Families seeking help for children with serious emotional disturbances : a qualitative case study

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Families seeking help for children with serious emotional disturbances : a qualitative case study

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Title:
Families seeking help for children with serious emotional disturbances : a qualitative case study
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Hanjian, Jini M.
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Tampa, Florida
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University of South Florida
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English
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xii, 281 leaves : ill. ; 29 cm.

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Subjects / Keywords:
Mentally ill children -- Family relationships ( lcsh )
Child mental health services ( lcsh )
Dissertations, Academic -- Applied Anthropology -- Doctoral -- USF ( FTS )

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General Note:
Includes vita. Thesis (Ph. D.)--University of South Florida, 2000. Includes bibliographical references (leaves 203-227).

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University of South Florida
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University of South Florida
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027346059 ( ALEPH )
45273714 ( OCLC )
F51-00209 ( USFLDC DOI )
f51.209 ( USFLDC Handle )

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F A.MJ.LIES SEEKING HELP FOR CIDLDREN WITH SERIOUS EMOTIONAL DISTURBANCES: A QUALITATIVE CASE STUDY by JINI M HANnAN A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Anthropology College of Arts and Sciences University of South Florida May 2000 Major Professor: Michael V. Angrosino, Ph.D.

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Office of Graduate Studies University of South Florida Tampa, Florida CERTIFICATE OF APPROVAL Ph.D. Dissertation This is to certifY that the Ph.D. Dissertation of JINI M. HANJIAN with a major in Applied Anthropology has been approved for the dissertation requirement on November 5, 1999 for the Doctor of Philosophy E xamining Committee: Major Professor: Mic hael V. Ant:,rros ino Ph.D. Member: Susan Greenbaum Ph.D Member: Jay Sokolovsky Ph.D. Member : Albert Duchnowski, Ph.D. Member: Betty C. Epanchin, Ed .D.

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Copyright by Jini M Hanjian 2000 All rights reserved

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DEDICATION To my grandfather Robert Simon Pedelty who was always the be s t example of family love and caring And to the familie s described in thi s work who welcomed me so generou sly into their home s and lives.

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ACKNOWLEDGMENTS There are many people who provided support and encouragement to me during the research and writing of this dissertation. Special thanks go to my advisor, Dr. Michael V. Angrosino. I wish to thank the Research and Training Center for Children's Mental Health for the opportunity to return to the NACTS project. I owe many thanks to Dr. Al Duchnowski, Co-Director of the Center, and a committee member, for encouraging me to carry out the project we dreamed up. I want to acknowledge the support of my committee members: Dr. Susan Greenbaum, Dr. Jay Sokolovsky, and Dr. Patricia Waterman (who has retired) from the Department of Anthropology, and Dr. Betty Epanchin, College of Education. I am grateful to the USF Office of Equal Opportuni ty Affairs Grant-in-Aid Program that funded my internship. Unpublished data from the NACTS project was provided to me by Rick Brown, for which I am very gr atefuL I want to acknowledge the love and support I received from my parent s Joyce and Jerry Hanjian and from my extended family There were many friends who supported me most especially I wish to thank Cindy Stark, Su san Heron and Ardis Hanson Andrea and Emesto Fernande z Jan Nichols, Liz Akinyi-Kearly, Beverly Ward, Tiffan y Vergon, and William Lester. Working at the Louis de Ia Parte Florida Mental Health Institute al s o afforded me many s upportive and creative coworkers and supervisors and I wish to thank them all, particularly Dr. Larry Dupree Dr. Max Dertke and Dr. Donna Cohen.

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TABLE OF CONTENTS LIST OF TABLES v LIST OF FIGURES Vl LIST OF ACRONYMS Vll ABSTRACT X I. INTRODUCTION II. Purpose and Research Propositions 2 Multiple-Case Study Framework 4 Application of the Case Study Methodology 4 Development of the Exploratory Multiple-Case Study 8 Data Analysis, E xa mining Rival Theories and Propo s itions 1 1 Significance ofthe Study 13 Significance for the Fami lie s and Children' s Mental Health 13 Service System s Significance for Applied Anthropology 16 Organization of the Dissertation 18 HISTORY OF CHILDREN'S :MENTAL HEALTH SERVIC E SYSTEMS, POLICY AND RESEARCH National History, Policy and Research Service Systems Prior to 1980 Federal and State Efforts 20 22 ?'"' -.:> 24 Service Systems Trends Afte r 1980 27 Important Trends in the Child and Adolescent Mental Health 37 Service Systems Important Trend: The Development of the Child and Adolescent 39 Service System Program (CASSP) Important Trend : The Development of a "System of Care Model 42 Important Trend: The Development of Demonstration and 44 Innovative Programs Important Trend: The Development of the Idea of Family 48 Centered Care

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II. HISTORY OF CHILDREN'S MENTAL HEALTH SERVICE SYSTEMS, POLICY AND RESEARCH (Continued) Important Trend: The Development of Advocacy Efforts 51 Important Trend: The Development of Research Agendas and 55 Centers State of Florida and Hillsborough County Service Systems 62 Hillsborough Com1ty 67 III. ANTHROPOLOGY AND THE STUDY OF CHILDREN AND 74 MENTAL HEALTH Sociocultural Research in Children's Mental Health Service Systems 75 Anthropological Research in the Socialization of Chi ldren 83 Medical Anthropology Theory 94 IV. CASE STUDY METHODOLOGY 97 Development of the Case Study Methodology 98 A Case Study Definition 99 Case Studies and Context 100 Case Studies and Bom1daries 100 Case Selection and Research Design 102 Yin's Case Study Methodology Approach 103 Yin's Case Study Definition 103 Types of Case Studies 104 Analytic Generalization and Replication Logic 106 Case Study Research Plan and Questions of Quality 107 Multiple-Case Study of Families Seeking Help for Children with SED108 Research Plan Purpose and Questions 109 Unit of Analysi s 110 Case Selection 110 Data Collection and Database 112 Analysis 115 V. THE NATIONAL ADOLESCENT AND CHILD TREATMENT 117 STUDY AND THE MULTIPLE-CASE STUDY The National Adolescent and Treatment Study (NACTS) 117 The National Adolescent and Treatment Study-Survey Findings 120 Descriptive Characteristics of the NACTS Participants 121 Service Utilization P" _.) Psychological and Adaptive Functioning 126 Soc ial Community and Family Fm1ctioning 129 Outcome Measures 135 Substance Abuse 137 .. 11

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V. VI. THE NATIONAL ADOLESCENT AND CHILD TREATMENT STUDY AND THE MULTIPLE-CASE STUDY (Continued) The Multiple-Case Study-Three Stories In Each Case Case A CaseB The Story ofthe NACTS Data Family and Home Onset of Problems, Diagnoses and First Services Service Paths Postscript ANALYSIS: THEORIES OFF AMIL Y AND PROFESSIONAL RELATIONSHIPS Theories of Family and Professional Relationships Enabling and Empowering Families Family and Professional Partnerships Anthropology of Biomedicine Proposition 1: Enabling and Empowering Families Operationalization of the Proposition's Characteristics Analysis Implications Proposition 2: Family and Professional Partnerships Operationalization ofthe Proposition's Characteristic s Analys i s Implications Propo s ition 3: Perception of Youth Outcome s Operationalization ofthe Proposition s Characteristics Analysi s Implic a tion s Di s cussion 141 142 142 143 144 147 149 154 155 158 158 161 163 166 166 167 175 176 176 177 183 185 18 5 186 189 191 VII. llv1PLICATIONS AND CON C LUSION S 194 Implications for the Children' s M e ntal Health Service Systems 194 Implication s of the Research Propositions 196 Implications for Applied Anthropology 198 Limitations of the Multiple-Case Stud y 199 Recommendations 20 2 F ollow-Up to the Study 202 Applied Anthropology 202 Public Polic y for the Children's Mental Health Servic e Systems 202 REFERENCES 203 111

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APPENDICES 228 Appendix 1. The Study Question for the Exploratory Multiple-Case Study 229 Appendix 2. Informed Consent Form, Parent 230 Appendix 3. Informed Consent Form, Subject 232 Appendix 4. Exploratory Multiple-Case Study Mini-Ethnography 234 Appendix 5.Case A Report: The Dodds' Story 237 The Mother's Story 239 The Beginning-Hearing From the Professionals 239 The Professionals Explanations and the Mother's Beliefs 243 Working Vvith the Professionals 247 A Mother's Hopes and Dreams 251 The Son's Story 253 Why I Was in Special Education Classes 253 Going to Special Education Classes 255 A Son s Hopes and Dreams 257 Appendix 6. Case B Report : The Brennans Story 259 The Mother s Story 261 The Beginning-Hearing From the Professionals 262 The Professionals' Explanations and the Mother's Beliefs 263 Working with the Professionals 266 A Mother s Hopes and Dreams 269 The Son's Story 271 Why I Was in Special Education Classes 271 Going to Special Education Classes 273 A Son's Hopes and Dreams 279 ABOUT THE AUTHOR End Page lV

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LIST OF TABLES Table Children s Mental Health Service Systems: 29 National History Policy and Research Table Kindergarten through 12th Grade, Exceptional Students (ES), 64 and Emotionally Handicapped (EH) School Enrollment Increases for Florida and Hillsborough County, 1952-53 to 1992-93 Table Children s Mental Health Service Systems : 69 Florida History, Policy, and Re s earch Table IV-1 Table for Florida School ParticipantsPreliminary Selection, 113 October 29, 1991 Table National Adolescent and Child Treatment Study 122 Summary of Wave 1 (1985-1986) Participant Characteristics Table V-2 National Adolescent and Child Treatment Study 125 Summary of Service Utilization Table V-3 National Adole scent and Child Treatment Stud y 127 Summary of Wave I and Wave 7 Diagnose s Table V-4 National Adolescent and Child Treatment Stud y 136 Overall Juvenile Offender Placements Table V-5. Multiple-Case Study Data and Comparative Data from the 145 National Adolescent and Child Treatment Stud y (NACTS) v

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LIST OF FIGURES Figure V-1. Case A: Multiaxial Timeline of Chuck Dodd's Behaviors and Services 148 Figure V-2. Case B: Multiaxial Timeline of Calvin Brennan's Behaviors 150 and Services V l

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LIST OF ACRO'N"YMS ADAMHA Alcohol, Drug Abuse and Mental Health Administration ADM Alcohol, Drug Abuse and Mental Health Services ARTS Alternati v es to Residential Treatment Study A YI Alaska Youth Initiative Demonstration Project CASSP Child and Adolescent Services System Project CMHC Community Mental Health Center(s) CMHS Center for Mental Health Services CRC Case Review Committee CST Core Services Team CYF Children, Youth and Families DEES Division of Education of Exceptional Students DSM Diagnostic and Statistical Manual EH Emotionally Handicapped EHA Education for All Handicapped Children Act EM Explanatory Models ES Exceptional Students FDLRS Florida Regional Diagnostic and Resource S y stem for E xceptional Students Vll

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FEFP FlAP F.L. FMHI F.S. FSPT HRS IDEA IEP IOM K MHSA MHSPY NACTS NAMI LIST OF ACRONYMS (Continued) Florida Education Finance Program Fostering Individualized Assistance Program Florida Law Louis de la Parte Florida Mental Health Institute Florida Statutes Family Services Planning Teams Health and Rehabilitative Services Individuals with Disabilities Education Act Individual Educational Plan Institute of Medicine Kindergarten Mental Health Systems Act Mental Health Service Program for Youth Nationa l Adolescent and Child Treatment Study National Alliance for the Mentally Ill NAMI-CAN National Alliance for the Mentally Ill-Child and Adolescent Network NAPCWA NARSAD NCMHC NI:MH NMHA NOMIC National Association of Public Child Welfare Administration National Alliance for Re searc h on Schizophrenia and Depre ss ion National Community Mental Healthcare Council National Institute of Mental Health National Mental Health Association National Organization for Mentally Ill Children Vlll

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LIST OF ACRONYMS (Continued) P ARC Pennsylvania Association for Retarded Children P.L. Public Law PRYDE Pressley Ridge Youth Development Extension RTC Residential Treatment Center(s) or Research and Treatment Center(s) SAMHSA Substance Abuse and Mental Health Services Administration SED Seriously Emotionally Disturbed SEDNET Network for Severely Emotionally Disturbed Children SMHRCY State Mental Health Representatives for Children and Youth UNO-CAP Mental Health Service Use, Need Outcomes, and Cost for Child and Adolescent Population Research Project US United States USF University of South Florida lX

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FAMILIES SEEKING HELP FOR CHILDREN WITH SERIOUS EMOTIONAL DISTURBANCES : A QUALITATIVE CASE STUDY by JINI M. HANJIAN An Abstract Of a dissertation s ubmitted in partial fulfillment of the r equirements for the degree of Doctor ofPhilosophy Department of Anthropology College of Arts and Sciences University of South Florida May 2000 Major Professor: Michael V. Angrosino, Ph.D. X

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The purpose of the dissertation is to examine family involvement in the treatment oftheir children with serious emotional disturbances who receive special school services, and the family interactions with service providers that impact on the children's functional outcomes. Using data from a multiple-case study, three explanatory propositions on family-professional involvement and interactions are examined. The multiple-case study data and analysis are based on the family perspective. The propositions were examined using the logic of pattern matching as defined by the case study approach of Robert Yin. The first two propositions were examined using a variation of pattern matching labeled rival theory. These propositions are: 1) Effective services function by promoting the capabilities and competencies of families to mobilize resources and perform parenting responsibilities in ways that have empowering consequences ; and 2) Effective services function by allowing families to identify their own needs and choose the extent to which they can or will participate in the services that satisfy their needs and preferences. Analysis suggests that a combination of the two rival theories best matched the data, and a rewritten proposition is suggested: Effective services function by recognizing and helping the family utilize their O\vn family functioning style, and by allowing the family to identify their own needs and choose the extent to which they can or will participate in services that satisfy their needs and preferences. The third proposition looks at youth outcomes from the family's perspective in comparison to the professional's perspective. The third proposition is based on the anthropology of biomedicine model, it is: The perception of youth outcomes is defined XI

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by the domains of reference for the different groups (parents and professionals). The case study data showed that families do identify outcomes for their children, and that their expectations are different from the professionals. Analysis of this proposition suggests that children's outcomes are impacted by those differences and that the family may be satisfied with child outcomes not considered appropriate by the professionals. Negative impacts on child outcomes and measurement of service quality may occur if professionals do not understand the family perspective. Abstract Approved:-------------------Major Professor: Michael V. Angrosino, Ph.D. Professor Department of Anthropology Date Approved: __ _._y_-----'--1+9--_6---V ______ Xll

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I. INTRODUCTION According to John van Willigen (1993) and Michael V. Angrosino (1976), applied anthropology entered a new stage of development in the early 1970s. Van Willigen writes of the present as the "policy research stage" characterized by anthropologists employed as consultants or full-time staff members of the agency". This was certainly the case for me once I had graduated with a master's degree in applied anthropology in 1979. I have worked for one county government and one university research institution in a variety of jobs that mostly required skills in program evaluation and monitoring, policy applications and research. Along the way I worked on the first three years of a very exciting national project enitled the National Adolescent and Child Treatment Study (NACTS), located at the Research and Training Center for Children's Mental Health, Louis de Ia Parte Florida Mental Health Institute (FMHI), University of South Florida (USF), in Tampa, Florida. As I left my job with NACTS to begin a new job in the FMHI Dean's Office and to begin classes in the USF Ph.D Program in Anthropology, I had the audacity to say to Dr. Albert Duchnowski, Co-Director of the Research and Training Center at that time, that I wanted to come back to the NACTS project for my internship in applied anthropology. His reply was that would be fine, but what can an applied anthropologist do in the field of children's mental health service systems? 1

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After considerable work and discussion, Dr. Duchnowski and I agreed on a specific qualitative research project that I conducted during my internship in 1991-92. My project was developed as a exploratory multiple-case study with the specific purpose of examining family strategies for finding help and working with service providers for children identified as seriously emotionally disturbed. Part of the project was also to evaluate whether the case study was a viable methodology for the exploration of family interactions with the children's mental health service systems. It was also hoped that the case study project would help develop ideas for further study of family interactions with service systems. For this project I became the consultant anthropologist assigned to this one specific project, a different experience than my usual staff jobs. My challenge was to find out if applied anthropology had a place 1) in the field of children s mental health service systems research, 2) in the study of family involvement in their children's treatment, 3) in the study of family interactions with mental health professionals, and 4) in the use of non-traditional methods both for the children's mental health field and for anthropology. Purpose and Research Propositions The purpose of the dissertation is to examine family involvement in the treatment of their children identified as seriously emotionally disturbed who are receiving special services from a school and family interactions with service providers and the possible impact of those interactions on the children's functional outcomes. Using the data from my internship's multiple-case study, three explanatory research propositions on family-professional involvement and interactions are examined. The multiple-case 2

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study data are based on the family perspective and the analysis of the propositions are examined from that perspective. The first two propositions are based on rival theories about family involvement in service programs. The first theory, developed by Dunst, Trivette, and Deal (1988), may be described as enabling and empowering families. The rival theory, developed by Gartner, Lipsky and Turnbull (1991), may be described as family-professional partnerships. The two propositions are written so that these rival theories are examined using the multiple-case study to see which theory best matches the data. These two propositions are: 1) Effective services function by "promoting the capabilities and competencies of families to mobilize resources and perform parenting responsibilities in ways that have empowering consequences" (Dunst 1995: 15). 2) Effective services function by allowing families to identify their own needs and choose the extent to which they can or will participate in the services that satisfy their needs and preferences (Gartner Lipsky and Turnbull 1991 ). The third proposition looks at the perception of youth outcomes from the family perspective and is compared to the professional perspective. What the family expects from services, and outcomes for their child are different from the outcome expectations of the service provider. The differences in perceptions and expectations are examined using medical anthropology theory in the tradition ofKleinman (1980, 1988). The anthropology of b i omedicine provides a theoretical framework to look at the differences in family and professional perspectives and interactions, and the impact tho se differences may have on the child s functional (i.e., ability to function at home, school and commu.nity) outcomes. The third proposition is: 3) The perception of youth outcomes is defined by the domains of reference for the different groups (parents and professionals) (Kleinman 1980, 1988). 3

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Multiple-Case Study Framework Application of the Case Study Methodology With the shift to family-centered care in children's mental health service systems there is a "need for research to look at the issue through a family perspective not only to identify problems, but to select data collection methods and establish the general conceptual framework for defining issues" (Duchnowski and Friedman 1990:8). Friesen and Korol off write that "there is a need to expand the repertoire of research methods to accommodate the complexity of the service system including family support programs" (1990:22). There was interest on the part of the FMHI Research and Training Center faculty for exploring the use of alternative or complimentary methodologies to the NACTS survey. When asked why there was an interest in the qualitative case study methodology Dr. Duchnowski said that the quantitati v e NACTS s urvey had done a good job of discov e ring the syst e m s and s ervices u sed and describing the youths' and familie s characteristics. Howe v e r, it had not provided a good feel for the specific services that were a c tually received how satisfied the families were with the s ervices when and how the y began to use the servic e systems what happened to the children and how they got where they were today (Personal Communication 1992). With the interest in gaining the families' perspectives and asking a variety of exploratOI) "how" and "why" questions that the quantitative NACTS survey could not addre s s the qualitative cas e study wa s s elected as an appropriate methodology for an in-depth study of the families' searches for and u s e of services. The c ase study methodology was al s o thought to be appropriate for the exam i nation of the relationship between the famil y and care givers o ver a long period 4

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of time and for exploring the families' opinions and satisfaction with the service systems they did utilize. I, too, had an interest in using an alternative methodology in the study of families and children. There were several considerations to the selection of methodology including a short data collection period (four months), the wish to explore a number of "how" and "why" research questions, and the need to account for the sociocultural or ecological context of the family. The case study methodology fit these parameters. The tradition in applied anthropology regarding methodology is twofold, i.e., to seek out research tools and methodologies that fit the demands of applied work and to contribute to the development of the discipline of anthropology Anthropologist George M. Foster articulated this balance of interests when he wrote, The demand s of applied anthropological work have resulted in better research method s and in the extension of fields of interest to areas of culture previously little s tudied. As a re s ult of the stimulus of applied research, anthropological data and theory are far more varied and far richer than would otherwise be the case (1969 : 152). The use of the case study methodology is an example of accepting thi s challenge to balance applied re search needs and contribute to the discipline of anthropology. The case study methodology is known to applied anthropologists, however it has not been highly utilized. Foster include s the case study as one of the repertoire of approaches for applied anthropology. He writes that the case study methodology i s used in the development of hypothe s es and generalizations for extension to other cases "to be tested, accepted, rejected or modified (Foster 1969 :64). Pelto and Pelto also discus s the case study methodology in their book, Anthropological Research: The Structu re of Inquiry (1978). They write that the method is best applied to study social phenomenon 5

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that can be delimited and observed in a large number of instances. Most of their discussion involves the use of the case study methodology with case law, however, they write that it can also be a profitable approach when applied to questions of traditional healing, witchcraft, religion, economic transactions and other cultural aspects. Pelto and Pelto caution that the case study methodology, as well as other less traditional approaches, "requires a strong supporting mass of contextual, descriptive information" (1978:243). They give an example involving anthropological research in a West Side Chicago mental health program conducted by SchensuJ and his associates (1973, 1975). Their program included a variety of research projects (e.g. research into local health beliefs and on folk healers) and communication activities (e.g establishing a health clinic with the support of local physicians developing mental health training). Pelto and Pelto attribute much of the success of the Chicago project on the "masses of basic descriptive data from several different household surveys" (1978 : 244). The Chicago project used both quantitative surveys and a number of qualitative methods. Household assessments afforded the researchers a large amount of contextual data necessary to carry out the goals of the project. Part of the challenge of this multiple-case study project was to test a methodology that was not as well known to applied anthropology as some other methods, but still retain the ability to gather the contextual materials seen as essential to the anthropological medical model. The anthropology of biomedicine model was used a s the theoreti c al framework to design the original exploratory case study questions, to select the cases, and to collect the data. The definition of a case stud y used in this project is of an inquiry that investigates a contemporary phenomenon within its real-life context" 6

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(Yin 1989:23). For the case study methodology used in my project, context was an essential element. The design of the case study was to purposefully explore in-depth the thinking, opinions, and actions of the two families that took part in the research. I learned as much as possible from the families the context oftheir neighborhoods, communities, schools, and local cultures. I also studied the history and context of the national, state and local mental health service systems that impacted the families and present this material in Chapter II. In agreement with Dr. Duchnowski, I carried out the mutiple-case study project in order to begin to learn how and why the participant mothers made their decisions, why they behaved as they did toward school personnel, and what they believed was wrong with their sons that would require years of special education. There was also a seco ndary goal to learn from the young men what they thought about the services the y received, how they reacted to their schools, what they thought about being labeled se riously emotionally dis turbed and how that label impacted their lives. Qualitative m e thodology is well suited to studyin g family proce sses, organizational proce sses and the interactions that occur between families and systems such as children's mental health services systems (Gilgun, Daly and Handel1992 ; Schultz 1995; Schwartzman 1993). The approach emphasizes the meanings people place on their words and actions the various realitie s of the family members, and the social, cultural and psychological context. Ultimately, a qualitative methodology suc h as the case study used h e re is contextual res earch (Ambert et al. 1995:881 ). In contrast to the NACTS study, which does not look at the individual in the quantitative survey the qualitative case study of these two familie s locate s them in their own place and time. The descriptions provided 7

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by the families show how they dealt with particular situations within the context of the schools, medical systems and other services available in their communities. However, I would emphasize that the qualitative case study is a complementary project to the NACTS survey. The two families and their children who took part in the case study were drawn from the NACTS sample and fit the general profile of other families and children in the survey. The importance of the pilot case study is that it can begin to ask the contextual and complex "how" and "why" questions not approached by the NACTS survey. If the multiple-case study project can begin to show that the case study methodology can "expand the repertoire of research methods to accommodate the complexity of the service system including family support programs" (Friesen and Koroloff 1990:22), and present the family perspective including the elements of the world that family members find important, rather than those dictated primarily by extant research", a first step in the development of this alternative methodology will have been taken (Ambert et al. 1995:880). Development of the Exploratory Multiple-Case Study With the decision to use Yin's case study methodology approach the research plan was developed. A case study research plan includes these components : 1) the study's questions; 2) its propositions, if it is descriptive or explanatory, or a purpose if it is exploratory; 3) its unit(s) of analysis, and the decision to use a holistic design or an embedded design; 4) the logic linking the data to the propositions and research question, accomplished through the case study data base and analysis ; and 5) the criteria for interpreting the findings, or how well the questions have been answered (Yin 1989:29). Yin's case study methodology approach and the research plan for the multiplecase study are more fully described in Chapter IV. This study met Yin's criteria for a 8

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multiple (i.e., two cases), holistic (i.e., one unit of analysis, the family), exploratory (i.e., exploration of the family search for help) case study. It is important to understand that the multiple-case study was designed as a contrasting study to the NACTS survey because it could be used to ask questions that were not possible through the survey. The case study project was also a complementary study to the large NACTS survey, with the purpose of expanding the understanding of survey data through case study data. Two NACTS participant families took part in the case study interviews. These families were carefully selected from the survey sample families to fit specific characteristics required by the multiple-case study research question (Appendix 1 ). Selection characteristics included children living in the community with at least one of their biological parents and attending local schools, one case in an urban area and one in a rural area and both cases were to be male s (75% of the NACTS s ample was male). C ase selection was based on replication logic" or purposive sampling so that each case was selected to test and revi se the initial que s tion s (Ragin 1992a ; Yin 1989). Using replication logi c if a serie s of case studies are performed replication is considered to have occurred if at least half of the cases obtain similar results. For the purposes of this pilot study, two cases were selected for several reasons. Firs t little was known, from th e family s perspective about how familie s interacted with s ervice providers making the research que s tions exploratory. I could not be sure I would be asking the right qu e stion s or that familie s would recognize the que s tions a s legitimate until the interviews had begun Second, I had a limited four-month data collection period and data collection for both case studies had to be conducted during the s ame time period. Third, the interviews for the case s tudies were in-depth and time 9

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consuming, requiring considerable time with each participant Fourth, NACTS provided limited funds to pay the participants ($1 00 for each participant). Two cases were selected due to these limitations, however, I wanted to retain some ability to compare and contrast cases using a minimal multiple-case design (i.e., two cases), thereby broadening my ability to explore the research questions. Dr. Duchnowski was particularly interested in selecting contrasting cases for a number of characteristics such as rural vs. urban homes, and the young men's success in the community. With all of these reasons in mind, we felt that two cases could be completed in the time allowed and data from a minimum oft\vo cases would generate more data, contrasts bet\veen cases, and further research questions than a single case. Over the data collection period I interviewed both the participant mothers and their sons identified by the local school system as seriously emotionally disturbed Each participant was interviewed separately twelve to thirteen times in his or her home until all the research questions and the case study interview guide (i.e., mini-ethnography) were fully explored and confirmed For Case A, the Dodd family, I also visited the youth's school and interviewed his teacher and principal. For Case B the Brennan family, the young man gave me a tour of his neighborhood since he had graduated from high school the year before. I used an unstructured interview format that was modified from Kleinman's mini-ethnography described in his book The Illness Narratives: Suffering, Healing and the Human Condition (1988:230-236). Kleinman s mini ethnography was originally developed as tool or method for c1inicians to better understand and care for chronically ill patients. He wished to provide clinicians with a way to place themselves into the patient's illness experiences from the patient's 10

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perspective. Although he is discussing chronically physically ill patients in The Illness Kleinman's definition fits chronic mental illness: Chronicity is not simply a direct result of pathology acting in an isolated person. It is the outcome of lives lived under constraining circumstances with particular relationships to other people. Chronicity is created in part out of negative expectations that come to be shared in face-to-face interactionsexpectations that fetter our dreams and sting and choke our sense of self Patients learn to act as chronic cases; family members and care givers learn to treat patients in keeping this view (1988:180). The children identified as seriously emotional disturbed that I interviewed when working on the NACTS survey fit this definition as did the patients suffering from physical pain described by Kleinman. His mini-ethnography provided an approach that collected the story of the illness from the patient and the family, and that looked at the meanings of the illness and its consequences, and the social situations that helped determine the meaning of the illness. The mini-ethnography provided the theoretical framework that allowed me to explore with the mother the story of her son s illness, the services received by her son, her interactions with the services providers, and the consequences of his illness to her son and family (Appendix 4). The young men were interviewed and asked to talk about their experiences as students in special education. Data Analysis, Examining Rival Theories and Propositions Data analysis began as data collection neared completion. The task at that point was to determine if all the research questions could be answered and if the miniethnography had been fully explored. Thus a preliminary case report was written for each case and was shared with the mother This gave the mother a chance to further discuss any areas she wished, make corrections to the descriptions, and for me to confirm 11

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that I did not have any gaps in the data. Updated versions of the case reports are presented in Appendix 5 for Case A, and Appendix 6 for Case B. As described above in the the multiple-case study data is also used to analyze three propositions about family involvement in the treatment of children with SED receiving special services from a school system, the family interactions with service providers, and the possible impact of those interactions on the children's functional outcomes. The basic logic of analysis is that of pattern matching. Yin writes that pattern matching logic compares an empirically based pattern (the case study) with a predicted one (or with several alternative predictives)" (1994: 106). The third proposition, which explores the differences in perceptions of youth outcomes between the parents and professionals, is based on the anthropology of biomedicine model. A variation ofpattern matching is the use of rival explanation as patterns The rival explanations must involve a pattern of independent variables predicted by one theory or model that is not present in the rival theory or model. The rival propositions are written to reflect predicted differences of the models. The concern of the case study analysis is that the "overall pattern of results and the degree to which a pattern matches the predicted one" (Yin 1994:1 08). The rival theories (First theory: enabling and empowering families, Rival theory: pareQt-professional partnerships) are used to develop the first two propositions. The multiple-case study data are then used to analyze, through the use of pattern matching, the three propositions from the parents' perspectives. 12

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Significance of the Study Significance for the Families and Children's Mental Health Service Systems Over the last 30 years, federal public policy for children's mental health service systems has slowly shifted away from institutional care of children with serious emotional disturbances toward community-based care However, it has only been since the early 1980's that a national effort has been made in children's mental health services systems to develop a model of community based care and to encourage its acceptance at state and local levels. In 1963, the Community Mental Health Centers Act (Public Law No. 88-164) "emphasized deinstitutionalization and outpatient care" for adults (Kiesler 1993: 1 079). Although the Act had some impact, albeit mixed, on adult institutionalization, children were not mentioned in the law and it had no impact on the numerous systems that provided mental health services for children Unfortunately, the actual of children under 18 years of age remained in large part in institutional settings because of existing state policies and the funding structure driven by private and public insurance (Davis et al. 1995: 165). In addition to these factors, there were a number of service providers, such as schools, welfare, and juvenile justice, that also provided children and adolescents with mental health services, often at greater rates of out-of-home and out-of-state placements than mental health programs (Davis et al. Knitzer and Yelton Yelton 1993 ). Since the 1970's, there has been a shift in the locus of institutional care for children and adolescents from state-funded hospitals to private institutions, including "residential treatment centers (RTC's) . ;private psychiatric and ... "quasi units" [in] those general hospitals with organized systems of psychiatric care but not meeting formal requirements ... (Kiesler 1993 :93). From 1980 to 1985, for these three 13

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institutional categories, "the number of [psychiatric inpatient] episodes increased from 231,000 to 566,000 or 145%" (Kiesler 1993:93). Most states currently have child and adolescent state units dedicated to developing a wide range of services, but there are continuing indications of the overuse of residential and hospital placements in the majority of states (Davis et al. 1995). Federal policy (P.L. 102-321) now requires states to develop plans that provide integrated services, including communit y based mental health services for children and adolescents with serious emotional disturbances (Committee on Aging and Human Services 1994). In addition the values and practices of community service providers have steadily moved away from institutionalization toward community care and "individualized service models" (Bums and Friedman 1990:95). This shift includes the recognition that the family of a child w ith a seriou s emotional di s turbance require s as much s upport a s doe s the child. Of equal importance parent s have become recognized and v alu e d a s expert s in their children's problems and needs, and are more often participating in service planning and care for their children with many parents involved in org ani z ed advocacy effort s Throughout the United States there is growing recognition b y policy make rs, service providers re s earcher s, and parent advocates that the former models of blaming the familie s and remov i n g the child from the horne environment is not helpful to the child o r the family. In the new indi vidualized s ervice model, "the concept of a partnership between parent s and professionals expand s th e more traditional role s of patient' and client' the parents tend to a ss ume" (Friesen and Korol off 1990: 18-19). This model is not yet accept e d b y all s ervices and pro v iders of children's mental health services but it is gainin g acceptance and it is in the forefront of 14

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state-of-the-art program delivery and research. These changes will be discussed in more detail in Chapter II. The shift in policy toward community-based services and family-centered care had major implications for service prov i ders and families. Much of the impetus for change in children's mental health service systems on a national level occurred with the 1984 legislative authorization for the creation of the Child and Adolescent Service System Program (CASSP) through the National Institute of M e ntal Health (NIMH) (Knitzer 1993 : 9). The primary purpose ofCASSP was to provide "competitive challenge grants to the states to improve children's mental health in very specific ways" (Knitzer 1993:9). Family focused goals for CASSP were to encourage "the states to strengthen family-based advocacy" and to "involve families in planning and treatment efforts" (Knitzer 1993 :9 ; Hendrick s 1990 : 6). CASSP was al s o instrumental in d e finin g a national res earch a g enda for the ch i ldr en's mental health serv ice s ystem s which included s upporting familie s through community-bas e d s ervices. At a 1 9 90 CAS S P-sponsored Techn i cal Assistance Research Mee ting Robert Friedman, Director of the Florida Res earch and Training Center for Children s Mental Health, stated that a potential research issue w a s the involvement and support of families. He went on to s ay, Thi s has been a critical focus of CASSP since its earliest phase and there are many related research opportunities. For example people consistently recognize the need to in v olve famili e s in treatment planning but there are few people who feel comfortable about the strate gi e s th e y have developed to achieve this and there has been little evaluation. Research i s needed to compare different strategies or to evaluate strategie s from the family perspecti v e, as well a s from the treatment plan perspective to determine th e outcomes of involving parents in different way s .. It al s o is important to look at the relationship of involvement of parents to satisfaction, and the relationship of both involvement and satisfaction to outcomes for the child and famil y ( F riedman 1990:3-4 ). 15

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With the shift in models of treating children with serious emotional disturbances and with the growing awareness that families must be included in planning and service delivery, it has become vital that the family perspective be understood. Friesen and Koroloff make the case when they write, "We need a better understanding of how families go about seeking and getting the support they need as well as an examination of how formal and informal resources are melded into a comprehensive support system for each family" (1990: 17). To understand the family's strategies for helping their child, research must examine the family and the service system within their community. The research conducted for this dissertation is one attempt to use a alternative qualitative methodology as a way to learn about and document the family's perspective. Significance for Applied Anthropology The significance for applied anthropology in using the case study methodology and the anthropology ofbiomedicine model to e xamine children's mental health service systems i s the expansion of th e discipline into an understudied area and the application of the method and model s to a complex system with a number of poorly understood i nterrelationships. The field of children s mental health service systems is quickly developing new ways to care for children with serious emotional disturbances, including the development of models for community s y stem s of care, and the inclusion of the family in the planning and care of their children. Friesen and Koroloff have found that, in the last 15 years there has been a grov.ing recognition of the need for children's mental health to go be yond formal support systems and include informal support or '"natural helping systems" from the family perspective (1990: 17). They write that "a family-centered approach to service embodies a comprehensive understanding of how 1 6

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families identify their needs, seek support, and use services through both formal and informal means" (Friesen and Korol off 1990: 17). Applied anthropology has the opportunity to impact the understanding of service delivery to families through the use of medical anthropology models that articulate the interactions between the family and the practitioner, and the interactions between agencies. These models are able to handle the complexities of systems like children's mental health service systems that are in reality many different interactive systems. The anthropology of biomedicine model, as used in this dissertation, is suited to explore the differing explanatory models the families and professionals have of why a child is labeled seriously emotionally disturbed and to explore what occurs within their interactions (Kleinman 1980). In addition, the case study methodology used for this project has not yet been fully exploited by applied anthropologists and provides a challenge to broaden and enrich the repertoire of approaches used by the discipline. If the goal is to understand and improve the specific cultural systems that make up children s mental health service systems with the ultimate objective of providing true family-centered care, applied anthropology has a role. With the sociocultural models and flexible methodological approaches (although not exclusive to the discipline) concentrated in applied anthropology, its practitioners can bring a fresh approach to the study of services to children and their families that is needed by the children's mental health services systems. 17

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Organization of the Dissertation Chapter II provides one part of the context for the multiple-case study with a discussion of the history of children's mental health services systems both nationally and in Florida, where the case study took place. This description provides the context of the service systems that existed and that the case study families dealt with over the years. Chapter III discusses the contributions of anthropologists and sociologists to the study of children's mental health service systems the study of socialization and includes a discussion of the medical anthropology theory used with the multiple-case study research plan and data analysis Chapter IV discusses the case study as it has evolved as a methodology, Yin s specific approach and definition of the case study, and the multiple-case study's research plan Chapter V provides the other part of the multiple-case study context with a description ofthe NACTS survey and the research findings that have been garnered from the survey over the years. The second part ofthe chapter provides a description of the two study families and the service paths of the youths. Chapter VI includes the analysis of the three propositions. First, a description of the three theories used in the development and analysis of the proposition is provided. Next, each proposition is operationalized and examined using the multiple-case study data Final1y, another proposition is suggested with regard to the t\vo riv al propositions that better matches the multiple-case study data 18

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Chapter VII concludes the dissertation with a discussion of the implications of the study and analysis, and a discussion of the study's limitations and recommendations. The case study reports are found in Appendix 5 (Case A) and Appendix 6 (Case B). 1 9

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II. HISTORY OF CHILDREN'S MENTAL HEAL m SERVICE SYSTEMS, POUCY AND RESEARCH "The past decade has seen important new gains in children's mental health, but the gains are fragile, and a second generation of reform is needed to ensure their survival and spread" (Knitzer 199 3: 14). In the United States the history of the children's mental health service systems has been one of neglect and aborted efforts. Only in the past twenty years has systematic change occurred in the systems that address the needs of children with serious emotional behavioral and emotional problems. More promising national and state policies and programs have been established in this area since the early 1980's than in any previous period. This chapter examines the historical context of the children's mental health systems through a review of the legislation, programs, conferences, research, and literature that had the greatest impact on the development of these systems. A study of the history of the children's mental health service systems is relevant to this research project for two reasons. First, an understanding of how the present systems were developed gives us insight into the political, cultural and social context of the existing children's mental health service systems. This help answer general questions such as why certain systems and programs exist and others do not, why funding is most often categorical, and why children must be labeled as SED to receive services. The second reason for presenting this history is to ask specific questions about how the 20

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cultural and social context impact the individual parent seeking help for his or her child with serious emotional disturbances. Not only must programs exist, but they must also be accessible to the parent and child. This means that the parent must be able to learn about a program must understand how the program can help, must not feel put off or intimidated, and must Jearn how to access and work with both the program staff and with the existing service systems. Since the basic question of this dissertation concerns how parents access and negotiate the children's mental health systems, this chapter provides the historical context within which the parents, service providers, and children must operate. Following chapters describe how the two families in the case study behaved within the existing systems and services Local systems such as schools, social services, community mental health s tate systems such as welfar e servic e s, mental health hospitals, delinquency services, and state-run educational services and federal sy s tem s, including national mental health and educational programs and centers for children' s mental health research and training are part of this history. Some of these s y s tems provide direct mental health services, such as the community m e ntal health services psychiatric foster care and s pecial education s chool programs. Other s y stems provide services that s upport the fam i lies and childr en, but do not necessari l y give direct mental health care, such a s welfare payment programs and juveni le justice courts All of these services become a complex mix of many different system s, each with their own rules, regulations cultural norms staff, servic e s funding and programs Add to this mix the rapid development of many of these s y stems over the last twenty years and it begins to explain wh y progre s s was seen as broad, but not deep (Knitzer 1993 ) 21

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After a brief review of the service systems most important to children's mental health prior to 1980, six recent and historically important trends in the children's mental health service systems are discussed. The discussion will also review systems in the State of Florida, closing with a brief review of the National Adolescent and Child Treatment Study (NACTS); the longitudinal survey that is the basis for this dissertation research For more detailed descriptions of the systems and their histories, there are several comprehensive reviews available on the children s mental health service systems history, litigation, and research (Boyd 1992; Deutsch 1949; Grob 1994; Holmes 1987 / 88; Institute of Medicine 1989; Joint Commission on the Mental Health of Children 1969; Knitzer 1982, 1984; Knitzer, Steinberg, and Fieisch 1990; Rhodes and Sagor 1974; Saxe, Cross, and Silverman 1987). National History, Policy, and Research A littl e over twenty y ears ago a conv e r g ence of eve nt s and people occurred that led to the development of the current mental health s ervice s y s tems for children, includin g the existence a number of key individuals and a g encie s throughout the United States. There had lon g been concern for childr e n and adolesc e nts with emotional and behavioral disorders. However, th e re had not been a coordination of effo rts like that begun in the early 1980 's. The rate s of mental illness in children and adolescents and the failure to provide service to all tho s e in need of car e was well documented over the years ( Joint Commi s sion on the Mental Health of Children 1969 ; Knitzer 1982 ; Saxe, Cross and Silverman 1987). The concerns for children and adole s cent s with seriou s e motional di s turbances coupled \vith s olid documentation on the rate s of mental illnes s es in ch i ldren 22

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and the general recognition of the failure to provide adequate services spavmed a massive change in the mental health service systems for children and adolescents. Service Systems Prior to 1980 In the United States, care of persons with mental illnesses had always been influenced by factors such as economic concerns, political expediency, population trends, theories on mental illness, and social and cultural conditions and beliefs. For instance, it was only after the colonial period in the Americas that the care for the insane became a concern beyond the local community and family (Deutsch 1949). The population during the colonial period was low and scattered, and each community cared for their ovm, if possible jailed the violent insane or moved the person to the next town if he or she \vas not closely connected to the local residents. Little could be done for the insane, and for the most part insanity was believed to be incurable and therefore not treatable. It was during the post-colonial period that states began to develop public asylums for the insane. The emergence of early asylums began for a number ofreasons, such as the beliefthat mental illness was incurable and that a person who was mentally ill was the responsibility of the state and should be cared for by the "community". As the general population grew, so did the need to care for many more people who were indigent and suffered from a mental illness. Moral treatment "a new reg1ment based on a minimum of mechanical restraints and a maximum of intelligent understanding" was developed by the French physician Philippe Pinel, and an English layman and Quaker William Tuke in the early 1790's (Deutsch 1949:90) The asylum movement expanded in the 1830's and 1840's with the introduction of moral treatment into state institutions, and the need to place "the patient in a total therapeutic milieu which accommodated the client's psychological

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condition" (Bell 1989:93 ). By 1876, "fifty-eight state asylums, ten city and county asylums, nine charitable institutions, and nine private asylums held 29,558 patients" ( Bell 1989:94). Children, if they received treatment were placed in the adult asylums. Federal and State Efforts The early 1900's proved to be a period of development for children's mental health services. The federal response to issues of mental illness in children began as early as 1909 with the White House Conference on Children, which recommended the development of programs for children with mental illnesses. No actions were taken on these recommendations at the federal level (see Table ll-1 for a detailed listing of important events in the mental health systems area). There were a few states that "developed permissive legislation" that provided education to handicapped children by the early 1900 s (Holmes 1987 / 88:9). Another important influence in the lives of children in the United States, and eventually in the treatment of children vvith mental illnesses, was the development of the public school system. Compulsory education laws were enacted as a reaction to the influx of immigrants during the late 1800's and early 1900's. According to Rhodes and Sagar, Between 1852 and 1918 nearly all the states enacted compulsory school attendance legislation. As the stability of American society became more tenuous ... the tendency toward rigid enforcement became increased ( 1874: 19). The schools' main goal was to define "normality" and become the primary socializing agent for all children, especially immigrant children, in the community. While defining normality the schools also defined deviance a s anything different from the majority's set of accepted behaviors, beliefs and attitudes. 24

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Although the public schools eventually became an important component in the system of care of for children with mental illnesses, at the turn of the century efforts to deal with this group of children in the public schools were minimal. The earliest efforts, "ungraded schools" for "mischievous and disruptive children", developed originally in New Haven in 1871, and later in New York (1874) and Cleveland (1875) (Hoffman 1974:53) In 1902, the Supervisor of Primary Schools in New Haven noted "that their ungraded classes were receiving three distinct groups of children who were lumped together in the special classes: "incorrigible boys, defective children and children who speak no English" (Hoffman 1974:54). In 1909, Dr. William Healy, part of the child guidance movement founded the Juvenile Psychopathic Institute. He was also the first to study the causes of juvenile delinquency. The child guidance movement marked the beginning of child p s ychiatry as a discipline in the United States. Clifford Beers with other s, founded the National Committe e fo r Mental Hygiene in 1909. Thi s org anization "revived notions about the treatability of mental disorder especially by early i ntervention with acute ca s es" (Morrissey 1989: 314 ) The National Committee and the Commonwealth F und jointly sponsored a 1921 conference on the prevention of juvenile delinquency. The outcome of the conference was "a five year demonstration program of child guidance clinic s (Fraser 1974 : 259). The child guidance clinics were s taffed with profe s sional care givers and, for the fir s t time, provided suitable care to "children with mental disorders who had not been involved with the criminal law system and labeled delinquent" ( F raser 1974:259). The next national level conferences were the White Hou s e Conference on Children in 1930 and the Joint Commission on the Mental Health of Children in 1969 25

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Both documented the worsening care of children with mental illnesses and were followed by the same lack of response seen after the 1909 Conference. Commission studies continued, the next being the Project on the Classification of Exceptional Children in 1975. This project again documented the poor care given to children with mental illnesses, the lack of support for the children and their families, and the "fragmentation of services" in the field (Saxe, Cross, and Silverman 1987:20). Unlike previous studies, a significant response occurred from one of the Project's recommendations, "that all children including the handicapped have access to education". This response was "the passage of Public Law 94-142, the Education for All Handicapped Children Act" (Saxe, Cross, and Silverman 1987:21). With the implementation ofP.L. 94-142, public schools became a primary service provider to children with emotional and behavioral disorders. Prior to the enacunent of this law, children with serious mental illnesses were not guaranteed a public education. K.nitzer wrote that the passage ofP.L. 94-142 in 1975, "probably marks the single most significant policy commitment to handicapped children this country made" (1982:69). Although there were problems in the enactment of the law, especially with the way many schools defined the term "emotionally disturbed" and with the stigma accompanying the label, P.L. 94-142 laid the ground work for how children would be identified and provided services by the public school systems throughout the country. Just three years later, in 1978, the President's Commission on Mental Health, Task Panel on Infants, Children and Adolescents again documented the lack of available services and the uncoordinated provision of the existing services. The Panel also recommended preventive services, "respect for ethnic differences", parental involvement, 26

