

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418 Nelson, E. C., Coovert, M. D., Kurtz, A., Fritzsche, B., Crumle y, C., & Powell, A. (1989). Models of hurricane evacuation behavior. Tallahassee, FL: Department of Community Affairs. Neuman, W. L. (2003). Social research methods: Qualitative and quantitative approaches (5th ed.). Boston, MA: Allyn and Bacon Nigg, J. M. (1997). The social impact of extreme physical events Newark, DE: Disaster Research Center. Retr ieved October 25, 2005, from http://www.udel.edu/DRC/preliminary/245.pdf Noji, E. K. (1991). Natural disasters. Critical Care Clinician, 7, 271-292. Norris, F. H. (1997). The frequency and stru cture of precautionary behavior in the domains of hazard preparedness, crime prevention, vehicular safety, and health maintenance. Health Psychology, 16 566-575. Norris, F. H., Smith, T. E., & Kaniasty, K. (1999). Revising the experience-behavior hypothesis: The effects of Hurricane Hugo on hazard preparedness and other self-protective acts. Basic and Applied Social Psychology, 21, 37-47. Oberschall, A. (1993). Social movements: I deologies, and identities New Brunswick, NE: Transaction. Oliver-Smith, A. (1986). Natural disasters and cultural responses Williamsburg, VA: College of William and Mary. Oliver-Smith, A. (1991). Success and failu res in post-disaster resettlement. Disasters, 15 (1), 12-21. Ore, T. E. (2003). The social construction of difference and inequality (2nd ed.). Boston: McGraw-Hill Higher Education.

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420 Platt, R. H. (1999). Disasters and democracy: The politics of extreme natural events Washington, DC: Island Press. Porfiriev, B. N. (1998). I ssues in the definition and del ineation of disasters and disaster areas. In E. L. Quarantelli (Ed.), What is a disaster? Perspectives on the question (pp. 31-55 ). London: Routledge. Potter, J., & Wetherell, M. (1987). Discourse and Social Psychology: Beyond attitudes and behavior London: Sage. Quarantelli, E. L. (1984). Chemical disa ster preparedness at the local community level. Journal of Hazardous Materials, 8 239-249. Quarantelli, E. L. (1992). The case fo r a generic rather than agent specific approach to disasters. Disaster Management, 2,191-196. Quarantelli, E. L. (1995). Patterns of s heltering and housing in US disasters. Disaster Prevention and Management, 4 (3) 43-53. Quarantelli, E. L. (1998). What is a disaster? Perspectives on the questions London: Routledge. Riad, J. K., & Norri s, F. H. (1999). Hurricane threat and evacuation intentions: An analysis of risk perception, preparedne ss, social influence, and resources Newark, NJ: Disaster Research Center Retrieved October 25, 2005, from http://www.udel.edu/DRC/preliminary_Papers/pp271.pdf Riad, J. K., Norris, F. H., & Ruback, R. B. (1997). Predicting evacuation from two major disasters. Journal of Applied Social Psychology, 29, 918-934

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425 Ulin, P., Robinson, E. T., & Trolley, E. E. (2005). Qualitative methods in public health: A field guide for applied research. San Francisco, CA: Jossey-Bass U. S. Department of Justice (2007a). The ADA and emergency shelters: Access for all in emergencies and disasters (Chapter 7 Addendum 2). Retrieved July 7, 2007, from http://www.ada.gov /pcatoolkit/chap7shelterprog.htm U. S. Department of Justice (2007b). An ADA guide for local governments: Making community emergency preparedness and response programs accessible to people with disabilities. Retrieved July 7, 2007, from http://www.ada.gov/pcatoolkit/chap1adaguideforlocalgovernment.htm Walonick, D. S. (2008). Gener al Systems Theory. Retr ieved April 22, 2008, from http://www.survey-software-soluti ons.com/walonick/systems-theory.htm Wenger, D. E. (1978). Community response to disaster: Functional and structural alternatives. In E. L. Quarantelli (Ed.), Disasters: Theory and research. Thousand Oaks, CA: Sage Publications. Weller, J. M. & Wenger, D. E. (1973). Disaster subcultures: The cultural residues of community disasters. Newark, DE : University of Delaware, Disaster Research Center. Preliminary Paper, No. 9. Woolgar, S., & Pawluch, D. (1985a). Ontological gerrymandering. Social Problems, 32, 214-227. Woolgar, S., & Pawluch, D. (1985b). How shall we move beyond constructivism? Social Problems, 33, 159-162. Woolgar, S., & Pawluch, D. (1998). Onto logical gerrymanderi ng: The anatomy of social problems. Social Science and Medicine, 47 (6), 779-794

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426 Zakocs, R. C. & Edwards, E. M. (2006). What expl ains community coalition effectiveness?: A review of the literature. American Journal of Preventive Medicine, 30(4) 351-361. Zatz, M. S. (1985). Los Cholos: Legal processing of Chicano gang members. Social Problems, 33, 13-30. Zola, I. K. (2003). Self, identity, and the naming question: Reflections on the language of disability. In Ore, T. E. (Ed.), The social construction of difference and inequality (2nd ed., pp. 437-449). Boston: McGraw-Hill Higher Education.

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427 Appendices

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428 APPENDIX A: Agency Members of the Hillsborough County Special Needs Program National Agencies: Network 7 (dialysis) and Veterans Hospital Administration. State Agencies: Police; Department of H ealth; Childrens Medical Services; and Area Agency on Aging. Hillsborough County Agencies: Emer gency Management; Police; Fire and Rescue; Mass Casualty; American Disability Act; School Board; Aging Services; Community Care for the Elderly; Health and Social Services; County Purchasing; Animal Services; Citizen Action Center; Transportation, and Pa rks and Recreation. City Agencies: Tampa Emergency Managem ent Agency; Tampa Police; Tampa Fire and Rescue; Tampa Public Housing; Temple Terrace Police; and Temple Terrace Fire and Rescue; Plant City Police Department; and Plant City Fire and Rescue. University of South Florida (USF): College of Public Health and Police Department. Dialysis Clinics: 9 different clinics serve Hillsborough County. Special Needs Shelters: Erwin Techni cal Center, Riverview High School, Shriners Hospital, and the USF Sun Dome. Not-for-profits: Radio Amateur Civil Em ergency Services; Hospice, American Red Cross; Lighthouse for the Blind; Center for Independent Living; and Community Outreach Support and Services. Retirement Communities: Sun City Center and Rocky Creek Village. Businesses: Tampa Electric Power Company: APCO Linen Services; Tampa Armature Works (generators); Stre iker Mobile Refueling; RESPITEK (oxygen); and Americare BLS Ambulance Company. Home Health Agencies: 53 different agencies serve Hillsborough County.

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429 APPENDIX B: EMAIL REQUESTING PARTICIPATION IN STAKEHOLDER FOCUS GROUP Hello. My name is Bob Tabler. I am a student at the University of South Floridas College of Public Health. I am conduc ting a focus group with members of the Hillsborough County Special Needs Program, to learn more about the program and the population it serves. Would you like to participate in a focus group? The focus group will be held (DATE) at the Hillsborough County Emergency Operations Center at (TIM E). Please email me at rtabler1@tambabay.rr.com or call me at (813) 988-1384 to let me know if you are interested in participating. If you cannot participate in this focus group can you identify anyone else in your organization to represent you?

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430 APPENDIX C: FIRST STAKEHOLDER FOCUS GROUP INTERVIEW GUIDE Hello. My name is Bob Tabler, and I want to thank you for agreeing to participate in this study. I know that all of you are very busy and I want to thank you for taking time to participate in this focus group. I am here to learn about your thoughts and feelings about t he Hillsborough County SpNP. There are no right or wrong answers to the questions that I will a sk. I would like to reassure each of you that what is said in this focus group is confidential. With that in mind I would ask that each of you hold in confidence w hat is said in this session. I will not be using anyones name anywhere, at any time. The focus group will be recorded on audiotape but the content s will not be accessed by anyone but myself. I will ask a question and each individual will hav e an opportunity to respond in turn. The first question will first be directed to the person on my left and in a clockwise manner everyone else will be given the opportunity to respond. The second question will be asked of the second person on my left and so on. If at anytime during the focus group you feel uncomfort able and would like to discontinue your participation, please let me know. Are there any questions? We will now begin. 1. Please give us your first name, what agency you work for, and your position. 2. What was your role in the development of the SpNP? 3. What is your role in the SpNP during evacuation? 4. What social norms the needs of people in the SpNP before, during and after a hurricane? 5. How do you feel about these problems? 6. How does the local economy affect the SpNP and is it sustainable? 7. Can you describe how the community i dentifies the criteria that must be met for placement into the SpNP? 8. What have your experi ences been with the SpNP? 9. What policies does the SpNP have in place to pr otect confidential information That was my last question. I want to thank you for your valuable insight into the SpNP. I will be providing everyone with my business card. Please feel free to contact me should you have any further insight into the questions we have discussed. Again I want to t hank you for your time. Goodby.

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431 APPENDIX D: SECOND STAKEHOLDER FOCUS GROUP INTERVIEW GUIDE Hello. My name is Bob Tabler, and I want to thank you for agreeing to participate in this study. I know that all of you are very busy and I want to thank you for taking time to participate in this focus group. I am here to learn about your thoughts and feelings about t he Hillsborough County SpNP. There are no right or wrong answers to the questions I will ask. I want to reassure each of you that what is said in this focus group is confi dential. With that in mind I ask that each of you hold in confidence what is said in this session. In my write-up of the focus group will not be using anyones name anywher e, at any time. The focus group will be recorded on audiotape but the c ontents will not be accessed by anyone but myself. I will ask a question and each in dividual will have an opportunity to respond in turn. The first question will firs t be directed to the person on my left and in a clockwise manner everyone will be given the opportunity to respond. The second question will be asked of the second person on my left and so on. If at anytime during the focus group you feel uncomfortable and would like to discontinue participation, let me know. Any questions? Lets begin. 1. Please give us your first name and what agency/business you work for. 2. Does your agency have a detailed internal plan to respond to a coming hurricane? 3. Do you have an evacuation plan for your family and do you have evacuation supplies ready for your family? 4. What is your agencies/busines ses role in operating the SpNS? 5. How is your agency/businesses commitm ent to the SpNP different from or similar to comparable agencies/ business in other counties? 6. What was the effect of the last two hurricane seasons on your agencys policy and the policy of compar able agencies in other counties? 7. In my interviews with clients of the SpNP I have seen a lot of confusion as to how the program works and what the SpNP evacuee should expect during the evacuation. What can be done to educate these individuals? 8. In talking to SpNP clients and repr esentatives from home health agencies there are many individuals in the community who would qualify for the SpNP but they either have not heard of the program or they will not sign up. What can be done to enroll this population? 9. Why has Hillsborough County put so much effort into its SpNP? 10. What do you think of the recent media coverage of the forthcoming hurricane season? 11. How would you improve the SpNP? That was my last question. I want to thank you for your valuable insight into the SPNP. I will be providing everyone with my business card. Please feel free to contact me should you have any further insight into the questions we have discussed. Again I want to t hank you for your time. Goodby.

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432 APPENDIX E: THIRD STAKEHOLDER FOCUS GROUP INTERVIEW GUIDE Hello. My name is Bob Tabler, and I want to thank you for agreeing to participate in this study. I know that all of you are very busy and I want to thank you for taking time to participate in this focus group. I am here to learn about your thoughts and feelings about t he Hillsborough County SpNP. There are no right or wrong answers to the questions I will ask. I want to reassure each of you that what is said in this focus group is confi dential. With that in mind I ask that each of you hold in confidence what is said in this session. In my write-up of the focus group will not be using anyones name anywher e, at any time. The focus group will be recorded on audiotape but the c ontents will not be accessed by anyone but myself. I will ask a question and each in dividual will have an opportunity to respond in turn. The first question will first be directed to the person on my left and in a clockwise manner everyone will be given the opportunity to respond. The second question will be asked of the second person on my left and so on. If at anytime during the focus group you feel uncomfortable and would like to discontinue participation, let me know. Any questions? Lets begin. 1. Please give us your first name and what agency/business you work for. 2. Do you have an evacuation plan for your family and do you have evacuation supplies ready for your family? 3. Does your agency have a detailed internal plan to respond to a coming hurricane? 4. What is your agencies/bus inesses role in the SpNP? 5. What was the effect of the last two hurricane seasons on your agencys policy and the policy of compar able agencies in other counties? 6. How is your agency/businesses commitm ent to the SpNP different from or similar to comparable agencies/ business in other counties? 7. In my interviews with clients of the SpNP I have seen a lot of confusion as to how the program works and what the SpNP evacuee should expect during the evacuation. What can be done to educate these individuals? 8. In talking to SpNP clients and repr esentatives from home health agencies there are many individuals in the community who would qualify for the SpNP but they either have not heard of the program or they will not sign up. What can be done to enroll this population? 9. Why has Hillsborough County put so much effort into its SpNP over the years? 10. Why the lack of media coverage on Spanish TV? 11. How would you improve the SpNP? That was my last question. I want to thank you for your valuable insight into the SpNP. I will be providing everyone with my business card. Please feel free to contact me should you have any further insight into the questions we have discussed. Again I want to t hank you for your time. Goodby.