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service coordination, a continuwn of levels of care, training of professionals, and "basic and evaluation research" (Saxe, Cross, and Silverman 1987:22). Service Systems Trends After 1980 On October 7, 1980 President Carter signed Public Law 96-398, the Mental Health Systems Act, into law. P.L. 96-398 was passed in response to the President's Commission that "recommended the formulation of a national plan for the chronically mentally ill" (Cameron 1989 : 139). This plan was a "continued national commitment to the CMHC (community mental health center) movement" and included provisions for the improvement and coordination of services to children and adolescents (Cameron 1989: 140). It was a landmark piece oflegislation that built on prior legislation providing community mental health services (P.L. 88-164 1963, and P.L. 92-255, 1972). However, Part B, the Alcohol Drug Abuse, and Mental Health Services Block Grant one of ten categorical programs for substance abuse and mental health services, did not provide specific funding for mental health services for children However, it was never enacted and was repealed by the Omnibus Budget Reconciliation Act (P.L. 97-35). The greater involvement of the community mental health system in services for children was a recommendation by yet another federal study conducted by the Select Panel for the Promotion of Child Health of 1981. The Panel focused on P.L. 94-142, Education for All Handicapped Children Act and public mental health service systems It found that educational services to handicapped children had improved, but stressed that much work still needed to be done to coordinate services within and between service systems. 27

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For the school year of 1980-81, Knitzer reported that the number of emotionall y disturbed children served in schools was 348,954 (1982: 138-139). In 1980, the number of children under 18 admitted to hospital inpatient units was 76,942 and the total admissions to residential treatment centers were 17,703 (Saxe, Cross and Silverman 198725). These numbers indicate a far smaller number of children served than the prevalence rates indicated. Later, in 1985, the ADM Block Grants Act (Public Law 99-117) provided 10% set-aside funding for children (Rochefort and Logan 1989: 149). This Act assured that the community mental health service system was involved in the care of children and youth v.rith mental illnesses. By 1985, two pivotal pieces of national legislation, P.L. 94-142 (Education for All Handicapped Children Act-EHA), and P.L. 97-35 (Omnibus Budget Reconciliation Act) and amendments to each law ( 1983 P. L. 98-199, EHA Reauthorization ; 1985 P .L. 99117, ADM Block Grant Amended) had established the public school systems in the s tates as the major providers of service to children with mental and emotional disorders. The CMHC systems were also involved, but were secondary providers in comparison to schools In addition, the design of the laws and systems did not provide for any coordinated cooperation between the two systems. There was still no guarantee that appropriate care was available for the majority of children in need. Prevalence rates for children and adolescents with mental and emotional disorders ranged from about 15% to 22%, approximately 6 to 8 million children (Brandenburg Friedman and Silver 1990 ; Costello 1989; Saxe, Cross and Silverman 1988:800 ) 28

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TABLE II -1 Children's Mental Health Service Systems: National History, Policy, and Research DATE EVENT IMPORTANCE OR IMPACT II 1880 National Association for the Protection The first national mental health association in the U.S. of the Insane and the Prevention of Its pUIJlose was public education, advocacy of early Insanity treatment, impro ve ment of care in asylums and "enlighten sta t e policy for the mentally ill (Deutsch 1949:313) The Association disbanded in 1886 I I 1909 White House Conference on Children "Recommended new programs to care for mentall y disturbed children" (Saxe, Cross, and Silverman II 1987 : 19). No federal actions taken follov.rin_g the rencrt 1909 National Committee for Mental With the publication of Beers book, A Mind That Found Hygiene, foWlded by Clifford Beers Itself, in 1908, the National Committee was formed and I reinvigorated the mental health reform mov ement at the local, state and federal le v els (Armour 1989) II 193 0 I White House Conference on Children I At the Conference new programs were again I I I recommended for chi ldie n with mental disrurbances and II a policy statement was made to the effect that these II I children "have the 'right' to develop the way other II children do" (Saxe Cross, and Silverman 1987:19) l 1946 National Mental H ealth Act I A federal effort to build psychiatric facilities and focus (P.L. 79-487) on three areas in the mental health field : r esearch. I I training of personnel and serv i ce (Bell 198 9 : I 09) I 1949 National Institute of M ental Health NIMH, created by P.L 79-487, and sign aled the (NIMH) beginning of a new fede r al role" in the funding, (P.L. 79-487) organization and initiation of the nation s mental health system (Cameron 1989 : 123) 1954 Brown v Board of Education "The Supreme Court affirmed and established the I principle that all children be given an equal educational opportunitY" (Holme s 1 987/88:9 ) 1955 Mental Health Stud y Act Established the Joint Commission on Mental illness and I I (P.L.84-I82) Health t o study the status of the mentally ill in the nation. The Joint Commission's final report in 1960 I recomm ended the establishment of a national mental I health program" funded by local state and federal funds. (Cameron 1989: 1 25). 1961 Project ReED, Nicholas Hobbs, Project Re-ED begun "ith a grant from NIMH. The principal res earcher. Project was an effort to reeducate children \\ith I emotional disturbances through a blend of social learnin g theo ries beha,ior modification and an ecological perspectiYe (Hobbs 1982). 1962 The National Committee for Mental Due to the merger "childhood mental illness was added I Hy giene, renamed the Natio nal Mental as one of the association's four major program I Health Association (NMHA), merged e m p hase s" t Ganison 1989a : 127). I v.ith the National Organization for Mentall v Til Children (NO MJC). 2 9

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TABLE n-1 (Continued) I DATE EVENT IMPORTANCE OR IMPACT II 1963 Community Mental Health Centers Act The Kennedy administration proposed and signed this (Mental Retardation Facilities and Act which provided "federal matching funds for a period Ci\11-IC Construction) of five years for the construction of community mental (P.L. 88-164) health centers offering a comprehensive range of mental health services" (Cameron 1989: 130). 1965 Elementary and Secondary Education The Act provided grants to stales for interagency Act planning and programs for special populations including (P .L. 89-313 Section 121) neglected and delinquent yo uth (Bazron 1989) 1966 Amendment to the Elementary and The Amendment mandated new and expanded Secondary Education Act, Title IV responsibilities for the U.S. Bureau of Education for the (P.L 89-750) Handicapped (Holmes 1987 /88). 1969 Joint Commission on the Mental The Commission's report, Crisis in Child Mental Health of Children Health: Challenge for the 1970's ( 1969) found that "the care of the emotionally disturbed child in this country has not improved -it bas worsened considerably" The report recommended expansion or establishment of efforts in the areas of service advocacy, prevention and research (Joint Commission on the Mental Health of Children 1969:5). 1970 National Community Mental NCMHC' s purpose "was to help community mental Healthcare Council (NCMHC) health centers improve their effectiveness"_ lobby Founded congress and work with NIMH and other federal agencies (NCMHC 1995 : 1) 1970 Education of the Handicapped Act Provided time limited grants to stales to expand and (P.L. 91-230) improve educational services and programs for children with handicaps (Division of Elementary and Secondary Education 1971 ) 1971 Pennsylvania Association for Retarded A landmark court case that provided mentally Children vs Commonwealth of handicapped students access to public education Pennsylvania (PARC) (Holmes 1987/88). (334 F Supp. 1257) 1972 Mills vs_ Board of Education of the A landmark court case that provided access for children District ofColurnbia 'vith handicaps to free public education (Holmes (348 F . Supp. 866) 1987/88). 1972 Community Mental Health Centers "The Part F program provided targeted funds for up to 8 Act, Part F, Children's Services years to stimulate and increase innovative mental health Program services for children and adolescents" (Knitzer (P.L. 92-255) 1984:908). The Part F program was repealed in 1974 30

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TABLE II-1 (Continued) II EVENT IMPORTANCE OR IMPACT II 197 4 Amendment to the Elementary and The Amendment "established a national policy on equal Secondary Education Act educational opportunity" and became the "basic (P.L. 93-380) framework" for P.L. 94-142. It also included the Family Rights and Privacy Act (Title V, The Buckley Amendment) (Bazron 1989:9). 1975 Project on the Classification of Studied several kinds of"disadvantaged" children"s Exceptional Children service systems and found the systems continued to be ineffective. Recommended "that all children including the handicapped have access to education", \vhich was enacted as P.L. 94-142 (Saxe, Cross and Silverman 1987 : 21) 1975 Education for All Handicapped The Act guaranteed all handicapped children, including Children Act (EHA) those with emotional disturbances, the right to a free and (P.L. 94-142) appropriate education. Prior to I 980, the "most significant policy commitment made to handicapped children" in the U.S (Knizter 1982: 69) 1978 President's Commission on Mental The Panel found that many recommendations from the Health, Task Panel on Infants Children 1969 Joint Commis sion were neve r implement e d and Adolescents Recommended more services coordination and I continuum of s ervic es and research and evaluation. Inspired the enactment ofP.L.96-398 (Saxe Cro ss and Silverman 1987:22). 1979 National Alliance for the Mentall y ill NAMI, a grassroots organization is run b y and (NAMI) Founded committed to famili es and individuals with mental illnes s. It h as two primary goals: "mor e and bette r research, and more and better services" (Flynn 1989: 135). 1979 I North Carolina, Ciass Action Class action liti gatio n o n behalf of vi olent and assaulti v e Litigation, Willie M. v Hunt children labe led SED who were warehoused in large instituti ons. North Carolina responded by beginnin g the first effort to de v elop individualized and coordinated ser vices (Bovd 1992). 1 9 79 Most in Need Program Small NIMH program which funded 12 "community demonstration projects to improve access and coo rdination of services by creating a non -overlappin g service network" (Mey e r s 198 5 : 184). Phased out in 1 983. 1 980 Annstrong vs Kline (Battle v. Class action suit filed in Pennsylvania on b ehalf of Commonwealth) (476 F. Supp 583, severel y handicapped children. The case confirmed that E.D. Pa) to be in complian ce with 94-142, an 'appropriate' education "must be tail ored to the student's individual needs" (Bazron 1989: Aooendi-..: ill. 3) 3 1

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TABLE II -I (Continued) II DATE EVENT IMPORTANCE OR IMP ACT II 1980 Adoption Assistance and Child The Act requires that "state child welfare agencies ... Welfare Act make 'reasonable effortS' to maintain children with their (P.L. 96-272) families, or if removal from home was necessar y to return the child to the farnilv" (Bovd 1992:6). 1980 Mental Health Systems Act (MHSA) Considered to be landmark legislation that expanded I I I (P.L. 96-398) state and local control of CMHC and continued federal leadership and management. Repealed in 1981 before it took effect (Cameron 1989) I 1981 Select Panel for the Promotion of The Panel foWld some improvement due to P.L. 94-142, Child Health but still found substantial problems in services to (P.L. 95-626) children with SED. Recommended the coordination of effortS of all sen ice sys tem involved with these children (Saxe C ross, and Silverman 1987) I 1981 Omnibus Budget Reconciliation Act, The Act provided block grants to the states for I 0 Part B: Alcohol, Drug Abuse, and categorical programs including mental health services. Mental Health Services Block Grant Few restrictions were placed on the nature or funding (ADM) limits for the services No funding was provided for (P.L. 97-35) funding mental health services for children (Day and Roberts 199 I: Rochefort and Logan 1989) 1982 Unclaimed Children by Jane Knitzer This report funded by the Children's Defense Fund, I I I I examined the state of the children's mental bea!th service II I I systems throughout the U.S. It became a pivotal rallying point for mental health professionals advocates and policy makers (Knitzer 1982) 1983 Education for All Handicapped This amendment to EHA "established priorities on Children Act (EHA) Reauthorized related services and a focus on parents of children with (P .L. 98-199) disabilities" (Nelso n and Pearson 199l:17). 1984 Child and Adolescent Service System Program developed by NIMH and the State Mental (CASSP) (P.L. 98-509) Health Representatives for Children and Youth (SMHRCY) to fund state effortS in the policy development and coordination of state senices from children with serious emotional problems (Duclmowski and Friedman 1990 :4). 1985 ADM Block Grants Amended, I 0% Amendment required that ten percent of state mental Set Aside for Children health funds be used to prO\ i de services to Wldersen 'ed (P.L. 99-117) populations. especially children and adolescents with I SED (Rochefort and Logan 1 989: 149). I i 198 6 Individuals with Disabilities Education Amendment to P. L. 94-142 which provided fiv e years of Act Amendment (IDEA) planning funds to develop and implement early (P.L. 99-457, Part H) inten ention sen ices for handicapped infants and toddlers (Bovd 1992) 32

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TABLE II-1 (Continued) II DATE EVENT IMPORTANCE OR IMPACT II 1986 State Comprehensive Mental Health The act "mandates that states plan and implement a Services Plan Act comprehensive system of community-based care for the (P.L. 99-660) seriously mentally ill (Nelson and Pearson 1991 :3). I 1986 Handicapped Children's Protection Act Provides that parents or guardians of child v.rith I (P.L. 99-372) handicaps, if they "prevail in any action brought llllder" P.L. 94-142, \\rill also be awarded attorney's fees I I I (Holmes 1987/88:14). I I 1986 I Invisible Children Project by the 'The Invisible Children Project was initiated by the National Mental Health Association (NMHA) in November of 1986 to publicize the plight of emotionally disturbed children nationallv in order to imorove senices to these children" (Zeigler-Dendv 1989). 1986 A System of Care for Children A monograph sponsored by CASSP and SMHR.CY that and Youth by Bet.'l A Stroul & Robert describes a model "system of care" for severely M. Friedman emotionally disturbed children and adolescents" (Stroul and Friedman 1986:iv). 1987 Children' Mental Health : Problems Background report for the U.S. Senate Appropriations and Service by the U S. Office of Committee found a continuing lack of appropriate I I Technology Assessment services for children and youth with mental health problems The report recommended a better estimate of I I the number of children needing services be made (Saxe I I Cross. and Silverman 1987). I II 1988 Mental Health Sen ices Program for An eight state community-demonstration project which Youth (l\.ffiSPY) Funded by the provided planning and implementation funds directed at Robert Wood Johnson Foundation improving outcomes and e),:panding services to children with SED (Cole and Poe 1993). 1989 Federation of Families for Children's This is a national advocacy group organized by families Mental Health Founded for the purpose of improving the system of care for all I children with SED and their families (Duchnow ski and Friedman 1990) 1989 National Alliance for the Mentally ill -A special n etwork within NAMI that focuses on families' Child and Adolescent Network needs and priorities and acts as an "advocate for (NAMI-CAN) Founded improved services and a system of care" (Flynn 1989 : 1 39). 1989 Research on Children and Adolescents Report requested by NIMH that looked at the limitations with Mental. Behavioral and to research in the children's mental health and disabilities Developmental Disorders by the service systems. A national research plan was developed Institute of Medicine that includes personnel training, fimding support, areas requiring research, and the development of a consortium to implement the plan (Institute of Medicine 1989). 33

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TABLE II-1 (Continued) II DATE EVENT IMPORTANCE OR IMPACT 1989 Invisible Children Project Published A national study that focused on out of state placements by the National Mental Health of children and youth with SED. The project also works Association on advocacy, policy and education efforts (Davis et al. 1995; Garrison 1989b). 1990 At the Schoolhouse Door by J. The study examined state school systems and mental Knitzer, Z. Steinberg, & B. Fleisch health systems' attempts at servicing children and youth with mental health problems. Promising school-based programs and problems found in the systems were described (Knitzer Steinberg and Fleisch 1990). 1990 National Plan for Research on Child A report requested by the U.S. Senate Committee on & Adolescent Mental Disorders by the Appropriations. "This plan addresses the status of National Advisory Mental Health research concerning mental disorders in young Council Americans" (National Advisory Mental Health Council 1990:iv). Recommendations were made in the area of funding of services, research areas, and career development. 1990 State Comprehensive Mental Health Amendment required that all state mental health plans Plan Act Amendment include "planning for coordinated and comprehensive (P.L.lOl-639) sy stems of care for children (Davi s et al. 1995 : 148). 1990 Individuals \vith Disabilities Education Amendment to P .L. 94-142 that strengthened the Act (IDEA) Amended concept of community based care for children and youth (P.L. 101-476) with SED, including transitional programs to support the variety of services required b y these children (Nelson and Pearson 1991 ) 1 991 Individuals with Disabilities Education This amendment was made to "facilitate the Act (IDEA) Amended development of a comprehensive system of ser vices for (P.L. 102-119) children aged birth to 5" and transition services into preschool programs (Committee on Aging and Hwnan S e rvices 1994:A-15) 1991 CASSP Grants Recei ved b y all Fifty CASSP grants enabled the states to successfully States strengthen state leadership in the development of systems of care for children and yo uth v.-ith mental health problems (Duchnowski and Friedman 1990). 1991 National Association of Public Child A task force was formed and a report generated Welfare Administrators (NAPCWA) (NAPCWA and SMHRCY 1991) that explored "a and State Mental Health collaborative agenda b etween the two organizations ... Representatives for Children and (Boyd 1992:30). Youth (S!VIHRCY) Partnership Established 3 4

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TABLE II-1 (Continued) II DATE EVENT IMPORTANCE OR IMP ACT II 1992 Alcohol, Drug Abuse, and Mental Act requires states to develop plans that provide Health Administration (ADAMHA) integrated services (mental health, educational, etc.) for Reorganization Act children v.ith SED, including the provision of care for (P.L. 102-321) multiple needs (Committee on Aging and Human Services 1994). 1992 ADAMHA Reorganization Act Established the new Substance Abuse and Mental Health (P.L. 102-321) Administration (SAMHSA) in the Department of Health I and Human Services; re-authorized the alcohol, drug abuse and mental health block grants: established the I Center for Mental Health Services (CWIS), Child, Adolescent and Family Branch which oversees the Planning and Systems Development Program (formerly CASSP) (Research and Training Center for Children's Mental Health I 994a) 1992 ADAMHA Reorganization Act, Center Center established by the US. Congress with the goal of for Mental Health Services (CMHS) developing "standardized definitions and methodologies Established for states" to determine mental illness prevalence and (P.L. 102 -321, Part B) incidence rates for children and adults (Duchnowski and Kutash 1996: 92). 1992 ADAMI-lA Reorganization Act, Provides states and communities with five-year grants Children s Mental Health Services for the development of community-based systems of Program care for children with SED and requires matching fund s (P.L. 102-321 Part E) t o sustain the programs (Miller and Yel ton 1991). 1992 Mental Health Initiative for Urban This is a fivey ear seven site neighborhood Children Funded by the Annie E. demonstration project that seeks to demonstrate new Casey Foundation ways of delivering culturall y appropriate familysensiti v e mental health services in disadvantaged ... urban communities" (Federation of Families for Children's Mental Health 1992: 3 ) I 1 992 The Planning and Systems Provided 11 l ocal level grants to California, Colorado I Development Program Provides Local Florida, Kentud.:y, Nevada, New York, Pennsylvania, Level Grants Vermont, Virginia, Washington, and Wyoming (Research and Training Center for Children's Mental Health 1994b: 11) 1993 The Planning and Systems "Twenty-eight private not-for-profit entities were Development Program Provides awarded" these statewide grants The threeyear grants State,vide Famil y Network Grants were provided for the purpose of "developing and enhancin g a statewide famil y network" that can prov ide support, education and advocacy aimed at serv ice systems that care for childr e n v.ith SED and the ir families (Research and Training Center fo r Children's Mental Health l994c: 8). 35

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TABLE II-1 (Continued) DATE EVENT IMPORTANCE OR IMPACT II 1993 Center for Mental Health Services, The Center established the final definition for 'Children SAMHSA Establishes National with Serious Emotional Disturbances as required by Definition for Children with Serious P.L. 102-321, ADAl\1HA Reorganization Act. The Emotional Disturbances definition is established for funding and service purposes (Cen te r for Mental Health Services 1993:29425). 1993 Omnibus Budget Reconciliation Act This is major new child welfare legislation that "provides (OBRA) Family Preservation and additional resources to states to assist families" and Family Support Act guidelines from the U.S. Department ofHealth and (P.L. 103-66) Human Services. There are to be multi-agency efforts, additional senices and changes in the service delivery systems to impact the well-being of children in need (Friedman 1996:245) 1994 National Institute of Mental Health Research project involving a national longitudinal (NIMH), Mental Health Service Use, sample of 7000 and four separate community studies Need, Outcomes and Cost for Child each with 3000 children and youths. There are seven and Adolescent Population Research maj o r policy questi ons, including prevalence met and Project (UNO-CAP) unme t nee
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Important Trends in the Child and Adolescent Mental Health Service Systems In 1982, a remarkable report by Jane Knitzer, titled, Unclaimed Children: The Failure of Public Responsibility to Children and Adolescents in Need of Mental Health Services was published. This report, funded by the Children's Defense Fund, became a pivotal rallying point for mental health professionals, advocates and policy makers It is considered to be the seminal study of the state of the cruldren's mental health service system in the early 1980 s (Stroul and Friedman 1986:i). There were several reasons why Knitzer's study was so important. First, the timing was right for a more coordinated effort on the part of federal and state governments to address the inadequate mental health services available to cruldren. Knitzer repeated the 1978 President's Commission's estimates "that 5 to 15 percent of all children and adolescents, or 3 million to 9 million cruldren, require some type of mental health service" (1982:3). The study also estimated that "two thirds or 3 million seriously disturbed cruldren and adolescents in this country do not get the mental health services they need" (Knitzer 1982:3). Inpatient hospitalization was still the primary mode of treatment available to cruldren and adolescents with emotional or behavioral disturbances A second reason the study was important was that it was based on a survey of mental health providers, advocates, parents, and government officials. The survey provided original and systematically collected data that rughlighted the state of the treatment systems The study provided a profile of who these children were and provided specific examples of service system problems, individual cases of under-served children, status of state programs and exemplary programs from throughout the country. 37

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Unclaimed Children was highly critical of all agencies and government institutions that dealt with children's mental health services. Knitzer balanced her criticism and recommendations across federal, state and local governments, agencies and included the advocacy community in her critique. Finally, Unclaimed Children outlined six specific areas requiring action. The areas were concerned with establishing state level units to oversee child and adolescent mental health programs providing appropriate and least restrictive placements, involving and coordinating all concerned agencies, strengthening the federal response, increasing the advocacy effort, and developing a system of care within the states. These six areas repeated many of the recommendations made by the 1969 Joint Commission report, Crisis in Child A1ental Health. Unlike the Commission report, Knitzer's very specific recommendations became a focus for federal and state governments, child advocates, and other concerned groups. Knitzer clearly states that it is the responsibility of government agencies to carry out the report's recommendations and to "reclaim' responsibility for seriously disturbed children" ( 1982 :xiii). Knitzer very clearly used the term serious emotionally disturbed to describe the children studied in Unclaimed Children. This terminology became the accepted nomenclature for children's mental health service system definitions and policy. The term serious emotionally disturbed replaced the highly stigmatizing label of mentally ill and de-emphasized the view of these children as untreatable and chronically sick. There were a nwnber of responses to Unclaimed Children and this changing view that developed into six important trends that continue to have impact today, they are: 38

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I) The development of' tht: C hildren and Adolescent Service System Pro&,rram (C/\SSP J, 2) The development of a "System of Care" model 3) The Development of demonstration and innovative programs 4) The development of the idea of family centered care 5) The development of advocacy efforts specific to children's mental health, and 6) The development of research agendas and centers specific to children' s mental health Important Trend: The l)cvelopmcnt of the Child and Adolescent Service System Program (CASSP) Another important federal response to Knitzcr's report, in 1984, was the development of the Child and Adolescent Service System Program (CASSP) (P.L. 98-509 ) by the National Institute of Mental Health (NfMH) in partnership with the State Mental H ealth Representatives for C hjJdren and Youth (SMHRCY). CASSP help e d fund stat e efTon s to focus their policies toward the coordination of "services for those children and adolescents with the most serious and long-lasting problems, and their families" (Duchnowski and Friedman 1990:4 ) CASSP addressed one ofthe primary concerns of Unclaimed that few states bad existing mental health plans, offices, standards of care and budgets specifically designated for children. This initiative was a combined state and federal effort designed to improve systems and services to children and their families and to increase attention to their needs through state act ion and advocacy efforts. An analysis conducted by the Research and Training Center for Children's Mental Health, Tampa, Florida reported that the consensus of individuals working in the children's area found that CASSP was e:'\.1remely successful in getting states to pay more attention to the mental health needs of children, in strengthening state leadership, and in creating a vision of what a system of care for children with emotional disturbances and their families should look like t Ducbnowski and Friedman 1990: 4). 39

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A follow-up analysis of CASSP and the changes made since the publication of Unclaimed Children was conducted in 1993 (Davis et al. 1995). This analysis found a mixed response by the states to the federal efforts to push them into planning and service activities for children. On the positive side, the analysis found that "every state had received at least one CASSP grant (for 3-5) as of 1992", and that they had all "developed a vision of a system of care that guided their system developmenC (Davis et al. 1995: 148) The number of states with separate mental health state-level units or offices for children and youth increased from 21 states in 1981 to 38 in 1988 / 89. Not only had administrative units increased, there were considerable increases in state funding for children s mental health services, although budgets continued to be weighted heavily in favor of residential services. In addition, numerous new state laws and court orders established and expanded mental health care systems, state-level interagency planning councils, case review broads service programs and opportunities for parental involvement. The report also found that out-of-state mental health residential placements had continued to increase since 1989, and that in-state residential placements of children and adolescents had stayed steady. Most of these placements were made by s y stems other than the mental health systems in the states, and apparently reflect deficits in the development of alternative treatment settings within states" (Davis et al. 1995: 165). Other federal responses began in 1985 with an addendum to the Alcohol, Drug Abuse, and Mental Health Block Grant (P.L. 99-117) which set aside 10 percent of the funds for children and other under-served populations This grant set the stage for the development of many of the planning and funding trends in the children s and adolescents mental health service system. Later in 1990, a specific provision was added 40

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to the Block Grant Act, which required states to include planning for children's mental health services in the general state mental health services plans (P.L. 10 1-639). Another amendment, two years later, known as the ADAMHA Reorganization Act (P.L. 102321 ), required: that the Mental Health Block Grants include a plan for children with a [sic] serious emotional disturbances which provides for a system of integrated social services, educational services, juvenile services and substance abuse services that, together with health and mental health services, will be provided in order for such children to receive care appropriate for their multiple needs ( Committee on Aging and Human Services 1994 :Attachment B, 1 ). Federal responses specially impacted the states educational systems with the continued development of the 1975 Education for All Handicapped Children Act (P.L.94142). This Act was amended in 1990 (P.L. 10 1-476) and in 1991 (P .L. 1 02-119), strengthening the concept of community care for children with serious emotional disturbances, and providing for services for preschool children, respectively. These federal actions provided funds and required planning specifically for children s mental health services, a very necessary step in moving many states toward including children in state educational and mental health plans and state-level office programs and staffs In 1992, the Alcohol, Drug Abuse and Mental Health Administration (ADAMHA) Act (P.L. 102-321) established the new Substance Abuse and Mental Health Administration (SAMHSA) in the Department of Health and Human Services. The Center for Mental Health Services (C1\1HS) became part of SAMHSA and the administrator of comprehensive community-based services block grants. Children s services became a priority for the CMHS and it became the administrative unit for a nwnber of federal children's mental health programs including oversight of the new Planning and Systems Development Program, which replaced CASSP (Research and 41

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Training Center for Children s Mental Health 1994a). CMHS has also established a final definition of "Children with a Serious Emotional Disturbance, as directed by P.L. 102321, as persons: From birth up to 18, Who currently or at any time during the past year, Have has a diagnosable mental behavior, or emotional disorder of sufficient duration to meet diagnostic criteria specified within The resulted in functional impairment whjch substantially interferes \vith or limits the child's role or functioning in family, school or commwtity activities " (Center for Mental Health Services 1993:29425). Federal legislation, in particular CASSP funding, now the Planning and Systems Development Program, has helped and supported the states in their development of mental health services systems for children and adolescents However, there is more to do before the state systems completely deal with the needs of all cruldren and adolescents with serious emotional disturbances. Important Trend: The Development of a "System of Care" Model The development of a mental health system of care for children and adolescents v.rith serious emotional disturbances was an essential step for the establishment of state systems. Some state systems of care were beginning to emerge by the time CASSP was funded, but there was a need for a well-articulated model that could be easily adapted and revised by each state The concept of a system of care model was a practical necessity if CASSP was to achieve its goals. CASSP had to provide a comprehensive multipleagency framework for community care that states could adjust to their own needs through policy and legislative action. The system of care model advocated by CASSP pro vided a concrete prototype of what programs should be provided in a community how service 42

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systems should interact, how the child and family are to be treated, how services were to be financed, and much more. In 1986 Beth A Stroul from the CASSP Technical Assistance Center, and Robert M. Friedman from the Florida Research and Training Center dev eloped the communitybased system of care model in the publication A System of Care for Seriously Emotionally Disturbed Children and Youth (1986). In their monograph Stroul and Friedman defined a system of care: A system of care is a comprehensive spectrum of mental health and other necessary services which are organized into a coordinated network to meet the multiple and changing needs of severely emotionally disturbed children and adolescents ( 1986:iv) The authors identified two core values and ten guiding principles for the ideal system of care model. The core values were: 1) a child-centered system with the needs of the child and family dictating the types and mix of services provided", and 2) "the locus of services as well as management and decision-making responsibility resting at the community level (Stroul and Friedman 1986:vii). The guiding principles of the model define services that are 1) a comprehensive array, 2) individualized 3) least restrictive and clinically appropriate, 4) include families as partners 5) are integrated, 6) include case management, 7) include early identification 8) provide smooth transitions within the system, 9) protect the child s rights and include effective advocacy efforts, and 10) are sensitive to cultural differences and special needs The Stroul and Friedman system of care model gave the state s a dynamic concept that provides an array of services that includes mental health, social, medical educational, vocational, recreational and operational support The enactment of the State Comprehensive Mental Health Services Plan Act ( 1986, P L. 99-660 ) mandated that stat e 43

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plans provide comprehensive community-based systems of care. The 1993 state analysis, mentioned above, found that "the vast majority of CASSP principles of an ideal system of care were embraced by 89-98%" of the 40 reporting states (Davis et al. 1995:156). Most states were attempting to use the model and its principles to develop systems specific to their needs. Important Trend: The Development of Demonstration and Innovative Programs By the late 1980's, the system of care model had been established nationally; however, its core concepts of individualized, community-based care were being used "more as a value and philosophical statement than actually being translated into practice" (Friedman 1992:161). Actual change in most state systems was slow. The model still proved to be a flexible concept and was molded into very diverse situations, beginning with a number of demonstration projects some of which pre-dated the Stroul and Friedman 1986 model. The better known demonstration projects include: 1) Kaleidoscope in Chicago begun in the late 1960's (Burchard and Clark 1990:50 Burchard et al. 1993:iv-v Friedman 1988 : 10); 2) North Carolina Children s Mental Health Service System developed in the early 1980' s (Behar 1985); 3) Alaska Youth Initiative Demonstration Project was developed \Vith a CASSP grant in 1984 (Burchard et al. 1993 ; Minton 1995; VanDenBerg 1989, 1993); 4) Project Wraparound, in rural Vermont, a preventative program begun in the mid to late 1980 s (Burchard and Clark 1989 1990) ; 5) Ventura County Children s Demonstration Project in California started in 1984 (Jordon and Hernandez 1990; Rosenblatt and Attkinsson 1992) ; and 6) Fort Bragg Child and Adolescent Mental Health Demonstration Project, originally funded in 1989 by the Department of the Army, Health Services Command, and the North Carolina Division of Mental Health, Developmental Disabilities and Substance Abuse Services (Davi s et al. 1993 Hellinger et al. 1991, Pries 1997) In addition to these state demonstration projects there have been a number of private foundation initiatives, they include: 44

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1) The Robert Wood Johnson Foundation's Mental Health Service Program, started in 1989 providing community grants to eight states. At a total cost of $20.4 million, these program grants were used in the development of demonstration mental health systems of care for children (Cross et al. 1992, England and Cole 1992, Smith, Attkisson and Boles 1993 ). 2) The Edna McConnell Clark Foundation provided grants for the development of family preservation services or short-term crisis interventions such as the Homebuilders programs (Knitzer and Yelton 1990). 3) The Annie E. Casey Foundation's Mental Health Initiative for Urban Children was started in 1992. The Foundation awarded one-year planning grants of $150,000 each to seven states for five year neighborhood-scale programs that were to "demonstrate new ways of delivering mental health services in disadvantaged neighborhoods in urban communities" (Federation of Families for Children's Mental Health 1992). Demonstration projects not only showed the value of a system of care model, but also demonstrated that there were numerous obstacles to fully operationalizing a functioning system of care. For instance, in response to a 1979 class action lawsuit, Willie M. et al. vs. James B. Hunt, Jr. et al., the State of North Carolina began development of the children's mental health system, primarily using local community mental health centers as the lead agencies. After four years of operation, an evaluation of the program showed that the state had been able to develop a wide continuum of services, a flexible and responsive management system, and a case management component that oversaw the implementation of each client's care plan. The North Carolina program has a "no eject/no reject" policy which "ensured that no children are excluded from the system" (Behar 1985:193). This policy was an assurance that no child, no matter how severe his/her behavior became, would be denied treatment. It proved to be an essential element of the program. Another successful demonstration program was the Ventura County Children's Demonstration Project. In 1984, "more than 11,000 seriously emotionally and behaviorally disturbed children and youth in California [were] removed annually from 45

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their families and communities" (Jordon and Hernandez 1990:26). In response to this problem the Demonstration Project was developed and from that experience came the Ventura Planning Model. A planning process and service delivery model, it addressed the shortage of services, set minimum standards for the type and number of services that should exist in a community, and used focused mental health care, or "cost-offset" strategies to reduce health care costs (Jordon and Hernandez 1990:28). This model proved to be so successful that the California Legislation provided permanent funding for the Ventura County Program and three additional counties, and provided funds to test the model in the adult mental health system. Alaska also had a high number of children with serious emotional disorders who were removed from their families and communities and often sent out of state for treatment. The Alaska Youth Initiative Demonstration Project (A YI) began in 1984 when the state received a CASSP grant. In Alaska, many of the children and adolescents in need of services came from small outlying villages or were Native Alaskans with special needs. A YI developed the "Core Services Teams (CST)" to act as interdisciplinary service teams (Burchard et al. 1993:8). These teams were to plan and carry out the individual case plans for each child. This was no small task in a geographically and culturally diverse state like Alaska that includes six distinct Eskimo and Indian cultures. Individual plans could include anything from traditional therapy and medication to hiring a special friend for a youth in an isolated village or getting a telephone for the family home Services were basically wrapped around the child and family providing them with care based on their needs. This intensive individualized wraparound approach required great flexibility in the funding streams, agencies and 46

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staffing. A 1993 assessment of A Yl found that the program "successfully demonstrated that even the most disturbed youth can be served in the community" (VanDenBerg 1993:256). Finally, an evaluation of a number of the community-based demonstration treatment programs was started in 1991, by the Research and Training Center for Children's Mental Health, FMHI, USF (Duchnowski et al. 1993; 1998). The project was titled the Alternatives to Residential Treatment Study (ARTS) and its purpose was to: Systematically describe five programs across the country that serve children with serious emotional disturbances and their fantilies. The components of this study include descriptions of the children and their families who are served, interventions employed, program costs, and outcomes for the children over time (Duchnowski 1993: 17). Site selection included criteria in which the programs espoused CASSP core values such as family and child centered care, and community based services. The five sites evaluated by ARTS were: 1) Alaska Youth Initiative (A YI), 2) Kaleidoscope in Chicago, 3) Pressley Ridge Youth Development Extension (PRYDE) in Pittsburgh, Baltimore and West Virginia, 4) Ventura System of Care in California, and 5) Vermont New Directions (Duchnowski et al. 1998:59). The sample of children was the average age of 14.2 years with a mean reported age of onset of 6.9 years", and the children s first service was received at the average age of 8. 7 years (Duchnowski et al. 1993 :22;1998:74 ) The children were diagnostically complex and were being served as serious emotionally disabled Only 36% of the children lived with their families, and most (72%) received a variety of restrictive and residential programs before starting at the community program (Duchnowski et al. 47

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1998:74 and 76). A major finding of ARTS was that the high rates of residential treatment and out of home placements were linked. The authors reported: There were indications that the problems of these children tend to get worse over time and without adequate intervent i ons, out-of-home placement becomes the only viable option in view of the duration and severity of the problem (Duchnowski et al. 1998:74). These evaluations have shown that A YI, Ventura County, North Carolina Children's Mental Health System, and the other demonstration programs have successfull y modified the system of care model to their individual state and local systems and have provided effective and quality community care. These projects have reduced out-of-state placements, developed agenc y collaboration and created innovati v e funding streams Important Trend: The Development of the Idea of Family Centered Care The core values of the Strout and Friedman system of care model are that care should be "child-centered and "community-based" (1986:vii). The model's philosoph y includes the family (biological or surrogate) in these nvo values, which means that it is the needs of the child and family which must dictate the services provided and that the services must be adapted to their needs. These values were made part of the model in reaction to the standard practices of systems caring for children w i th serious emotional disturbances in out-of-home placements. This practice includes the overuse of mental health residential services for children, which removes them not only from their community and families but also often from the state Even in the 1990 s this is still standard practice in many states. In the 1993 survey b y Davis Yelton, and Katz-Leavy (1995), all of the 22 states that responded, reported at least one out-of-state placement in a mental health facility occurred for children 18 y ears of age or y ounger mostly through their child welfare systems. Twelve of the reporting states did not have any out-of-state 48

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placements through their state children's mental health program. The total number of out-of-state placements was quite high (Mean= 214.0, 250.2 S.D.) with Alaska having only one out-of-state placement and Maryland reporting the highest number at 809, although this is not an unduplicated count (Davis, Yelton, and Katz-Leavy 1995: 11 and 28). The core system of care values are also a reaction to the general lack of services for families within the children's mental health service systems and to the time when the family was excluded in the planning and care process of their own child. Efforts to support emotional disturbed children in the context of their families are often superficial, and a strong commitment to preserve the family when possible is often lacking. Frequently, parents are not acknowledged as the primary care givers for emotionally disturbed children, and are not included as partners in planning and decision making with regard to their children (Stroul and Friedman 1986:11). The consequences of these practices for the child and family can be devastating especially for families already dealing with a child with a serious mental illness and with the stigma the illness may carry with it. The guiding principle in the system of care model that addresses this issue states: "The families and surrogate families of emotionally disturbed children should be full partners in all aspects of the planning and delivery of services" (Stroul and Friedman 1986:vii). In practice th i s principle has taken a number of forms. One example is the Alaska Youth Initiative program that sets up an interdisciplinary service team that oversees all aspects of the child's care. The biological parents, if they have legal rights to the youth, the adoptive parent or other surrogate parent s (a neighbor foster parent relative) are active members of the team (Burchard et al. 1993) In addition, services are 49

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provided to the family if needed in the care of the child, such as respite care, parenting classes, drug rehabilitation, or vocational counseling. Reform in this area has been slow according to the Health Care Reform Tracking Project (Stroul et al. 1997). The Project survey found that limited family involvement, mostly in the areas of "participation in advisory and focus group processes", occurred in 24 states (Stroul et al. 1997:394 ). However, families recognize that they want and need to participate in the care of their children. A survey of parents with children with emotional disturbances found that parents see collaboration as essential to sharing power and responsibility in relation to professional caregivers. Further, they want professionals to recognize "the valuable perspective and knowledge that families possess, seeking their input and involvement throughout the helping process, and involving them as partners in the decision-making" (DeChillo, Koren, and Schultze 1994: 574). On the positive side, new models of parents as partners in the care of their children are emerging. There are two recognized primary values that must be a part of any fully established parent-professional partnership. The first value is the recognition of the uniqueness of each family by the professionals. The family differences lie in areas such as culture, socioeconomic status, and living environment, as well as in their individual strengths, challenges, and needs" (Duchnowski et al. 1995:11 0). The second core value is the positive recognition of the family's strengths and abilities to cope on a daily basis by the professional service. There are "mechanisms, models and programs that currently exist that do foster effective family involvement in the education of their children (Duchnowski et al. 1995: 114 ). These programs and models share common characteristics such as, 1) "aggressive outreach and support to ensure family 50

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representation", 2) adequately preparing parents through training and "self-help" groups in order "to maximize their own skills as well as how to obtain what they feel they need", 3) family participation in the development of program research and evaluation, 4) concentrated efforts in urban neighborhoods, and 5) training professionals about the expanded roles for families and the new models of family partnership (Duchnowski et al. 1995: 114-116). As the new models become incorporated into the service and educational services, families have become a part of a movement that includes advocacy efforts as well as the development of family and professional coalitions in major educational and mental health service systems. As a result of these changes in the systems and the parent advocacy movement, parents are gaining a new perception on their family's and children's needs, this perception is: One in which they see their child and themselves as having many strengths but also in need of support that goes beyond the special education system. They look for a collaborative, integrated system of care that can supply that support, and one that will recognize them as allies in the treatment of their children (Duchnowski, Berg and Kutash 1995: 190). This can be a new and, at times, unwelcome concept for the professional caregivers and does not fully exist in many communities. Stroul and Friedman recognized this would be a fundamental change in the way these systems function, and if families were to become true partners in the systems, family-centered care had to be built into the essential core values and principles of the system of care model. Important Trend: The Development of Advocacy Efforts Family-centered care not only includes collaboration on a daily basis between the professionals and the individual families, it also includes families in the development of policy and programs. Advocacy in the United States has been important in the definition of issues in mental health and subsequent development of treatments, policies and 51

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educational programs since the early 1900's. Advocacy efforts give voices to consumers, families and other concerned persons that are often lacking in the formal service systems. These groups bring new and different perspectives to the debate, and can identify and fight for issues and concerns that may otherwise not be addressed. Advocacy efforts specifically in the area of children's mental health, however, did not begin until the 1950's. The first advocacy effort in the United States on behalf of people with mental illnesses began with the founding of the National Association for the Protection of the Insane and the Prevention of Insanity in 1880. It was a reform movement founded by social workers, neurologists, psychiatrists and social-minded laymen. Its purpose was to encourage better treatment and care for the mentally iU by physicians and asylums, public education on the nature of mental illness, advocacy for early treatment, advancement of an enlightened state policy in regard to the insane" and "efficient state supervision of all institutions of the insane" (Deutsch 1949 : 312). Although very vigorous in its activities several factors caused the National Association to disband in 1886. The most important factor was probably the reaction and animosity of the Association of Medical Superintendents of American Institutions (now the American Psychiatric Association) to the National Association's vigorous campaigns to expose the evils of the asylums and advocacy for better state control and oversight of asylums. The next advocacy effort in the United States the National Committee for Mental Hygiene, began i n 1909. Only slow and localized improvements in the care ofthe mentally ill had occurred since the first advocacy effort ended 23 years before. The founder of the National Committee, Clifford Beers, was a mental health consumer and 52

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author of A Mind That Found Itself, originally published in 1908. Now known as the National Mental Health Association (NMHA), it is a private voluntary organization that provides "leadership to confront the entire range of mental health issues at local, state and national levels" (Garrison 1989a: 126). Although not strictly an advocacy group for children, this group addressed a number of training needs in the children's area with the establishment in 1953 of the American Association of Psychiatric Clinics for Children This program addressed the training needs of psychiatric personnel and published a guide for teachers titled, Recognizing Emotional Problems in the Classroom (Garrison 1989a: 126). In 1962, the NMl-IA performed a needs assessment survey that emphasized the lack of services for children with mental illnesses. The survey, like earlier studies pointed out that most states housed their children with serious mental illnesses in s tate hospital adult wards, and often denied them public education. In response, the NMHA merged with the National Organization for Mentally Ill Children (NOMIC) in February 1962, and "childhood mental illness was added as one of the as s ociation' s four major program emphases" (Garrison 1989a:127) They adopted four basic principles that were forebears to the CASSP values and principles. The NMHA children's principles included provid ing a range of services, community care family contact and therapeutic involvement and public education. One of the most important activities for NMHA on behalf of children, was the "Invisible Children's Project" in 1986-88. The purpose of the Project was "to publicize the plight of emotionally disturbed children nationally in order to improve services to these children ( Z eigler-Dendy 1989 : 360). Part of the Project was a survey that found that all 50 states had children and adole s cent s in state mental health 53

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hospitals and that "there were 22,472 children in state hospitals", many in out-of-state placements (Garrison 1989b:368 Zeigler-Dendy 1989:360). From this survey NMHA developed 14 recommendations for their child advocates, including establishing a children's bill of rights, creating community-based services, completely implementing P.L. 94-142, prohibiting children in adult wards, mandating interagency planning and permitting flexible state funding. NMHA advocates were involved in and strongly supported CASSP, its values, and programs. Another major advocacy organization is the National Alliance for the Mentally Ill (NAMI), founded in 1979. It is a grassroots consumer and family oriented movement dedicated to supporting families with members with mental illnesses NAMI' s purpose is "to eradicate mental illness and improve the quality of life of those affected by these diseases (Flynn 1989: 135) NAMI has four major activities : 1) emotional support for the families and individuals with mental illness, 2) education on treatments, psychiatric disorders and stigma 3) advocac y fo r specifically identified programs and services and 4) research into emotional disturbances and the brain, including establishing and funding "the first major private research foundation on mental illness (National Alliance for Research on Schizophrenia and Depression-NARSAD) (Flynn 1989 : 138). In 1989, NAMI established a special network to a s sist families whose children and adolescents suffer from mental illness or serious emotional problems (Flynn 1989: 139) The goals of the NAMI Child and Adolescent Network (NAMI-CAN) are much the same as its parent organization with an emphasis on advocating for improvements in the children's mental health services systems, treatments and research. 54

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A third major advocacy group in the area of children's mental health is the Federation of Families for Children's Mental Health, founded in 1989. The Federation has the distinction of being established by parents for the express purpose of advocating for their children. It has been active in advocating for federal and state legislative changes including supporting services under the Education of Handicapped Children Act, advocating for children's funding by the National Institute of Mental Health and other federal organizations, and supporting CASSP. The development of these three major advocacy organizations on behalf of children s mental health has been a major trend over the last twenty years. Their members' efforts supported and helped define the development of CASSP and other federal and state legislation, increased support for research, and certainly supported many individual families. Of equal importance, these organizations gave an equal voice to consumers and parents with children suffering from mental illnesses that otherwise would not be available. Jane Knitzer summarized the meaning of advocacy groups for parents when she wrote in the inaugural issue of the Federation of Families for Children's Mental Health newsletter, "Claiming Children": The formation of the federation marks an important turning point in mobilizing the energies and talents of families, as well as a "home" for those of us who, as professionals, want to lend our voice to the effort. . Strong parental voices, so long lacking on behalf of these children, can make a vital difference in outcomes I know that the federation will provide strong leadership in this effort .. ( 1990: 1 ). Important Trend: The Development of Research Agendas and Centers Research into questions such as treatment effectiveness, service system integration, characteristics of the population of children and youth with mental illnesses and funding options were not new when CASSP was established in 1984. However, up 55