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APPENDIX F: STAKEHOLDER FOCUS GROUP INFORMED CONSENT FORM Informed Consent for an Adult Social and Behavioral Sciences University of South Florida Information for People Who T ake Part in Re search Studies Researchers at the Universi ty of South Florida (USF) study many topics. This study is looking at the development of the Hillsborough C ounty Special Needs Program (SpNP). To do this, I need the help of people who agree to take part in a research study. The titl e of this research study is: The Social Construction of a Special Needs Program for Hurricanes Robert (Bob) Tabler, a USF College of Public Health doctorial student is in charge of the study. This study is conceptual ly supported by the Hillsborough County Emergency Operations Center and t he Hillsborough County Department of Aging Services. This form tells you about this research study. You can decide if you want to take part in it, but you do not have to take part. Reading this form can help you decide. Talk about this study wit h the person in charge. You can have someone with you when you talk about the study. You may have questions this form does not answer. If you do, ask the person in charge of the study questions as you go along. You dont have to guess at things you dont understand. Ask the person doi ng the study to explai n things in a way you can understand. After you read this form, you can: Take your time to think about it. Have a friend or family mem ber read it. Talk it over with someone you trust. Its up to you. If you c hoose to be in the study, then you can sign the form. If you do not want to take par t in this study, do not sign the form. The purpose of this study is to find out what went into the development of the Hillsborough County SpNP and what people in the SpNP think of the program. We are asking you to take part in this study because as a representative of an agency or company participating in the SpNP your opinion of the program is very impo rtant. You will be asked to spend about one and a half hours in this study. A study visit is one you have with the person in charge of the study. There will only be one visit with you during this study at the Hillsborough County Emergency Operatio ns Center. There will be approximately 9 other people participating in this visit, which will be in the form of a focus group. During the visi t the person in char ge of the study will ask you and others within the group, ques tions about your past experiences with natural disasters, y our experiences with SpNP and your thoughts as to what should be expected from this program If you decide not to take part in this study, that is okay. If you deci de to take part in this study, you will need to sign this consent form. 433

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434 During the study visit you will be asked questions concerning your past experiences with natural disasters, su ch as hurricanes. You will also be asked questions about your experiences with the SpNP, as well as, your overall thoughts and feelings about the program. This conversation will be audiotaped, so that the re searcher can at a later date take a good look at what you said during the study visit. There may be additiona l questions that arise after reviewing the audi otape of your interview. If this happens the researcher will call you to clarify your responses. This will occur within two weeks of your interview and will only take a few minutes of your time. You will not be paid for the time you volunteer in this study. It will not cost you anything to take part in the study. It is not know if you will get any benefits by taking part in this study. There are no known risks to those who take part in this study. However, by taking part in this study, you will increase our overall knowledge of Hillsborough Countys Special Needs Program which will not only help Hillsborough Count y improve its program but also help other communities across the nation improve t heir programs. Federal law requires us to keep your study records private. Only the researcher Bob Tabler will have access to the information that you give and your name will not be connected to any statem ents that you make. Absolute confidentiality cannot be guaranteed because of the group setting, but we ask that everyone keep what is discussed during the session confidential and not disclosed to others outside of the group setting. The audiotape of your focus group will be erased after transcription. By law the researcher is required to keep all data for three years after which the data will be destroyed. However, certain people may need to see your study re cords. By law, anyone who looks at your records must keep them confident ial. The only people who will be allowed to see these records are those people who make sure that the study is being done in the right way. They also make sure that your rights and safety are protected: o Those USF professors who are on Bob Tablers doctorial committee o The USF Institutional Review Board o The United States Department of Health and Human Services You should only take part in this study if you want to take part. If you decide not to take part: You wont be in trouble or lose any rights you normally have. You will still get the same services you would normally have. If you decide you want to stop taking par t in the study during the focus group session, tell the study staff as soon as y ou can. At the end of the focus group participants will be asked to contact the researcher if they have any further insights. Each participant will be giv en a business card, which provides the researchers e-mail address and home phon e number. Also, after the focus group the researcher will remain until al l participants have departed, in case someone wants to talk on a one-on-one basis If you have any questions about

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435 this study, call Bob Tabler at (813) 988-1384. If you have questions about your rights as a person who is taking part in a study, call USF Research Compliance at (813) 974-5638. I freely give my consent to take part in this study. I understand that this is research. I have received a copy of this consent form. ______________________ ______________________ ___________ Signature Printed Name Date of Person taking part in study of Person taking part in study Statement of Person Obtaining Informed Consent I have carefully explained to the person taking part in the study what he or she can expect. The person who is giving consent to take part in this study Understands the language that is used. Reads well enough to understand this form. Or is able to hear and understand when the form is read to him or her. Does not have any problems that could make it hard to understand what it means to take part in this study. Is not taking drugs that make it hard to understand what is being explained. To the best of my knowledge, when this person signs this form, he or she understands: What the study is about. What needs to be done. What the potential benefits might be. What the known risks might be. That taking part in the study is voluntary. ________________________ ________________________ _________ Signature of Investigat or Printed Name of In vestigator Date

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APPENDIX G: SNP CLIENT INFORMED CONSENT FORM Informed Consent for an Adult Social and Behavioral Sciences University of South Florida Information for People Who T ake Part in Re search Studies Researchers at the Universi ty of South Florida (USF) study many topics. This study is looking at the development of the Hillsborough C ounty Special Needs Program (SPNP). To do this, I need t he help of people who agree to take part in a research study. The ti tle of this research study is: The Social Construction of a Special Needs Program for Hurricanes Robert (Bob) Tabler, a USF College of Public Health doctorial student is in charge of the study. This study is supported by the Hillsborough County Emergency Operations Center. This form tells you about this research study. You can decide if you want to take part in it, but you do not have to take part. Reading this form can help you decide. Talk about this study wit h the person in charge. You can have someone with you when you talk about the study. You may have questions this form does not answer. If you do, ask the person in charge of the study questions as you go along. You dont have to guess at things you dont understand. Ask the person doi ng the study to explai n things in a way you can understand. After you read this form, you can: Take your time to think about it. Have a friend or family mem ber read it. Talk it over with someone you trust. Its up to you. If you c hoose to be in the study, then you can sign the form. If you do not want to take par t in this study, do not sign the form. The purpose of this study is to find out what went into the development of the Hillsborough County SPNP and what people in the SPNP think of the program. We are asking you to take part in this study because as a participant in the SPNP your opinion of the program is very important. You will be asked to spend about one and a half hour s in this study. A study visit is one you have with the person in charge of the study. There will only be one visit with you during this study at the lo cation of your choice. During the visit the person in charge of the study will ask you questions about your past experiences with natural disasters, y our experiences with the SNP, and your thoughts as to what should be expected from this program. If you decide not to take part in this study, that is okay. If you decide to take part in this study, you will need to sign this consent form. During the study visit you will be asked questions concerning your past experiences with natural disasters, such as hurricanes. You will also be asked questions about your experienc es with the SNP, as well as, your overall thoughts and feelings about the program. This c onversation will be audiotaped, so that the researcher can at a later date take a good look at what you said during the 436