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to that time there had been little coordinated national effort to answer these and other essential questions about children's mental illnesses and the systems that provided their care. The 1987 the Office of Technology Assessment Report, Children's Mental Health: Problems and Services (Saxe, Cross and Silverman 1987), reiterated earlier reports (White House Conference on Children, 1909; Joint Commission of the Mental Health of Children, 1969; President's Commission on Mental Health, Task Panel on Infants, Children and Adolescents, 1978), and called for a continuum of care and increased funding in the children's mental health programs. This Report went a step further and recommended that research must be done to determine "a more informed estimate of the number of children who require mental health services, and a description of the availability and use of children's mental health services" (Saxe, Cross and Silverman 1987 : 1 0). Without basic r esearch it was not possible to d e termine such questions a s the effe ctivenes s of treatments. For instance, little research has been conducted on the effectiveness of psychiatric ho s pitalization although it was most often the treatmem of choice for children with serious emotional disturbances. Saxe Cross and Silverman wrote that research on children's mental health services wa s in a nascent state" and "even more poorly funded than parallel research on adults" (1988:803). A second report requested by the National Institute on Mental Health (NIMH) and produced by the Institute of Medicine (IOM) in 1989 found that although re search in children s mental health was a high priority for N IMH, it had not fulfilled its own priorities in this area The IOM recommended a national research plan that focused on three interrelated is s ues: 5 6

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developing viable careers in child mental health research; encouraging and supporting programmatic research at the frontier of scientific inquiry; and enhancing NIMH's ability to provide sustained leadership in this area (Institute of Medicine 1989:5). The IOM report when listing the basic research disciplines that should be part of the research plan, such as medicine, psychology and biology, also included sociology and cultural anthropology. These two social services are seen as being able to offer insight into family and social organizations, family structure, care of children, and social structures that impede or facilitate the development of the systems of care. As a response to the IOM report, the U.S. Senate Committee on Appropriations asked that the NIMH develop a detailed plan for expanding systems research in children's mental health. In 1990, the National Plan for Research on Child and Adolescent Mental Disorders, was published by the National Advisory Mental Health Council. The national plan established three immediate goals to be focu s ed on over the next five years. These goals were: 1) develop and sustain a critical mass of basic and clinically oriented researchers focused on mental disorders that afflict children and adolescent s, 2) stimulate a wide range of basic and clinical research at the frontiers of scientific inquiry and 3) form an institute-wide consortium of NIMH program staff concerns with child and adolescent mental health research to implement the national plan (Members of the Committee for the Study of Research on Child and Adolescent Mental Disorders 199 5 : 713). In a 1995 review of the National Plan, it was reported that the research funding from NIMH for the children s area had increased since FY 1987levels from '" ... 103% to 120% overall. The greatest gain has been a nearly sevenfold increase in services research (Members of the Committee for the Study of Research on Child and Adolescent Mental Disorders 1995:716). Funding for basic clinical research, training, and career development was also increased however not to the full amount asked by the plan. 57

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NIMH also implemented the Services Use, Need, Outcomes, and Cost for Child and Adolescent Populations (UNO-CAP) study in 1994. The goal ofthis study was a "systematic study of children's mental health needs and services based on a representative national sample of children as well as a more in-depth examination of service needs and utilization in four regions across the country" (Members of the Committee for the Study of Research on Child and Adolescent Mental Disorders 1995:720). Finally, the report found that NIMH had not reached its goals in dissemination of information and advocacy. Overall, however, the National Plan did have an impact on the increase of research funding and there were significant gains in the area of service and clinical research. Research was also a mandate of the CASSP legislation in 1984. CASSP funding was provided in 1984 to establish two research and training centers. These centers were the Portland Research and Training Center for Improved Services to Severely Emotionally Handicapped Children and Their Families, (Portland, Oregon) and the Florida Research and Training Center for Children's Mental Health (Tampa, Florida). CASSP also funded the CASSP Technical Assistance Center at the Georgetown University Child Development Center to provide technical assistance to the states with CASSP grants. The Portland Center, later renamed the Research and Training Center on Family Support and Children's Mental Health, works on family issues, such as improving services for families, family participation, family advocacy efforts, and family relationships with care organizations. The Florida Center performs national research and provides training and dissemination on such topics as service system reform, characteristics of the population of children and adolescents with serious emotional 58

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disturbances, multi-agency service system coordination, and health care reforms. Both centers hold annual conferences. The CASSP Technical Assistance Center, now named the National Technical Assistance Center for Children's Mental Health, provides workshops and technical assistance to it's fellow research and training centers. With the reorganization of SAMHSA and the Center for Mental Health Services (CMHS), its Planning and Systems Development Program, the research and training centers, and the Technical Assistance Center have continued to receive federal funding to the present. Funding from a variety of federal agencies (such as the CMHS, National Institute of Mental Health, National Institute on Disability and Rehabilitation in the U.S. Department of Education, and National Center for Child Abuse and Neglect in the Administration for Children, Youth and Families) continue to support children's mental health research and services up to the present day. Other federally funded programs include the National Resource Network for Child and Family Mental Health Services of the Washington Business Group on Health, Washington, D.C.; the Technical Assistance Center on Evaluating Children's Mental Health Services at the Judge Baker Technical Assistance Center, Boston, MA; the John Hopkins Center, Baltimore, and the Children's Hospital Research Center, San Diego, CA. Researchers from the Florida Research and Training Center, after reviewing the changes in research since the early 1980's, wrote that ... the role of research in improving the system of care is to create and transform knowledge into action by systematically describing the children and families and the services they receive, testing a complex array of factors influencing services for children and their families, and ultimately prescribing within the context of a system specific services that are effective under certain conditions for specific children and their families (Kutash, Duchnowski and Sondheimer 19 5 ). 59

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Research in children's mental health has increased in importance over the last twenty years. There is a national plan, a growing nwnber of research and technical assistance centers, and funding has steadily increased. Research into service systems, famiJy participation, and clinical issues has been routinely conducted by the Florida and Portland Research and Training Centers since 1984 and has expanded into many other centers. Clinical research is also expanding and there is a better understanding of the methodological difficulties in this type of research (Durlak and Wells 1997; Rivera and Kutash 1994 ). However, the state-of-the-art in research has not yet reached the ideal described above. Continued research in systems and clinical care is required, as is the dissemination of the new knowledge to the state and local agencies and systems that deal with the children and their families. Over the last 20 ye ar s there has been great progress in the development of the child and adolescent mental health services system. A shift in paradigm has occurred in the area, including the way families are viewed and children are cared for in the mental health service system. The system of care model has provided a structure for local and state systems that includes a continuum of care advocacy, an emphasis on community care, family-centered care, culturally competent services, individualized planning a growing advocacy movement and a national research agenda. However, the improvements in care and the conceptualization of the systems model have not been evenJy applied throughout the country (Stroul et al.l997). Although the majority of s tates have been involved in reform of the children's mental health systems, there are continuing gaps. The survey by Stroul and colleagues found "that the majority of reforms do not yet recognize that children ma y require a different service array, an 60

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expanded benefit package, or special requirements or service delivery such as interagency service planning, family involvement, or organized systems of care ( 1997:396). Few states have yet to set up special management mechanisms for children and adolescents with serious emotional disturbances, provide for full participation of family and advocacy groups, or develop mental health parity policies. Further challenges face the mental health systems that care for children as the social-cultural context continues to change in the systems themselves and in the larger society. Social changes include a rising divorce rate and more single-parent households, continuing high poverty rates and low wage jobs even in our current expanding economy. Extended family support is not available for many of these families, and family stress and violence toward children are rising. As the families change in structure and nature, there are fewer parents or other family members to deal with troubled children. All of this contributes to a rising prevalence rate for child and adolescent mental illness and earlier on-set of illnesses, such as major depressive disorders (l\Imie E. Casey Foundation 1998; Friedman 1992). There are also major changes in the health care systems, including the development of managed mental health care within the states, use of capitation and a continued lack of parity for mental health coverage by private and public insurance. Few states "have any real track record in implementing or operating managed care systems" for children's mental health (Stroul et al. 1997:394 ). Most states are still developing their state-run managed mental health care systems. There is the added problem that most private and public health insurance design is generally based on an acute care model and confined to traditional medical services (Levin, Hanson and Coe 1999:9). In addition 61

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insurance parity for mental health care is still limited in both private and public coverage Without parity coverage for long-tenn care, chronic mental health care for children will continue to primarily fall to s tate and federal programs. These trends may mean even more unmet service needs for children in need of long-tenn community mental health care, possibly because of private and public insurance payments. All of these trends mean that states must again determine which services and treatments to allow and they must base their capitation rates on poorly understood utilization rates and risks for services that may not be the most appropriate choices. States and the federal government face a major challenge in continuing to develop flexible financing for children's services. All these factors will continue to change and the children's mental health systems, researchers, families, services providers, and advocates must continue to respond to these s ocial cultural and financial pressures if the advances seen over the la s t 20 years are to last. Knitzer challenges those who work with the children's mental health systems to be vigilant. She '"''fote: Efforts to reform children's mental health ha ve be en broad but they have not bee n deep. For too man y children and families the ne w paradigm does not translate into real services or a different kind of help (Knitzer 1993 : 13). State of Florida and Hillsborough County Service Systems The State of Fl orida de ve loped a system of care for children with serious emotional disturbances in the 1940' s and ba sed it within th e educational system. Although Florida passed legi sla tion in 1941 that provided education to physic a ll y handicapped students, it was not until 1 94 7 that all exceptional s tudents including stu dents with emotional disturbances were provided a gene ral public education (Table II 3). Throughout the 1950's and 60's, state legislation continued to de ve lop special 62

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education programs available to exceptional students. As shown in Table II-2, the number of exceptional children rose steadily but slowly in the 1950's (4.3% of the total school K to 12th student population) to the 1970's (6.9%). Students with emotionally disturbances made up .5% or less of the students in public schools up through the early 1970's. Educational programs for all exceptional students only became mandatory in 1973. The percentage of exceptional students more than doubled within the next ten years up 14.7% or 218,568 students statewide. Enrollment of students with emotional disturbances also doubled during this period to 1% or 15,262 students statewide By 1974 the Department of Education, as required by law, contracted with "18 designated school districts creating a regional diagnostic and resource system covering the entire state" (Bureau of Education for Exceptional Students 1976: 10). This system was the Florida Regional Diagnostic and Resource System for Exceptional Students (FDLRS). FDLRS played a coordinating function for the diagnosis, evaluation, instruction, and services provided to all exceptional students in the local school districts. FDLRS was expanded in function and area covered during the next two years. In 1975, the Florida Department ofHealth and Rehabilitation Services (HRS) directed a Task Force to study Florida's children and adolescents with emotional disturbances and identify their needs and problems. The Task Force identified a number of problems, including a system of services that was not sufficiently comprehensive, inadequate funding, and a system in which "services were not serving to strengthen family life" (Friedman 1983:1 ). The Task Force recommended a statewide five-year effort funded at 30 million dollars. Although this recommendation was not fully realized 63

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TABLE II-2 Kindergarten through 12th Grade, Exceptional Students (ES), and Emotionally Handicapped (EH) School Enrollment Increases for Florida and Hillsborough County 1952-53 to 1992-93 School Years 1952-53 1962-63 1972-73 1982-83 1992-93 STATE OF FLORIDA K-12 Student 598,708 1,194,686 I ,648,066 1,482,270 1,981,600 Enrollment ES Enrollment 26 ,0 97 71, 451 114,006 218 568 311,415 EH Enrollment 1,794 6,970 3 683 15,262 21,802 Total State Population 3,117,800 5,392,000 7,441,545 10,430,200 13,424,400 HILLSBOROUGH COUNTY K-12 Student 50,871 92,781 117,432 110,511 135,093 Enrollment ES Enrollment 863
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the state did continue to improve services to children and adolescents with emotional disturbances. Services were scarce in the state and even "as late as the mid-1970's there were no crisis counseling programs" ... "only two therapeutic foster home programs" and a few mental health-oriented group homes, day treatment programs and preventative efforts (Friedman 1983:8). By 1979, funding for the Children, Youth and Families Program Office (CYF) ofHRS was $3 8 million. In 1979, the State of Florida HRS and Department of Education developed a state plan (F.L. 230.23) for special education to comply with Federal Law 94-142, Education for All Handicapped Children Act. Also important during this time was the development of a "Continuum of Care" model by the Mental Health Program Office in 1980. This model was a forerunner of the system of care model later developed by Stroul and Friedman. The Continuum of Care model suggested a variety of services that were needed in communities and provided an easily understandable flexible guide for local communities in the development of their systems. Florida was one of the states surveyed in Unclaimed Children (Knitzer 1982). At that time Florida did have a statutorily mandated child and adolescent mental health unit, a budget, and standards specifically for child/adolescent mental health services. However, it was still in the process of developing a statewide mental health system for children and adolescents. Florida continued its efforts to develop its systems of care during the 1980's, including the experimental project "Fostering Individualized Assistance Program (FlAP), a community-based project for children in foster care (Boyd 1992:58). HRS also established two state-wide gate-keeping systems for the children's mental health system, I) the Family Services Planning Teams (FSPT) which were the referral point for children 65

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entering the system's community-based programs, and 2) Case Review Committees (CRC) that were the residential services referral point. The next development of the children's mental health system in Florida was the establishment of the Network for Severely Emotionally Disturbed Children (SED NET) in 1981 by the Florida Legislature (F.S. 230.2317). It was piloted in two local communities. SEDNET's goals were "to work toward providing a complete array of education, mental health treatment and residential services; to improve existing services; to establish mechanisms to ensure continuous multi-agency planning ; implementation and evaluation of services; and to share relevant information" (Panacek-Howell, Lazear and Struchen 1991 :5). Florida received a statewide CASSP grant in 1989 and joined those funds with SED NET to expand its efforts. Florida received a number of CASSP grants over the next few years and the City of Miami received an Annie E. Cassey Foundation Mental Health Initiative for Urban Children Grant in 1992. Florida also had to deal with a class action suit directed at its services provided to children. Originally filed in 1990, M. E. vs. Chiles included seven children from Miami. They filed "A suit s eeking declarative and injunctive relief allegin g that the state failed to provide treatment for children with developmental and psychological problem s (Committee on Aging and Human Services 1994 : A-11) A stay of litigation was agreed to when the State agreed to conduct a study of its existing mental health service systems and expenditures and to develop a strate gi c plan The result of the study was the policy plan "Building Futures for Florida's Children", which included public funding for a fully s upported system of care for children and their families. The Florida Legislature failed to fully fund the plan and the stay oflitigation was dissolved in 1994. 6 6

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Funding in FY 1994-95 for Florida children's mental health programs were approximately $75.5 million (Committee on Aging and Human Services 1994 : Attachment F). Several years later in 1998, F.S. 394, Part Ill was revised andretitled to become the "Comprehensive Child and Adolescent Mental Health Services Act". This legislation adopts a full system of care model for the Florida child and adolescent mental health services systems. This is a major step forward for Florida in developing its systems and committing to children s mental health the next step is to fully fund all the required services. Hillsborough County Data collection for this dissertation took place in Hillsborough County on the west-central coast ofFlorida in 1992. Hillsborough County is a large county with a wide range of soc ioeconomic areas ranging from rural farm land, small towns such as Brandon and Plant City, suburban areas s uch as C arrollwood and New Tampa, and the urban area s of metropolitan T ampa. "Between 1980 and 1990 the county s population increased b y 29 percent due primary to migration, prompted b y the availability of new jobs and housin g i n the county during the 1980 s ( Children s Board of Hill s borough County 19 93 :9) A total of 14. 6 % (N = l6,08 9 ) of all familie s with children under 18 lived in poverty in the 1990 s in Hill s borough (Children's Board of Hillsborough County 1993 : 90). And in the s ame period the county's social/ethnic make-up was 82.8 % whites 13.2% African-Americans and 12. 8% Hispanic origin (Children s Board of Hillsborough County 1993:21). In 1992-93 the county had a population of 854 ,000 and a total kindergarten through 12th grade enrollment of 135,093 student s (see Table II-2). 6 7

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Hillsborough County residents had a median household income of$28,477 annually (Children's Board of Hillsborough County 1993:53). Hillsborough County sponsored a comprehensive needs assessment in 1990 to identify critical areas of concern in the human services provided by th e County and develop a community plan of action. One of the areas examined was mental health services. The assessment found serious gaps in a number of mental health programs for children, including inadequate outpatient counseling services, long waiting lists for shortterm inpatient treatment and a lack of day-treatment services for children with emotional disturbances (Hillsborough County 1990). Many of the mental health services provided to children and adolescents in Hillsborough County were provided through the Hillsborough County School System. In 1992-93 1. 9% (N = 2,591) of the stude nt emollments were for stude nts w ith emotional disturbance s (Shermeyen 1993 ). Programs for these students included everything from resource rooms in elementary and secondary schools to stand-alone special educational facilities. Other services were provided by a variety of organizations, including nvo community mental health centers: Mental Health Care, Inc's Children s Community Se rvices Division and Northside Mental Health Center; Hillsborough Countv's Child J Protection Team; Children's Crisis Services; Family Services Planning Team (FSPT); and SED Outreach Treatm e nt and Consultation Service Children's Community Services Division. 68

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TABLE II-3 Children's Mental Health Service Systems: Florida History, Policy, and Research II DATE I EVENT IMPORTANCE OR IMP ACT II 1941 School Law Passed: Provided First law in Florida that provided public education for a education for Physically group of exceptional students (Bureau of Education for I Handicapped Children. Exceptional Children 1976). 1945 School Law Passed: Provided Broadened the 1 941 school law to include mentally retarded for Education for Mentally children in the special education program (Bureau of Retarded Children. Education for Exceptional Children 1976) 1947 I Florida School Code Amended The Code covered general education, broadened provisions I and ftmding provided for the for all exceptional students, and provided State ftmds for I Minimum Foundation Program "special educational units" (Bureau of Education for (F.S., 23726, 112). Exceptional Children 1976:2). 1948 State Department of Education The Plan defined "exceptional child", and under the direction I Develops a Plan for the of the State Department of Education gave the responsibility Education of Exceptional of providing educational services to the courrties' boards of Children. education (Department of Education 1948: I). 1959 Florida Legislature froze all The Legislature's actions slowed the development of special I exceptional student program education for the next nine years (Bureau of Education for i grov.rth for a 2 year period. Exceptional Children 1976) I 1967 State Advisory Committ e e for The Committee was appointed by the Commissioner of Exceptional Child Education Education to make "specific recommendations concerning I Established procedures and policies for the operation of the total Exceptional Child Program ... (Division of Elementary and i I Secondary Education 1971 :3). I I 1968 Florida State Constitution The new constitution consolidated government agencies and I Rewritten attempted "to coordinate service delivery through service I l I goals". HRS was established (Boyd 1992 : 56) I I II 1968 Legislation Passed Requiring Each district school board was required "to provide Appropriate Programs for appropriate programs for special instruction by 1973-74" and Special Students. funding was provided to expand the exceptional programs (Bureau of Education for Exceptional Children 1976:2). 1969 Florida Legislature Established The Department was responsibl e for K through 12th grades, the Division of Public Schools vocational education adult education, and special classes (Division ofPublic Schools l983a). I 1971 Florida Mental Health Act j The Act established the State's responsibilities to the I (F.S. 394) I mentally ill, patient rights, professional r esponsibilities and r e gulation offacil i ties (Angrosino and Scoggin 1987). I 1971 Florida Accountability in The Program required public school educators to Education Program Established demonstrate the effectiveness of their methods for attaining I standardized academic goals (White l 981 ) 69

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TABLE II-3 (Continued) EVENT IMPORTA."'iCE OR IMPACT 1973 Florida Education Finance The Program provided for flexible district-level planning for Program (FEFP) Started each district. The new funding formula used FfE (full-time equivalent student) units, including the ability to count each exceptional student as more than I ITE (White 1981 ). 1973 Programs for Exceptional Mandatory programs for exceptional students legislated for Students Became Mandatory the first time in Florida (Holmes 1987/ 88) I 1974 Florida Diagnostic and Learning FDLRS is located in each district in Florida and primarily Resources System (FDLRS) provides evaluation and diagnosis services for children with i II started in the Department of exceptionalities (Bureau of Education for Exceptional Special Instructional Services Children 1976). (F. S 229.832) 1974 School Health Services Act The Act provided students with health services through the Passed (F. S. 230.2313) school system. Students with handicaps receive a variety of medical, dietary and therapy services (Holmes 1987/ 88). 1974 and Legislature Amended the The Florida Legislature added more exceptionalities to the 1975 Definition of "Exceptional definition, and by 1975 had funded 18 FDLRS Centers Students" and Expanded (Bureau of Education for Exceptional Children 1976). FDLRS I 1975 The Department of Health & HRS was "reorganized and decentralized" into divisional I i Rehabilitative Services {HRS) program offices and ll service districts (Boyd 1992:56) i I Reor ganized (F.S. 75-48) i I 1975 Department of Health and The Task Force studied "the needs and problems of I I Rehabilitative Services (HRS) emotionally disturbed children in Florida". It concluded that TaskForce (F.S. 41, 415.501) "the system of services" is not sufficiently comprehensive" i and that funding was inadequate (Friedman 1983 : 1 ). I I I 1978 Florida Agrees to Abide by HRS and school personnel developed a plan to bring the I Federal Law P.L. 94-142, State's "special education and relaled services in compliance Education for All Handicapped with the All Handicapped Children Act" (Department of I Children Act (F. S 230.23) Education 1980 : 180). I 1980 Mental Health Program Office Mental Health Program Office developed the Continuum of I I I publishes the Continuum of I Care Model with the purpose of providing a model of the Care Model I complete continuum of services that should be provided in I I all mid-size and larger communities m Florida The model was used for planning, evaluation and policy development (Friedman 1983). 1980 New HRS Office of Children, In October 1980 the new Office of Children, Youth and Youth and Families Established Families was formed replacing and coordinating existing program offices (Department of Education 1980) 1981 Multiagency Services Network The Florida Legislation funded SED?\TET. "a network of for Severely Emotionally interagency. multidisciplinary organizations" with the goal of Disturbed Students (SEDNET) advocating for programs for children SED in Florida Established (F.S 230.2317) (Boyd 1992:38). 70

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TABLE II-3 (Continued) II DATE I EVEJ\TT I IMPORTANCE OR IMP ACT II 1986 Independent Taxing Authorities This legislation "enabled coliDties to create independent for Children's Services (F. S. taxing authorities for the sole purpose of providing services 125 901) to children and families" (Boyd 1992:3 8). 1986 Children s Residential & Day Part III, which was part of the Florida Mental Health Act, Treatment Centers Statute was discontinued. It originally regulated the admissions to I Discontinued (F.S. 394, Part III) state hospitals of children and youth (Committee on Aging I and Human Services 1994:A-5). I 1988 Fostering Individualized Research project at FMHI, Department of Child and Family Assistance Program (FlAP) Studies, in conjunction with the HRS Office of Children's (F.S. 409.802) Mental Health. This project provided community-based, wrap-around services for children with SED, and included flexible funding (Boyd 1992). 1988 HRS-CYF (Children. Youth HRS-CYF is "charged with statewide responsibility for the and Families Program) provision of virtually all child welfare programs, except transferred to HRS-ADM mental health and children s medical services" (Panacek(Alcohol, Drug Abuse Mental Howell, Lazear and Struchen 1991:3). I Health Program) i i i Quality Development Team A collaborative team of State agencies with the goal of I I I Established I continually evaluating the effectiveness of SED NET projects (Panacek-Howell, Lazear and Struchen 1991 ). I 1989 Child Welfare Study Chaired b y Florida Supreme Court Justice Rosemary Commission (F.S. 39.052, Barkett. The Commission studied problems such as poverty, 402.40) and child abuse that impact Florida's children, and recommended an integrated system of care (Boyd 1992). 1989 Florida Receives a CASSP The CASSP grant was combined with ongoing efforts of Grant SED NET in the goals of planning for and strengthening services provides to children and their families (PanacekHowell, Lazear and Struchen 1991 ) 1990 Full Services Schools The program brought "health, education and social services Established (F.S. Chapter personnel and programs together at or near 134 school sites 402.3026, 402.321) to integrate the services families use which help them I support their children s performance in school" (Hodgkinson 1993:14) 1990 M E. v. Chiles The Plaintiffs in this case were seeking the elimination of waiting lists for residential care, the receipt of all needed services, and diagnosis and treatment services for all Medicaid eligible children (Committee on Aging and Human Services 1994). 1991 Blueprint2000: Education Florida' s response to the national educational strategy titled, I Accountability Bill Passed (F. S "America 2000", was the establishment of the Florida 229.591) Commission on Education Reform and AccoliDtability. The I I Commission's goal was to develop an educational reform i I plan called "Blueprint 2000" (Bush 1991; Florida i Commission on .Education Reform & AccoliDtability 1993 ) 71

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TABLE II -3 (Continued) II DATE I EVENT I IMPORTA.NCEORIMPACT II 1992 M.E. v. Chiles, Stay of The plaintiffs &HRS "negotiated a stay of litigation which Litigation Filed mandated that the Dept. develop an improved system of care for those children in state custody" and that the system be adequately funded (Committee on Aging & Human Services 11992 1994:A-ll). Miami Receives an Annie E This is a 5 year grant that is to be used to develop an Casey, Mental Health Initiative innovative demonstration project that provides mental health for Urban Children Gt-ant services to children in urban disadvantaged communities (Federation of Families for Children's Mental Health 1992) 1992 Florida Receives a Local Level Florida receives one the local CASSP grants. (Research and CASSPGrant Training Center for Children's Mental Health 1994b : 11) 1993 Florida Receives a Three Year The United Families for Children in Florida used the grant to CASSP Statewide Family build its organization, develop support groups, and provide Network Grant technical assistance to SEDNET (Research and Training Center for Children's Mental Health 1994c:8 ). 1993 Building Futures for Florida's This is a public policy plan for Florida with a priority for the Children Published expenditure of public ftmds for services supporting children and families (Committee on Aging and Human Services I 1994 :A-ll ). 11994 I Cazzola v. HRS I This case action lawsuit challenges the proVISion of services, I I including mental health care, provided to children in Florida's taster care program (Committee on Aging and Human Services 1994). 1994 ME. v. Chiles. Motion to ''The plaintiffs filed a motion to dissolve a stay of litigation" Dissolve a Stay of Litigation and charged that the Legislation has failed to provide adequate funds to provide for Florida's Children (Committee on Aging and Human Services 1994 :A-ll ) 1995-Florida State Plan for FY 1995 Major revision to Florida law that required the development 1997 1996 and 1997, Under Part B of of a plan that assures public education for children with the Individuals with Disabilities disabilities, and assures federal funds for special education Education Act programs (Bureau of Education for Exceptional Students 1994). 1998 Comprehensive Child and Florida law established the principles of publicly funded I Adolescent Mental Health child and adolescent mental health treatment and support Services Act (F.S. 394, Part ill) system, specified services that are to be provided, created the Child and Adolescent Interagency System of Care Demonstration Models to operate for 3 years, and directed the Louis de la Parte Florida Mental Health Institute to I evaluate the demonstration model. (F.S. 394, Part Ill). 72

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TABLE II-3 (Continued) II DATE I EVENT I IMPORTANCE OR IMPACT II 11999 The Florida Senate, Committee This report was a review of Florida s "Community Alcohol, I on Children and Families Drug Abuse, and Mental Health Services Act" (F.S. I Report, Defining Publicly I 394. 75). This Act had not been revised since 1984. The Funded Mental Health and I report's purpose was to review mental health services in the I I Substance Abuse Services and I State, and "to reflect new and mor e reliable diagnostic Priority Population Groups techniques "and treatment interventions both in inpatient and community settings" (Committee on Children and F arnilies !999:!). C!"tildren' s mental health in Florida is an important part of this review. i 2000 The Florida Commission on The Florida Commission was created by the Florida Senate, I Mental Health and Substance in response to the Committee on Children and Families Abuse Report, to perform a comprehensive review of the existing public mental health and substance abuse s ervice system in 1 the State. The Commission is charged with talcing public I testimony and providing recommendations to change and improve the law and service systems to the Governor and the r L egis lature in 2001 (Loui s de I a Parte Florida Mental Health Institute 2 000). 73

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ill. ANTHROPOLOGY AND THE STUDY OF CHILDREN AND MENTAL HEALTH That mental illness is a social and cultural phenomenon, as well as a psychological and biological one, has long been accepted. Therefore, to argue that the recognition of mental illness is a social matter is hardly original (Edgerton 1969:70). Anthropologists and sociologists have performed mental health service system research at least since the early 1900's and generally are concerned with placing the system or service within its social context. Research into the rearing, learning, exploitation, play and socialization of children has also been an active component of anthropological research especially in the culture and personality school (Bock 1988). However, it seems that children's mental health service systems have received scant attention from these disciplines, at least until very recently. This chapter examines anthropologicaVsociological research in the area of children's mental health service systems, and anthropological research in the area of socialization and what it has to say about children who do not fit into mainstream cultural systems such as public schools. The chapter ends with a brief discussion of the theoretical orientation used as a basis for the dissertation. 74

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Sociocultural Research in Children's Mental Health Service Systems For some of the earliest work in mental health service systems it is necessary to turn to anthropologists and sociologists who have worked with adult systems to understand the sociocultural approach to studying and interpreting service systems. Two early examples are The Psychiatric Hospital as a Small Society (1958) by anthropologist William Caudill and Asylums: Essays on the Social Situation of Mental Patients and Other Inmates (1961) by sociologist Erving Goffman. Although their research purposes were different, both authors approached the study of the mental health system or organization by examining all the participants' perspectives and placing the ongoing relationships within the context of the psychiatric institution and system. Both Caudill and Goffman studied the adult mental health service system as a sociocultural system that impacted clients, psychiatrists, nurses, and other participants as social beings. Leona Bachrach, a sociologist took a similar sociocultural approach in her examination of the impact of deinstitutionalization on adult mental health patients. She looked at the mental health service system and institutionalization in the context of the community providing the service. When she discussed "continuity of care" for the deinstitutionalized patient, it was always \vi thin the context of the system as a whole and the community (Bachrach 1987:63-73) The "continuity of care" components Bachrach discussed for the adult system foreshadows the work done by Stroul and Friedman ( 1986), on a "system of care" for children's mental health service systems. Children's systems have the added characteristic of trying to keep the child \vith the family, which may not always be true in the adult system, but the principles and components are similar between the authors' work. The continuum of care model is seen as the best approach to 75

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providing a wide range of services within the local community. Potentially the least restrictive, most appropriate commuruty services are believed to be the most beneficial to the client and family, and ultimately to the whole community. However, there is surprisingly little empirical research to support this belief(Rivera and Kutash 1994). Robert Edgerton, an anthropologist, took a socio-ecological cross-cultural approach to the study of the system of care for adults with mental retardation. He found that "mental retardation is everywhere taken to be a social and cultural phenomenon" and that "knowledge of the social and cultural system in which it occurs" is essential (Edgerton 1970:524). The various environments in which the person with mental retardation lives will more or less create barriers to social competence and adjustment in the community. In addition, change occurs over time in the person's social competence and identification as a mentally retarded person, having a great impact on the person's quality of life (Edgerton and Bercovici 1976). According to Edgerton, social competence is a combination of the individual's characteristics and the environments in which the person lives ( 1976; 1983 ). The problem in understanding the social and cultural phenomenon of mental retardation has been that the environmental factors in this equation have seldom been studied. Edgerton explains that ... ,judgments about success and failure are relative to the microenvironments in which retarded persons live: group homes, sheltered workshops, neighborhood markets buses public parks, and streets. Not only do these environments require different competencies, it is often true that success in one environment (e.g a group home that requires dependency) may increase the probability of failure in another environment (e.g., a job that requires independence) (1983:139). Sue Estroff an anthropologist, studied community dwelling adults receiving services from a community mental health program in Madison, Wisconsin in the mid1970's. Her research examined "the cultural and experiential impact of 76

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deinstitutionalization on "the lives of adults receiving community treatment as an alternative to their psychiatric hospitalization" (Estroff 1981:11 ). Estroff goes beyond labeling theory which "overestimates the importance of ... formal biomedical designations, while failing to consider adequately how aspects of the person influence label acceptance or rejection" (Estroff et al. 1991: 361 ). She found there were many rituals and symbols for the individual who was "making it crazy" in the community (Estroff 1981 :256). Some of the rituals that kept the individual linked to the idea of being a psychiatric patient included taking psychotropic medications being unemployed, dress and language, and the reactions of the community, service staff and family. Although Estroffs main concern was not the evaluation of the service system, she did discuss at length her informants' daily interactions with the systems that provided them services such as the community mental health center housing s ervices and the Social Security Office. She found that th e informants role s as crazy in the community were reinforced by social interaction s with oth e rs as well a s their own acceptance of the roles. In the study of children 's mental health service systems the s ocio-ecological approach was adopted, most notably by the p s ychologist Nicholas Hobb s in the development of"Project ReED" (1982) Project Re-ED was a residential treatment program for behaviorally disordered children The program stressed the need to re balance and refocus the child's ecosy s tem (e.g family, school work place community) instead of just fixin g the child (Hobbs 1982 : 189) In the multiple-case stud y there were similar microenvironments. The youths and their mothers were more or less competent in dealing with their microenvironments, both because of personal characteri s tic s and because of the differ e nces in the environments. To understand the sociocultural 77

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characteristics of children's mental health service systems it is essential to understand the services (or environments) available to family and child and the barriers presented by the various services that limit the family-service provider interactions Children are often seen as an adjunct to the adult system in the context of mental health systems. An example of this is seen in the book, Saints, Scholars, and Schizophrenics: Menta/Illness in Rural ireland, by Nancy Scheper-Hughes, a medical anthropologist (1979). Her purpose was to provide "a broad cultural diagnosis of those pathogenic stresses that surround the corning of age in rural Ireland" (Scheper-Hughes 1979:3-4). Child-rearing practices were examined as a way to reveal the "values and beliefs of the society" (Scheper-Hughes 1979:5). Scheper-Hughes concluded that the community was sinking into a state of disintegration and anomie, "of which the most visible sign is the spiraling rates of schizophrenia" (1979:189). The study of children their mental health problems, and their relations with their parents are important in this work, but the author's main interest was to look at the causes and rates of adult mental health in the Irish community across generations. In a later study in South Boston Irish-Catholic neighborhoods, Scheper-Hughes studied a group of middle-aged patients served by a day hospital program ( 1987). Children were not included in this study, however, the author did explore '"various cultural influences on individual, family, and community interpretations of the meanings of going and being crazy ... "(Scheper-Hughes 1987:54). Case histories and life histories were used to explore the impact of the individual's psychosis on his or her family members. Patient and family members were interviewed during the research in order to explore their different perspectives. Scheper-Hughes described how labeling of 78

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the person as "mental" began with the hospital psychiatrist, but was shaped by the person's ethnicity, the reactions of the family and community, and the "culture-bound" expression of illness symptoms. She writes that, The illness experience intrudes upon and transforms ordinary culture patterns and relationships. We are not dealing, then, with norms but rather with cultural patterns and beliefs as they are refracted through and changed by one of the most devastating assaults on personhood: psychosis Nevertheless, there is no doubt that cultures do provide some guidelines and social scripts for how to behave when crazy and how to respond to madness in others (Scheper-Hughes 1987:56). This study is a good example of how families, even when it is an adult child diagnosed as mentally ill, cope with the label, the person's behavior, and the service system. Another anthropological study that has combined children and the study of a mental health service system is described in the Schwartzman et al., article, "Children, Families, and Mental Health Service Organizations: Cultures in Conflict" (1984). The authors describe how psychiatric organizations can be seen as a "multi-cultural social service system" (Schwartzman et al. 1984:297). The authors discuss the idea, originally developed from studies of mental hospitals that mental health treatment organizations develop their own unique cultures or "small societies " (Schwartzman et al. 1984:297). Individual organizations within the system had to develop communication channels vvith each other and deal with each other's differing cultural premises. In this study these differences in cultural premises did impact an organization's decision making process. For example, during a client discharge from the hospital one particular outpatient facility was seen as a "good" placement by the hospital staff "because the treatment program was believed to replicate the ward program (Schwartzman et al. 1984:299). Although the hospital staff would not articulate it in this manner they shared friendship ties, and from those ties, specific "cultural beliefs about client treatment with the 79

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outpatient facility staff who facilitated an informal communication network and a comfort about sending clients to the placement (Schwartzman et al. 1984:299). Services that share cultural beliefs work well together, while organizations that "do not share basic premises are more likely to ignore one another or to conflict with one another, and therefore find it difficult to develop coordinated treatment programs or stabilize placements" (Schwartzman et al. 1984:304). Families with children placed in the facilities within this service system also dealt with the unique cultures of the individual services. Families had to learn about and deal with each service's basic cultural premises, such as the most appropriate treatment for their child, diagnosis, placement decisions and view of the family. An example is the hospital's view was that because the child was in the hospital, "then his/her family must either be "out-of-control" themselves and/or unable to control the child" (Schwartzman et al. 1984:299). In contrast, the family's point of view was, "the fact that their child was in the hospital confirmed their belief that the problem was located in the child", and it was then difficult for the family to understand why "they should be treated as co patients" (Schwartzman et al. 1984:299). The authors concluded that "a multi-cultural perspective suggests that all participants in the system do not (and cannot be expected to) share the same values and attitudes about treatment and therefore differences and even hostilities between groups should be expected" (Schwartzman et al. 1984:304). A recent evaluation by the Florida Research and Training Center for Children's Mental Health, USF, of the Texas Children's Mental Health Plan, Texas' program for mental health services for children with severe emotional disturbances, included Sharon Hodges, an applied anthropologist on the evaluation team. Hodges' doctoral dissertation 80

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describes the evaluation. The project goal was "to assist service systems in developing strategies to use outcome information more effectively in service planning and delivery" (Hodges 1997:2). The research methods employed in the evaluation were based on "the field of organizational anthropological and anthropological knowledge of organizational culture" (Hodges and Hernandez 1999:186). The team examined all levels of the system and looked at the use of outcome information in local planning processes. According to the model developed from this research, "the greater overlap between the local culture and the structural domains of the outcome evaluation yields increased utilization of outcome information at the local level" (Hodges and Hernandez 1999: 193) Much like the Schwartzman et al. ( 1984) research, this study found differences between the organizations that made up a mental health service system. Increased interaction, through training, friendships or other means brings the organizations closer together in their cultural premises and their actions, such as the use of an outcome evaluation process. Finally, there are a number of anthropologists working in the children's mental health field researching approaches to care and mental health treatment for ethnically diverse children (Koss-Chioino and Vargas 1999; Topper and Curtis 1987; Topperl992; Vargas and Koss-Chioino 1992). Topper, for instance, has developed a "multidimensional therapy" for Navajo adolescents that incorporates traditional Navaho healing ceremonies, views of healing and care by the extended family with Western medical and psychological clinical services His work is based on medical anthropology theory. Topper writes that the "multidimensional approach views the patients from the perspective of four basic dimensions of human existence: medical psychological, 81

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socioeconomic, and cultural-historical" (Topper 1992:231 ). This approach uses multidisciplinary teams within the context of the traditional Navajo healing beliefs. The work of these anthropologists and sociologists demonstrate that the study of people served by a system, such as children's mental health systems, should be examined within the social and cultural context of the community and society Neither the individuals seeking service, the service providers, the patient-healer relationships or the institutions can be fully understood by looking at any component in isolation. Leona Bachrach calls this "the principle of cultural relevance" (1987: 1 0). She writes that "service planning doesn't occur in a cultural vacuum, and it has to relate to real people and real communities" (Bachrach 1987:1 0). As public policy for children's mental health service system shifts and develops more responsive services within communities, research in the area must also take account of the sociocultural conte:x1 of the system. A sociocultural model that recognizes the system's context would be valuable in examining the strategies a family uses to seek and obtain support for a child with an emotional disturbance as well as for other family members. An example is the Schwartzman et al. study of a children's mental health treatment facilities system. They found that the system was a "multi-cultural social service system" not easily understood by the families (Schwartzman et al. 1984:297). The authors found that each treatment facility had its own unique culture, which included cultural values about treatment modalities and views of why the child was hospitalized Not only is the organization's cultures not shared by the families, it is also not fully shared by other treatment facilities in the system. The authors use this framework to show how successful outcomes for individual patients can be largely determined by examining how closely the different 82

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facilities and the families share cultural values. Cultural cohesiveness between facilities, and with the parents, appears to ease the child's transition between services and the family for a more successful outcome. Schwartzman et al. suggests that "a multi-cultural perspective" be used for understanding the relationship and problems between parents and the service system ( 1984:304 ). Anthropological Research in the Socialization of Children Socialization of children has been of interest to psychological anthropologists at least since the 1920's with the development of the "configurationalist approach" in the culture and personality school (Bock 1988:42). Anthropologists in this early culture and personality school were greatly influenced by Freudian ps y choanalytic theory. This led to a field work approach by Edward Sapir and Margaret Mead in the study of how an individual acquires his or her O\\'ll culture, which was reflected in Mead's field work (LaBarre 1958:283 ). Of primary concern to them were the formation of personality and how the individual learns culture. Sapir placed the locus of culture "in the interactions of individuals and the meanings they abstracted for themselves as a result of their experiences" (Garbarino 1977:64). For Sapir the learning of culture was unconscious in the same manner as the learning of language. Personality was seen to be of an integrative, configurational character" that influences behavior but is not equated with it (Bamouw 1985:7). "Configuration is a term for patterns which are wholes that are not merely the sums of parts but have their O\\'ll properties as wholes (Bock 1988:45). Margaret Mead is recognized as the major figure in the culture and personality school" and her work touched on all of the school's approaches (Bock 1988:53) Her 83

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early influences included Edward Sapir, Ruth Benedict, Franz Boas, and the psychoanalytic theories of Sigmund Freud and Erik Erikson. In the area of socialization she studied questions of growth, sex roles, temperament, personality development and cross-cultural socialization. Mead's early books on socialization, and sex roles and temperament, in sequential order, are 1) Coming of Age in Samoa: A Psychological Study of Primitive Youthfor Western Civili=ation (1973) originally published in 1928, 2) Growing Up in New Guinea: A Comparative Study of Primitive Education (1966) first published in 1930, 3) Sex and Temperament in Three Primitive Societies ( 1963) published in 1935, and 4) Balinese Character: A Photographic Analysis (Bateson and Mead 1962) originally published in 1942. Mead s influence in the area of socialization begins \vith these pioneering studies and the fact that she carried out each project with a specific stated purpose. This was a departure from Boas' traditional field work approach in which Mead had received her training This approach required that the anthropologist make as complete a record as possible of the disappearing primitive culture under study. It was Boas however, who suggested that Mead research the particular problem discussed in Comine: of Age in Somoa. Mead set out to determine if adolescence is a period "of emotional conflict and rebellion against authority" as it was seen to be in Western culture (Bamouw 1985 :95). The questions she posed were "are the disturbances, which vex our adolescents due to the nature of adolescence itself or to the civilization? Under different conditions does adolescence present a different picture?" (Mead 1973:6-7). Her conclusion was that, at least for the adolescent girls of Somoa, this period did not have to be a time of crisis. Mead attributed much of the easy adolescence for the Samoa girl to the simplicity and 84

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particular characteristics of the culture. She clearly attributed the problems of the Western adolescent to his/her culture. Mead believed that for all the benefits in Western culture there were inevitable pitfalls for the adolescent. In Coming of Age in Somoa, Mead concluded for it must be realized by any student of civilization that we pay heavily for our heterogeneous, rapidly changing civilization; we pay in high proportions of crime and delinquency, we pay in the conflicts of youth, we pay in an ever-increasing nwnber of neuroses we pay in the lack of coherent tradition which the development of art is sadly handicapped (Mead 1973: 13 7). Another of Mead's contributions was her recognition of"early learning of cultural patterns through nonverbal communication, (Bock 1988:55). Mead first described this type of learning in Coming of Age in Samoa, and she continued to find examples in her other field studies. Bateson and Mead described a particular mode of nonverbal learning in Balinese Character ( 1962 ). They explain that the teacher stands behind the dance pupil applying direct pressure to the hands and body. The student must be completely relaxed and flexible without consciously movement. Bateson and Mead found that "the Balinese learn virtually nothing from verbal instruction" ( 1962: 15). Both Mead and Bateson were strongly influenced by psychoanalytic theory, which is used in their description of early child development of the Balinese. Their ideas about socialization and the "ethos" of a culture demonstrated this influence, as well as that of Sapir's influence (Bateson and Mead 1962:xi). Although there is some question of whether Mead was acquainted with psychoanalytic theory before going to Samoa, the general tenor of her descriptions reflect this approach (Bamouw 1985:100). In Growing Up in New Guinea (1966) Mead wrote about how anthropologists broaden the theoretical knowledge of the psychologist and psychiatrist to non-Western people. Both her 85

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recognition of non-verbal learning and th e influence of psychoanalytic theory influenced her definition of socialization, or education, in her terms. She defined education as the process by which the cultural tradition is transmitted to the next generation, or in exceptional cases to the members of another culture-as in the case when a primitive people is suddenly brought within the sway of the organized forces of civilization (Mead 1966:264 ). This is the definition of unconscious learning that she separated from conscious learning for such activities as learning to read in school. Mead wrote that the cruld is indelibly imprinted by the social tradition, and that the child has little choice but to become an adult in the likeness of her parents. For Mead, education was "the process by wh i ch the growing individual was inducted into his cultural inheritance, not of those specific ways in which the complex techniques of modern life are imparted to the children in serried ranks within the schoolroom" (1966:262). Mead s contnoutions to the study of socialization included her pioneering work on the educational process in non-Western cultures, and her recognition of learning as a process that took place throughout the person s life and outside the classroom. In each book she was interested in using her findings to help explain and improve her own society. Her approach also showed that anthropology could be used to answer scientific questions that have relevance to Western societies. We now accept that her approach and research have their limitations, and that many of the basic assumptions of the culture and personality school, such as "configurational types" for societies are no longer unquestioned (Bock 1988:50). As it became apparent that there were problems with the culture and personality approach in the study of socialization, the Institute of Human Relations at Yale University began developing an alternative psychological anthropological approach after 86

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World War II. This approach was called the "cross-cultural correlational approach" and was established by psychologists Clark L. Hull and John Dollard, and anthropologists George Peter Murdock and John W. M. Whiting (Bock 1988: I 05). John W. M. Whiting became actively involved in cross-cultural research on socialization. Initially, Whiting and Irvin L. Child, a psychologist, wrote Child Training and Personality: A CrossCultural Study (1953) that proposed to test learning-theory using data from the Hwnan Relations Area Files (HRAF). The HRAF are microfilmed, indexed and crossreferenced files on hundreds of societies that list dozens of topics for each on such areas as kinship and residence. Beatrice B. Whiting, John W. M. Whiting's wife, also used cross-cultural comparative data in her book Paiute Society ( 1950). Although the advantage of cross-cultural studies are that they allow for the formulation and testing of hypotheses, there are problems including the materials available to study particular behaviors and the coding and analysis of the behaviors under study may not be consistent. With these considerations in mind, the Whitings developed the "'Six Culture Study as a way to intensively study child rearing practices and socialization in a number of different societies. The goal of the Six Culture Study was to move toward an improved understanding of socialization by accomplishing two main tasks: clarifying the processes by which the culturally determined environment affects the development of sex-differentiated behavior during the childhood years, and, at the same time, considering how these cultural processes may interact with biological and cognitive-developmental aspects of child behavior (Whiting and Edwards 1988:3). The emphasis in the Study was on observing the children in their natural environments and focusing on the social behaviors of the subject children The variations in natural learning environments was dependent on factors such as the age and sex of the child, 87

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"the type of learning environment provided by the culture in which the child is brought up", the situation in which the child is observed, and "differences in the learning environment within the culture that distinguish some individual children from others" (Whiting and Whiting 1975: 1 0). What is learned are behavioral styles, skills and abilities, values, conflicts, and defenses. A field guide with standardized interviews was developed and six fieldwork teams used the guide in communities of between 50 and 100 families during 1954 and 1955 (Whiting, Child and Lambert 1966). The six communities were in Orchard Town, USA; Juxtlhuaca, Mexico; Tarong, Philippines; Taira, Okinawa; Khalapur and Uttar Pradesh, India; and Nyansongo, Africa (Fischer and Fischer 1966; LeVine and LeVine 1966; Maretzki and Maretzki 1966; Minturn and Hitchcock 1966; Nydegger and Nydegger 1966; Romney and Romney 1966) The Six Culture Study's observational approach was an improvement over the research conducted previously. Attempts were made to standardize data collection and precautions were taken against bias, including a minimum number of five-minute observations made of each child. The findings of the Six Culture Study were numerous and were most recently reanalyzed in the book Children of Different Worlds: The Formation of Social Behavior (Whiting and Edwards 1988). In this book the authors broadened the ideas about household and family structure. The findings of the Study are numerous and detailed in a number of books: Mothers ofSi.x C ultur e s (Minturn and Lambert 1964 ), Six Cultures: Studies of Child Rearing (Whiting 1963 ) and C hildren of Six Cultures: A Psycho-Cultural Analysis (Whiting and Whiting 1975). The i mportance of the Six Culture Study is primarily that it was a carefully planned project for the study of socialization and child rearing across cultures. Some of the drawbacks of the Study 88

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included a limited number of interviews with mothers, limited behavioral observations of the children and the lack of the use of projective tests. However, the strengths of the study make it an important contribution to the field. The Study's strengths include the standardized field guide, the attention to cross-cultural and intra-cultural analysis, the original collection of similar behaviors, and the ability to observe social behavior in a number of settings and with a variety of socializing agents. The Six Culture Study is an impressive achievement that proved that research into socialization could be done with original cross-cultural data. The next two studies I discuss were not undertaken to examine socialization so much as to describe children and adolescents living in contemporary society in the United States. Both studies demonstrate the dichotomy suggested by Mead between learning the c ultural tradition s of a sub-section oftoday s larger society and l e arning in the schoolroom. The first study i s by Gerry Ro s enfeld and de s cribes an e l ementary s chool locat e d in the Harlem area ofNew York City. The study occurred over a five and a halfy ear period beginning in June 1957, when Ros e nfeld taught at Harlem School. His ethnography "Shut T hose Thic k Lipsf A S tudy ofSlum S chool Failur e (1971), describes th e teacher s, administrator s and s tudent s in the elementary school. The stud y wa s published as part of the Case Studie s in E ducation and Culture" s erie s edited by George and Louis Spindler. Ro s enfeld used a variety of m e thods, including partic i pant obs e rva t ion collection of information from school records and the use of children as informants a s a way to learn about their neighborhood and life outside the s chool. The second s tudy is by Gerald Suttle s who wrote thi s e thnograph y about a s lum neighborhood in The S ocial Ord e r of the Slum: Ethnicity and T e rrit o ry in th e Inn e r C i ty 89

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( 1968). Suttles describes the different ethnic groups and youth gangs that lived in the Addams area of Chicago's Near West Side from 1963 to 1966. As a research assistant for the "Chicago Youth Development Project" which focused on reducing delinquency in the area, Suttles' data collection methods were primarily participant observation, "augmented by the long term use of informants and data available through public sources" (1968: 11 ). Suttles does not define socialization in his book. However, he does describe learning situations within the slwn area. Enculturation is defined by Rosenfeld as "the means by which each person asswnes a relationship to his culture" (1971:2). The child is seen as the "host" or "recipient" of her culture, and the relationships with others are the important ingredients to learning (Rosenfeld 1971 :2). Rosenfeld writes that cultures throughout the world use a variety of means "to convey the cultural heritage to children so that they acquire and internalize the skills and central beliefs necessary for participation in their societies" (Rosenfeld 1971 :25). It is the parental generation that perceives and strives to make the children into what they become. Rosenfeld agrees with Mead's definition of education and the dichotomv between learning one's cultural J heritage and learning in a schoolroom. Rosenfeld found that the teachers and administrators, who mostly were from outside the area, came to teach the Black and Puerto Rican children of Harlem with a set of negative and false perceptions. The children responded with a variety of protective responses, such as withdrawal, acting in a manner that fit the false perceptions, and behavior problems. Rosenfeld writes that the teacher can be a change agent within a joint social structure with the children. The classroom and school are cultural systems 90

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that are part of the larger society. However, because of the pervasive negative attitudes of the teachers and administrators at Harlem School who saw the children as incapable of learning for a variety of stereotypical and false reasons they found little motivation to really attempt to teach. Harlem School was peripheral to the neighborhood and the children's lives. The children lived and became socialized in the neighborhood with their parents, siblings and peers, not in the school. There was no congruence between what the child was asked to learn in the school and what he would become growing up in his own neighborhood. This is where Rosenfeld parallels Mead's ideas about learning a cultural heritage. Learning in a formal classroom in Harlem School was not only antagonistic, but had a negative relevance to the children living in the slum neighborhood. In his book Suttles shows how youth learned to function within the environment of a slum neighborhood. His descriptions demonstrated that being poor and growing up in a slum could be difficult, however the childr e n and youth learned very well how to function within their neighborhood, and man y a s adults, functioned well within their neighborhood and within the larger society. One of the major problems for the residents of the slum area, like the racially mixed area of Addams, was finding a way to discriminate between those one can and can not trust. The Addams-area residents included a large and well-established group oflta1ians, Blacks who mostly live in housing projects and s maller numbers of Mexicans and Puerto Ricans. The neighborhood residents had formed a distinct organizational structure that determined personal acquaintances and interactions. Suttles termed this pattern of social interrelationships within the Addams ar e a ordered segmentation and writes that this is 91

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a general framework that all ethnic groups more or less share. Not only does this structure determine adult patterns of behavior, but it also determines youth gang patterns of behavior. Suttles found that about 50 percent of the male youth in the area formed into age grade gangs beginning as young as 10 to 12 years old, usually lasting until about age 19. Many of these young men then joined adult male social groups in the neighborhood that continued their associations and friendships. Each age group developed its own gangs, they did not join older groups as they matured although there were at times a "mentorship" between younger and older gangs Suttles believed th e se gangs had a specialized function within the Addams area which was to enlarge the number of people that could be easily identified and known within the neighborhood. The street comer gangs were also keepers of ethnic boundaries, a guarantee of safety between groups, and a keeper of territorial integrity. Suttles' description of the street comer gangs in the Addams area is one example ofRosenfeld's definition of the socialization or enculturation process. The gang becomes the socializing group Learning occurs from the peers and in the neighborhood including from slightly older peers who mentor the younger gangs. Because personal characteristics and personal authority are paramount, the ability to deal with and recognize these elements was essential for the individual youth living in Addams area. The cultural traditions of the different ethnic group gangs are transmitted through informal teaching. Like the children described by Rosenfeld, the adolescents in the Addams area street comer gangs were learning how to relate to their culture within their neighborhood. They were becoming what their parents expected of them as adults. If 92

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the schools in the Addams area were as antagonistic and irrelevant for their youth as it was in the Harlem students, the adolescents were probably becoming socialized into their neighborhood culture to the exclusion of more formal, but less relevant forms of education. Both Suttles and Rosenfeld's studies showed how the exclusion of the child and adolescents living in slwn areas, from a relevant formal education "results in his exclusion from the major institutional arrangements of his time This exclusion further prevents him from learning the requisite behavior for his inclusion, thus precluding his chances in a tightening circle around him" (Rosenfeld 1971 :95). Both studies further demonstrate that the child is fully equipped to live in his/her own environment and becomes enculturated into the local culture, while at the same time rejecting and being rejected by the wider society. Anthropologists continue to actively research socialization today. A review of the literature shows that there are a number of specific topics being addressed, including the socialization of affect, economic conditions on the socialization of children, socialization of sex identity, socialization of adults and adolescents, peer group socialization, and theory building in the area of socialization or cultural transmission. Theory building by Mead and the Whitings dealt with child rearing and cultural transmission ; today, the focus has shifted to looking at what is happening within the child (Schwartz 1981 :9). More current work is based on general systems theory, information processing orientation and cognitive mapping to explain the internal processes of socialization (Dobbert et al. 1984; Gearing 1984; Jones 1983) Socialization continues to be of great interest to anthropologists today However, the child rearing literature and the neighborhood studies provide a better understanding of 93

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the study presented in the dissertation, so no further details will be offered on socialization. Medical Anthropology Theory The theoretical orientation of the dissertation is based on that branch of medical anthropology theory sometimes called the anthropology of biomedicine. This orientation was utilized in the dissertation research and analysis in two ways. First, it was the operational framework used in the design of the multiple-case study research plan. The theory provided a model for looking at how the parents interacted with the school system professionals and with other support givers. The framework was used to design the case study research questions, select the cases, collect the data and provided the link from data collection to the case reports. Data collection for the multiple-case study was structured around a modified version of Kleinman's "mini-ethnography" described in his book The Illness Narratives (1988) (Appendix 4). Kleinman developed the mini-ethnography for the clinician who wished "to place himself in the lived experience of the patient's illness that is to try to understand from the patient's perspective how the illness is experienced, understood, perceived, and felt (Kleinman 1988:232). Understanding the experience from the "native's or "patient's" point of view, and then describing the experience as a written ethnography is most often the anthropologist's challenge. The task is "to impose a cultural framework for interpreting what is taking place" (Wolcott 1980:58) The mini-ethnography provided a way to get at the cultural framework of the young men's illnesses and explore their and their mothers' perspectives about the illness and impact on their lives The mini ethnography proved to be extremely useful in focusing the inquiry and assuring that all aspects of the illness experience were explored. 94

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Second, the anthropology of biomedicine model was used to develop an explanatory proposition for the further analysis of the multiple-case study data. The proposition is used to analyze the cause-effect relationships between the mothers' frame of reference and how they view their sons' functional outcomes as young adults. Functional outcomes are how well the young men function in such areas as school, home and community. The anthropology of biomedicine provides the opportunity to look at the differing perspectives of parents and compare them to professional service givers and explain how those differences in perspective may impact the young men's outcomes. The use of a medical anthropology model to examine this particular relationship may, at first, seem somewhat misdirected when most of the parent-service provider relationships involve non-medical personnel and systems, specifically public schools. However, it should be recognized that in the United States, children labeled seriou s ly emotionally disturbed receive highly medicalized treatment based upon a medical/psychological diagnosis. The school system or soc ial service deal with the child on the premise that he/she i s "sick" and requires treatment. Treatment may be in the form of special education or therapeutic foster care but the ba s ic model remain s the western medical model of treating the "sick" patient, a s oppo sed to treating the "illness" and it s functional consequence s as defined by the child and parent (Kleinman 1980) The anthropology of biomedicine th e ory was selected for several reasons for use in the research and dis s ertation. First, a s mentioned above, the child with s erious emotional disturbances continues to be s een as "sick" by the s ervice systems. There is also a continuing bias in the service s ystems fo r defining the familie s as "dysfunctional" and for providing inten s ive treatments that fix" the child (K.nitzer 1993 : 9). This 95

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approach taken by the service systems suggested a patient-healer relationship. The theory is particularly suited to examine the patient-healer (or client-service provider) relationship. It can examine the relationship from both the parent and the professional perspectives and can examine the interrelationships and their workings. The model is also useful in exploring the reasons why the family and child did or did not comply with the provided treatments. For instance, in the anthropology ofbiomedicine model the concept of "explanatory models" is used to examine the lack of understanding on the part of the patient and the family, and the healer (Kleinman 1980). Kleinman defines explanatory models (EM) as "notions about an episode of sickness and its treatment that are employed by all those engaged in the clinical process" (Kleinman 1980:1 05). The study of explanatory models is especially critical if the illness is chronic and treatment is long-term (Kleinman 1980). For the child with a serious emotional disturbance the lack of understanding on the part of his/her family or the service provider can create miscommunication with long-term conse quenc es For example the family may resist an offered treatment because they never fully agree with the diagnosis of the child as emotionally disturbed and are never able to communicate their dis agre e ment to the provider. In tum, the s ervice provider may perceive the family as non-compliant and unwilling to help their own child. A miscommunication of this sort may have serious consequences such as e x cluding the fam i ly from treatment decisions The anthropology of biomedicine model is useful in examining the families' explanatory model s and how their models influence their decisions and actions 9 6

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IV. CASE STUDY METHODOLOGY Many types of good results are the fruits of qualitative research (Peshkin 1993 :28). Case study methodology was selected for this project to examine the behavior of families seeking help for their children identified a s seriously emotionally disturbed. The qualitative case study was seen, as explained in the introduction, as an alternative or complementary research method to the National Adolescent and Child and Treatment Study. As a methodology, anthropologists, educators, and other social scientists for a variety of reasons have used case studies. Case studies have been used as a teaching method, for social science thesis and dissertation research projects, and for exploratory explanatory, and evaluative studies on a wide range of s ocial and educational iss ues (Spindler and Spindler 1990 ; Stake 1994; Yin 1989; 1993 ). The methodology fell out of favor in the pa s t due to its perceived limitations and an evolving emphasis on the quantitative scientific method in the social sciences. Recently the case study methodology has enjoyed a re s urgence in such disciplines as sociology and education. Much of the new interest in the ca se study methodology has come from the strengths of the approach and the growing need in social science research to supplement the scientific method with better theory building and exploratory approaches (Orurn Feagin and Sjorberg 1991; Peshkin 1993; Vaughan 1992; Yin 1989, 97

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1993 ). The strongest proponent of this methodology in recent years has been Robert Yin, who has worked to develop procedures based on scientific principles that will provide standardized processes for researchers using the method. This chapter begins with an assessment and description of a qualitative case study approach as it has developed over the last twenty years. The advantages, and limitations, and the justification for the use of the methodology will be examined. A synopsis of Yin's approach is provided next, including his definition a case study and a review of validity and reliability questions. Yin's approach was used to develop the case study design, data collection and database and analysis presented in this dissertation. The chapter ends with a description of the research plan developed for the study into the behavior of families seeking help for their children identified as seriously emotionally disturbed. Development of the Case Study Methodology There are two distinct methodologies placed under the general rubric of case study within the s ocial sciences The first approach i s an experimental single-case stud y design often used in clinical psychology research (Crane 1985 ; Edgar and Billingsley 1974 ; Kazdin 1981; Kenned y 1979; Kratochwil11985; Kratochwill and Williams 1988; Murphy, Tosi and Pariser 1989). The second approach which is the concern of this paper, is a naturalistic research design It is the naturalistic case study methodology that has been g aining popularity as a useful approach in recent years The naturalistic ca s e study wa s traditionally seen as "essentially exploratory i n nature; it focu s es on the individual, and it aims primarily at discovering and generatin g hypothesi s (Bolgar 1965 : 28) The common view of this approach was that it "1) s hould 98

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only be used at the exploratory stages, 2) leads to unconfirmable conclusions, and 3) is really a method of last resort" (Yin 1981:97). This limited view of the case study has changed as the methodology was developed for exploratory, as well as descriptive, evaluative, and explanatory purposes. The literature on the naturalistic case study does not provide a consensus however, there are a number of characteristics generally recognized by researchers that describe the methodology. Being a naturalistic methodology, it shares the characteristics of other qualitative approaches, such as an inductive approach to data analysis a search for patterns in analysis, a holistic view, and a consideration of the real-life context. However, a case study is distinguishable by its purpose more than the characteristics shared with other naturalistic social science approaches. A Case Study Definition A ca s e study may be defined "a s an in-depth, multifaceted inve s tigation, using qualitative research methods of a s ingle s ocial phenomenon" (Orurn Fea gi n and Sjorberg 1991 :2). This i s a broad and perhaps ambiguous definition and it does cover examples of case studies that range from large complex organizations to single nuclear families However the important aspect of this definition is that a single social process or phenomenon is being investigated in an in-depth manner such that "a case study takes a single count and opens it up with attention to context" (White 1992 : 83). Here the added defining aspect is that there must b e an awarene s s in the case study of "the relational purport of case s (White 1992 : 84) In other words each case in a case study mu s t be s elected because it has all the characteri s tics required that identified i t as representing the phenomenon under study 99

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Case Studies and Context Each case study, within its context, is placed firmly in a rich field of relational variables that are as important to the research as the more narrowly defined case. Platt (1992) discussed a number of classic case studies and showed how the authors used their selected cases to build their theoretical arguments. For instance, using Ruth Benedict's book, Patterns of Culture ( 1961/1935), Platt writes that Benedict was successful in "both presenting very alien social patterns as natural and understandable in their context, and therefore not to be criticized from our cultural perspective, and invoking value judgment about certain patterns as psychopathic" (1992:26). It is the description of the particular case within its own context that can lend the author a powerful tool in explaining his or her theoretical purposes. Stake believes this is a particularly valuable aspect of the naturali s tic case stud y He write s that "wh a t becomes useful understanding i s a full and thorough knowled g e of the particular, r e cogn i zin g it is also in new and foreign conte x ts ( Stak e 1978 : 6). In case s tudy re s ea r ch the boundarie s between the real-life context and the phenomenon under s tudy are not clear-cut nor may the phenomenon be s tudied outside of its i dentified context. Case Studies and Boundaries As important as the context is to the c as e there is the equall y important issue of defining o r identifying the case and keepin g its boundaries firm or a t leas t recognizable. Stake stresses that ther e mus t be a clear distinction of "what is and what i s not 'the casem (1978 : 7). He also notes that the boundari es of what is the case are determined within its own boundaries and are not determined by outside issue s or hypothe s es. For in s tance, if the case were originally id e ntified a s a family unit, Stake would e x pect that this unit of 100

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analysis" not shift during the research process to perhaps become an individual family member. In contrast, Ragin writes "that cases are dynamic", and seems to credit the case with a certain fluidity that ebbs and flows with the collection and analysis of data (1992b:225). He goes on to say that cases are "products of basic research operations" (Ragin 1992b:218). "Casing" as Ragin terms this process, can occur throughout the research process and is a "methodological step" ( 1992b:218). Through this fluid process the case (i.e. the family as the unit of analysis) and the research questions may shift, sometimes drastically (i.e., the individual family member becomes the unit of analysis). However the casing process shifts, Ragin emphasizes that the ideas (theories) and the evidence (cases) must match. He writes that, "either the case must be matched to the appropriate theory or its decisive theoretical properties must be specified so that it can be located theoretically, often generating new ideas in its wake" (Ragin 1992b:221). In Ragin's view the case may change from one thing to another during the course of the research but the boundaries must still be recognizable in the re-casing. Stake would not accept this fluid definition of the case, and would suggest that the researcher go back to the beginning and redesign his!ber research questions Robert Yin strongly disagrees with Ragin' s approach to defining the case and argues that the case should not shift during the cour se of the research He notes that this is a source of serious criticism for the case study methodology, and that the shifting of the case needs to be avoided if the original research questions are to remain v alid If the case does s hift Yin suggests that the most appropriate response is to stop the study and start over by carefully restating the research question s and redefining the cases. Yin's solution to the pitfall of shifting cases is to select an "embedded case study design" 101

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(1989:49). With an embedded design, data collection and analysis can occur "within a single case, [but] attention is also given to a subunit or subunits" (Yin 1989:49). Case Selection and Research Design As divergent as the ideas are about the ability of a case to shift in definition, all authors agree on the fundamental idea that a case must be bounded to determine what phenomenon is under study, and that the case must be studied within its context. The possibility of the case shifting away from the research question is a very serious concern in case study methodology. This is important at two junctions of the research, first in the selection of the case, and second, in the researcher's claim that the case is theoretically representative. The purpose of the case study will determine its design from the research question to the case selection, data analysis and final write-up. Yin calls the research design "an action plan for getting from here to there", or to getting from the empirical data to the conclusions (1989:28). According to Yin the action plan is essential to tying the ideas to the evidence and assuring reliability. Walton explains that when a researcher presents a case study s/he implies: ... particularity cases are situationally grounded, limited views of social life On the other hand, they are something more not simply glimpses of the world or random instances of social activity. When researchers speak of a "case" rather than a circumstance, instance, or event, they invest the study of a particular social setting with some sense of generality. An "instance" is just that and goes no further. A 'case' implies a family; it alleges that the particular is a case of something else. Implicit in the idea of the case is a claim (1992 : 121). This claim is based on analytic generalization (i.e., generalization based on selection of the case for theoretical reasons) and the selection of the case through replication logic. The case study methodology has developed along a number of lines and with some disagreement among its proponents. However, they all agree that the case study 102

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methodology is most useful when the researcher wishes to study a phenomenon in-depth within its own context. They also agree that the methodology and case selection is based on a theoretical representation. The discussion now turns to Yin's approach, which provides the best defined process and design so far devised for case study research. Yin's Case Study Methodology Approach In an attempt to center the multiple-case study described in this dissertation it was necessary to select a focal case study approach. This focus, Yin's case study methodology approach, provided a basic definition for the study, helped with the design of the research or the action plan, and helped assure that a number of validity and reliability questions were addressed. The multiple-case study research described in this dissertation is based on Robert Yin's book, Case Study Research: Design and Methods (1989, 1994). Yin's Case Study Definition Yin's definition sums up the characteristics of the previous discussion on the case s tudy approach. Hi s definition is : A case study is an empirical inquiry that: investigates a contemporary phenomenon within its real-life when the boundaries between phenomenon and context are not clearly evident ; and in which multiple sources of evidence are used (Yin 1 9 89:23). The one area that Yin diverges from the previous definition and discussion of a case s tudy i s that he does not equate case studies with qualitative or quantitative research. For Yin, a case study may use either qualitative or quantitative methods of data collections or may use a variety of collection methods as required for the study 103

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Because "case studies are research situations where the number of variables of interest far outstrips the number of data points" the study design must dictate the data collection methods that will be used rather than the data collection methods dictating the research design (Yin 1994:13)_ Types of Case Studies Yin categorizes case studies in a number of ways: 1) by the study's purpose, 2) by the number of cases and 3) by case study design_ A case study can have one of three purposes, they are: 1) An exploratory case study is used when the existing knowledge or literature is poor: "offering no clues for conceptual framework or notable propositions, a new empirical study is likely to assume the characteristics of being an exploratory study" (Yin 1998:236)_ 2) A descriptive case study "covers the scope and depth ofthe object (case) being described" based on a descriptive theory (Yin 1993:22)_ The descriptive theory is not an expres s ion of a cause-effect relations hip and the descriptive study pres e nts a complete description of a phenomenon within its context (Yin 1993:22 5)_ 3) An exploratory case study "pre s ents data bearing on cause-effect relationshipsexplaining which causes produced which effects (Yin 1 9 93:5) Rival theories can also take the form of rival hypotheses or rival explanations (or alternative explanations) and be used for exploratory case studies_ Descriptive and e x ploratory case studies begin with the development of theoretical propositions_ Yin writes that, "the theoretical propositions made at the onset of the research could specify a complete and logical (but hypothesized) series of causal events, connecting variables and con s tructs (Yin 1998:234 )_ Exploratory case studies do not begin with propositions but must begin with a stated purpose and a descriptive theory. Theory a s u sed in case studie s as defined by Yin, means, "the design of research steps according to some relationship to the literature policy issues, or other substantive source (Yin 1993:4 )_ Good theory in this s ense helps define what i s to be studied, and 104

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is essential in the design of the case study and the ability to generalize the results. Case studies can have from one to any number of cases. A single-case design is usually done if the case is unique in some way. However with a good theoretical design, analytic generalization is possible. Two or more cases are defined as multiple-case studies. Yin writes that "the benefit of multiple-case studies is that they strengthen and broaden the analytic generalizations, in a manner similar to the role of multiple experiments" (Yin 1998:240). Analytic generalization in multiple-case studies is assured through a research design that covers different theoretical conditions for predictable reasons by the use of replication logic, which is described below. The decision about how many cases to include in the study is also based on the resources available, the number of cases required to examine the different theoretical conditions, and satisfying the need for robust results. Finally both single and multiple-case studies can be categorized as holistic or embedded. A holistic case study examines a single unit of analysis. For example, a neighborhood could be the single unit of analysis In an embedded case study multiple units of analysis are used. In this example the neighborhood is the main unit of analysis, and the individual families living in the neighborhood are the sub-units of analysis The families may be asked to answer a survey, while the way the neighborhood solves a problem with zoning is studied using observations at meetings, and questionnaires for the neighborhood organization officers. The use of embedded units of analysis helps keep the definition of the case study within it original bounds so that it does not shift. 105

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Analytic Generalization and Replication Logic Replication logic, for the selection of multiple-case studies and for the purpose of generalization is essential in the case study methodology developed by Yin. He writes that the underlying logic used for multiple-case studies is the same as the logic used to select multiple experiments (Yin 1989: 53). Selection of each case is done for the purpose of "analytic generalization" which can be contrasted to "statistical generalization" (Yin 1989:38). This is also called "theoretical or purposive sampling" (Ragin 1992a:7). The individual case study is not to be considered a statistical sample nor is it to be treated as one case or subject of a statistical sample. Yin explains that "individual case studies are to be selected as a laboratory investigator selects the topic of a new experiment. Multiple cases, in this sense, should be considered like multiple experiments (or multiple survey s)" ( Y in 1989:38). Thi s mean s that "each ca s e mu s t be carefully selected so that it either ( a) predict s similar result s (a literal r eplic ation) or (b) produces contrary r e sults but for predictable reason s (a th e o re t ic al r e plication)" (Yin 1989:53). Each case is selected to test or revise the initial proposition s I f a serie s of case studies are performed and half obtain s i milar results, "replication i s s aid to have taken place" (Yin 1989:53) Other cases may be designed to explore other aspects of the study question and would be considered theoretical replications. Yi n emphasizes that Each individual case s tudy con s ist s of a 'whole' study in which converg e nt evidence is s o ught regarding the facts and conclusions for the case : each case's conclusions are then considered to be the information needing replication by other individual cases (1989:57) Cross-case comparisons can then be made, and the study report should include information on the replication logic u s ed to select the case s and the extent predicted 106

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results occurred or did not occur for all cases in the study. In addition, every case must be accounted for and variations in patterns must be explained. Replication logic leads to a claim of analytic generalization for the case study methodology. The selection of the single case or multiple cases, based on rational theoretical reasons, is done so the claim that "case studies are related to broader classes of events" may be made (Walton 1992:121 ). Analytic generalization is a central characteristic of the methodology. All case studies should be evaluated on the strength of the claim of generalizability and the careful selection of the cases. For multiple-case studies, the evidence can be even more compelling depending on the replication logic used and the outcome of the predicted results These characteristics of the multiple-case studies can provide the researcher with even "more robust" evidence (Yin 1989:52). Case Study Research Plan and Questions of Quality Yin's approach provides a framework or action plan to focus the research in such a way that reliability and validity questions are addressed from the beginning to the end of the study Lincoln and Guba refer to this process as the researcher establishing the trustworthiness" of his/her arguments (1985:290). In Yin s approach the research design includes these components: 1) the study's questions; 2) its propositions, if it is descriptive or explanatory, or a purpose if it is exploratory ; 3) its unit(s) of analysis, and the decision to use a holistic design or an embedded design; 4) the logic linking the data to the propositions and research question, accomplished through the case study data base and anal y sis; and 5) the criteria for interpreting the findings, or how well the questions have been answered (Yin 1989:29). 107

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For Yin there are four logical tests for judging the quality of a case study and its design. The first, construct validity deals with using "tactics" of "multiple sources of evidence, establishing [a] chain of evidence", and having key informants review a draft of the case study report (Yin 1989:40-41). External validity is dealt with during the design of the research and through the careful selection of cases using replication logic. To assure reliability a case study protocol is used and the case study database is continually built during data collection. To establish and increase reliability for the case study a chain of evidence must be maintained from the initial research questions to the analysis. The reader should be able "to follow the derivation of any evidence from initial research question to ultimate case study conclusions" (Yin 1989:102). Finally, internal validity is performed during data analysis using tactics such as "pattern matching", "explanation building" or "time-series analy s is" (Yin 1989:41 ). The ultimate goal of using one of these "general analytic" strategies is "to produce compelling analytic conclusions, and to rule out alternative interpretations" (Yin 1989 : 1 06). Multiple-Case Study of Families Seeking Help for Children with SED Research Plan Next the research plan for the case study presented in this dissertation is described, including the study's purpose and questions its unit of analysis and case selection, data collection and the case study database and the case study analysis The original research plan was developed as an exploratory holistic multiple-case study. 108

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Purpose and Questions The purpose of the multiple-case study was to begin to explore family strategies for seeking and obtaining the needed support for their children identified as seriously emotionally disturbed. The primary research question and its sub-questions were developed to reflect this interest. At the time the study was completed little was understood about how parents interacted \vith service providers. What information was available on family-service relationships was scarce and never from the famil y perspective, except anecdotal stories. From the beginning of the project there was some question as to how legitimate the families would find the questions and if their perspective would require a shift in approach. For instance, would the parents be able to describe the decisions they made and the actions they took in the past or would another research approach such as observation be needed to explore the research questions? One of the purposes of the multiple-case study was to explore the feasibility of using the cas e study methodology in the area of the children s mental health service systems The exploratory how and why questions were developed to focus the researcher's exploration of the families' lives and how the parents went about finding help for their children. Of particular interest were the family's relationships to both the informal and formal support givers. During the development of the research questions they were shared \vith a local parent support group (PACED located in Tampa) a number of staff and faculty at the Louis de Ia Parte Florida Mental Health Institute involved in children's mental health service system research and Jane Knitzer, author of U nclaimed C hildren ( 1982). The input of each person was used to clarify and narrow the focus of the questions. The final version of the original exploratory research questions is shown in Appendix 1. 109

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Unit of Analysis As the research questions w e re developed a decision on how many case s to include m the project w as made. TviO cases w ere selected in order to replicate the requirement for one successful community outcom e and one unsuccessful community outcome for the youth \vith SED. The number of cases was restricted for other r e asons such as limited resources, time restrictions, funding constraints and the length of the indepth interviews However, th e re wer e r e asons to expand the number of cases beyond a single case. First, there was the desire to retain a n ability t o compare and contrast cases and to broaden the anal y sis and examine differences if any w e re found Second wa s the desire to select some specific contr a sts in the cas e s such a s urban vs. rural and community success and nons uccess for the young participants. All of these factor s w e re con sidere d a nd the deci s i o n was m a d e t o u se two cases for t h e s tud y C as e S election O nce th e r ese arch questi o n s w e r e d evelope d and the numbe r of cases d ec ided th e process o f sel ectin g th e two c a se s tu d ie s comme n ced Using replic ation lo g i c th e se l ectio n of the tw o case s tud y f a mili es beg an '.Vith a n examina tion of t h e d a ta from th e ]\;a tional A d o l esc ent and C hild T reatm e nt S tud:. (NACTS) s urv ey. D a t a co ll ec tion \vas co mple t e d for t h e seve nth and fina l year o f thi s l o n g itudinal s urv ey in 1 992. The s urvey \vas d es i gne d to colle c t dat a on the chara c teri s ti cs an d ser vice h is torie s of chi ld re n a n d youth w ith se riou s e m o t i onal d is tur b a n c es. NA CTS s urvey da ta u sed t o m a k e e a ch c ase se l ec tion included d emograp hi c c h a ra cteristics of th e child an d f am ily ; Year 1 a n d Y car 4 p syc hiatri c dia gn o s e s (de t ermi n e d f r o m th e Di ag no stic Int erv iew S c h e dul e for C h i ldren or D 1SC); Yea r 1 an d Year 4 ba n eries of p ro j ective t es t s ; a n d se rv i c e his t ories 110

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The case selection process began by examining the NACTS data on 14 participants who were in their teens, lived in Hillsborough County, and lived at home with at least one parent. During the next step minority and female participants were eliminated from the selection list. The decision was made to select white males because they were the majority participants in the NACTS survey. We now had nine participants on our selection list. During the next step, multiaxial timelines, a concept developed by Schaefer, Burchard, and Rick ( 1991 ), were used to plot the NACTS data over time for five types of information: the child's behavior, family events, family services, education services, and residential services. From the multiaxial timelines on the nine participants we selected two participants who appeared to be making successful community adjustments in their late teens, and two participants who were not. This left four participants on the selection list who met our criteria for selection in the case study Table IV-1 shows the NACTS data on these participants. Characteristic of particular concern in the final selection was that the youth had to live in the local community with at least one parent. One last essential characteristic for the selection of the families was the willingness of all individuals concerned to participate in the research. Three families were asked to participate and two families agreed to take part in the project. Both youths lived in the community, one with his biological mother in Lithia (a rural area) and the other youth lived with both of his biological parents in the Interbay section of Tampa (an urban area). One of the cases (Case A-FS234) demonstrated less success in community adjustment according to the NACTS data than did the other (Case BFS253). For the characteristic of success in the community the data shown in Table IV -1 were examined 111

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to determine if one participant looked to be relatively more successful, while another looked relatively unsuccessful in his community adjustment. These judgments were based on educational achievement, job status, and the DISC diagnosis. This initial "subjective" choice from the NACTS data did not stand up to examination by the more in-depth case study examination This part of the study and the selection of cases with regard to success in the community raised a number of questions about the use of quantitative survey data to make judgments about individual community adjustment. Data Collection and Database For each case the mother and the youth were interviewed separately for a total of twelve to thirteen interviews, over a four-month period. For Case A, the youth's school was visited and his teacher and principal were interviewed. For Case B a tour of the neighborhood was taken becau s e the youth had already graduated from high school and worked clo s e to home. Durin g the first vi s it with each family I introduced myself, explained the purpo s e of the re s earch, discussed the interview s, asked their permis s ion to tape the interview s had them sign consent forms for the research (Appendix 2 and 3), and administered the NACTS Year 7 interview to the youth E ach participant i n the case study received $25.00 at the end o f each month for a total of$100.00. Data collection was structured around the mini-ethnograph y s hown in Appendix 4 and was u sed as the standardized protocol to ensure reliability in the cases. The mini-ethnography was modified from Kleinman' s mini-ethnography described in The Illn e ss Narratives : S ufferin g Healin g and the Human C onditi o n (1988 : 230-236). An unstructured interview format was used One or more parts of the mini-ethnography were selected for exploration durin g each visit. 112

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TABLEIV-1 Table for Florida School Participants Preliminary Selection, October 29, 1991 Part 1. Age: Race IQ Year 1 Diagnosis Year 6 Diagnosis Sex Kid's ID Year 1, 6 FS255 12.83 White 72 312.21 312.90 313.81 312.23 312.90 303.9x 304.3x M 1 + 18.13 312.21 313.81 305.1x FS253 13.46 White 72 313.81 DISC Not Giv e n, None M 2+ 18.76 Listed FS234 12.29 White 91 312.21 300.30 300 .29 314.01312.21 313.81 303.9x M 1 17.60 313.81 300.22 312.23 312.90 301.13 FS267 11.74 White 78 DISC Not Given, 312.10 307.60 M 2-16.97 None Listed Part 2. Year1 Year6 Grade: Legal Year6 Year 1/ Placement Placemen t Year I Status Employment Year6 Kid's ID Year 6 Location FS255 School School 6 NA PT Stock boy Ruskin/ 1 + FT, DT Facil Regular Classes 11 K-Mart Ruskin I FS253 Schoo l Gradu a ted 7 NA 15/wk, Own Tampa/ I I 112 + FT, DT F acil 6 /7 /91 12 Lawn s e rvice Tampa II I FS234 S c hool S c hool 6 N A Not Employed Lithia/ 1 DEES Center DEE S Cente r 11 Had swnrner job Plant City FS2 67 School MH-4 NA Not Empl o yed Tampa/ 2SED DT-FT 7 Tampa Part 3. Year 6 Parents in Home Year Year 6 Note any problems or ( # People in the Home) Family Income Family Income unu s ual circumstances Kid's ID FS255 BioMo 2 0-25K SOK + (3) II FS2 53 Bio Mo & Bio Fa 15-20 K 2 5-35K II 2 + (4) FS23 4 BioMo 1520K 20-2 5 K May be diabet i c I ( 2 ) FS267 BioMo 10-ISK 2 025 K He i s an hemophiliac II 12(4) many physical problems II NOTE: FS234 became Case Study A:, F S25 3 became Case Study B Key: 1 +, 2 + I 2== NAC T S participant rated as suitab l e fo r th e case study(+ = successful in community, == not successful in community). FT = Full Tim e PT = Part Time SED == Seriously E motionally Disturbed, MH ==Mental Health Service DT ==Day Treatment, DEES C enter== DT Facility 113

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Two-thirds of the interviews were fully transcribed, and the rest were indexed so that the data could be extracted as needed. The last few interviews were not fully transcribed because they were used to confirm the data collected during the earlier visits and to check the validity of written descriptions with the participants. A preliminary case study report was completed and shared with the mothers. This preliminary report confirmed that 1) it was possible to answer the study questions from the collected data, and 2) that the participants agreed that the written descriptions were valid. Reading the preliminary report also gave the mothers a chance to correct details in the descriptions presented to them. This preliminary case study report was developed using my general knowledge of each case and handwritten notes taken during the interviews. Each case represents three stories as told by the NACTS data, the mother, and the son. The three stories are used in the case study report to develop a history of the family and the child from the three perspectives and to explore the family s interactions with support-givers. The first part of the case report is in Chapter V, providing data from the NACTS survey and comparing the two cases to the NACTS data. The family history and the child's involvement in the service systems are also visually demonstrated with the use ofmultiax.ial timelines in Chapter V. The rest of the case reports are located in Appendix 5 for Case A, and Appendix 6 for Case B. These qualitative descriptions are in the mother's and son s own words and describe their experiences with service systems. The reports also include a discussion of the mothers' understanding of why their sons were in special education and the young men's descriptions of what it was like to be a student in special education classes. This description provides a framework for further discussion and analysis of the individual cases and of cross-case comparisons. 114

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Analysis Analysis of the multiple-case study is based on Yin's concept of the logic of pattern matching. Pattern matching logic "compares an empirically based pattern with a predicted one (or with several alternative predictives)" (Yin 1994:1 06). The multiplecase study data provides the empirically based patterns. The theories or models used to develop the propositions provide the predicted patterns. In an explanatory analysis each case can be used to make a theoretical or literal replication across cases, thereby strengthening the argument that the patterns match or do not match. In addition, when using multiple cases, certain threats to validity of the analysis from a single case may addressed. For instance, confounding factors that may occur in one case but do not occur in another case may be identified and explained In the analysis, each case i s match ed" to each proposition. In the analysis of the propositions in the dissertation the case study provides the empirically based patterns from the family perspective. A variation of pattern matching is th e use of two or more rival theories which are then test e d using the case study data in an attempt to see which theory matche s or is better supported by the cases Yin explains this form for analysis: This analysis requires the de ve lopment of rival theoretical propositions, articulated in operational terms. The important characteristics of these rival explanations are that each in vo lve s a pattern of independent variables that is mutually exclusive: If one explanation is to be valid, the others cannot be. This means that the pre sence of certain independent variables (predicted by one explanation) precludes the presenc e of other ind epe ndent variables (predicted by a rival explanation). .. The concern of the case study analysis howe ve r, is with the overall pattern of results and the degree to which a pattern matches the predicted one (Yin 1994:108). The rival theories analyzed in the dis serta tion deal with parent involvement and 115

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the family-professional relationships in the quest to provide services to children with special needs. In addition, the anthropology of biomedicine model is used to explain why the parents perceive the outcomes of their children differently from the professionals, and how those differences may impact the children's service and outcomes. The parent and professional relationship theories are: 1) First Theory: Enabling and Empowering Families (Dunst Dunst, Trivette and Deal 1988) 2) Rival Theory: Family and Professional Partnerships (Gartner, Lipsky and Turnbull 1991; Turnbull and Turnbull 1990). Based on these two rival theories, and the anthropology of biomedicine model, three propositions have been developed and are analyzed using the multiple-case study data in Chapter VI. The propositions are: 1) Effective services function by "promoting the capabilitie s and competencie s of families to mobilize resources and perform parenting re s ponsibilities in ways that have empowerin g con s equence s (Dunst 1995 : 15) 2) Effective services function by allowing families to identifY their own needs and choo s e the extent to which they can or will participate in the services that satisfY the i r needs and preferences (Gartner Lipsky and Turnbull 1991). 3) T he perception of youth outcome s is defined by the domains of reference for the different groups (parents and professionals) (Kleinman 1980 1988) 116

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V. THE NATIONAL ADOLESCENT AND CHILD TREATMENT STtJDY AND THE MULTIPLE-CASE STUDY "That madness is both an intensely private experience and a profoundly social category concocted of social processes has for centuries fascinated scholars and pained afflicted individuals" (Estroff 1991:331 ). National Adolescent and Child Treatment Study (NACTS) The National Adolescent and Child Treatment Study (NACTS) was the first major research project conducted by the Florida Research and Training Center for Cruldren s Mental Health. NACTS was originally funded in 1984 for three waves of data collection (5 years), and it was re-funded in 1989 for several more waves of data collection, and two years of analysis and publication activities. NACTS was a national longitudinal survey of children and adolescents labeled as seriously emotionally disturbed (SED) by the school or mental health systems that were providing them service at the time of the study. The NACTS survey was in its ninth and final year of data collection in 1992 when the case study data were collected for my internship and dissertation project required by the Ph.D. Program in the Department of Anthropology, University of South Florida. Two of the original participant families in the NACTS survey took part in the multiple-case study In this Chapter the NACTS survey is described, the survey findings are discussed, and the t\vo case study families' characteristics are compared to the survey findings. 117

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The purpose of the NACTS survey was "to describe the characteristics, functional levels, receipt of services, and outcomes among a large, six-sample of children and adolescents with serious emotional problems" (Silver et al. 1990:1 ). N ACTS was developed in response to the national research priorities of CASSP. As discussed earlier, even in the 1980's little was known about the exact characteristics of children labeled SED, such as the age of onset, treatment status, type of services provided, unmet needs and other related questions. Further, the label seriously emotionally disturbed (SED) was an ambiguous tenn, and each state had its own definition and protocol for deciding which children should receive services NACTS was designed to answer some very basic questions about children and adolescents with SED for the purpose of helping design policy and create effective services. Originall y, data for the survey were to be collected in four s tates : Colorado, Wisconsi11o New Jersey and Mississippi. Two other state s were added, Alabama and Florida, when only a small number of children were identified as SED in Mississippi These states were selected to be geogr aphicall y distributed have cooperative special education and mental health authorities, and varied level s of mental health services for children and adolescents Children and adolescents were se lected for participation if they were being served b y public schools (s ites = 94) or public mental health services (sites= 27), and were labeled as SED under P.L. 94-142 for the schools or were recei ving s tate funded residential services, and their parent or guardian and the child agreed to participate (Greenbaum et al. 1996:131 ) Interviews were completed with a total of 812 children and adolescent s during Wave 1 data collection (1985-86) The sample was drawn relatively equally from two 118

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types of sites, with 4 7% of young participants coming from residential sites, and 53% from school sites (Silver et al. 1992:47-48) (Table V-1). Parents and guardians (N = 740) were later interviewed by telephone, teachers, or staff members (N = 724) who knew the children filled out a written questionnaire, and semi-structured case record reviews (N = 785) were completed (Silver et al. 1992:48). The survey was designed to follow three cohorts over the nine-year period ; the original groups were: 9-11, 12-14 and 15-17 years of age (Table V-1). The members of the oldest group were transitioning into young adulthood (ages 19-21) by the fourth year of the survey. Data collection protocols were designed so that Wave 1 (1985-86), Wave 4 (1988) and Wave 7 (1991-92) were the most intensive, Vvith data collectors in the field interviewing the participants face-to-face. Wave 2 ( 1986), Wave 3 (1987), Wave 5 ( 1989) and Wave 6 (1990) included mostly telephone contacts with the youths and families (Silver et al. 1990:8). Retention of subjects remained high throughout the study with a 77% retention rate in Wave 7 (Greenbaum et al.l996: 132). NACTS researchers reported that "no differences were found between dropouts and participants on measures of psychopathology, adaptive skills, and intellectual function" (Greer, Lardieri and Greenbaum 1991 :282). During the years of intensive data collection (Waves 1, 4 and 7), data were collected on demographic characteristics of the child and family, the family's functioning, the child's history of problems and services, the child's intellectual and academic achievement, the child's social and adaptive behavior the child's self perceived problems, the child's outcomes, and DSM III diagnosis and problem behaviors (for detailed information on the measures see Greenbawn et al. 1996; Silver et al. 1992). 119