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437 study visit. There may be additional ques tions that arise after reviewing the audiotape of your interview. If this happens the researcher will call you to clarify your responses. This will occur within two months of your interview and will only take a few minutes of your time. You will be paid 20 dollars fo r the time you volunteer in this study. If you finish the interview your name will be ent ered into a drawing for 100 dollars. It will not cost you anything to take part in t he study. It is not know if you will get any benefits by taking part in this study. There are no known risks to those who take part in this study. However, by ta king part in this study, you will increase our overall knowledge of Hillsborough Countys Special Needs Program which will not only help Hillsborough C ounty improve its program but also help other communities across the nation improve their programs. Federal law requires us to keep your study records private. Only the researcher Bob Tabler will have access to the information that you give and your name will not be connected to any statemen ts that you make. Your audiotape and any transcripts from your audiotape will only be identified by your participant number. By law the researc her is required to keep all data for three years after which the data will be destroyed. However, certain people may need to see your study records. By law, anyone who loo ks at your records must keep them confidential. The only people who will be a llowed to see these records are those people who make sure that the study is bei ng done in the right way. They also make sure that your right s and safety are protected: o Those USF professors who are on Bob Tablers doctorial committee o The USF Institutional Review Board o The United States Department of Health and Human Services You should only take part in this study if you want to take part. If you decide not to take part: You wont be in trouble or lose any rights you normally have. You will still get the same services you would normally have. If you decide you want to stop taking part in the study during the interview, tell the study staff as soon as you can. If you stop the study during the interview, you will still receive the 20 dollars payment, but will not have your name entered into the 100 dollar drawing. If you have any questions about this study, call Bob Tabler at (813) 988-1384. If you have questions about your rights as a person who is taking part in a study, call USF Research Compliance at (813) 974-5638. I freely give my consent to take part in this study. I understand that this is research. I have received a copy of this consent form. ______________________ ______________________ ___________ Signature Printed Name Date of Person taking part in study of Person taking part in study

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438 Statement of Person Obtaining Informed Consent I have carefully explained to the person taking part in the study what he or she can expect. The person who is giving consent to take part in this study Understands the language that is used. Reads well enough to understand this form. Or is able to hear and understand when the form is read to him or her. Does not have any problems that could make it hard to understand what it means to take part in this study. Is not taking drugs that make it hard to understand what is being explained. To the best of my knowledge, when this person signs this form, he or she understands: What the study is about. What needs to be done. What the potential benefits might be. What the known risks might be. That taking part in the study is voluntary. ________________________ ________________________ _________ Signature of Investigat or Printed Name of In vestigator Date

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439 APPENDIX H: SpNP CLIENT PAYMENT RECEIPT I have received my $20 payment for par ticipation in the Special Needs Program Study. ________________________ _________ ___________ Name Date

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440 APPENDIX I: SpNP CLIENT UNSTRUCTURED INTERVIEW GUIDE Hello. My name is Bob Tabler, and I want to thank you for agreeing to participate in this study. I want to learn your experiences with natural disasters and what you think about the Hillsbor ough County Special Needs Pr ogram. There are no right or wrong answers to the questions t hat I will ask. I would like to reassure you that what is said in this intervie w is confidential. I will not be using your name anywhere, at any time The interview will be recorded on audiotape but the contents will not be accessed by anyone but myself. Are there any questions? We will now begin. 1. What are your experienc es with natural disasters? 2. Where were you born? 3. Do you have relatives in the area? 4. Do you have someone who cares for you? If so, who are they and how often do they visit? 5. How long have you been in the Special Needs Program? 6. Why do you need to be in the Special Needs Program? 7. What do you know about the Spec ial Needs Program and from where did you get the information? 8. What were your exper iences registering with the Special Needs Program? 9. Have you evacuated to the special needs shelter? If so, how do you know when to evacuate? How did you get there? What were yo ur experiences? What items did you take to the shelter? 10. What factors encourage or deter you from evacuation? 11. Have you prepared a box of things to take with you to the special needs shelter? If so, what is in that box? If not, what things would you take with you? 12. What are you responsibilities in ev acuation to a special needs shelter? What are the counties responsibilities? 13. What do you think of the Special Needs Program in general? 14. How would you change the pr ogram to make it better? 15. Why do you think Hillsborough C ounty developed their Special Needs Program? That is all the questions I have for you. Is there anything that you would like to add? Thank you for your time and input into this project.

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441 APPENDIX J: LETTER REQUESTING SpNP CLIENT PARTICIPANTION IN STUDY PARTICIPANT # Hello, You have been randomly selected (like picki ng a name out of a hat) to participate in a study looking at the development of the Hillsborough County Special Needs Program. Random selecti on is like putting everyones name in a hat and picking one. This study is being conducted by a doctorial student (Bob Tabler) from the University of South Floridas College of Public Health. Your opinion of the Hillsborough County Special Needs Program is very important not only for the development of a better program for the residents of Hillsborough County, but for the development of Special Needs Programs across the United States. Once you decide to participate in the study, Bob Tabler will arrange to meet with you at your convenience and at a location of your choice. At this meeting you will be asked questions about your experi ences with and perceptions of the Hillsborough County Special Needs Program. There will be no survey to fill out or written questions to answer for this st udy. This should take about 90 minutes of your time. You will receive $20 for y our time and your participation will be greatly appreciated. Please contact Bob Tabler at (813) 9881384, within the next couple of days to let him know whether or not you wish to participate in this study. If you want to participate leave your name, partici pant number (#), and a phone number so that Mr. Tabler can return y our call and arrange an interview at your convenience. If you do not want to participate simply call, give your participant number (#) and you will not be contacted again. Thank you for your time and effort in this matter. Robert E. Tabler Jr., M.A., CHES Doctorial Candidate University of South Florida Principal Investigator

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APPENDIX K: ELITE INFORMED CONSENT FORM Informed Consent for an Adult Social and Behavioral Sciences University of South Florida Information for People Who T ake Part in Re search Studies Researchers at the Universi ty of South Florida (USF) study many topics. This study is looking at the development of the Hillsborough C ounty Special Needs Program (SNP). To do this, I need the help of people who agree to take part in a research study. The titl e of this research study is: The Social Construction of a Special Needs Program for Hurricanes Robert (Bob) Tabler, a USF College of Public Health doctorial student is in charge of the study. This study is conceptual ly supported by the Hillsborough County Emergency Operations Center and t he Hillsborough County Department of Aging Services. This form tells you about this research study. You can decide if you want to take part in it, but you do not have to take part. Reading this form can help you decide. Talk about this study wit h the person in charge. You can have someone with you when you talk about the study. You may have questions this form does not answer. If you do, ask the person in charge of the study questions as you go along. You dont have to guess at things you dont understand. Ask the person doi ng the study to explai n things in a way you can understand. After you read this form, you can: Take your time to think about it. Have a friend or family mem ber read it. Talk it over with someone you trust. Its up to you. If you c hoose to be in the study, then you can sign the form. If you do not want to take par t in this study, do not sign the form. The purpose of this study is to find out what went into the development of the Hillsborough County SNP and what people in the SPNP think of the program. We are asking you to take part in this study because as an administrator of an agency or business that participates in the SPNP your opinion of the program is very impo rtant. You will be asked to spend about one and a half hours in this study. A study visit is one you have with the person in charge of the study. There will only be one visit with you during this study at the location of your choice. During the visit the person in charge of the study will ask you questions about your past experiences with natural disasters, your experienc es with the SNP, and your thoughts as to what should be expected from this program. If you decide to take part in this study, you will need to sign this consent form. During the study visit you will be asked questions concerning your past experiences with natural disasters, su ch as hurricanes. You will also be asked questions about your experiences with the SpNP, as well as, your overall thoughts and feelings about the program. This conversation will be 442