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The National Adolescent and Treatment Study-Survey Findings Findings and analyses on the NACTS survey have been published since 1991. There have been eight theses and dissertations written on the NACTS survey data. In addition to the published reports, there have been numerous unpublished conference papers and poster presentations at national conferences such as the Florida Research and Training Center Annual Research Conference, the American Psychological Association's annual meeting, the American Educational Research Association's annual meeting, the annual Conference on State Mental Health Agency Services Research and Program Evaluation, and the annual Virginia Beach Conference. Currently there is a master's thesis being written on an analysis of the final year of data collection by Lisa Colpe at the University of South Florida, College ofPublic Health. Paul E. Greenbaum, Ph.D., the current Director of NACTS reported to me that data analysis continues and there are plans to report and publish further findings from the NACTS survey (Greenbaum 1999 personal communication). An examination of the NACTS findings, reported in published articles, theses, dissertations, paper s available in the proceedings of the Florida Research and Training Center Annual Research Conference : A System of Care for Children's Mental Health, and several early unpublished reports shows that data analyses have been concentrated in specific areas; mostly driven by the original NACTS goals and continuing interests of the NACTS researchers and students. According to Dr. Greenbaum the published articles, theses, and dissertations report on the most important findings and are often final drafts of earlier presentations (Greenbaum 1999 per s onal communication). The NACTS survey research falls into the following categories and are discussed next: 120

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1. Descriptive Characteristics of the NACTS Participants 2. Service Utilization 3. Psychological and Adaptive Functions 4. Social, Community and Family Functioning 5. Outcome Measures 6. Substance Abuse Descriptive Characteristics of the NACTS Participants Table V -1 shows some of the basic descriptive characteri sties of the NACTS sample during Wave 1. The original NACTS participant sample was predominately male (75%), white (70.9%) and had a family structure with two parents in the home (54.1%). Many ofthe children and adolescents had family histories with a variety of problems including emotional or behavioral problems, alcohol or drug abuse, and police involvement. The Slosson Intelligence Test was administered to the children during Wave 1 interviews (Siosson 1983). The mean 1Q score for the total sample \Vas 85. 78, with a standard deviation of 17.07 (Greenbaum et al 1996: 136) No differences in mean scores \vere found for the school and residential placements. Analysis found that "about 51% of the sample scored within one standard deviation of the mean in intelligence, \Vhile 30% had scores bet\veen one and two standard devtations below the mean (70 to 85 ). Fourteen percent had scores two or more standard deviations below the mean' (Silver et a1 1992:51 ). Academic achievement was also low during V/ave I with participants' reading and math scores below their grade levels (73% and 93.6% respectively). Academic problems were more serious in the older cohorts (age 13 and above) (Silver et al. 1992:51 -52). Academic achievement, family s tructure and family problems were all topics explored during the following years of the NACTS data collection and analysis. 121

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i TABLE V-1 National Adolesce nt and Child Treatment Study Summary of Wave I (1985-1986) Participant Characteristics Wave 1 Participant Characteristics Number Subjects Interviewed School Subjects 430 Residential Subjects I 382 Total Number 812 Gender I I Male 609 Female 203 Total Number 812 Age in Years by Cohort Grou.Qs 8 to 11 198 (M 10.6, SD .89) 12 to 14 323 (M 13. 6, SD .80) 15 to 18 291 (M 16.37, SD .84) Total Number I I 812 Ethnicity African-American 175 Hispanic 38 White I 576 Other (e. g Native Am., 23 Asian Am.) i Total Number 812 F amily Structure Two Parent Homes 400 (i.e biological adoptive & step) One Parent Homes 250 Homes with no Parent 90 (i e., other relati ves, professional staff) Total Number 740 Family Historv, Problems Noted in Either Parent E motional/Behavioral Problems 189 Police Involvement 133 Alcohol/Drug Abuse 216 Any of the Above Problem s 328 Total Number 740 122 % 53.0 47.0 I 75.0 25.0 24.4 39 8 35.8 21.6 4.7 70.9 2.8 54.1 I 33.8 12.2 I l l 25.5 I 18.0 t 29.3 44.3 I i

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TABLE V-1 ( Conti n ued) Wave 1 Participant Characteristics Number % ParticiQants Reading and Math Grade Level Reading Below 558 73 0 At or Above 206 27. 0 Total Number 764 Math Below 589 93 6 At or Above 39 6.4 I Total Number 629 IO Score M 85 .78 SD 17 .07 Range 25-142 Total Number 783 Wave 1: Greenbaum et al. S1lver et al. 1992 Servi c e Utilization One of the major purposes of the NACTS survey was to examine the service histories of the children and adolescents with serious emotiona l disturbances Service histories were collected originally during Wave I from the parents and guardians Included in the NACTS questionnaire were questions on age of onset for emotional and behavioral problems first service, and past service history. As the longitudinal study continued, services received by the child or adolescent and famil y were collected Mean age of onset for emotional and behavioral problems was 6 years, 3 months (SD 3.77) for the total sample (Table V-2) (Silver et al. 1992:49) Mean age of the first service received by the child or adolescent was 7 years 7 months (SD 3 .64) (Brown 1994 ). Boys were found to be significantly younger both at the onset of problems and when they received their first services Girls received residential services at a much older age than girls who received school services (M = 9 years, 9 months and 7 years 8 123

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months, respectively) (Silver et al. 1992:50). Boys did not have this difference in age for the type of service received. Past history collected during Wave 1 showed that children who were currently (1985-86) in residential placements received significantly more services than those placed in schools. Added services in the residential placements included psychotropic medications, child welfare contacts, foster home placements, and special education placements (Silver et al. 1992:50). Initial analysis of the differences betv.;een children in residential treatment during Wave 1 and those in school placements indicated significant differences in family structure, behavior, and other characteristics. Children and adolescents in the residential placements comparatively "had fewer intact families, poorer social-adaptive behavior and greater maladaptive behavior; higher prevalence of serious conduct disorder, anxiety and attentional deficit disorder" (Silver 1989:260). As the longitudinal survey continued service utilization data was collected. The five most commonly utilized service systems by the NACTS participants, including mental health and schools, are listed in Table V-2. Analysis found that almost all of the children and adolescents received a variety of services during the 7-year period ofNACTS" (Greenbaum et al. 1996: 138). Most utilized two or more service systems and initial placement dictated subsequent services. For instance, "children who initially were in the special education programs had higher utilization rates [of special education] than those initially in mental health residential facilities" (Greenbaum et al. 1996: 139). In addition it was found that younger children received more services and males had higher rates of special education services than females (Greenbaum et al. 1996: 139). 124

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TABLE V-2 National Adolescent and Chjld Treatment Study Summary of Service Utilization Mean Age of Onset for Emotional or Behavioral Problems-Wave 1 Males j Females l l Total Number I Mean Age First Received Help--Wave 1 t i Males Females Total Number i Utilization of the Five Service Svstems by NACTS Participants-Waves 1 thru 7 li Utilization of 4 Systems Utilization of 3 Systems Utilization of 2 Systems U tilization of 1 System Mos t Commonlv Utilized Service Svstems bv NACTS Participants-Waves 1 thru 7 Mean 5 years, 1 0 months 7 years, 1 month 6 years, 3 months (SD 3 77) 7 years, 3 months 8 years, 1 l months 7 years, 7 months (SD 3 64) 36.8 39.7 14.9 5.8 % Mental Health 93.1 Juvenile Justice 80.0 School-Based Special E ducation I 70.9 Child Welfare 68.9 Vocational Rehabilitation 1 l .6 Wave 1 : Greenbaum et al. 1996; Silver et aL 199 2 Wave 7: Brov .. 'Il 1994 Utilization of re s idential care and reinstitutionalization was examined using the NACTS survey data Margaret M. Reiser, in her dissertation titled The D e terminants of Utilization of Residential Care by Children and Adolescents with Severe Emo tional Disturbanc e (1993), examined residential placement deci s ions. Reiser -writes that her goal "was to understand why some severe emotionally disturbed (SED) children are treated in re s idential sett in gs while others are treated in the community' ( 1993: 188). She 1 2 5

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examined the influence of characteristics associated with the child, family and service systems on placement decisions. System factors, such as the referring person, were found to be the strongest determinants of placement in residential treatment. Another NACTS study showed that reinstitutionalization in residential settings was greatest immediately after discharge, and that internalizing behaviors were also predictive of residential readmissions (Brown and Greenbaum 1994 ). Psychological and Adaptive Functioning Psychological and adaptive functioning have been examined throughout the NACTS survey. Table V-3 shows the occurrence of the most common diagnoses for the children and adolescents and the change over time for these disorders. During Wave 1, 66.9 % of the children received the diagnosis of conduct disorder (Silver et a!. 1992). In Wave 7 anxiety (26.9 %) and depre ss ive disorders (2 2.9 %) were the most common diagnoses (Brown, unpubli s hed data). Over the s even years of the s tudy 41.0 % of the participant s had two or more disorder s diagnosed (Greenbaum et al. 1996 : 135). Psychological and especially adaptive, functioning were areas that had not been extensively studied prior to NACTS for children with serious emotional disorders especially the changes that occur over time. Adaptive functioning "included social skills, assertiveness social deficits, social competence, social adjustment, and social adaptation (Kutash, Prange and Brown 1989 :33 4). It is considered to be a strengthbased function and "considers po s itiv e and effective interpersonal behavior" (Greenbaum et al. 1996: 134 ). Psychological functioning, on the other hand, "considers a child's emotional and behavioral problems and generally focuses on deviated behavior or dysfunctional symptoms" (Greenbaum et al. 1996: 134) The DISC-C, the Kaplan Self1 26

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Derogation Scale (Kaplan and Pokorny 1969), and the FACES III (Family Adaptability and Cohesion Evaluation Scales) to measure family functioning (Olson Portner and Lavee 1985), were used to measure adaptive functioning. TABLE V-3 National Adolescent and Child Treatment Study Summary of Wave I and Wave 7 Diagnoses Participant Characteristics % Comparison ofDiagnoses Wave 1 and Wave 1 Wave? (1985-86) Attention Deficits Conduct Disorders Depressive Disorders Anxiety Disorders Schizophrenic Disorders Wave 1: Greenbaum et al. 1996 ; Stiver et al. 1992 Wav e 7 : Brown 1994 DISC 11.7 66.9 18.5 41.0 4.7 % Wave7 (1991-92) DIS NA NA 22.8 26.9 2.1 The NACTS data h as been used to examine change s in adaptive behavior over time in the population of children and ado lescents with SED. T his research has shown that the younger cohort was closest in adaptive skills to their normal peer group. However, adaptive functioning dropped well below normal over the seven year s of data collection during the survey. The older cohorts showed con s iderable deficits in adapti v e behaviors beginning durin g Wave 1, and they ne ver performed at a level commensurate with their peers" (HogueArmstrong et al. 1994:9 6). Gender, clinical status and initial placement did not s i gnificantly make a difference in thi s pattern. Psychological functionin g was also a major concern for the NACT S study. In 1991, the persistence of conduct disorder was examined in the NACTS sample. Conduct di s order is believed to affect "at least 5% of youth in the general population and is of 1 2 7 I

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major concern in the study of youth with SED (Prange et al. 1991:285). In the NACTS sample it was found that both mild/moderate conduct disorders and severe levels were very persistent over time (79. 8% and 44. 9%, respectively) (Prange et al. 1991:290 ). Prange et al. also report that "at an item level, there was considerable stability for both aggressive and non aggressive items, but not items reflecting the socialization domain" (Prange et al. 1991 :290). For adolescents with mild/moderate conduct disorder, over 50% moved to a milder state of the disorder over a three-year period. However, this positive trend was not found for the group with severe problems (Prange et al. 1991:290). In a later study (Greenbaum at al.l996), both psychological and adaptive functioning were examined using a new analysis called "growth curve analysis". In this approach "all subjects were examined both individually and in year age cohorts" which makes it possible to study individual characteristic s or treatment differences that may impact the rate ofbehavior change (Bogue-Armstrong et al. 1994:84). Using data from Waves 1 4 and 6 on the Vineland Adaptive Behavior ScalesV ABS (Sparrow et al. 1984 ), it was confirmed that younger children had the greatest decline in adaptive behaviors over time (Greenbaum et al. 1996:137-138). Thi s analysis indicated that minority children's normative scores declined more rapidly (in fact almost twice as fast) than did those of their white peers" (Greenbaum et al. 1996 : 138) The authors concluded that the decline in adaptive skills for the children in the NACTS survey was due to an inability to acquire new adaptive skills more than a net loss of skills This inability to gain adaptive skills is a parallel phenomenon to the falling levels of educational achievement seen in the older children and adolescents 128

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Growth curve analysis was also used to examine psychological functioning throughout the study using data from the Child Behavior Checklist CBCL (Achenbach 1991). This new analysis showed that children and adolescents in mental health facilities had "significantly more problem behaviors" than children and adolescents in community special education (Greenbaum et al. 1996:136). When examined over time the data showed that there was an overall improvement in psychological functioning for the total sample, with particularly large improvement shown in the older cohort and the greatest improvement for minority females. Social, Community and Family Functioning Social, commllllity, and family functioning have received the greatest attention from graduate students performing a variety of secondary analyses of the NACTS data. Work in this area has also taken place by the NACTS researchers. In 1992, an article was published that examined the NACTS subjects and family functioning (Prange et al. 1992). The authors primary purpose was to examine two dimensions of family functioning (i.e., adaptability and cohesion) among families with adolescents diagnosed as SED. They had a secondary purpose to examine the relationship between these family functional dimensions and adolescent psychopathology. The Family Adaptability and Cohesion Evaluation Scale-FACES III (Olson, Portner and La vee 1985) was used to examine family functioning The FACES III was administered to the adolescent and one family member, usually the biological mother. A total of 353 dyads (child and parent) in the NACTS sample were studied. Family systems theory used in the study postulated "a curvilinear relationship with the psychological health of family members such that extremes in either parameter 129

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characterize dysfunctional family systems" (Prange et al. 1992:84). The first dimension cohesion, "has been theorized to reflect the extent to which family members are connected and involved with one another" (Prange et al. 1992:84 ). High cohesion is understood as over identification with family members and low cohesion is seen as promoting limited intimacy among family members. Adaptability is defined as "the family's capability to alter its power structure based on developmental changes within the family and demands of social institutions that impact the family" (Prange et al. 1992:84). Lack of social rules, inconsistency in discipline and erratic leadership characterize very high adaptability, which is contrasted to low adaptability when the family rules are very rigid and discipline is authoritarian. The study found significant differences in the NACTS sample compared to normati v e non-clinical families. For instance, the families in the NACTS study r eported low cohesion with family r elationship s al s o low in emotional support. The adolescent s viewed their families 'as disengaged or les s cohesive than their parent s (Prange et al. 1992 : 99 ) Their parents in contrast report high adaptability with le s s control and s tructure in the family Two important finding s came out of thi s study. Fir s t the families in the NACTS study have more di scordant family relation s when compared to normati v e samples. Thi s lends credence to fami l y systems approaches that emphasize the efficacy of including parent participation in the treatment of children with SED. Famil y relations and problem s must be addressed when treating the child. Second, the authors reported low levels of agreement on the dimensions of cohe s ion and adaptability between adolescent s and parent s, which may be an artifact o f the family members questioned and the structure 130

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of the instrument. The authors nevertheless conclude that, "global assessments of family functioning still have merit because they distinguished between clinical and non-clinical families and were found to significantly relate to adolescent problem behaviors" (Prange et al. 1992:100). Family functioning and its relation to the children's risks for mental illness was examined in Kim Peters Deffebach's dissertation, The Relation BeMeen Family Functioning, Residential Treatment, and Child Psychopathology (1998). Deffebach's purpose was to examine "whether family functioning moderates the effects of residential treatment on child psychopathology" (1998 :49). The FACES III was used in this study which is based on data from 345 subject families. The author concluded, "change in family functioning is related to change in children's psychopathology, whereas re si dential treatment is not" (Deffebach 1998:73). The important implication of this study is that there must be more focu s in the treatment of children with SED on their family situation and functioning. The entire family rather than just treatment of the child 's psychopathology must be con s idered by service sys tems. In addition the study showed that treatment in a residential facility removed from the family did not improve the child's psychological functioning, which brings into question the efficacy of residential systems and the need for further study of community and family services. Another dissertation, with the primary goal of increasing knowledge about adopted children with SED, also examined the functioning of adoptive families. Stephanie Willis Hoyt's dissertation, titled A Study of Adopted C hildren with Serious Emotional Disturbances (1997), examined a variety of adoptive, psychological, academic and family functioning variables over the seven years of the NACTS data 1 3 1

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collection. The subjects were participants who were adopted (N =50), foster children (N = 37) and children still living with or in custody of their biological parents (N = 257). Hoyt reported that in general, the results suggested that adopted children with SED are much more similar than dissimilar to biological and foster care children with SED. She also found this to be true when examined over time. Children and youth with serious emotional disturbances often lack age appropriate social skills, which impact their family relationships schoolwork, and peer interpersonal relations. The NACTS database has been used to explore these issues with a number of secondary analyses. In 1994, in her dissertation, The Influence of Risk and Protection Factors on the Social Skills of Youth with Emotional Disturbances, LyiUl Foster-Johnson examined youth and family risk factors and positive-protective factors that impact on the adolescent's social skills. Foster-Johnson used a subset of the NACTS participants (N = 172), ages 11 to 20 (M = 15.42) from both residential and educational settings. A variety of instruments were used to measure famil y functioning (FACES III); youth social skills (Social Skills Rating System-SSRS) (Gresham and Elliot 1990); youth intelligence (Slosson Intelligence Test-SIT) (Slosson 1984 ) ; Rosenburg Self Esteem Scale (Rosenberg 1989), to examine the youth's level of self esteem; academic achievement (Wide Range Achievement Test-Reading and Math) (Jastak and Wilkinson 1984 ); and the NACTS Parent Interview which questioned about the services received, family demographics and family living arrangements and income. The author found risk factors associated with poor youth social skills, including, 1) "families reporting lower levels of adaptability", 2) females with SED, and 3) younger ages (Foster-Johnson 1994:155). A combination of the individual risk factors did not appear 132

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to be cumulative for worsening social skills. Protective factors for increased social skills were found to be youth intelligence, high self-esteem and academic achievement, although the results were not clear cut. For instance for youths receiving services in public schools, intelligence seemed to protect them from the potentially harmful effects of minority status" (Foster-Johnson 1994:161). Intelligence also seems to be protective from the negative effects of single parenting", and "multiple family problems" (FosterJohnson 1994: 162). In contrast, high intelligence in youths in "the residential center had lower social skills than their low intelligence colleagues, regardless of levels of risk" (Foster-Johnson 1994:164). This study was limited by a small sample size, and variables that are difficult to operationalize, requiring the need for further research in this area. Social adaptive behaviors and their impact on adult outcomes were examined by Kathleen Hague-Annstrong in her E d .S. thesis in 1994 and in h e r dissertation in 1996 The purpose of the the sis was "to describe the changes ov e r time in adaptive behavior functionin g in relationship to behavior problem s and other r e lat e d selected factors" (i e. a ge, gend e r initial placement) (Hague-Armstrong 1994 : 10). The Vineland Adapti v e Behavior Scale V ABS wa s used to m e a s ure adaptive behavior which i s defined as the performance of the daily activitie s required for personal and s ocial sufficienc y (Sparro w and Cicchetti 1987). A total of26 7 NACTS subject s we r e u s ed for the study. Analy sis found that adaptive behavior functionin g of this sample was at risk in compari son to the normal peer group" (Hague-Armstrong 1994 : 95) The study als o found that adaptive behavior declined most among the youn g e s t cohort o v er time In h e r 1996 di s sertation Hague-Armstrong again e x amined social-adaptive behaviors and thei r crit i cal link to adult outcomes. Growth curve anal y sis was u sed to 1...,..., .).)

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study the data on 392 participants, with the purpose of examining changes from adolescence to young adulthood, "social-adaptive skills, arithmetic achievement, and behavior problems" (Hague-Armstrong 1996: 10). These factors and their outcomes "were chosen because they reflected the ability to perform major adult tasks in the home, community and at work" (Hague-Armstrong 1996:10). Index scores were used to measure the outcomes of five domains of social adaptive achievement: 1) educational achievement, 2) employment, 3) residential status, 4) social supports, and 5) satisfaction with accomplishments. The study again showed that the NACTS participants began with low social adaptive skills that generally declined over time. In addition, it was found that change in social-adaptive behavior "was a strong predictor of adult outcomes" (Hague Armstrong 1996:93). Poor and declining social-adaptive behavior indicated poor adult outcomes Hague-Armstrong suggests that interventions that support the acquisition of social adaptive skills be designed and used with children and youths diagnosed with SED. One other study, done by Lisa Pennington as her Ed.S. thesis, dealt with community functioning using secondary analysi s of the NACTS data to examine employment. This study The Characteristics of Young Adults with Serious Emotional Disorders Who Have Achieved the Positive Outcome of Employment ( 1997), was a correlational investigation with the purpose of identifying the characteristics of young adults in the NACTS survey who were employed and the best predictors for successful employment. The study used data from 311 participants who were 18 years of age or older and were not attending school. Pennington reports that the study results suggested that the primary characteristics for successful employment were adaptive functioning 134

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specifically daily living and socialization skills" ( 1997:93 ). She writes that "it appears as though those with more accomplished living and socialization skills, those with higher math achievement levels, older youth and non-minorities showed a higher probability of being employed" (Pennington 1997:93). Outcome Measures One purpose of the NACTS was to examine the outcomes of children and adolescents in the survey. There were two specific outcomes measured by the study: 1) educational attainment and 2) law enforcement contacts. The purpose for examining outcomes with these two variables was to provide a more comprehensive understanding of the challenges faced by children and adolescents with serious emotional disturbances, to begin to develop predictive variables for needed services and emotional problems, and to begin the examination of risk factors for emotional disturbanc es. Academic attainment was collected during Wave s 1, 4, and 7 using the Slo ss on Oral Reading Test (Slosson 1983) and the Wide Ran g e Achievement Test for readin g and arithmetic (Jastak and Wilkinson 1984) Init ial academic achievement a s ses s ments s howed that 58 8% of the children had a reading level below grade and 93 6% had below grade math scores (Greenbaum et al. 1996 : 135) ( T a ble V-1). Wave 1 s core s showed that older youngster s had more serious reading and math deficits than younger children Academic achi e vement deficits continued throughout the course of the study. In the sample o f participant s age 18 or older with IQ scores equal to or greater than 70, 75.4% were below reading grade level and 96.9 % were below their math grade level s (Greenbaum et al. 1996 : 144). As a result of the poor academic achievement, 40.4% of the older "group did not ha v e a high school diploma or aGED, and were not currently 135

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enrolled in school" (Greenbaum et al. 1996:144). The other, approximately 60% of this older group were either still in school or had received their high school diploma or a GED. The youths with lower academic achievement were more likely to have other risk factors such as more contact with correctional settings or other special service programs. "Contacts with law enforcement was the second outcome factor examined with the NACTS survey data. Correctional placements were followed from Wave 2 through Wave 7. Analyses of parent and child reported data found that the "most law violations were property-related crimes (parent reports: 47.8% ; child reports: 62.3%), followed by crimes against persons" (parent reports: 30.5%; child reports: 38.3%) (Greenbaum et al. 1996:141 ). Table V-4 shows the breakdown of placements for the juvenile offenders in the NACTS survey. Placements in probation or cornrnunity control and short-term stays in jails or detention center s were the placem e nt s most often utilized for the NACTS sample Overall i t was found "that duration and frequency of incarcerations were significantly greater for male s and older children" and other high ris k facto r s included h i gher levels of externalized behavior "family history of contact with the police", minority child and y outh, low e ducational attainment, and initial mental health placement (Brown and Greenbaum 1995; Greenbaum et al. 1996 : 141-142). TABLE V-4 National Adolescent and Child Treatment Study Overall Juvenile Offender Placement s Juvenile Offender Placements % Probation or Community Control 47. 6 Short Term Stay s Detent i on C enter / Jail 50.8 Long Term Stay s Training School 12.1 Jails 9 8 Halfway Hous e s 8.9 Prison 6 9 1 36

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The question of predictive characteristics of individuals with severe emotional disabilities and placement in correctional facilities was examined by Carol L. Todd, in her 1994 dissertation, Involvement of Adolescents with Severe Emotional Disabilities In Correctional Placements: A Multivariate Approach. Todd did not find any emotional indicators, such as behavioral scores or age of onset, that were predictive of correctional placement duration. The major conclusions of her study were that, males, and more specifically males with a past correctional placement, and whose fathers had emotional/behavioral and/or problems with the police, alcohol or drugs were more likely to have correctional placements and are those who are in most need of preventative programs (Todd 1994: 11 7). The implications of the outcome research into educational attainment and law enforcement contacts include the need for integrative prevention and intervention elements in the programs developed for children at risk for emotional disturbances. In addition, there is a high degree of "interrelatedness of the problems and their persistence overtime", . "underscoring the need for comprehensive and integrated services that must be provided for an extended period of time" (Greenbaum et al. 1996: 145) Substance Abuse Analysis of the NACTS survey data has also added to the understanding of the use of alcohol and other drugs amongst youths with serious emotional disturbances. Previously there had been little research on substance abuse/dependence prevalence" or the role of alcohol expectancies in populations of children and adolescents with SED (Greenbaum et al.1991:575; Greenbaum, Brown and Friedman 1995). The Diagnostic Interview Schedule for Children (DISC-C), and the Diagnostic Interview Schedule for adults (used for older teens and young adults) was administered to the children and adolescents in Waves 1, 4 and 7 to collect data on alcohol and drug abuse (Costello et al. 137

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1984). In an initial study, Greenbaum, Prange, Friedman and Silver examined : "1) the prevalence ofDSM III Substance Disorders (i.e., alcohol and marijuana abuse/dependence), and 2) substance use comorbidity with DSM III Axis I disorders (i.e., conduct disorder, anxiety, depression, attention deficit, and schizophrenia)" (1991: 576). They found a relatively high prevalence rate of substance abuse disorders co occurring with other psychiatric disorders (Greenbaum, Prange, Friedman and Silver 1991 ). This finding was consistent with other reported studies of adolescents' substance use and psychiatric disorders. Patterns of substance-use comorbidity were also identified during the NACTS survey analysis. These patterns showed: 1) few adolescents in the NACTS sample with serious emotional disturbances have substance use problems in isolation from other psychiatric disorders, 2) only conduct disorder and depression show significant comorbid patterns associated with substance abuse, 3) substance use increases from adolescence to approximately age 20 and then declines, and 4) greater frequencies of comorbidity occur in youth placed in residential facilities (Greenbaum et al. 1991:580-581). The NACTS data have also been used to examine possible predictors and mediators of drinking behavior amongst adolescents with SED. Data from the DISC-C alcohol-expectancies were measured by an abbreviated version of the Alcohol Expectancy Questionnaire (AEQ-SF) (Rather 1990). NACTS researchers reported that among adolescents with conduct disorder, social and cognitive behaviors were significantly enhanced by alcohol expectancies. Although only partial mediators, these expectancies "also function as a common pathway by which some portion of the various risk factors come to exert influence on drinking consumption" (Greenbawn, Brown and 138

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Friedman 1995:331). They explain that "expectancies have been theorized to have causal status in drinking decisions" and 'represent 'ifthen relationships between drinking behavior and alcohol s effects (e.g., "If I have a few drinks, then I will feel more relaxed (Greenbaum, Brown, and Friedman 1995:265). These expectanc y processes for adolescents with SED are similar to samples of general populations. Further research is suggested to examine the prevalence of comorbidity, antecedents such as family history and onset patterns, and the future course and outcomes for adolescents with S E D (Greenbaum, Foster-Johnson, and Petrila 1996). NACTS research describes children and adolescents with serious emotional disturbances in great detail. It has shown that they are children, adolescents and young adults with complex personal, social, academic and family problems. Many start with severe academic and social deficits early in life that persist into to yollilg adulthood. Low academic achievement, comorbid psychiatric and substance abuse disorders, and failing social adaptive skills create a web of problems that require more than one type of service and early interventions from a variety of service systems. Service utilization research using data from the NACTS survey has shown that service to children with SED is a complex process that depends on a number of variables including age of onset, initial placement and service system factors. This research has shown that at least five different service systems are involved in the care of children and adolescents with SED. With the complex and multiple problems of these children and their families, service utilization most often involves more than two service systems and there is often little coordination among the systems. 139

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The children and adolescents in the NACTS study and their families also possess a number of strengths, and the NACTS research has shown that there can be improvements in psychological functioning and improved transitions to young adulthood. The NACTS research has shown that there are protective factors such as intelligence and strong family structures that are often protective and can help the young adult achieve a successful transition to employment with less psychopathology. Social adaptive skills seem to be very important to successful outcomes for the children and adolescents in the NACTS survey, and suggest that programs should incorporate support and development of social adaptive skills. The NACTS researchers have also been innovative in their use of analytic techniques like the growth curve analysis to study adaptive skills and psychological functiorung. The NACTS data has also been used to evaluate the Child Behavior Checklist CBCL (Achenbach 1991) These studies examined the factor structure and construct validity of the CBCL (Dedrick et al. 1997; Greenbaum and Dedrick 1998 ; Greenbaum et al. 1994 ). NACTS research has added to the understanding of what children and adolescents with SED look like, how family structure and functioning impact their outcomes, and it is beginning to help define some protective factors that help create more successful adult outcomes. Within this context I now turn to a description of the two case study families and how they compare to the NACTS findings. 140

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The Multiple-Case Study Three Stories in Each Case Study The two cases in the case study project are a combination of three stories : 1) the National Adolescent and Child Treatment Study (NACTS) survey data; 2) each young man's story of his experiences as a special education student; and 3) each mother s story of raising her son and finding and dealing with service providers. As described above, the selection of the participant families required that they agreed to participate in the case study interviews over a four-month period. The two families interviewed for the case study had participated in the NACTS survey since 1985. In 1992, when I met \vith the participants I administered the NACTS surve y instruments for the seventh and final survey wave to the young men and talked to them and their mothers about participation in the case study. All four participants were very willing to take part in the case stud y interviews and were most generous in sharing their time lives and stories. The sons' and mothers' stories are further described in the case reports (Appendix 5 and Appendix 6). The NACTS story of the case study participants is described in this chapter and comparisons are made to the survey data Each of the case study participants selected a pseudonym for me to use in the case study descriptions. These names are used here to protect their privacy. Except for changing their names and slightly changing the descriptions of how to find their homes, the descriptions in the case reports are accurate according to the mothers who reviewed an earlier version of the case reports. One piece of information upon the request of one of the participants is not used in the description However the information does not change the content of the case because it was not a pivotal issue to the main question of the family's interaction with service providers and care givers. 141

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Case A Dana Mae Dodd and her son Chuck live in Lithia, Florida, a rural area in east Hillsborough County. Dana Mae is Chuck's biological mother She was divorced from Chuck's biological father when Chuck was a baby. Dana Mae owns her own house, which will be paid off by the year 2000. They live within a block of her parents and an older son and daughter-in-law and their baby daughter. For the last thirteen years Dana Mae has worked on swing shift as a pit operator (a large rock moving machine operator) in one of the phosphate processing mines located in the eastern section of Hillsborough County. Her income was approximately $28 ,000 in 1992, and this included time and a half pay for overtime. Chuck was 19 years old in 1992. He was in 12th grade attending a full-time day treatment facility run by the Hillsborough County school system. The first service Chuck received was an emotionally handicapped resource room in 4th grade (Figure V -1 ). From January to April 1992 Chuck worked at a plant nursery receiving "on-the-job training and school credit from the day treatment facility. He was working on a regular high school diploma ; however, due to an accident earlier in the school year he may not have graduated at the end of the year because he missed too many school days. CaseB Beth Brennan and her son Calvin live in the urban Interbay Area of Tampa, Florida. Calvin was 20 years old when l interviewed him for the case study. Beth is married to Victor, her second husband, and they are Calvin's biological parents. Beth divorced her first husband after four years of marriage and has two daughters (both in their twenties in 1992) from that marriage. Victor adopted Beth's daughters, and he and 142

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Beth have two biological sons, Calvin and an older brother, both of whom lived with their parents in 1992. Victor also had two daughters from a previous marriage but had little contact with them. Only one of Beth's daughters lived in Tampa at the time of the interviews. Beth worked as a telephone solicitor for a local charity foundation for five years and had a variety of other jobs such as babysitting and phone operator during her second marriage. Victor worked for the last 22 years as a warehouse man for local furniture companies, and he had recently begun a rummage sale business out of their home. Their annual family income was approximately $27,000 in 1992. Beth and Victor expected to pay off their mortgage by 1994. Calvin graduated from high school with a Special High School Diploma in June 1991 (Figure 2). He first received help with reading in first grade and later attended day treatment facilities until graduation. Calvin worked as a janitor for a couple of local fast food restaurants since graduating although the jobs did not last long. He also mowed lawns and did odd jobs around the neighborhood for many years. The Story in the NACTS Data The purpose of the NACTS survey was to describe children with serious emotional disturbances and to describe their service outcomes. Over a nine-year span, the original 812 children aged, with the youngest in their late teens and the oldest in their mid-twenties by the end of the study. The young men in the case study were in the middle (ages 12 to 14) cohort of children wh e n NACTS data collection began in 1985. Chuck was 12 years old during Wave 1 and turned 19 during the case study interview 143

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period. Calvin was 13 years old during Wave 1 and turned 20 years old the month before we started the case study interviews. Table V5 shows a summary of the NACTS survey data and the comparative information for Chuck (Case A) and Calvin (Case B). They were in the subject group selected from public school systems, and were originally interviewed at the schools they were attending at the time of Wave 1 data collection. Later their mothers were interviewed over the telephone and their teachers were asked to complete a written questionnaire on the boys' behaviors for the first year of the survey The families were also contacted throughout the years andre-interviewed during Wave 4 in 1988. The NACTS survey data discussed in this section are from Wave 1 and Wave 7. Family and Home As previously discussed, because the purpose of the case study was to explore and describe family strategies for seeking and obtaining support for the children, participants still living with their parents were a necessary selection criteria for the case study project. All the participants considered for the case study were originally in the Hillsborough County public schools and lived with at least one parent. Calvin (Case B) lived with both his biological parents, which compared to 21.3% of the NACTS sample living with both biological parents (Silver et al 1992:48). Chuck (Case A) lived with his biological mother, which compared to 33.8% ofthe NACTS sample children (Silver et al 1992:48) Chuck s biological father left the family when he was two years old and his parents divorced the next year. His father has not been involved in Chuck s life since he was a small boy. The two case study families also matched the educational and income 144

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Table V-5 Multiple-Case Study Data and Comparative Data from the National Adolescent and Chi l d Treatment Study (NACTS) NACTS Survey Wavel:N=812 (1985-86) Wave 7: N = 606 ( 1991-92) 1 Mean Age of Onset of Emotional or Behavioral Problems for Boys: 5 years, I 0 months Mean Age Boys First R e ceived Services : 7 years 3 months 1 Percentage ofNACTS Subjects in I Public School -Day Treatment or Exceptional Centers I I Case A Mother: Dana Mae Dodd Son: Chuck Dodd (DOB 2-15-74) Location: Rural area in East Hillsborough County, Lithia, Florida Date: Jan. Apr. 1992 7 years old 8 years old Wave 1: 25.5% Wave I: Age: 12 In 6tb grade, Full-Time Day Treatment Facility Wave 7: 6.6% Wave 7: Age: 18/19 Wave 1: Family Structure In 12th grade, Full-T ime Day Treatment Facility 2 Bio Parent Home 21.3% Wave 1 and 7: I Bio Parent Home 40.4% Lived with Bio Mother l I Wave 1: IQ Score 1 I SD 17.07 Range 25-142 1 45 Case B I Mother: Beth Brennan I I Son: Calvin Brennan (DOB 12-17-72) I I Location: Urban area in the Interbay Area of Tampa, Florida l I Date: Jan Apr. 1992 I 5 years old I I 1 6 years old Wave 1: Age 13 In 8th grade Full-Time Day Treannent Facility Wave 7: Age 20 Not in school, graduated from High School prior summer with a Special HS Diploma I I Wave 1 and 7: Lived Vtitb Bio Mother and Bio I Father I I Wave 1 IQ: 72 I I I I

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Table V5 (Continued) NACTS Survey Case A Case B Diagnoses Wave 1 and Wave 7 Wl W7 Wave 1 Wave7 I Wave 1 Wave7 DISC DIS (DISC) (DIS) (DISC) (DIS) % % I Conduct Attention Deficits 11.7 NA Conduct None None Disorder Identified Disord e r Identified Conduct Disorders 66.9 NA (Oppositional (Oppositional Defiant Defiant Depressive Disorders 18.5 22 8 Disorder) Disorder) I Anxiety Disorders 41.0 26.9 Anxiety I Disorder Schizophrenic Dis. 4.7 2.1 I I Wave l: Percentage of Participants Below Grade Level in Reading and Math Wave 1 Wave7 Wave 1 Wave7 Grade: 6th 12th Grade: 7th HS Grad Reading Below Reading Grade Reading Grade I Grade Lev el 58 8 % Level : 8.4 9.0 Level: 4. 3 3.0 I Math Grade Math B e low M ath Grade I Grade L e vel: 9 3 .6% I Level: 4 .0 5.0 Level: 6.0 5 0 I i Brown 1 994 ; Greenbaum et al 1996; Sil v er et al. 1992 ; distributions of the NACTS sample. Chuck's mother had a high school diploma; however, Calvin s mother did not graduate from high school. In the NACTS sample, 42% of biological mothers had at least compl e ted high school (Silver et al1992: 49) The NACTS family median income was in the ran g e of$2,400 to $91 920 in 1991-92 (M = $ 2 4 840 ; SD $17,066) (Brown 1994). The case study families incomes were approximately $27 000 to $28,000 in 1992 which was clo s e to the NA CTS average income and somewhat lower than the approximate national median household income of $35 000 for the same period (Annie E. Casey Foundation 1996) Information about 146

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family problems was also collected in the NACTS survey, such as emotional problems, alcohol or drug abuse, and police involvement of the parents The only problem of this type mentioned by the case study participants was that Chuck's father had problems with alcohol prior to his parents' divorce in 1977. Onset of Problems, Diagnoses and First Services The mean age of onset for emotional or behavioral problems for males in NACTS study was 5 years, 10 months, according to the parents. According to his mother, Chuck (Case A) began to have problems around age 7 (Figure V-1), about a year later than the NACTS mean Dana Mae described him as becoming hateful, hypertense, and disobedient. Before that time she does not remember having problems with him. The Diagnostic Interview Schedule for Children (DISC-C) (Costello et al. 1984) was administered to the children during Wave I. The DISC-C showed Chuck as having conduct disorder (oppositional defiant disorder) and anxiety disorder. Chuck first received services from his elementary school when his teacher identified him as having behavioral problems at 8 years of age. She recommended that he attend an emotionally handicapped resource room one period a day which he did during 4th grade. Dana Mae also took Chuck to a local public health mental health center where he was evaluated by a psychiatrist and began outpatient counseling and received Ritalin for six months, also beginning at age eight. In the NACTS survey the mean age of receipt of first services for boys was 7 years and 3 months. Again Chuck was about a year later than this in receiving his first services. 147

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havio r ents roily rvtces lucation rvtces her rvtces Age: Bio Mother and Bio Father Divorced NOTE a School CO\U15eling b. School Evaluatiotl I OTE c MH Cent1u: Di.aylosis Testn1g & Ev.ili!Ation 2 3 4 5 I 6 Ina.tteniive, hyperleJUe r N etvous, frustrated, U'gUlltentatiV: ----0-ve-:rwe--igh-t-,-b-orde_r_l.ll_te_dial_h_e_te-s-, _s __ a b a I I 1 hom/day EH Resource Room I I c 7 8 9 a. b I I ----Motor Cycle Accident broken foot needed sking1afl operation HalfB1other moves to own home Counseling /Gmup Therapy Wa S\Ututter :obs & OIT NA ------------------. ---DEES Cente1 Full Titlte Special 1 Vocati:ma..l Education Day Treatment Facility I I . I I Medication c 10 11 12 13 14 1 5 16 17 18 19 Figure V -1. Case A: Multiaxial Timeline of Chuck Dodd s Behaviors and Services

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Calvin (Case B) was first identified as having problems at age five when he began kindergarten (Figure V-2). Beth reported that he had always been shy and small for his age, but she did not believe anything was wrong until school personnel identified Calvin as very shy and immature. They told her he was capable of learning but had emotional problems that interfered. Calvin's age of onset was somewhat earlier than the mean age of onset in the NACTS sample. The DISC-C administered during Wave I showed Calvin as having conduct disorder (oppositional defiant disorder). The diagnosis of conduct disorder was the most common diagnosis for the NACTS sample (66.9%). In addition, "among children with conduct disorders the prevalence of an additional co occurring disorder rose to 66.7%" (Greenbaum et a1.1996: 134). During Wave 7 the Diagnostic Interview Schedule for adults (DIS) (Roberts and Rhodes 1990) was administered to participants over 18 years of age At that point the DIS did not identify any diagnoses for Chuck or Calvin. Calvin (Case B) received his first service at age six, earlier than the survey mean He repeated first grade and was given one-on-one reading tutoring by a teacher's aide in a resource room beginning in first grade. He was also provided glasses in first grade and received psychiatric testing in third grade at a public mental health center. Service Paths Chuck's (Case A) service path began in fourth grade with 1 hour a day in the emotionally handicapped resource room at his elementary school, and at age 8 he started outpatient counseling and medication at a public mental health center. As Figure V-1 shows, after one year Chuck was moved during fifth grade to the Plant City DEES Center, a special education day treatment facility located about 12 miles from his home 149

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havior ents mily : rvtces iucation !fVlces ther :rvtces Age : I I Imrnatu:e, Shy I I I I I I NOTE a.. Mmved lawl!S & did odd jobs a.rowtd hu NOTE b. Worked in a. Packiug Plant packing large rolls of paper c. Janitor in 2 Fa.st Food R.estalll'ants d. School Counseling f. e Schoo l Eva.htation I I f. Speech Therapy 1 hr /da.y g Psychiatric Testing Res ouxce Room I I I f. I every I I NOTE h. MH Center: Diagnosis Testing & Eva.htation 2 3 4 I 5 I I I I h. 6 7 8 9 10 I I 11 Ern.otionilly Imrnatu:e Aggnssiw, "Growls" I I I I I I I Gr adua.ted frou1 HighSchool Wa.v-e 1 v NACTS N I e. ec uuc coo.I d d l g. -1-Voc. T alS h FullTi:me Special Full Time Spe c ial Ecb1ea.tion Da.y EcblCa.tion Day Treatment F acility Treatment facility . I I I I I h. h. 12 13 14 15 16 17 18 19 Figure V -2. Case B: Multiaxi8 Timeline of Calvin Brennan's Behaviors and Services

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in eastern Hillsborough CoWlty. When Chuck was interviewed for the NACTS Wave 7 he was in 12th grade and still at the DEES Center. Beginning in lOth grade he began to receive some vocational education that included his two summer jobs and the on-the-job training he received at the plant nursery. Also throughout his school years Chuck received evaluations by school psychologists and counseling through the DEES Center. The outpatient counseling Chuck began at age 8 continued until age 10 at the public mental health center. His mother did not receive any family services. However, when Chuck was in counseling the psychiatrist coached Dana Mae on how to discipline and handle his behaviors. The psychiatrist also gave her advice on how to discuss Chuck's problems with the school personnel. Calvin's (Case B) service path was in some ways similar to Chuck's. Calvin received readin g help in first and second grade and he received brief period s of speech ther a py in first and third grades He was also placed in summer s chool through most of his e l e mentary education because his reading and comprehen s ion level s were low. In order to place him in a DEES Center when he was 12 years old and had completed 5th grade, he was technicall y s kipped to the s e v enth grade and placed in the Ballast Point DEE S Center. Thi s is a DEES Center located on the grounds of a middle school in his Tampa neighborhood. He stayed at Ballast Point until lOth grade when he was transferred to Hill s borough County VocationaVTechnical School. He was there three weeks at the beginning of the school year but returned to Balla s t Po i nt because he was unable to read the required mate rial. During the 11th and 12th gr ades Calvin attended Hill s borough DE E S Center which was located on the grounds of Hillsborough Hi g h School in Tampa about 12 miles from hi s home. He received some minimal vocational 151

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training near the end of his school career. Periodically Calvin was evaluated at the public mental health center and through the schools and provided minimal counseling through the schools. His family did not receive any family services related to his problems. The DEES Centers were the most intensive service provided by the Hillsborough County School System for children with a variety of handicaps Some of the facilities like the Plant City DEES Center, were stand-alone facilities, and others were connected to middle and high schools and shared accommodations like the cafeteria. The Plant City DEES was a good example of these facilities and had a student population of75 to 80 students. It had seven classes for students with serious emotional disturbances or emotional disturbances, two classes for children with autism, and one class for children with co-occurring autism and emotional disturbances. The students' levels of functioning ranged from trainable mentally handicapped" to children like Chuck who could do high school level class work and functioned well in the community. Besides the special education teachers and aides, the Center had a physical education teacher, music teacher, home economics teacher agricultural teacher, art teacher, speech teacher and occupational therapist. The DEES Center staff used a behavioral management system prescribed by the school system. The management system utilized positive consequences including earning points to be cashed in for special treats, and negative con s equences starting with verbal warnings, short periods of quiet time in the classroom to the use of a "Quiet Room" separate from the classroom. Calvin's and Chuck's service paths are typical of the children in NACTS who received services through the public schools For instance, at least four of the following 152

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five services were utilized by 36.8% of the total NACTS sample: 1) mental health services, 2) school-based special education services, 3) child welfare services, 4) juvenile justice services, and 5) vocational rehabilitation services (Greenbaum et al.1996: 138). Both Calvin and Chuck each utilized three of these types of services; however they never utilized juvenile justice or welfare services, which was much more typical of the school group. Initial placement along with other factors such as gender, age and family history, also made a difference in future utilization of services and subsequent problems. For instance, children with an initial placement in a residential facility were found to have a higher probability of future residential placements and juvenile and adult incarcerations than those children with initial school placements. Calvin and Chuck, who were in their late-teens and early twenties, also fit the NACTS profile concerning employment. The NACTS data showed that "only 60% of the 18to 22-year olds who were living in the community were working or looking for work (Greenbaum et al.1996:144). Although Calvin had held a number of unskilled jobs, he was also laid off' or quit after a short period oftime; his most cons istent job was working for neighbors mowing lawns. Chuck had not yet really entered the labor force having only held short-term jobs through a work-study program at school. Chuck and Calvin and their families fit the profile of the NACTS sample school group. Although the particular events and stories told by Beth Dana Mae, Calvin and Chuck are unique to their lives, the two young men represent the general category of children from the initial school placement group who lived with parents from the N ACTS sample. The case reports, expand on the information presented here see Appendix 5 (Case A) and Appendix 6 (Case B). The reports describe, through the 153