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443 audiotaped, so that the re searcher can at a later date take a good look at what you said during the study visit. There may be additiona l questions that arise after reviewing the audi otape of your interview. If this happens the researcher will call you to clarify your responses. This will occur within one month of your interview and will only ta ke a few minutes of your time. You will not be paid for the time you volunteer in this study. It will not cost you anything to take part in the study. It is not know if you will get any benefits by taking part in this study. There are no known risks to those who take part in this study. However, by taking part in this study, you will increase our overall knowledge of Hillsborough Countys Special Needs Program which will not only help Hillsborough Count y improve its program but also help other communities across the nation improve t heir programs. Federal law requires us to keep your study records private. Only the researcher Bob Tabler will have access to the information that you give and your name will not be connected to any statements that you make. The audiotape of your interview will be er ased after transcription. Your name will not be used in the transcripts whic h will only be identified by a number. By law the researcher is required to k eep all data for three years after which the data will be destroyed. However, certain people may need to see your study records. By law, anyone who looks at your records must keep them confidential. The only people who will be allowed to s ee these records are those people who make sure that the study is being done in the right way. They also make sure that your rights and sa fety are protected: o Those USF professors who are on Bob Tablers doctorial committee o The USF Institutional Review Board o The United States Department of Health and Human Services You should only take part in this study if you want to take part. If you decide not to take part: You wont be in trouble or lose any rights you normally have. You will still get the same services you would normally have. If you decide you want to stop taking part in the study during the interview, tell the study staff as soon as you can. If you have any questions about this study, call Bob Tabler at (813) 988-1384. If you have questions about your rights as a person who is taking part in a study, call USF Research Compliance at (813) 974-5638. I freely give my consent to take part in this study. I understand that this is research. I have received a copy of this consent form. ______________________ ______________________ ___________ Signature Printed Name Date of Person taking part in study of Person taking part in study

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444 Statement of Person Obtaining Informed Consent I have carefully explained to the person taking part in the study what he or she can expect. The person who is giving consent to take part in this study Understands the language that is used. Reads well enough to understand this form. Or is able to hear and understand when the form is read to him or her. Does not have any problems that could make it hard to understand what it means to take part in this study. Is not taking drugs that make it hard to understand what is being explained. To the best of my knowledge, when this person signs this form, he or she understands: What the study is about. What needs to be done. What the potential benefits might be. What the known risks might be. That taking part in the study is voluntary. ________________________ ________________________ _________ Signature of Investigat or Printed Name of In vestigator Date

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445 APPENDIX L: EMAIL REQUESTING PARTICIPATION IN ELITE INTERVIEW Hello. My name is Bob Tabler. I am a student at the University of South Floridas College of Public Health. For some time I have been involved in a qualitative examination of Hillsborough County Specia l Needs Program, to learn more about the program and the populat ion it serves. I am in the final stages of analyzing my data and I would like to have you verify that I am on the right tra ck, so to speak. Please email me at rtabler1@tambabay.rr.com or call me at (813) 988-1384 to let me know if you are interested in partici pating. If you cannot participate in this focus group can you identify anyone else in your organization to represent you?

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446 APPENDIX M: CHARACTERSTICS OF FOCUS GROUP 1 PARTICIPANTS Participant 1: Caucasian female in her ear ly 60s. Participant works as a Director of Nursing for one of the HHAs serving Hillsborough County. Participant 2: Caucasian, Hispanic female in her early 50s. As a contractor the participant works as a social worker for several HHAs serving Hillsborough County. Participant 3: Caucasian female in her la ter 50s. Participant, works as a social worker for one of the HHAs serving Hillsborough County. Participant 4: Caucasian female in her la ter 50s. Participant, Is the owner of one of the HHAs serving Hillsborough County. Participant 5: Caucasian female in her early 50s. Participant works as the Clinical Director for one of the HHAs serving Hillsborough County. Participant 6: Caucasian female in her mi d 40s. Participant works as the Director of Nursing for one of the HHAs serving Hillsborough County. Participant 7: Caucasian, Hispanic male in his mid 50s. Participant works as a social worker for one of t he HHAs in Hillsborough County. Participant 8: Caucasian, female in her mid 50s. Participant works as a Director of Patient Services for one of the HHAs in H illsborough County.

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447 APPENDIX N: CHARACTERSTICS OF FOCUS GROUP 2 PARTICIPANTS Participant 1: Caucasian male in his ear ly 60s. Participant represented a NFP with weak ties to a national organization. NFP provides education, referral services and equipment to its clients and training to professionals on how to interact with people with disabilities. Th is Agency helps register people for the SpNP. Participant 2: African-American female in her early 50s. Participant represented a Hillsborough County agency that provides direct health care services to people in the community. This agency helps r egister people for the SpNP and sends personnel to the SpNSs and the EOC during an evacuation of Hillsborough County. Participant 3: Caucasian female in her late 40s. Participant represented a national organization that works with agencies providing direct health care services to people in the community. Participant 4: Caucasian female in her late 50s. Participant represented a local NFP that provides health care services to people with special needs. This organization has a strong relationship to a national organization. This agency helps people register for the SpNP and sends personnel to a SpNS, Participant 5: Caucasian female in her mid 30s. Participant represented a regional NFP that only provides information and referral services to its clients. Agency has a weak relationship to a nat ional organization. This agency helps people register for the SpNP. Participant 6: Caucasian male in his mid 30s. Participant represented a NFP that provides no health care services to people with special needs. This agency is independent with no ties to a national organization. This agency helps staff a SpNS. Participant 7: Caucasian male in hi s late 50s. Participant represented a Hillsborough County agency that does not provide direct health care services to people. This agency provides staff to the SpNSs. Participant 8: Caucasian female in her mid 50s. Participant represented a State of Florida agency that provi des direct health care services to people in the community. This agency helps people register for the SpNP and sends personnel to SpNSs and the EOC during an evacuation of Hillsborough County.