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mothers' perspectives and words, how they found services for their sons and interacted with the service providers, what they believed was wrong with their sons and how those beliefs did or did not agree with the schools' assessments, and finally what they see for the sons' futures. The young men's perspectives are presented on their school experiences, what they understood about their problems and the help they received, and what they see in their futures. Postscript Attempts were made to contact the case study families in early 2000. I was not able to locate the Dodds. Dana Mae and Chuck had moved from their home in Lithia and I was never able to find a new address for them. I located Victo r Brennan, Calv in s father, who still lived in their old house. Victor reported that he and Beth had divorced and that sh e and Calv i n were living in Tampa with her new husband. Victor s aid that Cal v in has continued to hold a number of minimum wage jobs and a s is his pattern, quits the job easily if anything bothers him and then look s for another job. His father said he had held any number of jobs in the last few years. Calvin had not received any more s ocial or educational services. Victor said he and Beth were friendly, that she did not have a telephone and he promised to pas s on a message to Beth asking her to call me I never heard from her. 154

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VI. ANALYSIS: THEORIES OFF AMIL Y AND PROFESSIONAL RELATIONSHIPS Why do so many professionals seem to see families at their worst? For one thing, they are likely to interact with families during periods of crisis, which precipitate in most people lowered defenses and patent manifestations of psychological distress (Lefley 1996:121 ). When a family is told their child has an emotional or behavioral disorder the family, as a unit, faces a crisis that requires action. The demand for action will come from within the family and from the professionals that provide the services needed by the child. No t only is the initial n ew s that their child h as a "disorder" or "is sick" distres s ing to the parent s and oth e r family member s but Vvith this news comes a whole range of expectations and requirements from agencies and se rvice providers. Research ha s s hown that family re s ponse to this unexpected news goes through nine "adaptive and maladaptive coping stra tegies" includin g : 1) Initial awareness of a problem without recognition of sym ptoms 2) Denial of mental illness 3) Labeling of the patient a s mentally ill 4) Faith in mental health professional s with expectations of quick cure 5) Recurrent cri ses-episodes of disturbed aggressive behavior or suicidal behavior s 6) Recognition of chronicity 7) Loss of faith in mental health professionals 8) Belief in the family's expertise 9) Worry about the future (Lefley 1996 : 115) The coping strategies are not necessarily a linear process for each family Eventually the family "learns to compartmentalize the illnes s so that it is perceived as one of many 155

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challenges rather than the central problem in the family's life ; and "the family rediscovers activities unrelated to the illness and takes up other interests and concerns (Lefley 1996:117). While the family is learning to cope with their child's illness as one part oflife, they deal with professionals who view ilie family from a very different perspective. The professionals' focus is on the child and his or her problems and needs. They may see the family as troublesome or pathogenic when the child's parents do not act or behave as expected. Yet, as Lefley explains, "there are often good reasons for these behaviors. In fact, they may constitute adaptive coping strategies that achieve desired objectives for the patient and family" (1996:121). Family involvement has been a developing trend ever since Public Law 94-142 ( E ducation for All Handicapped C hildren Act of 1975) and it s succe s sor, P.L. 102-119 (Individual s with Di s abilities Education Act of 1990), were established and family involvement in special education was mandated School sy stems were required to include the fam i ly in the d e velopment and review of their child's Individual Educational Plan (IEP). Familie s were expected to take on the role of advocate for their child with the school system. The family's role in advocating for their child and working with special education profe ssionals was further r einforced by the values and initiatives of the Child and Adolescent Service S y stem (CASSP) created in 1984. W ith the founding of the national family organizations, The Federation of Familie s for Children s Mental Health and the National Alliance for the Mentally Ill-C hild and Adolescent Network (NAMI-CAM) both in 1989, families became a stron g force for change "to improve services for childr e n with emotional behavioral or mental disorders ( Friesen and Osher 1 56

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1996:191). Today, not only is family involvement valued as necessary by special education systems, it is the law. Parents are seen as empowered in the process of educating their children with a serious emotional disturbance, and the schools are made accountable for assuring the children's rights are protected. Family involvement as it is usually practiced today is based on three expectations, they are: 1) "The policy expectation in public school programs are for parents to be active, albeit equal, decision makers in determining the nature of the child's education program (e.g., goals and objectives, placement, and related services" (Turnbull and Winton 1984:382). 2) "The policy expectation that parents will play a role as learners, and will participate in parent training when it is required when such training is needed to ensure that handicapped children will benefit from special education" (Turnbull and Winton 1984:382). Parent training is a secondary expectation that is not always emphasized. 3) There is also the expectation that the parents will continue the educational process at that is started at school. Parent involvement policies have evolved in such a way that parents are expected to "assume tremendous educational roles to make informed decisions about the precise development and implementation of their child s program, to increase their skills in order to teach their child" (Turnbull and Winton 1984:383). As family involvement became the concern of all special education programs, a number of approaches were developed. Two ofthese approaches are discussed in this chapter. The first, described as enabling and empowering families, was developed by Carl Dunst and colleagues (1988). The second was developed by Ann P. Turnbull and her associates and can be described as family and professional partnerships ( 1990). Although they both are based on a family systems approach their basic assumptions and strategies for parent involvement differ. These two models of parent involvement are 157

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treated as rival theories in this analysis and the multiple-case study data is used to examine how well the approaches fit the experiences of the two case study families. To perform the analysis two rival propositions were developed from the theoretical approaches. The propositions are: 1) First Theory Effective services function by "promoting the capabilities and competencies of families to mobilize resources and perform parenting responsibilities in ways that have empowering consequences" (Dunst 1995:15). 2) Rival Theory-Effective services function by allowing families to identify their own needs and choose the extent to which they can or will participate in the services that satisfy their needs and preferences (Gartner, Lipsky and Turnbull 1991 ). A third proposition is also concerned with the relationship between the parents and professionals. However, the focus shifts to the parent's and professional's perceptions and what they expect from the services as measured by the child's outcomes. The third and final propo s ition was d e veloped based on the anthropology of biomedicine model, it is: 3) The perception o f youth outcome s is defined by the domains of reference for the different groups (parents and professionals) (Kleinman 1980, 1988) This chapter begins with descriptions of the two rival theories, and the anthropology model, then for each proposition the underlying concepts are operationalized and analyzed using data from the two case studies Rival Theories of Family and Professional Relationships Enabling and Empowering Families This model most closely follows the expectati o ns of the existing family involvement policies and laws. It is based on an ecological perspective of families as envisioned by Hobb s (1982), and social systems theory. The basic premise of these 158

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theories "is that different social settings and their members are interdependent and that events and changes in one unit reverberate and produce changes in other social units" (Dunst, Trivette and Deal 1988:2). It is recognized that the parent and the professional have different roles to play, and that they occupy different positions in society such as client vs. professional, or lower vs. middle socioeconomic status. These roles can create opposing opinions about which services to provide and how they should be provided. In turn the opposing opinions can lead to difficulties in achieving a consensus between the family and professionals about the child's and family's needs and what course of action should be followed. This model seeks to prevent problems by empowering families. The goal of the family support model is: to prevent problems rather than correct them, to strengthen families' capacity to nurture children and function well for all members, to integrate fragmented services and make them acces s ible to families, and to encourage and enable families to solve their own problems (Dunst 1995:4). The aims of these family support or resource programs "are to enable and empower people by enhancing and promoting individual and family capabilities that support and strengthen family functioning (Dunst Trivette and Thompson 1990:22). The actions taken by the program professionals to fulfill these aims are thoroughly assessing the child's and family's needs, then helping the family become more competent at accessing resources and finally helping the empowered family mobilize needed services. The professionals take a proactive approach that focuses on the family's strengths and capabilities so that family functioning is supported and strengthened. The role of the professionals is to develop a partnership with the family, to view the family in a proactive positive frame of reference, and to work with the family 159

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members as equal capable partners. The professional avoids behavior that might promote learned-helplessness, indebtedness, or dependency by the family. The family also has a role to play in the enablement and empowerment model. This role: De-emphasizes help-seeker responsibility for causing problems and emphasizing help-seeker responsibility for acquisition of competencies necessary to solve problems, meet needs, realize personal projects, or otherwise attain goals. (Dunst, Trivette and Deal 1988:44 ). The term enablemenf' is an "underlying rationale of the model, namely, that the help giver creates opportunities for competencies to be acquired and displayed by the help seeker" (Dunst, Trivette and Deal1988:44). The help seeker is empowered through the program working from a proactive approach that assumes competence on behalf of the help seeker, creates "opportunities for competence to be displayed", and provides the help seeker, through his/her own actions, opportunities "to acquire a sense of control nece ssary to manage family affair s" (Dunst, Trivette and Deal 1988:4 ). The enablement and empowerment model requires extensive assessment of the family and its needs at the beginning of the process. The approach is seen as a dynamic and fluid process because families and their needs change over time. The principle of a ssess ment is to give the help giver a focused understanding of the family and what is important to the family. The areas assessed in this model are: 1) family aspirations and family projects (activities or areas of interest that are important to the family) 2) family strengths and capabilities 3) "map" the family's personal social network, and existing and JX>tential sources of help 4) identify family needs especially those that the family considers important enough to devote time and energy to family functioning style and ability to mobilize resomces 5) family sources of support and resources both formal and informal (Dunst, Trivette and Deal 1988) 160

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6) the professional must assess what type of help the family requires and determine his or her role in working with the family. Roles that can be taken by the professional include empathetic listener, teacher /therapist, consultant, resource enabler mobilizer, mediator, or advocate. The professional must be open to expanding the traditional role and provide that aid which the family perceives as likely to be beneficial. Dunst, Trivette and Deal write: We have increasingly come to realize that it is not simply the provision of support that promotes parent, family and child functioning, but the manner in which help is provided that has positive or negative consequences (1988:96). Family and Professional Partnerships The family and professional partnership model is also based on family systems theory This model recognizes the role of parents as family members, and the need to identify and address each member's needs. The family is seen as an interrelated group of individuals where one experience of a member will affect all the other members of the family. The child with the exceptionality should never be the only priority of the family. The family and its members are seen as the center of this model. There are four components in the family system framework : 1) Family characteristics include the family's socioeconomic cultural background size, makeup, special challenges (i.e., poverty, member with a health, mental health or other problem), and resources From this perspective, "resources can be thought of as input into the family interaction" (Turnbull and Turnbull 1990: 17). 2) Family interactions occur among the members on an ongoing basis. Family interactions are the process through which the individual members respond to family needs. 3) Family functions are associated with the family's needs and the way the family responds to fulfilling those needs. Family functions can be defined as purposes or outputs of family interactions. 4) Family life cycle is "the sequence of developmental and non-developmental changes that affect families" (Turnbull and Turnbull 1990: 17). As the family goes through its life cycle its characteristics and needs change and influence the family s interactions and functions. 161

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Turnbull and Turnbull write that the current perspective on parent involvement "means we want parents involved with us (the professionals). It means the services delivery system we helped create is at the center of the universe and families are revolving around it" (Turnbull and Turnbull 1990: 16). They argue against this perspective and write that the purpose of the family-professional relationship model of parent involvement "takes into account the diverse needs and perspectives of the parents" (Turnbull and Turnbull 1982:121 ). In their model: Family and professionals respect, trust, and communicate openly with one another, a partnership is formed. Both families and professionals have unique contributions to bring to such a partnership, which in turn, can be beneficial not only for the person with the disability but for families and professionals (Turnbull and Turnbull 1990:145). In order to fulfill this goal there must be open and positive communication, an understanding of each other s' pers pectives v alues and attitudes, no lay ing of blame, and a careful a s se s sment of the family structure, functions, interactions, and life cycle The parentprofe s sional partnership has several component s : 1) The two mo s t crucial factors in the parent-professional interaction are "communication and resp e ct" (Schultz 1978 : 3 2). Without effecti v e communication the school program can not be followed through at home and concern s at home can not be dealt with effectively by the school program. Constant interaction and communication must occur between the parents and teachers. 2) Allow a variety of involvement options. Not all parents can or choose to become involved with school programs. "If patients ha v e a right to refuse medical treatment parents of handicapped children should have the right to decline to be education decision maker s ( Turnbull and Turnbull 1982:121). Familie s of children with exceptionalities are greatly str e ssed and to be burdened with the re s pon s ibility of educational decision-makin g can be overwhelming Equilibrium can be restored within the family system, and at times the parent need not take the decision-makin g role. 3) For other parents provide the opportunity to be informed of goal s and objectives according to the deci s ions made by the professional s, and provide "full and equal decision-making opportunities for parents who choo s e to participate at this level" (Turnbull and Turnbull 1982:121). 1 62

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4) Parents are not encouraged to be come quasi-professionals. The parent and professional roles are different. In the model the parents' relationships to their child "is individual, intimate, lifelong, and subjective. The professional's involvement with the child is time-delimited, in the context of many other children and partakes of objectivity" (Gartner, Lipsky and Turnbull 1991 :82). It is understood in the model that professionals are highly trained for their role. For instance, a special education teacher has a master's degree, and it is unrealistic to expect all parents to take on a professional role requiring years of training. 5) There must be a flexibility of how parents become involved so that all families have their needs met. There should be a variety of strategies "available to help family members address their priority concerns in learning to integrate their handicapped child successfully into the family" (Turnbull and Turnbull 1982:121 ). The family-professional partnership model recognizes the uniqueness of each child and family. There must be an awareness by the professionals that the families have competing demands and that their work with the families must be dictated by the families needs. "An assessment of families' preferences and priorities for involvement and their attitudes towards performing in different roles should be part of the development of an individualized approach (Turnbull and Winton 1984:391 ). Anthropology of Biomedicine The anthropology ofbiomedicine model's general premise is that patients and their families have different perspectives or ideas about illness or disability than those held by practitioners. These ideas can be thought of explanatory models held by the patient, the family, and the practitioner that help explain specific illness episodes. These models can be thought of as cognitive maps and "are anchored in strong emotions, feelings that are difficult to express openly and that strongly color one person's reaction to another's explanatory models (Kleinman 1988: 122). In studying the practitioner s explanatory models we try to understand how the practitioner understands disease and how it is treated. When the patient's and family's explanatory models are studied we are 163

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examining "how they make sense of a given episode of illness, and how they choose and evaluate particular treatments (Kleinman 1980:1 05). To look at the interaction between patients, families and practitioners and their differing explanatory models is to analyze the problems of communication across barriers in understanding and meanings. Empathic and ethical treatment requires a negotiation between the practitioner and patient so that they understand each others' perspectives and can come to a respectful agreement about the causes of the problems and treatments. Practitioners' explanatory models are generall y explicit with theoretical and clinical meanings. The practitioner is able to describe the models and uses them in his or her role as a clinician and as an expert purveyor of knowledge. When a practitioner explains a patient's illness complaint, the illness is recast in terms of theories of disease or di s order. Patient and family explanatory models are often partly conscious and partly outside of awarenes s (Kleinman 1980 : 109) These laymen s models are based on tacit knowledge and experience, and are seldom fully coherent or unambiguous. The model s are fluid and often change overtime, and they are plastic enough to cover a wide rang e of experiences and imprecise enough not to be refuted by specific happenin gs (Kleinman 1980 : 109) Illnes s is a cultural e x perience, layered with meaning and tied to the patient's and family's liv es E xplanatory model s and the difference s between practitioners and patients' model s occur for mental and emotional illne ss, as well as for physical illne ss e s There i s cultural meaning in the explanatory models. For instance depression in many cultures i s s een as the soul leavin g the body. Thi s phenomen o n when a per so n is depressed is de s cribed as what you fe e l i s empty, and a body emptied of it s soul lose s interest in 1 6 4

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things, except perhaps its own physical malfunctioning as a thing" (Shweder 1985: 193). In Western culture, depression has both a clinical meaning and then acquires meanings from the patients suffering from the illness. Martha Manning in her book, Undercurrents (1995), in describing her understanding as a psychologist and her experience with depression, shows the dichotomy of these difference perspectives. In the psychological literature, depression is often seen as a defense against sadness. But I'll take sadness any day. There is no contest. Sadness carries identification. You know where it's been and you know where it's headed. Depression carries no papers It enters your country unannounced and uninvited. Its origins are unknown, but its destination always dead-ends in you (Manning 1995:70). The individual's experiences with mental illness impacts the person's social networks, family, and ability to function in his or her social world. To study the explanatory models of practitioners and their patients suffering from mental illnesses or disorders requires an examination of their relationships. illness, and especially mental illness, "is deeply embedded in the social world, and consequently it is inseparable from the structures and processes that constitute that world" (Kleinman 1988 : 186). This means that in studying the children's mental health service systems, systems such as the schools are an essential part of the structures that must be examined. Although a school system and its professionals are not medical practitioners, the teachers and other professionals are trained practitioners that have formal-learned explanatory models which can be treated in the same manner as medical practitioner models. This is why the anthropology of biomedicine ha s been utilized as a framework in the collection of the multiple-case studies and for the analysis of the data. 165

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Proposition 1: Enabling and Empowering Families The first proposition states: effective services function by "promoting the capabilities and competencies of families to mobilize resources and perform parenting responsibilities in ways that have empowering consequences" (Dunst 1995: 15). Operationalization of the Proposition's Characteristics Dunst, Trivette and Deal in their book, Enabling and Empowering Famili e s: Principles and Guidelines for Practice ( 1988), describe the operationalization of the enablement and empowerment process, a s follows : I) Family needs and aspirations are first identified to determine what a family considers important enough to devote its time and energy. 2) The unique ways in which the family system operates are identified to determine how the family typically deals with life's trials and tribulations and what aspects of the family system are working well. 3) The family's personal social network is mapped" to identifY existing and potential sources of aid and assistance that may be procured and mobilized to meet needs and achieve aspirations. 4) The optimal alignment and integration of the three parts of the family system occur, in part, by the help-giving behaviors (professional roles) that are employed as part of the assessment and intervention process (1988:10-11). These four steps are the professional's responsibilities in the enabling and empowering process. Data from the multiple-case study showed that the school service system the families were involved in were not using an enabling and empowering model to provide services to children and their families. The family also has a place and responsibilities in the enabling and empowerment model. The operationalization of the help seekers or families' role include: 1) Access and control over needed resources 2) Decision-making and problem-solving abilities 3) Acquisition of instrumental behavior needed to interact effectively with others to procure resources (Dllilst Trivette and Deal 1988). 166

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The following analysis primarily discusses the model from the help seekers' perspective because the case study data was collected to gain the families perspective and experiences in dealing with the special education service system in Hillsborough County, Florida. Analysis Access and control over needed re s ources. The Hillsborough County School System uses an approach to family involvement that primarily includes parent input and review of the child's Individual Educational Plan (IEP). The student's teacher, resource room teachers and others, such as school psychologists may take part in meetings with the family periodically throughout the year to discuss the IEP. Meetings to review the IEP occurs throughout the school year and both Dana Mae (Case A) and Beth (Case B) discuss e d these meeting s in their case s tud y interview s (Dunst, Tri v ette and Deal 1988:70). Both of the families in the case study first found out about services throu g h the school systems The first contact Dana Mae and Chuck had with services was through his elementary school when he was identified as having behavior problems and provided with resource room s ervice s C alvin's first service was at hi s elem e ntary s chool for r e ading problems and later Beth wa s told his learning problems were due to emotional problem s Overall Chuck rece i ved mor e services more quickl y, than Calvin although their service paths to the DEES Center are very s i milar The difference in how s oon Chuck and Calvin were given a particular service seems to b e the difference in their mothers styles of interacting with service providers. 1 67

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In the enabling and empowering model this is defined as "family functioning style". Family functioning style is conceptualized: 1) as a system of individual members or sub-units displaying capabilities, 2) family strengths are ... the combination and interaction of resources (capabilities) of individual family members, and 3) family functioning style is ... the unique clustering and integration of family strengths that promote mobilization of resources to meet needs (Dunst, Trivette and Deal 1988:70). Dana Mae's family style was a dogged pursuit of services for Chuck, getting him into counseling and receiving medication very quickly, and it did get him into the DEES Center at least a year earlier than the teachers expected. When asked to describe how she got the services she wanted, she replied: I got what I wanted because I demanded it I din't ask, I demanded it. When it came to my young'un. And then of course I had a lot of support too because they figured that if I was that much interested in my child that they was going to give me everything possibly available for him. I didn't have nobody denying me nothing once I got started. Beth s more passive approach or style meant that Calvin only received the school services recommended by the teachers and other school personnel. Because of her passive approach Beth never pursued a number of services, such as psychiatric testing or vocational training, that she thought might be helpful. When asked if there were other services she would have liked Calvin to have, Beth said Yeah, I wanted to get him .. .I wanted, remember we was tal.kin' about this last time? I wanted him to get what you call neurologicaL .I wanted the examination of the brain, the head, to see if, where the problem was coming from. If it was something mental, psychological. Something I did, something I did when I was pregnant...or anything. I wanted more help. Medical help or advice which we didn't get. She went on to explain why she did not pursue the matter. 168

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Money, I guess. I don't know. Nobody every recommended it. It wasn't paid for through the school and we didn't have the money to do it ourselves. His insurance didn't cover stuff like that. Dana Mae stated she got all the services she asked for and no doubt would have gotten other services for Chuck if she had felt they were needed. It is also important to note that Dana Mae acted as an informal case manager for her son and made sure communication on how to deal with Chuck was coordinated between the school system, the psychiatrist, and herself. Dana Mae was able to utilize a cluster of strengths such as sticking up for her son, pursuit of the answers she wanted willingness to push the professionals until she got what she wanted, and an abundance of energy, to get the services she thought her son deserved. Beth's family functioning style included strengths such as concern for her son, willingness to sign the IEP forms when asked, willingness to g o to the IEP meetings and listen to what the teachers had to say, and the willingness to keep him in special e ducation, even, at time s, over the protest of her husband. However, Beth s clu s t e r of capabilitie s were not enough or not suited to act as an informal ca s e manager in the same manner a s Dana Mae. There was a very significant difference in the way Dana Mae acted in comparison to Beth, with direct consequenc e s for the service s provided to her son. Decision-making and problem-solving abiliti es. In the enablement and empowerment model s tron g family qualitie s are recognized and define the family s s trength s and family functioning style. The s e qualities include commitment toward the well-bein g and growth of family members s pending time to g ether and doing thing s tog e ther having a sense of purpose, a congruence between values and actions, ability to communicate, clear family rules and values and flexibility and adaptability in the family 169

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roles. There are two other qualities that are seen as necessary for the family to function, these are coping strategies and "the ability to engage in "Problem-solving activities designed to evaluate options for meeting needs and procuring resources (Dunst, Trivette and Deal 1988:25). The multiple-case study examined how the mothers did actively make decisions and solve probl ems with regard to their sons' education and services. Again their family functioning styles impacted the way they approached problems and how active they were in resolving them. Dana Mae expected to have a lot of say in how Chuck was handled by the DEES Center and acted on that expectation. This meant she expected to get the help he needed in controlling his behavior and in learning. She also expected him to be treated with concern and dignity by the teachers She expected to hear about what was happening at the school from the teachers, if necessary on a dail y basis. Dana Mae was quick to back Chuck up again s t the teachers especially when he first started to attend DEES. Dana Mae's high expectations were not always met and at first they created some tension between her and the schooL His teacher gave one example of this when Chuck would come home and tell Dana Mae "stories" about a t e acher having wronged him in some manner. Dana Mae would immediately call the school to find out what happened. She said she just naturally believed Chuck and would take his side. However, by continuing to work with the teachers, she began to understand that Chuck sometime s told tale s and that she needed to get the teacher's side frrst before passing judgment. This led to the teachers cal ling her and telling her if Chuck had misbehaved and to her followingup on disciplinary actions. Dana Mae said that over the years she and the school learned 170

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to work together better. Dana Mae (DM) was very innovative in how she worked with both the teachers and the psychiatrist during the first few years Chuck was in special education. This is what she had to say about setting up a system of communication between the professionals and herself: DM: ... then when I had my sessions at the psychiatrist, I'd call them (the teachers) up and tell them what went on and what she (the psychiatrist) suggested and what she thought would work. I'd call the teacher up and tell her. Because I told her, I said "If we're going to do this, and find out what's wrong-" I said"all three of us need to do it the same way. J: And that was your idea? DM: Yes ma'am. There was no sense them pulling him one way, I'm pulling him the other and the psychiatrist is in the middle. Which way do I go? J: So you coordinated it? DM: Yes ma'am, y e s ma'am. Then if they suggested something, I'd take it with the p s ychiatrist and tell her about it and ask he r how she felt. Bu t see, it had to be both ways, I couldn't do what she sugge s ted for me to at the house, and then they go and do s omething different at school. Then the child wouldn't know which way to go So it had to be consistency and it had to be whatever for that whole week and then at Friday, the last day, then they'd [the teacher] write me a report with the psychiatrist's name on it and I wouldn't even open it. I wouldn't even open it until we got there and she opened it and read it, and then of cours e s he'd say "Well did you read what they wrote?" I said "No it was sealed with y our name on it". You know, so I said that if they wanted me to read it they wouldn't have sealed it. I learned from a conv e rsation with one of Chuck's teachers, that Dana Mae's insiste nt attention to what was going on i n school was not always appreciated by the teachers. The teacher had a different perspective from Dana Mae about how mother s should act, and the teacher was not always s ati s fied with how Dana Mae interacted with the school. However she agreed with Dana Mae that their relationship is better today and said they now work more as a team. 171

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Beth said her typical interaction with school personnel was to have them tell her what they needed to do for Calvin and telling her how to deal with him at home. This was all right with her and she liked the teachers and other staff members. She emphasized that they were always very nice, at both Centers (junior high and high school), and that they always explained until she understood what was to be done. This is how Beth (B) describes working with the teachers: J: When you dealt with or interacted with the school people, how did you go about that? Did you call them or did they call you? B: They called me if there was a problem. And they called me if it was time for our ... what do you call it ... interview? J: Appointments? B: Appointments. Yeah, certain time of the month there would be certain things that I would have to come over there and we'd have to discuss or review and r d sign these little papers. J: And what kind of things were they ? B : His ... I can't think of what the word is ... you know, his testing. I don't know what it was called though. Help me, help me-his review. J: His review? Would it be his grades he was getting or his behaviors that they were reviewing? B: It was some big bunch of papers and I'd have to sign it and his SLD, I mean, his EH teacher would have to be present, the principal his classroom teacher ... J: Was it his IEPIndividual Educational Plan? B: Yeah They'd call me or send me a letter and tell me that it was time for that and then if I couldn't make it, then I would sign this certain 'part down here saying to go ahead and do it, and review it over the phone with me or send me the information in the mail. Back when I had three of them in services I had to sign a lot. Then if there was any particular problems like if Calvin was doin' bad in a particular class or he was having a particular problem, then they would call me and I would have to come over to the school. That wasn't too often until he got into high school. 172

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Beth, in contrast to Dana Mae, did not have a lot of expectations about what the school could or should provide for Calvin. Her approach was to go along with what the school personnel proposed. She did say that the Ballast Point DEES Center (junior high school) kept in close contact with her throughout Calvin's stay. The Hillsborough DEES Center (high school) teachers did not stay in as close contact, which caused a crisis for Calvin when his parents were finally called and told he that had been skipping so much school he would not graduate if he did not stop. He was in 12th grade at this point. Beth was not pleased that the Center had waited so long to contact her in this one instance. The two mothers' expectations and family fimctioning styles contrasted, which meant that they dealt with the professionals in very different ways and had different problem-solving strategies. Dana Mae was proactive in her expectations and Beth was passive. Because of Dana Mae's more confrontational and aggressive approach, she had more conflict with service providers than Beth and was not as satisfied at times with the services provided. When Dana Mae was not satisfied she did something about it. Beth, in contrast, said she was satisfied and always went along vrith the service providers. When a crisis was presented, Beth' s style meant that she could only react to the situation resolve the current crisis, and then hope that things would get back to normal. She was not able to proactively deal with the teachers to circumvent problems. Dana Mae's style and higher expectations meant she worked closer with the school personnel and that Chuck was confronted with a solid front of adults working together to deal with his problems Not only was Beth more passive in her dealings with teachers, but she did not really go along with everything the school wanted her to do which meant that Calvin could "get away with things" more easily at home. 173

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Acquisition of instrumental behavior needed to interact effectively with others to procure resources. The purpose of the enablement and empowerment model is that the help seeker acquire behaviors that allow the family to access and mobilize resources required to meet their needs. As we have seen, family functioning styles can have an impact on how the parent goes about dealing with the professionals and acquiring services for the child. The two cases in the multiple-case study provided a stark contrast as to how parents will approach family involvement in the school system. Dana Mae held very strong opinions about what services Chuck needed and how he should have been treated. Because of her opinions and advocacy, Chuck was probably enrolled in the DEES Center earlier than be otherwise would have been, and he probably would not have received psychiatric counseling. Also, because of her strong interest and active style of problem solving with the psychiatrist and the DEES Center, the care Chuck received was coordinated between the school, counselor, and home. This created a situation where each knew what the other was doing and Chuck received more consistent behavior management and care. Beth said that the school personnel always asked her opinion about Calvin and that they always listened. However, the services that Calvin received were all suggested by the school and Beth just went along. She was and is satisfied with the services Calvin received from the DEES Centers. She thought about some outside services, such as neurological testing and private counseling, but did not pursue these because of lack of funds. Because Dana Mae was so strong in expressing her opinions and then acting on them, her opinions had greater impact with the service providers. As much as the 174

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teachers may have found her a burden to work with at times, she did make a difference in the care and services Chuck received. Beth's approach meant that she did not express her opinions so much as quietly agree with what the school personnel suggested be done. Calvin received years of service, but not everything his mother thought should be provided. How much that made a difference in his life is difficult to say. Had he received some vocational preparation he would probably be more employable than he his today, and have had a better chance of acquiring and keeping a better job than sweeping up at fast food restaurants. Implications Family functioning style is a reflection of the family's strengths, coping strategies, problem solving abilities, flexibility and adaptability. In the enabling and empowering model the family functioning style is assessed, supported and strengthened though the interventions of professionals. In the multiple-case study data presented here the family functioning styles of the two mothers were in great contrast, and did make a difference in the services provided to their children. In the case study interviews, the mothers did not indicate that family needs, aspirations, or functioning style were assessed by the school personnel. The assessments that were completed were child centered and completed to determine the child s academic level and psychiatric functioning. These families did not have the advantage of dealing with a fully defined family involvement model in the Hillsborough School System Family functioning style as a concept, however seems to be useful in examining the interactions of parents and professionals. Each mother brought to her interactions with the school personnel a cluster of abilities, opinions, coping strategies and problem 175

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solving abilities. If the schools had assessed family functioning and supported each mother's style, more could have been accomplished in the treatment of both young men described in the case studies. In addition, Dana Mae may not have had such a struggle on her hands when she first began to work with the teachers, and Beth may have found that her opinions about her son really impacted the service planning that took place in the schools. Proposition 2: Family and Professional Relationships The second proposition is: effective services function by allowing families to identify their own needs and choose the extent to which they can or will participate in the services that satisfy their needs and preferences (Gartner, Lipsky and Turnbull 1991 ). Operationalization of the Proposition's Characteristics The family-professional partner ship model is operat i onalized in Gartner Lipsky and Turnbull's book Supporting Families with a C hild with a Disability (1991). They conceive this model as the family-person-professional partnership, the person being the family member with the disability. As the person with the disability age s and can make his or her own decisions the model become s a three way partnership. The following is modified from a table in Supporting Families with a Child with a Disability (Gartner, Lipsky and Turnbul11991 :81-8 2). 1) Families identify their own needs ; the person identifies hi s or her own needs They may choose to use or decline to use professional assistance from generic or specialized service-professionals to identify or satisfy their preferences and needs. 2) Families and the person choose the degree to which they work with generic o r specialized professionals and with the informal n e twork to meet their needs and satisfy their preferences. 17 6

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3) Families and the person form a partnership with generic or specialized professionals in designing formal and informal services programs, choosing the degree to which they participate, and helping modify programs to make them more responsive. 4) Families and the person form a partnership with generic or specialized professionals in setting policy and designing the formal service system to meet their needs, and in advocating for responsive policy and systems. 5) Many families characterized by racial or ethnic minority and lower socio economic status have encountered system and individual barriers to establishing partnerships with professionals. Full accommodation should be made based on their preferences and needs, and it should be recognized that it most likely is erroneous to assume that white middleand upper -class parents represent minority families' interests. Analysis Families identify their own needs and choose to work with professionals. In the family-professional model the family has a lot of control in deciding what needs to focus on, selecting the service providers they will work with, and choosing the role they will play in r e lationship to the professional s From the family perspective pre s ented in the case studies, Dana Mae (Case A) naturally took thi s path as a par e nt and decided that her son, Chuck, required more s ervices than just the re s ource room he was first placed in during 4th grade. She also s elected to take Chuck to a ps y chiatrist at the local health department and dec i ded to pursue getting Chuck into the DEES Center. Dana Mae describes her goal for getting Chuck into the DEES Center and what the Center could do for him that the regular school could not You don't get into D E ES easy. But the guidance counselor up there to Pinecrest, told me that it was hi s best interest, befor e it got too far out of hand, to go but sh e couldn't do it on her own. They can only recommend it and suggest it She told me I had to g et behind it whether I had to get nasty or not she s ay's "you do what y ou gotta do" so I squawked. I told them that's my baby son and I'm not wa i ting another year to g et him in I want him in now whether you have to hire another teacher to do it you're g o i ng to do it. 177

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Well, these other schools, the classes they got twenty-eight to whatever students. The DEES Center they have two teachers for seven children. So he would get his attention for his attention span and get what he needed for his hyperactive. You know. They could spend more time with him and make him feel better about himself Then whatever problem he had, ... they got substitute teachers plus the regular teacher. So if there was one or two children with the same problem that needed a little more extra attention than the whole seven of them, then they had them in one section. Families choose the degree to which they work with professionals. The mothers in the multiple-case study had no choice in whether they were going to participate in the IEP conferences and development of their child's educational plan. As we have seen with Dana Mae, she made sure she had her say and let the teachers know what she thought should be done. Beth (Case B), on the other hand, found the IEP conferences to be burdensome and at times confusing. The conferences were not her priority; she worked, she was under a lot of pressure at home with four children, three of whom were in special education classes and her husband was not supportive of sending Calvin to special education classes. When asked what happened at the first conference to decide if Calvin needed special classes Beth explained: They (the teachers) suggested that he be put into the EH program and then they explained what that was. And we thought they knew what's be s t because they re teachers and so we just signed the papers and let him go. Beth went on the say that she was glad a decision had been made but it did create some tension in the family. Here is how she described the situation: Well I was glad that he was getting help but my husband didn't like it because he didn t feel that there was anything wrong with Calvin. But obviously there was . . I didn't really know what was going on, I just trusted the school to help him. And I was there whenever they needed me and they knew it I would come over to the school to all his little things .... Beth al so described how she usually worked with the teachers: 178

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Well, they would send home a report every week and I'd sign it. You know his progress report, and he would earn points and stuff and then if they had certain discipline problems at school then they would call me at home and tell me how they had disciplined him at school, for whatever reason and then I was to followup the discipline at home with taking a privilege away from him. Beth's usual way of dealing with the teachers was to go along with their requests, unless she disagreed. However, she would seldom discuss her differences with them, so many of the teachers' recommendations were halfheartedly followed because they did not make complete sense to Beth. Overall though she reports being happy with the teachers and how they treated Calvin over the years. If Beth and Dana Mae had worked with a service provider that utilized the family-professional partnership model, their different styles of interacting would have been recognized and accepted. Dana Mae was capable of taking part in much of the decision making process, while Beth found the process burden s ome and confusing and would hav e be e n relieved to have s ome of the r esponsibil i ty lifted from her shoulders. In th e family-professional partnership model neither parent would have been judged as righ t or wrong, but accepted for what they were able to provide to the decision making process F amili e s form partner s hips with profe ssionals to d e si gn s e rvice s and polici e s to m eet th e ir needs Above Dana Mae's "case management" approach to working with the t eacher s and p s ychiatrist s was described. She acted as a go-between and recei v ed instructions from the psychiatrist and teachers on how to handle certain situations with Chuck. An example of her approach to team building is described by Dana Mae : 179

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Well, you know, discipline and if he showed his butt, you know, send him in his room until he felt that he could come out and handle himself, or give him an extra chore to do or you know, it was different things that we tried different wa y s you know. He couldn't -if he misbehaved in school and \:vent to the session there and -cause the teachers they wrote-I had the teachers write me a progress report every week They had to go out of their way to write a progress report every week to give to the psychiatrist. I didn't want them just taking my word for it. He thought he could get away with things at school but he knew he couldn't get away with at home cause momma'd bust his butt. And then he'd go "ha ha ha, you can't hit me" but then the teachers would call me up and tell me what Chuck would do before he'd even get home off the bus. And then when he'd get home then he'd say "Well how did you know?" But see we were very close knit when it come to my son. Yes ma'am, yes ma'am. Then if they (the teachers) suggested something, I'd take it 'Nith the psychiatrist and tell her about it and ask her how she felt. But see, it had to be both ways, I couldn't do what she suggested for me to at the house, and then they go and do something different at school. Then the child wouldn't know which way to go. So it had to be consistency and it had to be whatever for that whole week and then at Friday, the last day, then they'd [the teacher] write me a report with the psychiatrist's name on it and I wouldn't even open it. I wouldn't even open it until we got there, and she opened it and read it, and then of course she'd say "Well did you read what they wrote?" I said "No it was sealed with your name on it". You know, so I said ifthey wanted me to read it they wouldn't have sealed it. Dana Mae worked to develop a set of policies or guidelines for how she and the teachers would treat Chuck. She and the professionals formed a partnership that lasted for years. Using her partnerships with the psychiatrist and the school teachers, the professionals were able to help Dana Mae deal with Chuck's behaviors at home and she was better able to understand their reasons for giving Chuck discipline at school and to follow up at home when needed Families who are minorities or are of lower socio-economic status encounter systems barriers Did Dana Mae or Beth encounter problems due to differences in socioeconomic status between them and the professionals they encountered? Dana Mae stated 180

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that she was always able to get the services that she felt Chuck needed because they were free. She does not recognize any other social barriers. The services included the DEES Center placement provided through the school system, and three years of psychiatric counseling, including 6 months of Ritalin therapy which was provided by the Community Health Center. Dana Mae learned about the DEES Center from the Resource Teacher at Pinecrest Elementary. This administrator gave her the information and support she needed to assure that Chuck got into the DEES Center as quickly as possible. As we have seen, Dana Mae was the person that made the calls and pushed the school administrators to get Chuck into the DEES Center by fifth grade. Dana Mae had used the Health Center when Chuck was a baby to get his shots and check-ups. She knew about the Health Center's services and had been told about the counseling services by other people who had used the service. She said that at first the counseling was free because she was unemployed and later on she paid a small fee. As stated above, Beth agreed with the school personnel's decisions about how to deal with Calvin's problems and what type of care he should receive. All the school services were free, so Calvin received all of his services through the school system. Beth does not recognize any other social barriers to receiving services other than a lack of money to get Calvin outside counseling and neurological testing She said that she thought about getting him more testing because she wanted to know what was wrong with him and if it was her fault. She said that if their insurance had covered such testing she might have had it done Lack of money or insurance, and because Beth was not aware of any other possible free services, meant that Calvin received the services suggested by the school, but did not receive any other services. 181

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For these families, economic situations did not limit services provided to them by the school system or by a public health clinic. Rather, the difference in services seems to be more a matter of how much the mother knew about the service and how much she was willing or able to find out about what was available and then push for that service. It also seems to be a function of their network of friends and other informal contacts. For instance, Dana Mae learned about the counseling services at the Health Center originally from people she knew in her circle of acquaintances. Beth was much more isolated and spoke only of her extended family as her contacts. She did not know where to ask for services and was not able, for reasons such as her husband's resistance and her own passivity, to do more than think about some other services she would have liked to pursue for Calvin. The only other indication from the case study that there may be socio-economic or class barriers in the family and teacher interactions came out of the interview with Chuck's special education teacher. The teacher seemed willing to work with Dana Mae and thi s seemed to be of benefit because they were able to coordinate their efforts and be consistent in how Chuck's behaviors were handled From the teacher I interviewed I understood that there was at times grudging respect for Dan a Mae The teacher put it this way: At first, back when Chuck was in 7th grade, Dana Mae would call every afternoon if everything was less than perfect. Chuck would tell her s tories and she would call to defend him Now we work more like a team and we hear from her more like once a month She [Dana Mae] seems genuinely concerned. He does get hi s medicine [for his leg due to the motorcycle accident] when things get serious enough She is not perfect, but she does the best s he can as a single parent. She is better than most of the parents. I see some of the same behaviors in Chuck as I do Dana Mae 182

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The problems here with the teacher's perceptions are not subtle and must have an impact on how the teacher views and interacts with the parent and child. Implications The family-professional relationship model is characterized by a family-centered focus. There is not an expectation that every family is the same, should be treated the same, or should even take part in the program in the same way. The family is assessed to determine how much they can or will participate in the educational planning and activity of their child, and to determine the form their participation will take. The two most critical factors in the model are communication and respect between the professionals and the parents. Data from the multiple-case study showed that the families were not involved in the family-professional partnership model in the Hillsborough School System. Instead, they were expected to, at a minimum, come to parent-teacher conferences and discuss the IEP, to review and sign the IEP, and to respond to the school's request s when called upon to do so The expectations of the school personnel were that every parent should be able to take on these minimal activities. This attitude was voiced when Chuck' s teacher talked about Dana Mae. The teacher said, "She is not perfect but s he does the best she can as a single parent. She is better than most of the parents". Neither mother reacted as expected by Hillsborough County school teachers and administrators. Dana Mae took it upon herself to make sure her son received all the services she came to believe he needed. Because she was working within a school system that basically followed the federal regulation s that required, at a minimum, IEP involvement, her activist approach of insisting on serv ices and coordinating behavior 183

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management actions for Chuck between the teachers and the psychiatrist were viewed negatively by the teachers, especially at first. Dana Mae readily admits that if she needed to, she would be demanding, explaining, "I got what I wanted because I demanded it. I din't ask, I demanded it". From her perspective, she did everything she could think of to take care of her son and make sure he got the services he needed. It took many years for Dana Mae to earn a grudgjng respect from the teachers. Beth's approach was to wait for the teachers to tell her what services were needed. A pattern developed where the teachers would call and set up an appointment to discuss Calvin's IEP. Beth would go to the meetings, listen to what the teachers had planned for Calvin and sign what needed to be signed. Beth remembers signing "big bunches of papers" at meetings where Calvin's EH teacher, the principal and Calvin's regular classroom teacher were present. Although, outwardly she appeared to understand and agree with everything presented to her, Beth often had little idea of what it all meant. She never told the teachers she didn't agree with them. An example of this was when Calvin's teacher asked Beth to take the follow-up disciplinary action of taking away from Calvin the privilege of watching TV at home. Beth did not agree with this action and never talked to the teachers about why she disagreed, and any way, she said "Calvin did not watch TV, so what good would it do". This was just one example of a lack of true communication between Beth and the teachers. The Hillsborough County School System could be improved if a model like the family-professional partnership were implemented Had this model been in place the school personnel would have been better equipped to tap into the unique strength of parents, like Dana Mae, who are willing and ready to take an active role in educational 184

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decisions for their child. In addition, this model would help teachers know how best to communicate with parents who are passive like Beth Beth was willing to go along with the teachers for the good of her child. However, her participation was seldom whole hearted because she did not understand the teachers' plans, and the teachers were not given a model in which to work that enabled them to find the best way to communicate with Beth, or to recognize the best level of parent participation for Beth. Proposition 3: Perception of Youth Outcomes The third proposition states: the perception of youth outcomes is defmed by the domains of reference for the different groups (parents and professionals) (Kleinman 1980, 1988). Operationalization of the Proposition's Characteristics Perception i s defin e d a s the parents or the profes s ional s explanatory model of why the ch ild requires special education and its accompanying outcome "Explanatory model s are the notions about an episode of sickness and its treatment that are employed by all thos e engaged i n the clinical (or educational) process" (Kleinman 1980:1 05). The domain of reference is defined a s that sphere of conc ern or int e rest of the group under discussion. T he domain of reference for the parent s is their personal relationship s with their child which "is individual intimate lifelong and s ubjecti v e (G artn e r Lipsky and Turnbull 1991 : 82). The profes sional's domain of reference i s an invol vement with the child that i s time-delimit e d in the conte x t of many othe r childr e n and partak e s of objecti v ity. 185

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Youth outcomes are defined as functional outcomes. Functional outcomes are the "impact of services on (the) child's behavior at home, in school, and in the community" (Burns, Hoagwood and Maultsby 1998:695). Analysis Outcomes for the purposes of this analysis look at the adjustment of the two young men who took part in the multiple-case study to normal aspects of life such as school achievement, home life, employment, and involvement with law enforcement. From the professional or service system perspective, designing a strategy to improve child outcomes first involves identification of the elements that either directly or indirectly are likely to affect child outcomes (Burns, Hoagwood and Maultsby 1998:686). There are any number of factors that determines child outcomes ranging from access to services, existing policies on the state-of-the-art services, availability of appropriate services, child and family characteristics, clinical capability, and quality of care. A service system must discriminate between the characteristics its programs can bring to the improved outcome and any number of confounding factors not directly related to the service. The National Adolescent and Child Treatment Study (NACTS) survey data was utilized to look at two specific outcomes for children diagnosed as seriously emotionally disturbed. These two outcomes, poor academic attainment and high law enforcement contacts are discussed in Chapter V. Data analysis showed that' the children in the NACTS study overall had very poor academic achievement starting in Wave 1 and persisting throughout the seven years of the study. It was found that youths with poor academic attainment were more likely to have other risk factors such as more law 186

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enforcement contacts and other service contacts. Law enforcement contacts were also high for the NACTS sample, especially for males and older children. Problems with academic attainment and increased law enforcement contacts are interrelated and persistent over time, which underscores the need for long-term, comprehensive and integrated services for children diagnosed as SED. Chuck and Calvin fit the profile of the NACTS sample in academic achievement. Calvin did graduate from high with a special diploma, and Chuck, at age 19, was making the deci s ion to leave the DEES Center and attend night school. Calvin's reading and math scores were very low, and Chuck's reading level was at the 9th grade level, but this was still below grade level. N either Chuck nor Calvin had an y law enforcement conta c ts at any time during the NACTS survey. Research with the NACTS sample also included an examination of characteristics of successful employment for the young men and women in the study. It was foW1d that "those with more accomplished living and socialization skills those with higher math achievement levels, older youth and non-minorities showed a higher probability of being employed" (Pennington 1997:93). During the period of the case study data collection, Calvin held a number of jobs at fast food restaurants but did not retain any of them for more than a month or so. Chuck had not yet worked except as a summer intern and in a plant nursery as a student. In a follow up call to Calvin's father in March 2000, I learned that Calvin continues to hold a series of minimum wage low skill jobs that he leaves easily if he decides he does not like the job. I was not able to contact Chuck's family and do not have any more information on his job history. If looked at from the professional s domain of reference, academic and community outcomes for Calvin and 187

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Chuck look poor. Their educational attainment was well below expected grade level, and at least for Calvin, employment attainment seems to have remained low. However, examined from the mothers' perspectives or domains of reference their sons have accomplished a great deal and the mothers never gave the impression that they saw their sons as failures. For example, Dana Mae (Case A) stated that Chuck would now be in W.T. Edwards juvenile hall, or worse if he had not attended the Plant City DEES Center since 5th grade. She explained that although he was not physically violent and had never hurt anyone, he always had a bad temper and could be verbally abusive to others. He also had a tendency to be easily led by his peers. Being in the DEES Center meant that Chuck's behavior was more controlled on a daily basis than it would have been in a regular school. Both Dana Mae and Chuck felt that his behavior improved over the years and he that was better able to control his temper and "attitude" It wa s of great importance to Dana Mae that Chuck was never in trouble with the authorities. Beth (Ca s e B) was convinced that Calvin would not ha v e graduated from high school if he had not attended the DEES Centers. She said that the special school was essential for him to attend, and that he would not have fini s hed a regular s chool. Besides his problems with reading and math, for which he needed added help Calvin was easily led astray by peer pressure according to Beth. She s aid the special school helped him stay out of trouble. The whole family was ve ry proud that Calvin received a Special Diploma in June 1991 from the Hillsborough D EES Center. Both mothers were adamant about how important it was that their sons had not g otten i n trouble with the law. Both attributed at least some of this to beha vior management techniques used by the DEES Centers. It should also be noted that by the 18 8

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end of the case study interviews, both Calvin and Chuck had very modest success in the transition from adolescence to early adulthood. Even though Calvin graduated from high school it was with a special high school certificate because he was not able to complete the regular high school academic course. To his family he had achieved an important accomplishment. In addition Calvin was having a very difficult time holding a job and was most successful at working for neighbors mowing lawns. Chuck, was on the verge of dropping out of the DEES Center, and although he had plans to work on his GED in night school, this plan was not assured. Both mothers recognized that their sons were immature for their age and that this was a problem. Dana Mae stated that the one thing she absolutely expected from Chuck was that he graduate from high school. The mother s had one additional expectation that their sons to be able to support themselves. As Dana Mae stated ''I'm not suppporting anybody shiftless". The scale of success these young men's families judged them by was modest when compared to the professionals' scale What was really important to the mothers was that their sons could support themselves and be happy. Beth summed up her thoughts when she talked about Calvin's greatest accomplishment: Graduating from high school. I think that's it... and getting a job. Even though the first time didn't work out, he did go out and find another one. So, that... in life for Calvin ... that one greatest accomplishment is making money. That's the first thing on his mind is making money It's always been there. He's always been money conscious. And he's very generous with it. Implications Outcomes for child s mental health service systems are usually explored with regard to what are the best or most appropriate outcomes for the child in a program It then becomes the service system's task to identify appropriate outcomes, identify 189

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characteristics to measure, develop measures to determine if the program's interventions are a success, and test for su ccess or failure. For professionals in the field, outcomes can be functional dealing: with school or community achievement, as discussed here, or diagnostic, environmental, quality care or service outcomes. The aims of the professionals are: a) to lay out a comprehensive strategy for improving outcomes for children and families; b) to assess what is in place, which if enhanced, could result in better outcomes in the near future; and c) to propose a plan for the future, largely research-based, which will facilitate much improved outcomes over the long term (Burns, Hoagwood and Maultsby 1998:685). The goal of the professionals is to enhance service for all children and families. The more effective the service provided the better the outcomes will be for every child and family. For the individual family, the goal is getting their child the serv ice s he or s he need s Their goal is more individuall y centered, and they are not concerned so much with others, although families do band together to improve services. If a family member thinks of outcomes it is personalized, such as Beth's view that C alvin w a s much happier once he had graduated from school. She said, "He changed, like he was happier. He was mor e relaxed. He didn't have the burden of school on hi s mind ... He felt independent." The goal of graduating wa s important for her, but to see Calvin happ y was an important outcome The implication for the differences in perspectives between the families and the professionals on outcomes for children receiving services is that since they may not under sta nd each other's perspective poor communication result s and children have poorer outcomes. Profes s ionals should understand that fam ilies differ in th eir belief s 1 90

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about success for young adults. For Calvin's family, he was a success because he did graduate from high school. The special diploma did not made any difference in their estimation of his success. For Dana Mae, success would be Chuck graduating from high school and learning a trade and being able to support himself This does not mean that the service systems should discard their outcome measures for their programs, as these measures are important in evaluating and improving services. But it is important to understand that not all families will share the same view of service outcomes, and may find them inappropriate or intrusive to the family and its needs. Discussion Two rival theories were used in this chapter to examine the first two propositions on the role of family involvement in children's mental health service systems from the family perspective. The multiple-case study data collection provided information on how the mothers, Dana Mae and Beth, worked with the school teachers and other service personnel when their sons, Chuck and Calvin, received special education services from the Hillsborough County School System. The rival theories utilized in the discussion were the enablement and empowennent model", and the parent-professional partnership" model. From the mothers' descriptions it was obvious that the Hillsborough School System DEES Centers did not base their family involvement activities on either of the family involvement models. The DEES Centers followed the federal regulations that required at a minimum that parents take part in the IEP meetings and reviews. However from the parent perspective, elements of each rival theory can be useful in understanding the activities ofthe parents and services. From the enablement and empowennent model 191

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the concept of family functioning style was very useful in describing the clustering and integration of parent strengths and abilities to mobilize resources to meet family needs. This one characteristic seemed to be the most striking when comparing the different ways the two mothers approached and worked with the professionals to receive help for their sons. The parent-professional partnership from the family perspective is the most family centered. This model has the advantage of recognizing that not only are all families different, but it goes a step further and provides processes flexible enough that any family could find some comfortable level of family participation. It is important to note that in the parent-professional partnership the parent has much more say even in the type and amount of participation they will take on. The model recognizes that professionals are highly trained and that all parent s can not be e x pected to take on quasi professional role s in the educational deci s ion-making proce s s for their children Although neithe r of the fir s t two propositions wer e fully matched with the multiple-case study data part s of both theories used to con s truct the propo s i t ion s prov ed to be useful, and a redesigned proposition i s sug g ested That proposition is : E ffective s ervice s function by recognizing and helping the family utiliz e th eir own family functioning style and by allowing the famil y to identify their own needs and choose the extent to which they can or will participate in serv i ces that satisfy their needs and preferences. The third and final proposition examined the differing perspecti v e s on child outcome s between the parent and professional s Thi s proposition was al s o s upported by the multiple-case study data Professionals use any number of formal outcome s to 1 92

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measure the success of children's outcomes and the effectiveness of services. The case study mothers viewed the individual outcomes of their children very differently from the professionals. For one mother, to have her son graduate from high school, get a job, and be happy are the only important outcomes. Parents do not measure their expectations of outcomes as a measure of success for the program, but rather for their child. What parents may expect from a service is often different than the expectations of the professional who must detennine the effectiveness of programs for every child. Professionals need to assess and understand the parents' perceptions on child outcomes They also need to understand that outcomes have very different meanings for the parents such as wanting the child to be happy. Again, without a clear understanding of the parent perspectives, the service systems professionals will be unable to develop services and provide outcomes that match the families' and children s needs. I f true parent profess i onal partnerships are to occur parent outcome expectation s mus t be a part of the system s and s e rvice proce s se s 193

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Vll. IMPLICATIONS AND CONCLUSIONS Finally, there is a need to expand the repertoire of research methods to accommodate the complexity of the service system including family support programs. In addition to the evaluation of specific program components, creative approached to assessing the effectiveness of a comprehensive set of services for individual children and children are needed (Friesen and Koroloff 1990:22). Implications for the Children's Mental Health Service Systems In 1990 when Friesen and Korol off discussed the need for an expansion of research methods to study children's mental health service systems, their primary concern was the recognition and expansion of family-centered care and supportive services for families. The move toward family-centered care is continuing in the service systems with further development of the system of care model by Stroul and Friedman (1986) and the growth of innovative programs like those described in Chapter II. However, Friesen and Koroloff concluded that more research needed to be done to truly provide effective services and support to families. They wanted the research and service community to rethink the meaning of effective services for families and in doing so it would require: 1) rethinking the concept of program effectiveness to include a wider range of outcome variables, 2) increased attention to the specification of complex program processes and components, 3) research approaches that link program characteristics, family characteristics and outcomes, and 4) the development of new research methods to address complex family and program questions (Friesen and Koroloff 1990:22). 194

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One of the original purposes of the multiple-case study project was to examine and to demonstrate the usefulness of the case study methodology in the very complex environment of children's mental health service systems. The case study project has proven that the methodology is useful as a complementary methodology for a large project like the National Adolescent and Child Treatment Study (NACTS) survey. The case study methodology has also been recently used in another study that looked at the effects of school restructuring and reform on the outcomes of students identified as SED (Kutash et al. In press). The approach in this study was to use six propositions that identified key factors in the school reform process in an exploratory case study design. These six propositions were examined with data from ten schools active in school restructuring. The schools showed similar patterns in their approach to school restructuring including the concept of" includedness (Kutash et al In pre ss). As a methodological tool the case study approach has proven to be effective in addressing Friesen and Koroloffs challenge to "expand the repertoire ofresearch methods to accommodate the complexity ofthe service system including family support programs" (Friesen and Koroloff 1990:22). The case study project was developed in response to this challenge and also proved to be u se ful in the examination of family involvement models that are becoming so vital to the development of integrated family-oriented services now recognized as essential to quality treatment of children and their families 195

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Implications of the Research Propositions The purpose of the dissertation was to examine family involvement in the treatment of their children with SED receiving special services from a school system, family interactions with service providers and the possible impact of those interactions on the children's functional outcomes. Data from the multiple-case study was used to examine the three explanatory research propositions on family-professional involvement and interactions. The multiple-case study data are based on the family perspective and the analyses of the propositions were examined from that perspective. The first two propositions, each based on rival theories of family involvement in service programs (First Theory: enabling and empowering Rival Theory: family-professional partnerships), were examined from the perspective of the two case s tudy mothers' experiences with the Hillsborough County School System, and primarily the DEES Centers for exceptional students Analysi s s howed that both rival theorie s were somewhat match e d by the family perspective data. Howev er, the rival theory of family-professional partnerships proved to be the most family centered, and if used by th e s chool system would have proven to be clo se st to the parent s expressed needs and ability to cope with the situation of having to deal with educational decision making for their children. The family-professional partnership model i s mor e flexible in its family roles and allows for a wide continuum of roles that parents can select depending on their abilities and comfort leveL An alternative proposition is suggested that combine elements of the two rival theories, which better fit the parent perspective data from the multiple-case study. The alternative proposition is: Effective services function b y r e cognizing and helping the family to utilize their O\Vn family functioning style, and b y 196

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allowing the family to identify their owns needs and choose the extent to which they can or will participate in services that satisfy their needs and preferences. As discussed in the description of the development of family centered care in Chapter II, families and professional service providers are developing models that take into account the essential component of family-professional partnerships. The core values of this movement recognize the uniqueness of each family and the positive advantage of the family's strengths and ability to cope with life on a daily basis. The examination of family involvement theories using family perspective data provided by the multiple-case study supports and emphasizes the two core values. The data further showed that service systems must provide flexible responses to each family if the family and child are to receive the full benefit of any programs or services that may be provided. Without this element, the family, as a unit, suffers greater stress and becomes less able to cope with the child's needs for special educational or mental health services Families require support, but it must be support that the family identifies and is able to accept This is a very delicate balance, not easily attained, but nevertheless essential to incorporate into the new models of family involvement emerging throughout the country. The third proposition examined the differing perspective of the family and professional with regard to child outcomes. The multiple-case study data showed that the family perspective on child outcomes is narrowly focused on their children s needs. The two mothers who took part in the multiple-case study expected their sons to graduate from high school, work, and be happy in life. However, when compared to the professional outcomes the family outcomes look limited in scope and level of achievement For instance in Case B the level of academic attainment (i e., a special 197

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diploma) and part-time work (i.e., cleaning a store) from the service systems view is low. However, from the mother's perspective her son had done very well in graduating and in continuing to work at a variety of small jobs. Her primary goal was for her son to be happy. He had already accomplished a great deal, and she was willing to give him the support and time he needed to make his way in the world. Analysis of the third proposition showed that the family perspective of expected outcomes is very different from the service systems' expectations. The impact ofthis difference is that the family may recognize success for their child that is not counted by the service system. As part of a complete family-professional partnership model, even the family's expected child outcomes must be assessed and responded to by the service providers. Implication for Applied Anthropology The case study methodology as defined by Yin i s a u seful tool for applied anthropology in the exploration of complex contemporary phenomenon such as children's mental health service system s Thi s methodology was able to take into account the context as well as pre sent the family perspective. It would be just as useful in presenting a variety of perspectives depending on how the s tudy was designed. In addition case study methodology accommodated th e use of the anthropology of biomedicine, which proved to b e well suited to exploring the differing perspectives of the family and the professionals The medical anthropology model was an intricate part of the multiple-case study, beginning with the development of the research plan, the exploratory research questions the case se lection and the use ofthe mini-ethnography for data collection The theory was al s o used in the development and analysis of the 198

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third proposition where it proved to be useful again in demonstrating the differing perspectives of the parents and professionals. This study demonstrated that an anthropological theory, in combination with case study methodology, provided a flexible and useful approach to the study of children's mental health service systems, and expanded the repertoire of methodological approaches for applied anthropology. Limitations of the Multiple-Case Study As children's mental health service systems continue to move toward involving families in partnerships in the care of their children, it is vital that the family perspective be understood and incorporated into research as well as service. The multiple-case study project brought out some intriguing questions that require follow-up. Such follow-up could be completed either through added case studies of families similar to the families involved in the NACTS survey and the case study, or through the selection of further cases that vary in specific conditions (perhaps looking at families of children with different disabilities), so that the questions of family-professional partnerships and interactions could be examined in a "systematic replication design" (Yin 1981:1 02). From an anthropological perspective there are a number of questions generated by multiple-case study project. First, an area that needs further exploration is the case study's questions on family-service provider interactions. The multiple-case study was limited in scope, not only in the number of cases completed, but also in the data collected from various sources. The objective of the study was to explore the family perspective and this was done. However, my ability to examine the full interaction between the parent and the teachers, and ask questions from the perspective of the professionals as 199

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well as the parents was limited. It would have been most helpful to be able to talk to some of the teachers with which Beth (Case B) had interacted over the years. This would have added an extra dimension to understanding why she acted so passively during their meetings. It would also be of great value to expand the data collection methods and perhaps be able to observe the children's classes, attend parent-teacher conferences, and examine a variety of records. To have been able to observe and talk to other teachers and family involved with the young men would have strengthened the study and the analysis. The restraints put on the multiple-case study project are not requirements of the case study design and data collection could certainly be expanded. Another question about the case study methodology is its usefulness for applied anthropology. As the discipline continues to expand into the area of mental health policy analy s i s and ev aluation it s methodological approaches will have to continue to evolve. As applied anthropologi s ts look for and develop rapid and valid qualitative methods the case study has sev e ral advantages. F irst a s lon g as the theoretical sample" can be adequately identified, "replication of results can occur through the addition of adequate additional cas es. Second the ca s e s tudy i s a method that studie s contemporary phenomena within its context and can deal with very complex questions Third, it can be us e d to produce result s fairl y rapidl y As applied anthropolo gy move s into more evaluation and problem-solving areas innovative and flexible methods of res earch are always in demand The case study methodology presents the discipline with another tool for its growing field The anthropology of biomedicine model was used in the case study to examine family practitioner relationships that were not medical r elationships In the United State s 200

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children labeled seriously emotionally disturbed receive highly medicalized diagnoses and services. However, as we have seen from this case study, many of these children receive most, if not all, of their services through the school systems. This brings up the question of how the validity of the model for studying non-medical systems and family patient-practitioner interactions. The school system examined in the case study required the child to have a mental illness diagnosis in order to receive services in the day treatment facilities. In addition, Chuck s (Case A) teacher received training as a special education teacher and was able to describe his behaviors using very specific terms ("He is very negative personally and has very delayed social skills." "Very capable, but very unmotivated."). Are the explanatory models of teachers and other school personnel equivalent to medical practitioner models? Further examination of the expansion of the anthropology ofbiomedicine into non-medical area s of the children s mental h e alth s ervice sys tems is required Finally in li g ht of the gr eat dislike both Chuck and Calvin had for their s chool experience and the poor level of their achie v ement s in their school s, a number of que s tions were s ug g ested There seem s to be s imilarities in the way Chuck and Calvin rej e cted their school s a s of little relevance to their lives as did the children described b y Rosenfeld in "Shut Tho s e Thick Lip s !" (1971). The more Calvin and Chuck talked about their school experience and how impoverished it was for them, th e more I wondered what real benefit they w e re receiving from these facilities Had the day treatment cent e rs become the equivalent o f g hetto school s for children lab e led s eriousl y emotionally disturbed? If we examine the rele v ance of the center s to the socialization of their student s would we find that there was no congruence between what the child was 201

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asked to learn in the school and what he would become growing up in his own neighborhood and family? Recommendations The following is a list of recommendations that have come out the multiple-case study research: Follow-up to the Study 1) Re-examine the research question in light of the multiple-case study data and determine if the questions could be rewritten to better reflect the family perspective. 2) Determine if the selection of cases that are similar or divergent from the case study families would help clarify questions such as how much parent style determines quality of care for the child. 3) Determine what other data collection methods would enhance the analysis of the case, such as observation of parent-teacher interaction, or more extensive interviews of other service providers. Applied Anthropology 1) Further explore the question of the validity of using the anthropology of biomedicine in the area of children s mental health service systems where much of the care is provided by non-medical personnel. 2) Further explore the utilization of the case study methodology on applied anthropology work. Can the methodology provide the rich cultural context needed in applied research? Public Policy for Children's Mental Health Service Systems 1) Continue to explore the implications for developing a methodology, such as the case study, that can document the family perspective in the area of family-service provider interactions. 2) Explore the implications of the NACTS findings in light of the case study findings. Are there areas that should be further researched? 202

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Boyd, L. Adlai 1992 Integrating Systems of Care for Children and Families: An Overview of Values, Methods and Characteristics of Developing Models, \vith Examples and Recommendations. Tampa, FL: Department of Child and Family Studies, Louis de la Parte Florida Mental Health Institute, University of South Florida. Brandenburg, Nancy A., Robert M. Friedman, and Starr E. Silver 1990 The Epidemiology of Childhood Psychiatric Disorders: Prevalence Findings from Recent Studies. Journal ofthe American Academy of Child and Adolescent Psychiatry 29:76-83. Brown, Eric C. 1994 National Adolescent and Child Treatment Study Survey Data for Wave 7. Unpublished data. Tampa, FL: Research and Training Center for Children's Mental Health, Louis de la Parte Florida Mental Health Institute, University of South Florida. Brown, Eric C., and Paul E. Greenbaum 1994 Reinstitutionalization After Discharge From Residential Mental Health Facilities: Competing Risks Survival Analysis In 7th Annual Research Conference Proceedings. A System of Care for Children's Mental Health: Expanding the Research Base. Cindy J. Liberton, Krista M. Kutash, and Robert M. Friedman, eds. Pp. 271-276. Tampa, FL: Research and Training Center for Children's Mental Health, Louis de Ia Parte Florida Mental Health Institute, University of South Florida. Burchard, John D and RichardT. Clark 1989 Individualized Approaches to Treatment: Project Wraparound. In 2nd Annual Research Conference Proceedings. A System of Care for Children's Mental Health: Building a Research Base. Alissa Algarin, Robert M. Friedman, Albert J. Duchnowski, Krista M. Kutash, Starr E. Silver, and Michael K. Johnson, eds. Pp. 64-78. Tampa, FL: Research and Training Center for Children's Mental Health, Louis de Ia Parte Florida Mental Health Institute, University of South Florida. 1990 The Role of Individualized Care in a Service Delivery System for Children and Adolescents with Severely Maladjusted Behavior. Journal ofMental Health Administration 17( 1 ):48-60. Burchard, John D., SaraN. Burchard, Robert Sewell, and John VanDenBerg 1993 One Kid at a Time: Evaluation Case Studies and Description of the Alaska Youth Initiative Demonstration Project. Juneau, AK: Division ofMental Health and Mental Retardation, State of Alaska. 205

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Saxe, Leonard M Theordore Cross, and Nancy Silverman 1987 Children's Mental Health: Problems and Services. A Report by the Office of Technology Assessment. Durham: North Carolina : Duke University Press. 1988 Children's Mental Health: The Gap Between What We Know and What We Do. American Psychologist 43(10):800-807. Schaefer, Mark, John Burchard, and Katie Rick 1990 A Case Study of a Child in Out of-State Residential Care: An In-Depth Analysis of What Didn' t Work. In 3th Annual Research Conference Proceedings. A System of Care for Children's Mental Health: Building a Research Base. Alissa Algarin and Robert Friedman, eds. Pp. 211-226. Tampa FL: Research and Training Center for Children's Mental Health, Louis de la Parte Florida Mental Health Institute, University of South Florida. Schensul, Stephen 1973 "Action Research" The Applied Anthropologist in a Community Mental Health Program In Anthropology Beyond the University. SAS Proceedings no. 7. Alden Redfield ed. Pp. 106-119. Athens, GA: University of Georgia. Schensul, Stephen and Mary Bakszysz-Bymel 1995 The Role of Applied Research in the Development of Health Services in a Chicano Community in Chicago. In Topias and Utopias in Health S. Ingman and A Thoma s, eds Hague : Mouton. Scheper-Hughe s Nanc y 1979 Saints, Scholar s, and Schizophrenics: Mental Illnes s in Rural Ireland. Berkeley CA: Uni ve rsity of Californ i a Press. 1987 'Mental' in "Southie': Individual Famil y and C ommunity responses to Psychosis in South Boston. Culture Medicine and P sy chiatry 11 : 53-78. Schultz Jane 1978 The Parent-Profes s ional Conflict. In Parent s Speak Out: Growin g with a Handicapp e d Child Ann P. Turnbull and H. Rutherford Turnbull ed s Pp. 29-36 Columbu s, OH : C harles E. Merrill Publi s hing Schultz Majk e n 1995 On Studying Organizational Cultures : Diagnosis and Understanding. New York: Walter de Gruyter. Schwartz Theordore 1981 The Acqui s ition ofC ulture. Ethos 9:4-17 Schwartzman. Helen B. 1993 Ettm'ography in Organizations Vol. 27 Newbury, CA: Sag e Publication s 2 2 2

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Schwartzman, Helen B., Anita W. Kneifel, Linda Barbera-Stein, and Eliana Gaviria 1984 Children, Families, and Mental Health Service Organizations: Cultures in Conflict. Human Organization 43(4):297-306. Shermyen, Anne E., ed. 1993 Florida Statistical Abstracts. Gainesville, FL: College of Business Administration, University of Florida. Shweder, Richard A. 1985 Mentrual Pollution, Soul Loss and the Comparative Study ofEmotions. In Culture and Depression. Arthur Kleinman and Byron Good, eds., Pp. 182-215. Berkley, CA: University of California Press. Silver, Starr E. 1989 A Comparison of Children with Serious Emotional Disturbances Served in Residential and School Settings. In 2nd Annual Research Conference Proceedings. A System of Care for Children's Mental Health: Building a Research Base. Alissa Algarin, Robert M. Friedman, Albert J. Duchnowski, Krista M. Kutash, Starr E. Silver, and Michael K. Johnson, eds. Pp. 249-277. Tampa, FL: Research and Training Center for Children's Mental Health, Louis de la Parte Florida Mental Health Institute, University of South Florida. Silver, Starr E., et al. 1990 The National Adolescent and Child Treatment Study (NACTS): A Comprehensive Description of Children with Serious Emotional Disturbance s Served in Mental Health and Educational Systems. Tampa, FL: Research and Training Center for Children's Mental Health, Louis de la Parte Florida Mental Health Institute University of South Florida. 1992 A Comparison of Children with Serious Emotional Disturbance Served in Residential and School Settings. Journal of Child and Family Studies 1(1):43-59. Slosson, R. L. 1982 Slosson Intelligence Test (SIT) and Oral Reading Test (SORT) for Children and Families. East Aurora, NY: Slosson Educational Publications Inc. 1983 Slosson Intelligence Test (SIT). East Aurora, NY: Slosson Educational Publications, Inc Smith, Lori R. C. Clifford Attkisson and Abner J. Boles 1993 The Robert Wood Johnson Family Mosaic Project Evaluation, Challenges, and Future Directions. In 6th Annual Research Conference Proceedings. A System of Care for Children's Mental Health: Expanding the Research Base. Cindy J. Liberton, Krista M. Kutash, and Robert M .Friedman, eds Pp. 49-52. Tampa, FL: Research and Training Center for Children's Mental Health Louis de la Parte Florida Mental Health Institute, University of South Florida. 2 2 3

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Sparrow, S. S., and D. V. Cicchetti 1987 Adaptive Behavior and the Psychologically Disturbed Child. The Journal of Special Education 21:89-100. Spindler, George D., and Louise Spindler 1990 The Inductive Case-Study Approach to Teaching Anthropology. Anthropology and Education Quarterly 21 (2 ): 106-112. Stake, Robert E. 1978 The Csae Study Method in Social Inquiry. Educational Researcher Feb.:S-8. 1994 Case Studies. In Handbook of Qualitative Research. Norman K. Denzin and Yvonna S. Lincoln, eds. Pp. 236-247. Thousand Oaks, CA: Sage Publications. Stroul, Beth A., et al. 1997 State Health Care Reforms: How They Affect Children and Adolescents with Emotional Disorders and Their Families. Journal of Mental Health Administration 24(4):386-399. Strout, Beth A., and Robert M. Friedman 1986 A System of Care for Severely Emotionally Disturbed Children and Youth. Washington, D.C.: CASSP Technical Assistance Center, Georgetovm University Child Development Center Suttles, Gerald D. 1968 The Social Order of the Slums: Ethnicity and Territory in the Inner City. Chicago: The University of Chicago Press. Todd, Carol L. 1994 Involvement of Adolescent s with Severe Emotional Disabilities in Correctional Placements: A Multivariate Approach. Ph.D. dissertation, Department of Special Education, University of South Florida. Topper, Marin D., and Jackie Curtis 1987 Extended Family Therapy : A Clinical Approach to the Treatment of Synergistic Dual Anomie Depression Among Navajo Agency-Town Adolescents Journal of Community Psychology 15: 334-348. Topper, Martin D. 1992 Multidimensional Therapy: A Case Study of a Navajo Adolescent \\rith Multiple Problems. in Working with Culture: Psychotherapeutic Interventions \Vith Ethnic Minority Children and Adolescents. Luis A. Vargas and Joan D. Koss-Chioino, eds. San Franci s co: Jossey Bass Publishers. 224

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Yin, Robert K. 1981 The Case Study as a Serious Research Strategy. Know ledge: Creation, Diffusion, Utilization 3:97-114. 1989 Case Study Research: Design and Method. Revised. Newbury Park, CA: Sage Publications. 1993 Applications of Case Study Research. Thousand Oaks, CA: Sage Publications. 1994 Case Study Research, Design and Methods 2nd Edition. Thousand Oaks, CA: Sage Publications 1998 The Abridged Version of Case Study Research: Design and Method. In Handbook of Applied Social Research Methods. Leonard Bickman and Bebra J. Rog, eds. Pp. 229-259. Thousand Oaks, CA: Sage Publications Zeigler-Dendy, Chris A. 1988 The Invisible Children Project: Methods and Findings. In 2nd Annual Research Conference Proceedings. A System of Care for Children's Mental Health : Building a Research Base Alissa Algarin, Robert M. Friedman, Albert J. Duchnowski, Krista M. Kutash, Starr E. Silver, and Michael K. Johnson, eds. Pp. 360-366. Tampa, FL: Research and Training Center for Children's Mental Health Louis de Ia Parte Florida Mental Health Institute University of South Florida. 2 27

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APPENDICES 228

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Appendix 1. The Study Question for the Exploratory Multiple-Case Study. SECTION I: What is to be explored ? The general area of inquiry is children and youths who have serious emotional problems, and the relationships they and their families have with the systems that care for this population Of more particular interest is how and why one child who has serious emotional problems, as part of a family, has a successful outcome as a youth in the community; while another similar child, as part of a family, does not have a successful outcome as a youth in the community ; and how the relationships with the system contribute to the outcomes Other factors not connected to the formal s y stem of care within the family or in the community are of interest in determining why a child may have a successful outcome as a youth. SECTION II: The general area of inquirv suggests a number of questions. these are: 1. How is the service system related to the eventual success or failure of the child/youth in the community? 2. How does the family find out about services, locate and access services and deal with or interact with the services once they are being provided? 3. What does the family e xpect to contribute in their interac t ion with the s ervices provid ing care to their child/youth? How are thes e expectation s met and ho w have th e s ervic es reacted to the family' s expe ctation s ? 4 How do the famil y members' opinion s of their child/youth 's problem s and need s impact th e care of the c hild/ y outh ? 5. How do cultural and s ocioeconomic fact o rs influence th e family and child/youth's acces s to and r e action with s upport systems (formal and informal) ? 6. How doe s the identification as a family with a member who has a mental illn e s s influence th e family's b e havior and selection of support and care ? 7 How does the add e d s tre s s of a child/youth with a se riou s emotional di s turban c e contribute to the famil y s deci s ions about the care of the child/youth and other family members? How ar e other famil y needs influenc e d by the child's problem and how are the s e needs addre s sed ? (12-3-91 ) 229

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Appendix 2. Informed Consent Form, Parent. 23 0

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Research and Training Center for Children's Mental Health Improving services for children with serious emotional disturbances and their families NATIONAL ADOLESCENT AND CHILD TREATI\1ENT STUDY PARENT INFORMED CONSENT FORM FAMILY CASE STUDY The purpose of this research is to learn more about the young adults and their families who have participated in the National Adolescent and Child Treatment Study for the past six years. The goal of the study is to improve services and develop better ways of helping young people in these programs. The research is conducted by Jini M Hanjian, Ph.D candidate in the Anthropology Department, University of South Florida, as part of her graduate program. I understand that I will be interviewed and asked questions about my child's experiences in these programs, my family's participation in his/her treatment and my family's personal history. There will be a series of interviews over a four month period that will take approximately 1 to 3 hours for which I will receive $25.00 each month (a total of SlOO). I understand, also, that my son/daughter will be interviewed and asked about the programs be/she took part in and his/her personal history. I understand that the interviews will be audio tape recorded and that I may review a draft of the case study repon. All of the information, including any audio tapes collected will remain private in the posse ssion of Jini M Hanjian. I will not be identified by name in any repon. I have had the opportunity to ask questions about the study. I understand that my panicipation, and that of my child, is voluntary. I may withdraw from the study at any time I also know that I can choose not to answer any questions that I am asked and that I can stop the interviews at any time. I understand that this study will not extend beyond 1992. I voluntarily choose to participate and to have my child participate in this s tudy. Parent Name (Print) Parent Telephone Number Parent Address Parent Social Security Number Child's Name (Print) Child's Social Security Number Parent Signature Witness Signature/Date Aor ida Mental He:Uth Institute, University of South A o rida, 13301 Bruce B. Downs Boulevard, Tampa. Florida 33612 (813) 974-4500; FAX (813) 974-4406 231

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Appendix 3. Informed Consent Form, Subject. 232

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Research and Training Center for Children's Mental Health Improving services for children with serious emotional disturbances and their families NATIONAL ADOLESCENT AND CHILD TREATMENT STUDY SUBJECT INFORMED CONSENT FORM FAMILY CASE STIJDY The purpose of this research is to learn more about the young adults and their families who have participated in the National Adolescent and Child Treatment Study for the past six years. The goal of the study is to improve services and develop better ways of helping young people in these programs. The research is conducted by Jini M. Hanjian, Ph.D. candidate in the Anthropology Department, University of South Florida, as pan of her graduate program. I understand that I will be interviewed and asked questions about my experiences in these programs and my personal history. There will be a series of interviews over a four month period that will take approximately 1 to 3 hours for which I will receive $25.00 each month (a total of $100). I understand that the interviews will be audio tape recorded and that I may review a draft of the case srudy report. All of the information, including any audio tapes, collected will remain private in the possession of Ji.ni M. Hanjian. I will not be identified by name in any report. I have had the opportunity to ask questions about the study. I understand that my participation is voluntary. I may withdraw from the study at any.time. I also know that I can choose not to answer any questions that I am asked and that I can stop the interviews at any time. I understand that this study will not extend beyond 1992. Subject s Signature Witness Signature Subject's Social Security Number Date Florida Mental Health Institute, University of South Florida, 13301 Bruce B. Downs Boulevard, Tampa. Florida 336U-3899 (813) 974-4500 ; FAX (813) 974-4406 233

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Appendix 4. Exploratory Multiple-Case Study Mini-Ethnography. Purpose: Case#: ----To try "to understand (and even imaginatively perceive and feel) the illness experience as the patient understands, perceives, and feels" (Kleinman 1988:232). MINI-ETHNOGRAPHY Level I: A. B. Reconstruct the youth's (parent's) illness narrative. Assemble the particular events into a more or less integrated story line. Look for how the youth's (parent's) narrative shapes the meaning of particular events. 1. How does th e youth's (parent's) narrati ve c reate th e experience? 2. What are th e per s on's special concerns-cognitive, affec t ive moral -that he /s he brings to th e eve nt s described and the you th's career. C. Analyze and interpret the story's four types of meanings. 1. Symptom symbols symptom as sy mbol, and context as text (pg. 42). 2 Culturally marked disorder cultural salience for the particular time and society (pg. 18-30). 3. Personal and interpersonal significanceillness embodied in a particular life trajectory, environed in a concrete life world (pg. 31-55). 4 Explanatory model-notions about the specific illness episode (pg. 5). 23 4

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Level II: A B. c. D E. F. Appendix 4. (Continued). Consequences to the youth and family. Elicit information on the impact of the illness on the family, youth, work, school and other important aspects of the social context. Try to recognize and sort out the chief consequences of the illness in the youth's personal and social world. Have any menacing life changes or breakdowns in the social support net\vork or failures in coping contribute to the onset of the illness and, more particularly, to exacerbation? What are the major continuities and changes in the youth's and family's life ? What is the youth's and family's local social system? How has his illness influenced that context and how has the context influenced the illness? What are the strengths and accomplishments of the youth and family? How have they influ e nced the illnes s ? L e vel III : The current psycho s ocial problem s as s ociat e d with the illness and it s treatment. A Identify difficultie s in these area s for both the youth and family : 1. marital and other family c onflicts 2. work problems 3. financial burdens 4. s chool problems and examination failure 5. difficultie s in the negotiation of activities of daily livin g 6. problematic psychological r e spon s e s ( e .g. demora li zation anxiety, phobic avoidance maladaptive denial) B All of the above is included on the illne ss problem list. What other probl e ms ha v e th e youth and famil y had that s hould be added to the list? 235

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Level IV: A. Appendix 4. (Continued). Interventions undertaken to help the youth and the family resolve or lessen the problem. Formal interventions: 1. psychological/psychiatric 2. family counseling 3. social work 4. job counseling/rehabilitation 5. formal rehabilitation for activities of daily living 6. biomedical 7. school based 8. legal aid 9. social services (include financial) 10. other. B. Less formal interventions: 1. diet 2. exercise 3. life style 4 non traditional healers 5. help with life burden's and health care system that create frustration and rage 6. other. C. Outcomes for all interventions: (1-27-92) 1. What were the goals of the illness interventions and disease treatments? 2 What were the overall outcomes of the illness interventions as well a s the disease treatments? 3. What were the untoward side effects and to x icities of the illnes s interventions and disease treatments? Modified from: Kleinman Arthur 1988 The Illness Narratives: Suffering, Healing and the Human Condition. New York : Basic Books Inc 236

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Appendix 5. Case A Report: The Dodds' Story I had to kick up my feet and te1l 'em. They didn't tell me, I told them when it involved my child. And tellin' me that there was a waitin' period that he wouldn't get in that year and I told them a year can make a hell of a lot of difference in a small child. And I said, he will get in to start fall. (Dana Mae Dodd explaining how she got her son into the DEES Center a year earlier than the school personnel thought possible.) The first time I talked to Dana Mae Dodd on the telephone she told me she really liked the idea of telling the story of her boy's problems in her own words". We set up an appointment for a week later. I drove out to her home in Lithia on January 29, 1992, taking I 75 to State Road 60 which goes through Brandon then drove 13 miles to State Road 39 and went south. Dana Mae's house was a little over thirty miles from USF in Tampa. This is where I got lost; I think I missed the first left turn on to Keysville Road -I'm not really sur e to this da y where I went wrong. Like a lot o f Florida county road s the s e road s curv e and turn, and cros s -road s seld o m ha v e road sign s B e ing a city girl" it took me no time at all to g et thorou g hlv lost. T he are a wa s like most of the interior of --' central Florida I w a s dri v ing through field s, orange gr ov e s, occasional clusters of bu i ldin g s and off at a distance I could see lar g e mound s of dirt I knew those were the phosphate m ines located in the ar ea. I back tracked and the second time I mad e all the corr e ct turns and twist s I turned onto their neighborhood access road about half an hour later. The neighbo r hood was a mixed collection o f houses and trailers some very small and other s lar ger, s ome were quite old and other s were of newer cons truction. All of the three dozen houses and trailers had lar g e yards and most were s urrounded by tall chain link fences T h e neighborhood wa s surrounded by fields and stands of s outhern pine tree s An active railroad track ran along the back yards of the b a ck row of hou s e s and tra i ler s 237

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Appendix 5. (Continued). Dana Mae's house was in this row of houses. When I parked m y car on their driveway in front of the fence and honked my hom, according to Dana Mae's instructions, a small woman in her late 40's and a large teenage boy immediatel y cam e out of the carport door. Their house was a small ranch style house faced with red brick. There were oak trees, orange trees and large overgrown bushes in the yard, and a large light brown dog. Dana Mae was very friendly and introduced herself and Chuck. As we walked into the house she carried on a animated dialogue about Chuck, the house, the dog (and a second smaller dog), and the drive to their house. Chuck said a quiet "hi" and left the conversation up to his mother. We entered the utility/kitchen/dining room from the carport. To the left was a scr eened porch and back yard, and to th e back was th e living room with a hall le adi n g to the bedrooms. The rooms were small, clean, and there was clutter on all the furnitur e and counter surfaces. Dana Mae talked about how difficult it was to get he r housekeeping done because she works "swing-shi ft and only has Tuesda ys and Wednesdays off We settled on the two love seats in the liv ing room The room felt comfortable and well lived in A s mall toy train was on the floor in front of the TV and blocking the front door. On the wa ll s were family pictures and a display of wicker trivets and white s tuffed bea rs. We did all of the intervi ews in this room over the next few month s Dana Mae is short (less than five feet) and with a matronly figure and s hort curly brown hair. She usually wore a tee s hirt and slacks. She was always animated and talkative with a friendly but no non se n se manner. Chuck i s tall and overweight (later he told me he was six feet two inche s and 310 pounds). He always gave the impres s ion of moving thinking and talking s lowly (he also mentioned this trait to me) He let his 238

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Appendix 5. (Continued). mother do the talking during this first meeting when I explained the Case Study and their part in it. During the NACTS (Wave 7) interview with Dana Mae out of the room, Chuck was friendly, talkative and spoke in a slow deliberate manner and at times bragged about his size and activities. After about two hours I left Dana Mae and Chuck with the completed NACTS interview in my briefcase and next week's appointment on my calendar. We said goodbye and I drove off \vith them waving to me. I made it back to the big city without getting lost. The Mother's Story This next section tells Dana Mae's story about how she took care of Chuck when she found out he was having problems at school. In addition, I examine what she said she believed was wrong with Chuck, how s he worked with the school personnel and psychiatrist over many years, her under s tanding of Chuck s service outcomes and her hopes for Chuck's future. Dana Ma e was always very forthright about her ideas and actions. She said her willingness to take part in the interviews wa s "wanting to help the kids anyway she could". If their story would help people understand what it was like dealing with the school system special education programs she was happy to help. The Beginning-Bearing From the Professionals One of the main questions of the NACTS survey was the age of onset of problems for the children Chuck was fir s t identified as having problems at age 7 and first recei ve d services at age 8. During the case study interviews I had the mothers describe in detail how they found out their sons were having problems and what happened at that point. 239

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Appendix 5. (Continued). Dana Mae was quite clear about when Chuck first started to have problems and what happened. This is how she explained it. J: When was the first time you or anyone else decided that Chuck was having problems bad enough that you felt something had to be done? DM: Well, it's when he was in the third grade I think it was at Pinecrest Elementary School, he just was a bold person. J: He was ... ? DM: Bold, very bold. You have to excuse my Yankee talk. We noticed he was getting very aggressive. J: So as a third grader he was ... ? DM: Aggressive, he was always starting trouble. J: He was about eight? DM: Y es H e was always starting trouble and then go whine and cry, .. so I knew that somethin g s omewhere was wron g But when he was born and whe n he was an infant and a toddler there was never nothing abnormal. It was just I don t know what made it click J: At about that age do you fe e l that he actually changed in his behavior or his personality? DM: Yes he was just a little s notlip in plain E n g lish cause I've never had no problem a s far a s handling him and then the teach e r s would call me and gripe and complain at the beginning of it. And at the beginning of it I told them, I s aid, "Hey, that's what you get paid for you figure it out Of course I shouldn t have done that but you know, then as it started to progress then I s aid "Oh-Oh" You know, there s something wrong somewhere. J : So the first two year s of his school you never got complaint s like that? DM: No. It was jus t like click", lik e somebody pulled the chain Dana Mae said that she did not h a v e an y problems Chuck before the teachers began to tell her there wa s a problem in third grade. She had an older son and compared Chuck to his older brother, sa y ing: 2 40

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Appendix 5. (Continued). Just a regular average normal baby wasn't nothing no different from him ... the way I could compare him is from my first son There was nothing different. He was just a mischief as the rest of them. .. brat like the rest of them. I didn t see nothing different. Well they had they're different ways when they were that age. Like I say, Chuck he was more mischief, he would take thinks apart, see how they went back together again. She did not see Chuck's behaviors as a problem. She said, I been so used to it, it would be nothing out of the ordinary to me". As Dana Mae explained, Chuck was full of m ischief but he was not a bad child She was used to his beha v iors and explained there was "discipline" in the family such as strict bedtimes and putting awa y his toys. Dana Mae's initial reaction to the teachers telling her Chuck had a problem around age 7 was to tell them it was their problem and they should be able to handle it. Her second reaction was quite different, but just as fervent, she explained: Well, its my child. If I give up on him, he going to go? There's too man y of them out there now running around, drug addicts prostitutes, males and females and it's a shame it's getting worse but ifs worst now than it was when he was younger but there's still there was some out there that people didn t know about. And if I didn't stick up for him, his dadd y took off and left don't know whether he's living or dying-don't give a shhhh dookie. I'm the only one, and you know, I reared him, I carried him nine months. It's my child and I do, you know, what I think I can do till I die I guess. This was also the point that she began to take action, the first time getting him help from the public health center. Chuck received counseling and medication from a psychiatrist and from a "student" psychiatrist. She explained what happened with the psychiatrist: We did it for three vears believe it or not. I went three vears \Vith him The first of -it there, they said he was hyperactive. Which, you know what it means, but you know some children can handle it and some can't. He just wouldn't stay still, he wouldn't be quiet, and always causing trouble. In the beginning of it, they gave him Ritalin. Cause that helped but..." 241

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Appendix 5. (Continued). Her second action was to begin to get Chuck signed up and into the DEES Center before the start of the next school year In fourth grade he was in emotionally handicapped (EH) classes for one hour a day and Dana Mae felt this was not giving Chuck enough help. She heard about the DEES Center from a teacher and became detennined that Chuck should be enrolled in the day treann e nt program as soon as possible. By the end of Chuck s 4th grade year Dana Mae made sure he was signed up to stan at the DEES Center for 5th grade. This proved to be a more difficult task than getting help at the health center. J: Ok. Now how about the school sending him to DEES? What was your goal in having him go to DEES?" OM: You don't get into DEES easy. But the guidance counselor up there to Pinecrest told me that it was his best interest, before it got too far out of hand, to go but she couldn't do it on her own. They can only recommend it and suggest it. She told me I had to get behind it whether I had to get nasty or not she say's you do what you gotta do" so I squawked. I told them, that's my baby son and I'm not waiting another vear to get him in I want him in now whether vou have to hire another J teacher to do it you're going to do it. J: What was it that DEES \ Vas going to do for him') DM: Well, these other schools, the classes they got twenty-eight to \Vhatever students. The DEES Center they have two teachers for seven children So he would get his attention for his attention span and get what he needed for his hyperactive. You know. The:y could spend more time him and make him feel better about himself Then whatever problem he had, ... they got substitute teachers plus the regular teacher. So if there was one or t\VO children v.,ith the same problem that needed a little more extra attention than the whole seven of them, then they had them in one section J: And is that what you still think he needs out of the DEES Center? DM: Yeah. Well he ain't quite as bad as he was \vhen he first went in. 242

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Appendix 5. (Continued). By 5th grade Chuck was receiving counseling and medication from the health center and was attending the DEES Center. As Dana Mae said, she never had a problem getting services because she was not afraid "to kick up my feet and tell 'em" what she wanted The Professionals' Explanations and the Mother's Beliefs When the teachers and the psychiatrist first identified Chuck, a s SED it was for behavioral problems, such as being aggressive unable to sit still and not being able to concentrate. Both the teachers and the psychiatri s t initially told Dana Mae that Chuck was hyperactive He received Ritalin for six months when he was eight because of this diagnosis. One of Chuck's teacher who knew him since 7ili grade, whom I interviewed, described him this way: Chuck is a frustrating child Very capa b le, but very unmotivated He has his ups and downs This year at the beginning of the year was the best I had ever seen him doing. But the la st 18 weeks has been down hill. I don t know where he's go mg. Chuck s problem is his attitude it is the worst. He is very defensive everything is negative. He is a very negative personality and he has very delayed soc ial skills. He varies good and bad it s not important to him. Chuck is not [physically] aggressive and seldom uses profanity at least I haven t heard him. He gets livid pout s and shouts but he never on purpo se throws things. He is a miserable person He sets himself up to fail. He wants to go to regular high school but I don t know if he could, his behavior is so bad and uncontrolled He says he hate s it here but I think he finds it a safe and secure environment. Dana Mae ha s always been aware of the teachers and psychiatrist s views of Chuck and hi s behaviors She was very interested in what the educational and psychiatric tests said about Chuck at a young age. Although she did not always get a 243