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448 APPENDIX O: CHARACTERSTICS OF FOCUS GROUP 3 PARTICIPANTS Participant 1: Caucasian male in his late 50s. Participant represented a Hillsborough County agency that does not provide direct health care services to people. This agency helps with transportati on to the SpNSs and sends staff to the EOC during an evacuation. Participant 2: Caucasian female in her early 30s. Participant represented a regional NFP with weak ties to national organization. This agency provides referral services and helps people register for the SpNP. Participant 3: African-American male in his early 50s. Participant represented a City of Tampa agency that provides no direct health care services to people. This agency helps people register for t he EOC and sends staff to the EOC during an evacuation. Participant 4: Caucasian male in his early 40s. Participant represented a Hillsborough County agency that only provides emergency health care services to people. This agency helps with transportation to the SpNSs and sends staff to the SpNSs and the EOC dur ing an evacuation. Participant 5: Caucasian female in her late 40s. Participant represented a NFP that has strong ties to a national organization. This agency does not provide direct health care services to people. NFP provides education to people in the community and training to professionals on how to interact with people with disabilities in shelters. This agency sends staff to the EOC during an evacuation. Participant 6: Caucasian in her late 30s Participant repres ented a Hillsborough County Agency that does not provide dire ct health care services to people. Agency does provide information and educati on to people in the community. This agency sends staff to the EOC during an evacuation. Participant 7: Caucasian, Hispanic fe male in her early 50s. Participant represented a NFP with no ties to a nati onal organization. Agency only provides information and referral services to people in the community. Participant 8: African-American female in her late 40s. Participant represented a State of Florida agency that provides direct health care services to people in the community. This agency helps people register for the SpNP and sends personnel to SpNSs and the EOC during an evacuation of Hillsborough County.

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449 APPENDIX P: CHARACTERSTICS OF WAVE 1 SpNP CLIENT PARTICIPANTS Participant 1: Caucasian male in mid 20s, born and raised in Hillsborough County. Bound to a wheelchair he has been registered in the SpNP for approximately four years as he may need transportation to a SpNS. He was the owner of a new, mid-income house in an urban area not located in a flood zone. Participant has a strong support system : parents live nearby; has a friend as a roommate, and has a live-in professional caregiver. Participant has never experienced a natural disaster. Duri ng the 2004 Hurricane Season he evacuated once to his parents house. Participant 2: Caucasian male in his 80s Born in New Mexico he retired to Hillsborough County from Vermont 14 years ago. Needing oxygen for apnea participant was assigned to a SpNS and has been in the SpNP for 9 months. Participant lives with his wife, who he ta kes care of, in a private upper-income ALF in an urban area not located in a flood zone. Participant has a strong professional support system. Participant has experienced snowstorms and a hurricane. During the 2004 Hurric ane Season he did not evacuate, Participant 3: African-American female in her later 40s. Born in New York she moved to Hillsborough County 9 months ago. Bound to a wheelchair she has been registered in the SpNP for 9 months as she may need transportation to an ARC shelter. She lives in a low-income, rental apartment that was in an urban area. Home was not in a flood zone but has many oak trees leaning over building. Participant lives with fianc who was present at the interview, there was no professional support. Participant has never experienced a natural disaster. She did not live in Hillsborough Count y during the 2004 Hurricane Season. Participant 4: Caucasian male that was 16 years old. Participant was born and raised in Hillsborough County. Cared fo r by his grandmother participant was bed-bound and has been register ed in the SpNP for 13 years and was assigned to Shriners Hospital. The participants medical condition was complicated and he requires access to oxygen. The grandm other who was in her early 60s was interviewed, since the participant could not communicate for himself. She was born and raised in Florida and has lived in Hillsborough County 14 years. She owns a mid-income home in an urban area that was not in a flood zone. Participant has experienced hurricanes and a tornado. During the 2004 Hurricane Season she evacuated her grandson to a SpNS once. Participant 5: Caucasian female in her ear ly 50s. Born in Virginia she moved to Hillsborough County 12 years ago. She was wheelchair bound due to rheumatoid arthritis. Needing transporta tion to an ARC shelter she has been in the SpNP for one year. She owns a midincome home in an urban area that was

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450 not in a flood zone. She lives alone and has no professional support system. Participant has not experi enced a natural disaster but believes Hillsborough County was hit by hurricanes in the 2004 Hurricane Season, though she did not evacuate. Participant 6: Caucasian female in her 70s. Born in Texas she moved to Hillsborough County 20 years ago. She was able to move around her small apartment but needs a wheelchair w hen she goes outside. Needing transportation to an ARC shelter she has been in the program fo r four years. She lives alone in a low-income ALF and has no professional support system. Participant has experienced floods. During the 2004 Hurricane Season she evacuated once to a friends house. Participant 7: Caucasian male in his 70s. Born in South Carolina he moved to Hillsborough County 54 years ago. D ue to dependency on oxygen he was assigned to a SpNS. He has been in the Sp NP for four years. He lives with his wife in a mid-income trailer in a rural area that was not in a flood zone. He has a daughter and son who live nearby that prov ide some support but there was no professional support system. Participant has experienced floods and believes that hurricanes hit Hillsborough County in 2004. During the 2004 Hurricane Season he evacuated once to his daughters house. Participant 8: Caucasian female in her mi d 30s. Participant was born in England she moved to Hillsborough County five years ago. She has been in the SpNP for five years as she was bound to a wheelc hair she would require transportation to an ARC shelter. She lives with her husband in a low-income rental apartment in a flood zone. The husband was present during the interview. There was no professional support system and they have no family living nearby. Participant has never experienced a natural disaster. During the 2004 Hurricane Season she did not evacuate her home. Participant 9: African-American female in her mid 60s. Born and raised in Hillsborough County. W heelchair bound she has been in the SpNP for six months needing transportation to an ARC shelter. She appeared to be obese. She rents a low-income house that was not in a flood zone. She lives with her son and has professional caregiver servic es. Participant has never experienced a natural disaster and di d not evacuate during the 2004 Hurricane Season. Participant 10: African-American male mi d 30s. He was born in North Carolina and moved to Hillsborough County two years ago. Bound to a wheelchair he has been in the SpNP for two years as he would need transportation to an ARC shelter. He appeared to be obese. He rents an apartment in a low-income ALF that was located in an urban area not in a flood zone. He lives alone and has no professional support system. He has never experienced a natural disaster though he thought that hurricanes hit Hillsborough County in 2004. He evacuated once to a friends house during the 2004 Hurricane Season.

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451 APPENDIX Q: CHARACTERSTICS OF WAVE 2 SpNP CLIENT PARTICIPANTS Participant 11: Caucasian female in her early 70s. Born in North Carolina she moved to Hillsborough County 54 years ago. Dependent on oxygen she has been in the SpNP four years and was assign ed to a SpNS. She lives in a garage apartment at her daughters mi d-income house that was in an urban area not in a flood zone. She also has a son in the area that helps and she has a professional support system. She has experienced a to rnado and believes that Hillsborough County was hit by hurricanes in 2004 and evacuated three times to a SpNS. Participant 12: African-American female in her mid 30s. She was born and raised in Hillsborough County. A dialysis patient she has been assigned to the SpNS for 9 years. She owns a mid-inco me home in an urban area not in a flood zone. She lives with her teenage son and daughter and has other relatives living nearby and a professional support system. She has never exper ienced a natural disaster. She did not evacuate during the 2004 Hurricane Season. Participant 13: Caucasian male in his early 50s. Born in Ohio his family moved to Hillsborough County when he was 10. A person with AIDS he was real sick in the early 1990s and registered for the SpNP, 13 years ago. He was well enough now that he only needs transportation to an ARC shelter if his family cannot evacuate him. He rents an apartment in a low-income ALF and lives alone. Relatives living in Lakeland are his only support system. Never experiencing a natural disaster he evacuated once during the 2004 Hurricane Season. Participant 14: Caucasian male who wa s six years old. Born and raised in Hillsborough County, he was cared for by a grandmother. Having heart problems and asthmatic he was registered in the SpNP over 6 years ago and assigned to Shriners Hospital. The grandmother who was in her mid 50s was interviewed. She was born in Ohio and has been in Florida for about 23 years, and has lived in Hillsborough for 13 years. She owns an old, low-income wooden house in an urban area in a flood zone. There was a strong professional support system. She has experienced a tornado and a hurricane. During the 2004 Hurricane Season she evacuated all three times but not to a SpNS. She evacuated once to Daytona where the hurricane hit and twice to her church in St. Petersburg. Participant 15: Caucasian male who was f our years old. Born in New York his parents moved to Hillsborough County one year ago. Using a feeding tube the child was assigned to Shriners Hospital and has been in the SpNP for one year. The mother who was 32 years old was interviewed. Parents own an upper-level income home in a rural area that in not in a flood zone. There was no professional support system. Mother had experienced sn owstorms. The family did not live in Hillsborough Count y during the 2004 Hurricane Season.

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452 Participant 16: Caucasian female who was 83 years old. Born in Florida she has lived in Hillsborough County 36 years. S he registered for t he program 10 years ago due to the need for oxygen. She was assigned to a Hospital because her medical condition was complicated. She can get around the apartment but would need a wheelchair to go very far. She r ents an apartment in a low-income ALF in an urban area that was not in a flood zone. She has family that lives nearby but they do not provide any assistance. She has a very strong professional support system. She has experienced a tor nado, floods, and hurricanes. She only evacuated once during t he 2004 Hurricane Season. Participant 17: Caucasian male in his ear ly 40s. Born and raised in Hillsborough County. Registered in the SpNP for 4 years due to his obesity and wheelchair bound he was to be transported to a hospital. He owns an older trailer, living in a low-income trailer park in an urban area t hat was not in a flood zone. He has no family and no professional support system. His only support system was a friend who does his shopping. He has never experienced a natural disaster. During the 2004 Hurricane Season he evacuated to a hospital all three times. Participant 18: Caucasian, Hispanic female who was 55 years old. Born in New York of Cuban parents she married and moved to Puerto Rico where she raised her children. She moved to Hillsborough C ounty three years ago. Being obese, wheelchair bound and needing o xygen she has been in the SpNP three years and was assigned to be transported to a hospital. She rents an apartment in a low-income ALF that was located in an urban area in a flood zone. She has experienced hurricanes but did evac uate during the 2004 Hurricane Season. Participant 19: Caucasian, Hispanic female almost three years old. Born in Hillsborough she was being raised by her Puerto Rican mother. The child has seizures and needs access to oxygen. R egistered in the progr am for over two years the child was assigned to be transported to Shriners Hospital. The mother who was in her late 20s was interviewed. Mother rents a low-income apartment in a rural area not in a flood zone and had dangerous trees nearby. There were in-laws who provided a little support but there was a st rong professional support system. The mother experienced a hurricane and thinks Hillsborough County was hit by three hurricanes in 2004, though she did not evacuate. Participant 20: Caucasian male in his early 70s. Born in Wisconsin the participant moved to Hillsborough County 29 years ago. In the SpNP for two years he needs access to oxygen. He was bed-bound and was to be transported to a hospital. The wife who was in her la ter 60s was interviewed. They own an upper-income home in an urban area that was in a flood zone and had dangerous trees nearby. There was no informal support system but as participant was with Hospice there was a strong professiona l support system. The wife had experienced tornados. During the 2004 Hurricane Season he was not evacuated.

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453 APPENDIX R: CHARACTERSTICS OF WAVE 3 SpNP CLIENT PARTICIPANTS Participant 21: Caucasian, Hispanic male in his late 60s. Born in Puerto Rico (PR) his family moved to Hillsborough County 13 years ago. Wheelchair bound he has been in the SpNP for six months and was to be transported to an ARC shelter. He rents an apartment in a lo w-income ALF in an urban area in a flood zone. There was no informal or prof essional support system. He experienced three hurricanes in PR but did not ev acuate during the 2004 Hurricane Season. Participant 22: Caucasian, female in her late 40s. Born in West Virginia she moved to Hillsborough County two years ago. As a dialysis patient she has been enrolled in the SpNP for 18 months where she was assigned to a SpNS. She owns a mid-income home that was in a rural area not in a flood zone but surrounded by large trees. Other t han a friend she has no support system: informal or professional. She has experienced tornados, floods, and earthquakes. During the 2004 Hurric ane Season she evacuated twice. Participant 23: Caucasian, Hispanic female in her middle 60s. Born in Peru she worked in Puerto Rico for 30 years as a nurse and moved to Hillsborough County three years ago. She had heart problems and Type 2 diabetes. She has been in the SpNP for three years and was to be tr ansported to a hospital. She rents an apartment in low-income ALF that was lo cated in an urban area in a flood zone. She has three sons and a daughter living in Hillsborough County but they provide no support. She does not have a profession al support system. She worked in a hospital in Puerto Rico during a couple of hurricanes, but her family never evacuated their home. During the 2004 Hu rricane Season she did not evacuate. Participant 24: African-American female who in her early 50s. She was born and raised in Hillsborough County. She has knee and back problems that force her to use a wheelchair. She has been in the SpNP for only a few days and was to be transported to an ARC shelter. She rents a low-income apartment in an urban area not in a flood zone. The apartment complex had numerous large trees leaning over building. She has relative s in the area but they do not provide any care, nor was there any professional suppor t. She was reliant on her fianc who was present at the interview. She has never experienced a natural disaster. During the 2004 Hurricane Season she did not evacuate. Participant 25: Caucasian female who wa s four years old. She was born and raised in Hillsborough County. She has a heart monitor and has been registered in the SpNP for four years, where was assigned to Shriners Hospital. Her parents own a mid-income home in a rural area not in a flood zone. Her parents provide for her care and she received no pr ofessional care. T he father who was about 40 years old was interviewed. He grew up in California where he

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454 experienced fires, earthquakes and floods He believed that Hillsborough County was hit by three hurricanes in 2004 t hough he did not evacuate for any of them. Participant 26: Caucasian male in his early 60s. Born and raised in New Jersey he moved to Hillsborough County 18 year s ago. He was obese, had diabetes and high blood pressure, requires oxygen, and had complications due to a stroke. He can get around his apartment but needs a wheelchair to travel any distance. He has been in the SpNP fo r six months and was to be transported to a hospital. He lives with his boyfriend and has a professional support. He rents a mid-income apartment that was in an urban area not in a flood zone. He has experienced a hurricane. Though he be lieves that three hurricanes hit Hillsborough during the 2004 Hurric ane Season he did not evacuate. Participant 27: Caucasian, Hispanic male who was six years old; born and raised in Hillsborough County by P uerto Rican parents. With cerebral palsy, seizers and electric dependent he has been registered with SpNP for six years and was assigned to Shriners Hospital. His par ents provide a strong support system and there is a strong professional support system. Parent s own a mid-income house in an urban area not in a flood zone. His mo ther in her mid 30s was interviewed. Mother has never experienced a natural disaster and thought that Hillsborough County had been hit by three hurricanes in 2004; evacuating to a SpNS twice. Participant 28: Caucasian, Hispanic female in her early 80s. Of Cuban descent she was born and raised in Hillsborough Co unty. She has osteoporosis and was bed bound and had been in the SpNP for five years. Under the care of Hospice she was to be transported to a hospital. Cared for by her daughter, she had a strong family and professional suppor t system. The daughter owned a lowincome house in an urban area not in a flood zone. Her daughter who was in her mid 40s was interviewed. The daughter had experienced a tornado and thought that Hurricane Elena hit the county in 1985 and that three hurricanes hit during the 2004 Hurricane Season though she did not evacuate her mother. Participant 29: Caucasian male who was 59 years old. Born in Ohio he moved to Hillsborough County 30 years ago. He was obese, had heart problems and needed access to electricity. In the SpNP for one year he was assigned to a hospital. He had no informal or prof essional support system. He owned a lowincome home in an urban area that was in a flood zone. He had experienced floods and a forest fire. He did not evacuate during the 2004 Hurricane Season. Participant 30: Caucasian female in her mid 50s. Born and raised in Florida she moved to Hillsborough County over 20 years ago. She was bound to a wheelchair and would require help evacuat ing but was not r egistered for the SpNP, though she had been a member of the SpNP Planning Committee for three years. She had a strong informal support system but no pr ofessional care. She owned a mid-income apartment in an urban area that was in a flood zone. During the 2004 Hurricane Season she ev acuate once to a friends house.

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455 APPENDIX S: CHARACTERSTICS OF ELITE PARTICIPANTS Participant 1: Caucasian male in his la te 40s. Participant was a departmental director of a State of Florida agency that provides direct health care services to people in the community. This agency hel ps people register for the SpNP and sends personnel to SpNSs and the EOC during an evacuation of Hillsborough County. Participant 2: Caucasian female in her mid 50s. Participant was the director of a Hillsborough County agency with the missi on of providing information and education to people in the community. This agency sends personnel to the EOC during an evacuation of Hillsborough County. Participant 3: Caucasian male in his early 60s. Participant wa s the director of a NFP with weak ties to a national organizati on. NFP provides education, referral services and equipment to its clients and training to professionals on how to interact with people with disabilities. This agency helps people register for the SpNP. Participant 4: Caucasian, Hispanic male in his early 50s. Participant was the director of a retirement community in Hillsborough County. Agency helps people register for the SpNP a nd sends personnel to the SpNS with its residents. Participant 5: Caucasian female in her la te 40s. Participant was a departmental director of a State of Florida agency that provides direct health care services to people in the community. This agency hel ps people register for the SpNP and sends personnel to SpNS and EOC during an evacuation of Hillsborough County. Participant 6: Caucasian female in her late 40s. Participant was a departmental director of a State of Florida agency that provides direct health care services to people in the community. This agency hel ps people register for the SpNP and sends personnel to SpNSs and the EOC during an evacuation of Hillsborough County. Participant 7: Caucasian female in her la te 40s. Participant was a departmental director of a National Agency that provides direct health care services to people in the community. This agency helps people register for the SpNP and acts as a shelter to a targeted population during an evacuation of Hillsborough County. Participant 8: Caucasian female in her early 80s. Participant represented a volunteer group from a retirement communi ty in Hillsborough County. This group helps people register for the SpNP and helps county transfer people to SpNS and hospitals.

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456 Participant 9: Caucasian male in hi s mid 60s. Participant represented a Hillsborough County agency with the missi on of providing information and education to people in the community. This agency helps register people for the SpNP and sends personnel to the SpNSs and the EOC during an evacuation of Hillsborough County. Participant 10: Caucasian female in her early 60s. Participant was a departmental director of a State of Florida agency that provides direct health care services to people in the community. This agency helps people register for the SpNP and sends personnel to SpNSs and the EOC during an evacuation of Hillsborough County.

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About the Author Robert Ellsworth Tabler Jr., received a Bachelors Degree in Psychology, from the University of West Florida (UWF) in 1980. In 1990, Mr. Tabler received a Master of Arts Degree (MA) in Psychology from UWF. A second MA was earned in 1994, from t he Gerontology Department, at the University of South Florida (USF). In 1994, admitted into the doctorial program at the USF College of Public Health, Mr. Tabler focused his studies on aging issues and disaster management. While in the doctoral pr ogram, Mr. Tabler: received a Graduate Certificate in Disaster Management and hi s license as a Certified Health Education Specialist. Mr. Tabler, also graduated from the Public Health Leadership Institute of Flor ida and the Quentin Burdi ck Rural Interdisciplinary Scholars Program (both one-year programs). Robert serv ed four years as the editorial assistant, for the Journal of Cross-Cultural Gerontology and worked at the Center for Disaster Management and Humanitarian Assistance.


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The social construction of a special needs program for hurricanes
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Dissertation (Ph.D.)--University of South Florida, 2008.
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ABSTRACT: The overall purpose of this exploratory study was to comprehend how in the event of a hurricane Hillsborough County, Florida protected its elderly and disabled residents with special medical needs. This study used Social Constructionist Theory as a framework and Grounded Theory methodology in the collection of qualitative data. To understand stakeholder knowledge and how they constructed the SpNP, three focus groups were conducted, with representatives from agencies on the Planning Committee. Through 30 in-depth, semi-structured interviews, clients of the SpNP, provided insight into their knowledge of the program and how society influenced evacuation decisions. Finally, 10 in-depth, semi-structured interviews were conducted with elites or directors of agencies in the SpNP (bosses of stakeholders), who functioned as key informants to verify results.Examination of how SpNP stakeholders, perceived the meaning of community responsibility for people with special medical needs identified three themes: disaster experience, coalition building, and collective moral responsibility. Examination of how SpNP clients, constructed their meaning of the SpNP, identified five themes: registration barriers, SpNP knowledge, support systems, cultural expectations, and the media. Examination of societies influence on the evacuation decision of SpNP clients identified three themes: risk perception, evacuations barriers and the media. The study highlighted the importance of forming community coalitions to address the needs of vulnerable populations. It is also obvious that the state legislation needs to specifically define special needs and standards of care that must be provided at public and special needs shelters.Implications for public health practitioners, suggest the need to be more involvement with the media, in efforts to promote policies and the perception of risks due to hurricanes. Public health nurses need to receive training on caring for chronic illnesses. Mandatory training for social workers, nurses, and physicians who provide health care to the general population should be considered. There is a need for all agencies that provide services and advocate for individuals with special needs to participate in the SpNP, by registering and educating their clients. Many SpNP clients were confused as to the services provided, which could be partially solved by separating the programs transportation and SpNS components.
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Advisor: Elizabeth A. Gulitz, Ph.D.
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