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Appendix 5. (Continued). clear idea from the psychiatrists and teachers about what they believed was wrong she mostly agreed with their assessment of Chuck s behaviors as she explained below : J : Did they ever test Chuck? Give him an y kind of like psychological tests ? OM: He's had all kinds of tests especially at the psychiatrist's. He's had all kinds of tests that you can name from the word go Whatever there was available I made s ure my son had it. J : And did she [the psychiatri st) ever s a y what those tests were telling her? OM: Yea that he had something in the back ofhis mind that he reall y didn' t under stand himself. And you know, he didn' t understand his 0\\111 behav ior. And it was just like she said-a matter of time that eventually it would come out But, like I say, some of them conversations like he said, "Don't tell m y momma and you know just like a lawyer she can't. But then she could say certain things in a roundabout way, if I could catch it I'd catch it, ifl didn't that was my probl e m J : Did they ever mention hyperactivity after that? After they fini shed with the drugs ? Did they feel he was continuin g that? OM: No, after that six months on that Ritalin he kind of calmed dov..n a littl e bit. He wa s still hyperactive but not as bad as he was He could sit dO\\TI for an h our without getting up J : So it wasn't lik e you see the little hyperactivity kids where they g o from one plac e to th e next and s o he had stopped that b ehav ior? OM: Yea he kind of calm e d down on that. J : So it wasn't a matter that an ybody s aid "Well, XYZ is \\Tong ? DM: No. There must ha v e been a little monster behind there s omewhere that ju.su decided to come out or s om e c onfounded thing. C au s e h e still he even at his age now he still got -I can't even think of the word I want to use. He still g ot a b ad attitud e but h e can control it where before be couldn't. I s was \ ery, \ ery bad wh e n he was y ounger. Dana Mae d es crib e d C huck s mor e c urrent beha v iors and how s he handle s thin gs when h e gets Yerbally aggr e ss i v e :

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Appendix S. (Continued). Well he just gets a little you know, just a little rowdy about it and gets a little bit excited about it. His voice will raise a little bit but see that don't that don't get it with me, so I mean you know I just let him know about it and tell him about it and tell him how he better act or else. But see, he does a lot better here than he does you know, at school because of you know sometimes its complex. But see, I've never had no problems with handling him at all. I've never had to get physical or violent or anything. Just like I said he's just an ordinary boy, he' s just a little hyper once in awhile but I mean you've got people walking on the streets everyday that's like that commitin crimes. But he knows enough to control it and he knows enough that when he gets a little bit overboard and he knows enough to apologize." That's the point, when I had to get in and explain what he's doing and tell him to stop and listen to how he sounds And tell him that it's not necessary and people are not going to tolerate it. And I said especially your mamma ain't, you know. But it was not nothin I couldn't handle and it didn't drive me crazy and I didn t have to like I said, pop pills or anything like that. Because when he got overboard when there was no reasoning to him I wasn't afraid to use that hand. Dana Mae understood that all ofthe children in the DEES Center were classified as mentally disturbed and she understood that because Chuck was in the DEES Center the teachers classified him this way. She did not think that Chuck was mentally disturbed she believed he had behavior problems but thought they were a different thing. During a conversation where Dana Mae was describing the children at the DEES Center s he defined the term mentally disturbed and made the distinction between that tenn and her understanding of C huck's behaviors : J: So you never felt that Chuck was mentally ill? DM: No, he's not, there's a difference He s got a behavior problem, but he s not stupid and he s not mentally retarded and he s not vicious but he has an attitude But the difference between my s on and some other people, is he knows when to control it. But I mean if you make him mad, he s not going to call you everything under the sun you'll understand what he s say in' but he 'll let you know J : This is how you see Chuck s behaviors ? 245

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DM: J: DM: J: OM: J: OM: J: DM: J: OM: Appendix 5. (Continued). Right. So, I mean, he's not vicious. He's got a bad attitude and that bad attitude is giving him a bad look on life. But he's not violent. He's not mentally retarded 'cause he's got a high IQ. He can read. He's a good reader. He can out read the teachers and he's a good speller. So, he's not mentally retarded. So, it's this attitude that you think kind of interferes with rum using his brain, basically? Yeah. Well, this is what 1 mean down here at the DEES Center, they classify everybody as mentally disturbed and that's not so. To have a behavior problem you don't have to be mentally disturbed. I mean, they've got professors and congressmen and a lot of people that's got bad attitudes. But they're not mentally disturbed, it's two different categories as far as I'm concerned_ And they category them all the same way. Okay. When you talk about behavior problems, how would you define a behavior problem? A behavior ... well, what Chuck, I mean, you know, trying to be a clown or be the big bad wolf is the only way he knows how, back then, to get attention. I mean, that was ills behavior. He'd go around, go about it the wrong way. Instead of being good and doing good to get praise, he figured he had to act like the clovvn. And when people hollerin' at rum and everybody had to pay attention to rum 'cause he was being disciplined. That's how his behavior was. Do you think in misbehaving he felt he was getting attention? Right. That was his problem How would vou define mentallv disturbed? J People that don't know right from \vrong. That's my opinion that don't give a damn. Don't have supervision. Has never been taught to understand. I mean, I'm not a psychiatrist, but that's my view. So, you feel that the difference with Chuck is that he really honestly understands his behavior. He understands what he's doing, even when he's very angry. Right. Yeah. He understands. It's something that he has to learn to control. 246

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Appendix 5. (Continued). Working with the Professionals One of the major concerns of the case study research question was how the parents interacted \vlth professional caregivers. We have already seen how Dana Mae initially reacted to the news that Chuck was having behavior problems and her subsequent actions to get him services. Dana Mae had a very definite style of interacting with the teachers and the psychiatrists. She when asked if she got the services she wanted, she described it this way: I got what I wanted because I demanded it. I din 't ask, I demanded it. When it came to my young'un. And then of course I had a lot of support too because they figured that if I was than much interested in m y child that they was going to give me everything possibly available for him. I didn't have nobody denying me nothing once I got started. Dana Mae took a step early on in Chuck's treatment \vlth the psychiatrists that could be described as acting as a case manager" for her son. She never described it in these terms but she was determined to work with both the teachers and the psychiatrist and wanted them to know what the other side recommended. On a weekly basis she took information back and forth from the teachers to the psychiatrist and back again. She felt this was a very successful and necessary activity of her part, she describes it like this: J: So how was it dealing with the psychiatrist? DM: I didn.t have no problem with it. It didn't bother me. I mean, they just got my point of view on what was happening you know, week from week and then they d have a session \vlth Chuck. It was an hour session every time we went. It'd be fifteen-twenty minutes with me and then thirty minutes with him and then ten minutes toeether whatever the case mav be. You know what I mean'? It wasJ course with me being on swing shift that made it hard. But I would always seem to make it on my dam days off. So that I didn't miss one. I mean I was faithful. ,'\nd w hen they talked to you, did they e ver give you techniques for dealing with him ' 247

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Appendix 5. (Continued). DM: Well, we worked togetherthey would tell me what they suggested and I would carry it through. And then if I had an idea that whatever they discussed wasn't quite working out we'd try to compromise. J: What kind of things were you trying out? DM: Well, you know, discipline and if he showed his butt, you know, send him in his room until he felt that he could come out and handle himself, or give him an extra chore to do or you know, it was different things that we tried different ways you know. He couldn't -if he misbehaved in school and went to the session there and cause the teachers they wrote -I had the teachers V\rrite me a progress report every week. They had to go out of their way to write a progress report every week to give to the psychiatrist. I didn't want them just taking my word for it. J: Would he change his behavior at home and at school? Would he have different behaviors? DM: Yea, like Doctor Jeckel and Mr. Hyde because he knew that school couldn't lay a hand on him but he knew momma could beat his behind. You see what I'm getting at? J: Yes, so sometimes he'd try and get away with things. DM: He thought he could get away \\'ith things at school but he knew he couldn't get away with at home cause momma'd bust his butt And then he'd go "ha ha ha, you can't hit me" but then the teachers would ca11 me up and tell me what Chuck would do before he'd even get home off the bus. And then when he'd get home then he'd say "Well how did you know?" But see we were very close knit when it come to my son. J: You and the teachers? DM: Teachers and then when I had my sessions at the psychiatrist, I'd call them up and tell them what went on and what she [the psychiatrist] suggested and what she thought would work. I'd call the teacher up and tell her. Because I told her, I said "If we're going to do this, and find out what's wrong-" I said"all three of us need to do it the same way. J: And that was your idea? DM: Yes ma'am. There was no sense them pulling him one way, I'm pulling him the other and the psychiatrist is in the middle. Which way do I go? J: So you coordinated it? 248

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Appendix 5. (Continued). DM: Yes ma'am, yes ma'am. Then if they suggested something, I'd take it with the psychiatrist and tell her about it and ask her how she felt But see, it had to be both ways, I couldn't do what she suggested for me to at the house, and then they go and do something different at schooL Then the child wouldn't know which way to go. So it had to be consistency and it had to be whatever for that whole week and then at Friday, the last day, then they'd [the teacher] write me a report with the psychiatrist's name on it and I wouldn't even open it I wouldn't even open it until we got there, and she opened it and read it, and then of course she'd say "Well did you read what they wrote?" I said "No it was sealed vvith your name on it". You know, so I said if they wanted me to read it they wouldn't have sealed it J: Did anybody make that suggestion that you coordinate like that? DM: No. J: That was your idea? I think that's a really marvelous idea. DM: That's the way I figured we should do it because I felt my child was being pulled and it was getting too much on him. He said you know "This is driving me crazy" and I jus t figured you know, whatever way the school felt bes t to handle it I'd do it the same way at home, wouldn't let up on him. And you know we'd try certain things a certain way but if it was too much demanding then we'd back off a little bit But then if he got out of hand he knew what to expect J : Working with both the teachers and the psychiatrist, do you feel like you picked up on some technique s? Did it help you learn some ways of dealing with this? DM: Well just like they told me, I'd be a good psychiatri s t We just had the same wavelengths. And it jus t I guess where I was really interested in my child, why this was happening, it just seemed to fall [into place] I had about the same wavelengths that they had other than the medicine Because Ritalin is addictive. I don't care how you put it and that I told them there had to be another way. I said I'm not going to leave my child on a drug that he's going to have to depend on the rest of his life. And that just wasn't going to happen. J: So then after three years why did you decide to stop seeing the p s ychiatrist? DM: Well he was getting so he was handling himself fairly welL That he could handle his situations a little bit better and that they really didn't, he reall y didn't need to go. I felt that he reall y didn't need to go. He can't depend on a psychiatrist either for the rest ofhis life. I mean you know, you put the both of them to g ether, he had to start thinking for himself And he had to start taking his own [consequences] without somebody behind him all the time So we felt, this was a 2 4 9

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. Appendix 5. (Continued). mutual decision -I didn't stop it. This was a mutual agreement between the psychiatrist and me. That we felt, but like she said, "Give it six months" if he got worse I could bring him back This story is the best example of how Dana Mae interacted with the teachers and the psychiatrist. The one area that she disagreed with the psychiatrist was her insistence in taking Chuck off the Ritalin after six months At least according to Dana Mae, Chuck had benefited from the medication and his behavior was calmer ev en after he stopped taking it. The teachers also were willing to work with Dana Mae and this seemed to be of benefit because they were able to coordinate their efforts and be consistent in how Chuck's behaviors were handled. From the teacher I interviewed I understood that there was at times grudging respect for Dana Mae. The teacher put it this way, At first, back when Chuck was in 7th grade, Dana Mae would call every afternoon if everything was less than perfect. Chuck would tell her stories and she would call to defend him. Now we work more like a team and we hear from her more like once a month. She [Dana Mae) seems genuinely concerned. He does get his medicine [for his leg due to the motorcycle accident) when things get serious enough. She is not perfect, but she does the best she can as a single parent. She is better than most of the parents. I see some of the same behaviors in Chuck as I do Dana Mae. Dana Mae understood that she was doing something that a lot of parents couldn't or won't do, and that the teachers did not always appreciate her approach. It was not easy for her to always get the counseling appointments or to meet with the teachers, which is best explained in her words: I was always there when the y called I never made up no excuses and sometimes even on the first shift, if it was necessary, I mean I had to go ... I'd get my regular shoes or whatever ifi wasn t too nasty [covered in dirt from work] and I'd go straight from work to the school. You know, but I always worked close with them. 250

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Appendix 5. (Continued). A Mother's Hopes and Dreams Chuck was close to graduating from high school when I interviewed him and his mother. However, he had missed 21 days of school that year due to his motorcycle accident and skipping school so there was some doubt that he could graduate at the end of the year. He was thinking about quitting high school and then going to night school to get aGED. His mother was adamantly opposed to this plan. However she was tom between wanting him to finish ("Yeah, kickin' him in the butt. Makin' him finish school."), and understanding that he is getting too old for her to control his decisions ("I'm done babysitting you, you sink or swim."). Dana Mae recognized that this was an important transition time for Chuck and that he was still quite immature and really not ready to take up the challenges of adulthood. She expressed her concern a number of times: He's, you know, still doesn't motivate himself like he should and depends on other people too much. Where I'm the opposite. You know I don't take anything for granted, I don't depend on anybody because there's no guarantees So that's how I've survived. You figure raising my children all these years on my own without no help from nobody and keeping my home, and almost 13 years at the job I'm at, so, you know. Of course, his attitude's changed some, but he's still got, you know, a wrong lookout on life still. Well, some take longer than others but for 18 years old he still ain't 18 year-old mature You know what I mean, he's not.. he's still childish, but he's not the only one. There's a lot of 'em. I know some that's 30 and 40 years that's still childish, you know, they're immature. So he still has that to work on. A lot of growing up to do. Probably for the rest of his life. You know, and I've cut down quite a bit now, like him and any other 18 year old that rebels, you know, like I've told him, "he's 18 years old now, don't look at momma to keep making your choices, I'm not gonna do it. Cause I'm not gonna be here forever." And I don't plan on supporting him for the rest of his life. 251

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Appendix 5. (Continued). Two of Dana Mae s strengths were her great tenacity and spirit of being able to get through life no matter what happens Dana Mae is sure to continue to push her son to get his education and begin to work. This is what she had said on the subject: J: Well, you're really kind of at a transition stage, both you and Chuck. I mean, here he has reached age 18 and he certainly could legally stop school if he wanted. DM: Oh, yes, but he knows better. Because he knows ifhe don't get his education there's the door. Don't let it hit you in the butt on the way out. Because I'm not supporting anybody shiftless. Nobody did it for me. And, you know, he's gonna have to get some of his hard knocks. If he don't want to do as I ask, and I don't think I'm asking too much for him to get a high school education. I mean, you know, he's got so many friends around here the parents don't give a damn. The y got their ov.rn life, they feed 'em, they clothe 'em, but that's all they do. And there's more to being a parent than just feeding and clothing them. And just about every one of his friends around here has quit school at 16. J: That's what he was saying, that a lot of his friends are out of school? DM: They're out of school. Oh, they're gonna go to night school. I said, yeah, you got one friend out there, he's a nice guy don't get me wrong, he's 18 years old, but he's been gonna go to night school since he was 16. He's 18 now and he's still ain't gone. I mean, it's easy to say. But you can say an:y1hing, it's to do it. And I told him, I said, if you don't ever do another damn thing for me you will graduate And if you don't there's the door. Because I'm not going to do what these other parents do, have them as a burden. 252

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Appendix 5. (Continued). The Son's Story In this section I tell a part of Chuck's story, specifically why he thought he was in the DEES Center, what it was like going to the Center for school and how he sees his future. Chuck was usually cooperative when I interviewed him. There were two times when I cut the interview short because he was not feeling well and could or would not focus. He delivered his answers in his slow deliberate manner, was always polite to me and sometimes showed off Although I do not discuss it in this section, Chuck had a genuine love and respect for his mother that came thorough in his interviews. Why I Was in Special Education Classes I was interested in learning from the young men what their experiences were like as kids who had been in EH and day treatment cla sses a large part of their lives. I had read material written by parents of children with serious emotional disturbances and adults that had experienced emotional problems and hospitalizations. But I had not seen anything from the child's perspective. One of the questions I asked was what did Chuck think was wrong that he would need to go to the DEES Center for school. Chuck said that as a small kid he had a smart mouth and a "real bad attitude". He went on to say Attitude getting worst. You know I wa s born with a bad attitude and I'll probably die with one. That's the thing right now that's holding me back. [If I changed anything] I wouldn t have such a short temper. I give myself a little more tolerance. Basically that's it. That's mostly why I have my attitude, slightest little thing pisses me off. At another interview Chuck described how and why he was placed in the DEES Center: I was taken out of [regular] school when I \vas in fifth grade. And that was just because of my attitude. I never been in trouble with the law or nothing like that. They put me in there because of my attitude. Its worst now than it was then. 253

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Appendix 5. (Continued). Yeah, my attitude is worst now than it was when I went into the DEES Center. That place has that kind of effect on you. You can ask a lot of the students there Yeah, I knew it was my attitude but I didn't think it was that serious. The only reason I have the attitude I have now is because of that school. See, the more they push me the more it makes me resent that school. And the person that thought of that school ought to be shot. I mean, I think a regular high school is equipped to handle kids like me-you know, that have attitude problems. But that have never been in trouble with the law. See, kids that have been in trouble with the law and has an attitude like me ought to go someplace like Dorothy Thomas or W.T.-something like that. You know, they're way more equipped to deal with that than DEES Center is. Chuck talked a lot about wanting to get out of the DEES Center and how it would have been better to have gone to a regular high school, even if he had to in some EH classes. It seems that it is possible to move out of a DEES Center but there is an elaborate procedure, Chuck explained: J: When you got into high school level which would have been like I guess tenth grade, did you ever have the option to go to a regular high school? C: You can have the choice of going back to regular high school as soon as you get there. It's just you got to go through the system of earning and all that stuff and like being mainstreamed. J: What would you be earning to get to regular high school? C: Behavior wise, you got like to earn, you have to be good to earn to get to go back to regular school. J: So it's sort of-you have to prove that your behavior is ... C: Worthy of going back going to school. Its like nine weeks of good behavior and nine weeks of what they call the E Chart, then it's like another nine weeks of going to the DEES Center in the morning and going to a regular school in the afternoons and then after that nine weeks is over, you just go back to regular school full time. J: Did you ever think of doing that ? Did you ever want to? C: Yeah, I've wanted to plenty oftimes, it s just my behavior wasn't-hasn t been up to par. 254

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Appendix 5. (Continued). Going to Special Education Classes I was also interested in what the DEES Center was like and what it was like for Chuck being in the Center since 7th grade. Part of the problem with the Plant City DEES that Chuck attended was that it was not attached to a regular high school. Chuck found the school experience in the DEES to be very isolating and missed the activities that a regular high would normally have. For instance he mentioned he would have liked to be in the band, be part of a wrestling team and he even missed not having a cafeteria in his school. This is what Chuck had to say: J: ... so part of the problem at the DEES is that it is isolated, it doesn't have all the things a high school should have in it. C: Yeah, it has none of the things high school has in it. I mean you can name one thing that a regular high school has and I can tell you or not if the DEES Center has it. J: Well, I think you have, it doesn't have a cafeteria. C: And there s less than a hundred students emolled at that school. J Most of them are far younger than you are. C: A lot of them are far younger than I am. And only half of them show up So there's like fifty or sixty kids. I mean there's about like eighty kids emolled there . .. And there's a lot, a lot of little kids there. There's like twenty or thirty little kids there. I also asked Chuck about the type of students that attended the DEES Center, he described them: C: Kids that been in trouble with the law, you know, that's like stolen cars, getting in fights all the time, assault and battery and stufflike that. And then there's like petty stuff-you know, like vandalism or tresspassin' and public nuisance You know, just little petty shit like that. And I ain't never been in trouble with the law period 255

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Appendix 5. (Continued). J: You said too, you thought that there were kids that were slower or.. C: Yeah like adapt kids. But they're not-they're in a totally separate program-they ain't got nothing to do with the DEES Center, they're just like going there. It's a different program. J: But it's the same building. C: Yeah, same building but different, different class. J: Are there any other kids there that say, have an attitude problem like you but have never been in trouble with the law? C: Yeah, there's a few there. J: There's a few, yeah. And can you tell the difference? Is there a difference in how they act toward the teachers or each other or anything like that? C: Sometimes yes. Sometimes they can be more aggressive or they can be more quiet. They can be more aggressive because they figure they just don't give a damn, they can go back to jail. And there's the kind that's like on probation you know, so they keep quiet so they don't get i n any more trouble so they can get off probation. When I was interviewing Chuck he was at the point where he saw only negative aspects of the DEES Center. The most positive thing he said was that he liked some of the teachers, he liked the summer jobs he had and the on-the-job training he was receiving and he had a few friends at the Center. He was ready to leave even if he didn't graduate. He commented on the Center and its disadvantages : It's too confining. You know, it's not like a regular school. Even though they try and make it like a regular school, changing classes and all it's too much like a center and that makes me feel, you know, confined cooped up, you know. They serve your lunch to your desk. Yeah. And also I can't get I can get my class ring but all I have to do to get a class ring is go to a store they have class rings at stores. But I want to get my class ring from school. They don't offer that. I mean the la s t tvvo peopl e that graduated, Plant City High donated their rings. 256

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Appendix 5. (Continued). A Son's Hopes and Dreams Chuck had a lot of plans for the future. He was trying to get up his nerve to quit school and go to night school for his GED. He also mentioned any number of colleges and careers he wanted to go into such as becoming a paramedic like his brother, a wildlife officer or a mechanic. Mostly what he wanted to do was to get away from the DEES Center as soon as he could. We had several conversations about his future, the following is an example of how Chuck envisioned his future: J: The next thing I want to talk about are your plans. What are your plans for yourself right at this moment? C: Get my GED, get a job, make some money, then go back to school. J: And, what kind of school do you want to go back to? C: Police academy. Like I said, I have to lose a lot of weight to do that. J: Is there anything else, any other plans for right now? C: Get me a car. J: Two years from now, what do you think your life is going to be like? What will you be doing? C: I'll probably have me a job, have me a car. Hopefully, have me a girlfriend. J: Okay, do you think you'll be living here? C: Yeah. J: Any other things that you see yourself doing in two years? C: Making something of myself. J: Now, this is a stretch. You're what, 18 now? What will you be doing in 10 years when you're 28? C: Well, I'll probably be finished with the academy. I'll probably be down in a squad car some place. 257

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Appendix 5. (Continued). J : AJe you going to be living here? C : No. J : No So, you'll have a place of your own? C: Probably be a trailer or somethin' Somethin' cheap. And I'll probably be married and have a kid. And I should be doing things that families do J: Okay, family stuff? C : Yeah J: So you really envision your life as getting yourself a job and getting married and starting a family. C : Typical stuff 258

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Appendix 6. Case 8 Report: The Brennans' Story There was a time where I thought maybe his problem was my problem Because we were so much alike in different ways but it wasn't anything that ever got serious or out of hand it was just a thought that cros sed my mind. That's about the time I wanted to have those tests done to see if there was something genetic wrong with him But I never did go do it. (Beth Brennan talking about the possible cause ofher son's problems and what she did in response ) When I called Beth Brennan for the first time to ask if she and her so n would participate in the case study interview s she agreed without he sita tion and said she thou g ht it was a good idea to talk about her so n and his school experiences We set up an appointment for the next week and I drove to her home on January 30, 1993 The drive is about thirty miles from USF. I thought this was great, I was able to locate their s treet on the map of Tampa, no country driving for me this time The first time I drove to Beth's home I took I-75 to the Crosstown Express, exited on Gandy Boulevard turned south on Westshore and then right on lnterbay Boulevard. The house is just a few blocks south of Interba y and every street is on the map it was great and so easy to find The last bit of road was paved in old brick and had abruptly changed from commercial warehou ses and businesses to a residential area. I arrived at Beth's house a little earlier than the appointed time and parked in front of an interesting looking wooden house The house looked like it originally it may have been a shot gun cottage (a traditional cottage design in Tampa), and that a number of additions had been cobbled together over the years from a variety of material s The yard was partially surrounded by a brick wall and wa s full of lar ge oaks a swi n g set, play house yard toys, and smaller bushes and trees A large late model car and a truck were parked at the side of the house To the north of the house was a s mall gray building that was a business of some kind To the so uth of the house along the road were old wooden house s a nd hu ge oak 259

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Appendix 6. (Continued). trees, as far as I could see down the brick road. The neighborhood looked old and very modest with the houses in more or less good condition. To the east was the Port of Tampa, and MacDill Air Force Base was to the south of the neighborhood. To the north along Gandy Boulevard was a mixture of large warehouses, apartment buildings and houses. If you go east all the way to Hillsborough Bay the houses become larger and more expensive, and there are fewer small business mixed in with the houses. Ballast Point Elementary School, where Beth's son went for many years, is located in this area Beth told me later that people who know Tampa will tell you this is not a good part of town. The screen door on the porch opened and a very young looking teenage boy looked out and then went back into the house. Then he and a woman came out and greeted me. This was Beth and her son Calvin. Calvin introduced himself\vith a shy grin and opened the fence gate and front door for me. Beth asked me in and introduced me to her older son, who said hello and goodbye and left the house. Beth was short with soft brown hair and a sweet face and smile. She did not look old enough to have children in their mid-twenties. She was always soft spoken and laughed easily. Calvin was small and wiry and wore a baseball cap with the bill pulled dov..n over his eyes He did not look old enough to be 20 years old. He was even more soft spoken than his mother and at times would almost whisper. From the porch we had entered the main area of the house which included a large kitchen table at the back of the room a fireplace on the wall to the left and to the right a sliding glass door. The room was filled \vith lots of chairs, couches, tables, chests and a 260

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Appendix 6. (Continued). large TV that was never turned off although the sound was turned down. Two of the walls had floor to ceiling cupboards and shelves with a neatly arranged display of family pictures and Beth's collection of frogs, every kind, from stuffed animals to ceramics. The walls were decorated with more family pictures, a picture of Jesus and a collection oftractor hats The room was full and well lived in. At the back of the room was a door that led to the bedrooms. To the left was an open entry that led to an L-shaped space which was the kitchen, again full of appliances and furniture. We sat down at the kitchen table (this is where we did all the interviews) and discussed the case study interviews and the last NACTS interview. We signed the consent forms and set up an appointment for the next week. Then Beth left to take one of her daughters, who was pregnant, to the doctor. Calvin and I did the NACTS questionnaires. Right at 12 noon we finished the interview. Calvin escorted me to the door, said goodbye and watched me drive away. The Mother's Story This section is about Beth's story and how she dealt with Calvin's problems and the services he received. She was always cooperative and anxious to get the details of the story correct. This was no easy task because her two other daughters (Calvin's half sisters) and her older son (Calvin's full brother) had all received school services for learning disabilities. Although Calvin first received services for learning problems he was Beth s only child who received services for emotional problems. In addition to her four children, her husband had two daughters from his first marriage, and one of the girls 261

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Appendix 6. (Continued). came to live with them for two periods of time when Beth's children were young. This daughter had severe behavioral and emotional problems and was later diagnosed as schizophrenic. Beth finally wrote down a list of the years all the kids were in school and the services they received and from that tried to figure out Calvin's history. I am not sure we ever got completely correct dates but I was more interested in her experiences with the teachers and did not find this to be a problem for the case study. The Beginning-Hearing From the Professionals I started by asking Beth when was the first time anyone said Calvin had a problem and what was her reaction. She said that it was his kindergarten teacher who first told her that he had a problem and he was five years old. This is how Beth told the story: J: What is the first time and who was the first person that told you Calvin had a problem? 8: It would have been, probably his kindergarten teacher. But they didn't diagnose it as emotionally handicapped until later on in the [his] school years. They just, more or less, in kindergarten they said he was undisciplined, he wouldn't listen andthey blamed it on him being the baby. So, I just thought well that's what it was: he's the baby, I didn't make him mind. I didn't make him listen, so to speak, according to the teachers and I just got it in my mind that that s what it was. And I didn t realize that he really had a learning disability until he got up into the higher grades-and then they sent him through testing. J: So you were called in to talk to Calvin's kindergarten teacher? B: Yeah. Because he couldn't get along \\'ith the other kids, he'd cry, they'd pick on him and he always said nobody liked him, you know he just felt like an outcast from kindergarten on. J: What was your theory of what was going on--what did you feel was going on? 262

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Appendix 6. (Continued). B : I just told them that he didn t mind me any better at home than he did them at school and I just thought it was their responsibility at school to make him mind and mine at home But we just all had a hard time getting him to cooperate me and the teachers all through the years. I would ask him about it and he always said I don't know nobody likes me or they're picking on me if it was something to do with the kids at school or if it was something to do with the teachers at school, that they didn t like him either--he always felt like nobody liked him. That's why he had that attitude : nobody liked him. The Professionals' Explanations and the Mother's Beliefs Calvin began to receive reading help in first and second grades, and he repeated first grade. It was not until the end of 5th grade that he was te s ted by the school psychologist and then was placed in the Ballast Point DEES Center Beth explains what happened and what the school personnel told her they believed was wrong with Calvin: J : So at about seven years old ... B: ... They started detecting it. J : And what is it that they detected ? B: They detected that he was-he didn t want to sit still he was real hyper and he wouldn t li sten. It s not that he was dumb or couldn't learn, it's just that he was too hyper and wouldn t sit still and wouldn t listen He had his own mind and he wanted to do his own thing and he wanted to play around and not study and-so that made him not learn to read as young as the other kids--so then they put him in a special reading class which was called I forgot what it was called, it wasn't EH it wa s something else ... J : LD [learning disability]? B : Yeah, that's it. They put him in LD in the y ounger years J : ... and you think that was again like first or second grade ... 263

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Appendix 6. (Continued). B: Yeah, because they didn't put him in the EH until he was more or less like in the sixth grade. And then it just got worse because they couldn't handle him-he wasn't mean or anything, he was just disobedient, he wouldn't listen, he was just hyper. Okayso in the sixth grade when they got him in the EH program, then they sent him through all the testing, psychologjcal and--well whatever they do through the EH. J: And at that point, they put him in what kind of class? B: Self-contained--EH class with just a few kids. J: Do you know where that was located? B: Yeah. Ballast Point. So actually they upgraded him from the sixth to the seventh just to get him out of grade school--so he was in Ballast Point for four years when he should have only been in there for three. They let him continue on through the tenth grade at Ballast Point. J: So seventh through tenth he was at Ballast Point? B: Right--which would have probably been sixth through ninth if they had kept him in the sixth grade over here at Westshore but they skipped him from the sixth grade to the seventh gradese e what I mean? Okay then when he graduated he went through the eleventh and the twelfth he went to Hillsborough High, they had a special EH class--EH classes there J: Was it all EH or ... B: That was eleventh and the twelfth and then he graduated last year-whatever-June of91. And be s only been through like two or three at the most psychological evaluations-two or three I'm not sure. They always said the same thing they always said that they wasn t anything mentally vvrong with him its jus t that he had a low self-esteem and urn--he was immature for his age. That's all they said, they said that its not that he couldn't learn because he can read and he can write and he can do math real well. And he's smart he can fix things and he's good at making money and handling money so there wasn't anything wrong \vtth him mentally it was emotional... J : Now this is what the school system said? 264

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Appendix 6. (Continued). B: ... Yeah that's what the school system [said]. They--now when he was in the lower grades he wouldn't open up-he wouldn't open up and talk and express his feelings. But when he got into the higher grades like the sixth grade then he started cussing and really verbalizing his feelings and I'd be called to the office all the time and they said well I [you] don't want to encourage him because it's not proper to do this. But, in Calvin's case he's opening up and he's expressing himself, so in that case it was good. But they didn't want to encourage him to continue the language. And so he needed to learn how to have self-discipline that's what they said-he still needs to learn to learn how to do that. But when he gets mad but that's the expressing himself And sometimes-! don t know if you got the feeling from him or not because he might speak up to you but he II mumble to you and hold his mouth like that. Does he do that to you? Well, that was another thing they said too, that he was shy about being verbal--and not having eye contact, the y always said that--he didn t have that when he spoke to somebody. I didn t think I'd remember what the school said! I also asked Beth to tell me what she thought was wrong with Calvin and she also discussed some ofthe behaviors he exhibited that were a problem during his school years. Here are s ome of her thoughts: But they (school personnel] never did find out where they [Calvin's behaviors] stemmed from as far as I know, they never told me. They just blamed it on him being the baby ofthe family and that can t be true can it ? I don t know, there' s a lot of babies of the family that do fine. He was just a baby and we probabl y did everything for him and didn t make him do things. And the kids, like sisters and brothers, they never got along-they always picked on him and teased him but he was the baby and like I said before, he never said anything back So he was easy-and they were always fussing and fighting Mostly normal sibling rivalry and fighting. It was nothing physical or they didn't beat each other up or anything its just pick'en and teas'en ... He was known as the brat. I'm sorry but that's the way it was, at home and at school. That began to be his nickname really. And with the kids it didn't helpmy own kids didn't help, his sisters and brothers, they didn't help me any. He just got to be aggravating until he got up into his teen years and then he sort of mellowed out and started working and making money. He's always had that money on his mind, making money. He was always mouthin' off They [teachers] said that was good that he was expressing himself, but it wasn't good that he wasn't learning how to do it in self discipline. 265

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Appendix 6. (Continued). Calvin got left behind, I guess. That's what it looked like. I don't know. I didn t love him any less than 1 did the others, it's just that, I don't know. Working with the Professionals Beth's style of interaction \vith the school teachers and psychologists was very passive. They would call her in for conferences and talk to her about what they wanted to do next with Calvin. She would go and always agreed with them and then signed whatever papers they put in front ofher. This is how she explained her interactions with the school: J: When you dealt with or interacted with the school people, how did you go about that? Did you call them or did they call you? B: They called me if there was a problem. And they called me if it was time for our .. what do you call it .. interview? J: Appointments? B: Appointments. Yeah, certain time ofthe month there would be certain things that I would have to come over there and we'd have to discuss or review and I'd sign these little papers. J: And what kind of things were they? B: His ... I can't think of what the word is ... you know, his testing. I don't know what it was called though Help me, help me his review. J: His review? Would it be his grades he was getting or his behaviors that they were reviewing? B: It was some big bunch of papers and I'd have to sign it and his SLD I mean, his EH teacher would have to be present, the principal, his classroom teacher ... J: Was it his IEPIndi v idual Educational Plan? 266

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Appendix 6. (Continued). B: Yeah. They'd call me or send me a letter and tell me that it was time for that and then if I couldn't make it, then I would sign this certain part down here saying to go ahead and do it, and review it over the phone \:a,.ith me or send me the information in the mail. Back when I had three of them in services I had to sign a lot. Then if there was any particular problems, like if Calvin was do in' bad in a particular class or he was having a particular problem, then they would call me and I would have to come over to the school. That wasn't too often until he got into high school. J: Then what happened? B: Yeah. That's when he was skippin'. During another conversation Beth discussed how she agreed with what the teachers wanted, and she mentioned some other services she had thought about for Calvin. Again her style of interaction was quite passive, and she said to me a number of times she wish she knew what the tests he was given had said. She did not seem to feel she could have asked the teachers or psychologist for that information. Here is what Beth said about the school services: J: So you felt pretty satisfied with the DEES Centers? B: Yeah. J: Were there any real problems with the DEES Center, either at Ballast Point or Hillsborough that you could see? B: No. Not that I could think of J: So nothing you were real dissatisfied with? B: No. J: Okay 267

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Appendix 6. (Continued). B: I wanted to try to get him on SSI one time because it says somethin' about legal aid or social services. I don't know whether that was SSI, but Victor never would let me go apply for it because he said it would mess him up on his income tax. See, he was thinkin' of himself he wasn't thinkin' well maybe they could help Calvin back then. But he said, well, when you get on SSI do you have to stay on it all your life? J: I don't think so. B: See, we could have help for him. Even ... but um, money wise rather. J: So you were looking to get some money for Calvin? B: Extra ... for more psychological testing or counseling or they didn't never recommend medication, but I just wanted all the help I could get but he [Victor] wouldn't let me. J: Were there things that you wanted Calvin to get that you felt he needed? B: Yeah, I wanted to get him .. .I wanted, remember we was talkin' about this last time? I wanted him to get what you call neurological.. .I wanted the examination of the brain, the head, to see if, where the problem was coming from. If it was something mental, psychological. Something I did, something I did when I was pregnant...or anything I wanted more help. Medical help or advice which we didn't get. J: And the reason you didn't do that was ... ? B : Money, I guess. I don't know Nobody every recommended it. It wasn't paid for through the school and we didn't have the money to do it ourselves. His insurance didn't cover stuff like that. J: And Victor, unles s somebody else could pay for it he was not willing to do it? B: I guess maybe if we had had the money, or if his insurance would have covered it we would have went ahead. J: He would have been agreeable. B: Yeah, 'cause he wanted to know why too. 268

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Appendix 6. (Continued). Finally on an interesting twist to Beth's story and her concern for her son she found some solace from an unusual source, the yearly NACTS survey contacts. Beth explains: J: So, you don't remember feeling sort of extra worried about him or. .. ? B: Oh, of course, I was worried, 'cause that's just normal. I was worried that something was seriously \vrong with him. But, he never showed any violence. So when I had that yearly conference with those people from the Mental Health Association [NACTS], that helped a lot. Because they helped me to realize ... they didn't tell me anything, I just answered their questions yes or no. But in my own mind it made me think that he [Calvin] just has ... he's just immature and maybe that was my fault. I don't know if it was or not. He was undisciplined, to a certain extent. That was my fault. I know that. They helped me to realize things. J: You're talking about the annual University [NACTS] survey? B: Yeah, that annual yearly thing. Yeah, I don't know what it was called. J: This was about six years ago these interviews started. B: Yeah but they helped me a lot. I looked forward to them every year because it just helped me to realize a lot ofthe stuff that they said didn't even affect him [Calvin]. And that made me feel good, I don't know why it made me feel good, it just did. It made me look at him in a different way. There wasn't anyth ing I could do about his emotional problems that I could think of, but be supportive with him and try to get him to talk with me. But as far as thinkin' that he was crazy to a certain extent, or real bad I knew he wasn't that. A Mother's Hopes and Dreams Beth was very proud that Calvin had graduated from high school. She and Calvin had been through a lot to get him to that point. She also thought that Calvin was happier now that he was working, even if it was mostly mowing the lawns for the neighbors. In addition the tension between Calvin and his father seemed to lessen once he had graduated. As far as his parents were concerned Calvin had accomplished a major goal in life. Beth explained: 269

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Appendix 6. (Continued). B: Calvin changed when he graduated from high school. Yeah, Calvin changed. J: In what way did he change? B: He changed like he was happier. He was more relaxed_ He didn't have the burden of going to school on his mind. He felt like he could come and go as he pleased and he was making money because he had a job. He was paying his rent. He felt independent. J: So as he relaxed, how did the relationship with Victor change'7 B: It was relaxed. They got along good. He could tell Calvin to do something and Calvin would do it. Calvin was paying his rent. Victor wants them to be men. He wants them to have responsibility and from there ___ there was a time in there that Calvin didn't show any responsibility. All he wanted to do is argue \Vith you. Fuss and cuss and carry on. J: What are Calvin's greatest accomplishments? B: Graduating from high school. I think that's it...and getting a job. Even though the first time didn't work out, he did go out and find another one. So, that... in life for Calvin ... that one greatest accomplishment is making money_ That's the first thing on his mind is making money Its always been there. He' s always been money conscious. And he's very generous with it. Beth said she had seen Calvin mature a lot over the last year and that she knew there were a few things in life that he was beginning to want like a car and a driver's license. She also was sure he would not want any more education right now. This is what Beth had to say about Calvin's future: He was so happy when he got out of school I don't think he'll ever go back. Maybe when he's an adult if he wants to get a certain job, but as a teenager or young man, I don t look for it. Maybe later, you know,_ but I don't look for it now. 270

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Appendix 6. (Continued). I would like to see him get a steady full-time job that he's satisfied with. He was really happy at Master Packing and then, you know, that happened. He liked that kind of work. He needs more hours because money's important to him. I'd like to see him find a job where he's happy. I think that would help him a lot. Because when he was working down at Master Packing, for those two months everything was going so smooth. No arguments. You know, he was happy. Victor wasn't arguing on his case all the time Yeah, in the future. He wants all this stuff, it's just that he knows that he can't have it right now. It's not that he doesn't want it...like Bobby. He doesn't even act like he cares. He'd be satisfied to ride his bike all his life But Calvin does want this stuff The Son's Story Calvin was agreeable to the case study interviews, always showed up when they were scheduled, and really appreciated the $25 a month he got for participating. He was always cooperative polite attentive, and answered everything. At times he spoke so softly that I had to ask him to confirm what he had said I never saw him without his hat, and he would peek from under the brim at me as he s hyly talked to me. It took him a long time to warm up to me and was alwa y s reserved in his manner. Near the end of the case study interviews he began to show me things about his life that were of interest to him like a peach tree he had planted. Calvin never had a lot to say and his style of communication with me was to answer most questions with "Yeah" or a very short phrase. Below is his story about being in special education classes from early elementary school to high school graduation. Why I Was in Special Education Classes I was very interested to learn from Calvin what he though about being in special education classes and why he thought he had been in the DEES Centers. I asked him 271

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Appendix 6. (Continued). several times why he was put in EH classes and this was one of our conversations, which is typical of similar conversations. J: Well, why did you go to Ballast Point? C: Guess it was the-they had EH classes. It was that special. And I didn't go there for being bad or nothing. J: Can you tell me why you think you were sent there? C: Probably, cause teach me more better. J: Teach you better. C: Yeah, than regular [school]. Help you out a little bit more. You go there to help ya so you can go to regular school. J: Did you have any idea why you needed to go there? C: Well, cause I was slow. Yeah. J: Slow in what way? C: Work. J : Like the school work. C: Yeah. Later in this same interview we again touched on the topic of why Calvin was in the DEES Center, this is what he said: J : So, as far as you could tell the only reason that you were put in these special classes ... C: Cause I was real slow in learning. J: And nobody ever gave you any other reason? Talked to you about any other reason? C : No. 272

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Appendix 6. (Continued). J: Did you think there was any other reason, or did that just seem logical to you? C: Yeah. Cause I got problems real slow. I guess emotional maybe. J: So, mostly it was that you're real slow, but then you think there were some emotional things, too? C: I don't think so maybe. J: Maybe ? C: Yeah. J: What kinds of things do you think it might be? C: I don't know, slow, I think, yeah. In a later interview Calvin compared himself to the other students in the Hillsborough DEES Center: C: I was the only one [student) that didn't do nothin' to get here. J: You don't know why you were in Hillsborough DEES? C: Other people was there cause they did something bad. J: Okay. C: And I guess they just stuck me in. J: Okay, so you ended up in this DEES class? C: Yeah I guess it was to help out kids and they thought it would help me out. Going to Special Education Classes Calvin and I also talked a lot about what it was like to be in the DEES Center. For him there was a definite contrast between the Ballast Point DEES Center and the Hillsborough DEES Center. He was happy and much more comfortable at Ballast Point. Here are some of things Calvin remembered about Ballast Point 273

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Appendix 6. (Continued). J: Okay, what kind of.. well how big were the classes at Balla s t Point? C: Portables. J: So you were in portables but how many kids did you go to school with in Ballast Point. C: Probably thirty. In the whole school. J: And were vou in the same classroom with all thirtv? -C: No, we were separated like six in class or something. J: And how many teachers did you have to a classroom? C: One teacher and one aide I remember another teacher, Mr. Audrey Did I tell you about him ? J: No. And what class did he teach ? C: Math Another time Cal v in described one of the E H teachers: C: I had another, in Ballast Point, another, an EH teacher, too. I can't remember her name, though. J: And what did the EH teacher do ? C: Like put us in groups and talk about our life and all that. Just tell us stuff. J : What kind of stuff? C : About our background and all that. J: Did she ever talk about any problems you might be having? C: Yeah. All that. J: Was she helpful when you were sitting in groups talking about background? C: Yeah. J: In what was she helpful ? 274

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Appendix 6. (Continued). C: So we can get all our feelings out. J: Did you like to do that, was it helpful to you? C: Yeah. J: So you were having classes ... Did you stay with the same six kids that were in your class or did you mix? C: Yeah, like we mixed. J: So then you go to each of the portables for math and science and language and whatever. C: Yeah. J: And then how often did you see the EH teacher? C: I think it was every Tuesday. Yeah, every week, once a week, every kid get to see her once a week. Sometimes she wouldn't see them all. J: So, she might not show up s ome week, but generally it was once a week? C: Yeah. J : What was the thing you liked best about Ballast Point? C: On Fridays, they let you ... You always watched a movie on Friday When Calvin got to Hillsborough it was full of violent tough kids and he didn t like it. At one point he skipped school and his parents were called by the school. His father kicked him out of the house and told him he had a choice, go to school and come back home, or stay away. That was enough to convince Calvin to finish high school, this is how he explained the incident and what he learned: J : Well, you decided that you were going to skip class because you didn t like going to this high school. And so, it finally got to the point where you skipped a whole week, or did you skip more than a whole week? 275

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Appendix 6. (Continued). C: It was probably two weeks of skipping off and on. Cause I used to sleep in class. J: Okay, so you just decided that..how would you go about skipping class? C: It would be .. not going to school in the morning. J: So you just would miss the bus. And then where would you go? C: Just stay out away from home all day. J: Somewhere around here? C: Just riding, yeah. J: So you'd ride your bike around? C: Yeah. J: And what would you do when you ... C: Nothing, just ride. Visit somebody. J: How did you feel when you were skipping school? C: Well now I wish I did go to school. J: It kind of slowed you up? But when you were doing that how were you feeling? C: Upset. J: So you were upset even though you were skipping. You were doing what you wanted, you were skipping. C: I knew I'd done wrong. Then when the end of the day comes when it's time for me to get out, just be time to get out school, then I feel bad. My daddy I didn't tell him that I was skipping. But then after that \'lleek they found out I was skipping, then they kicked me out. J: How did they find out? C: The school called. I wasn't coming to school. Those people on the bus pick on me and I didn't feel like going. 276

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Appendix 6. (Continued). J: What other kinds of problems were you having at the school? People on the bus were picking on you, everybody else at the schooL..? C: Everybody else. It was mostly some ofthe Blacks J: Did they ever tell you why, or was it just because? C: Cause they all pick on everybody. J: They just pick on everybody. So you were just the next target, in other words. And then you were falling asleep in class? C: I used to sleep in class. I used to sleep in there and didn't do no work. I was surprised I passed. I graduated. J: Yeah, you graduated. I supposed it took a little extra work. C: Yeah, but then when I went back the last time, you know I stayed out for a week. They brought me back and then I did pretty good after that. From eleventh, no twelfth. J: So that was really during the twelfth grade. You think this was going on? C: About eleventh. Eleventh to twelfth. I did pretty good after that and I graduated. And I was happy. J: Well, when you were kicked out of the house, what happened? Your dad, what did he say? C: He just said, you got 'til about three o-clock to get out or something, I believe. J: What reason did he give you? C: Cause I done missed that school for a whole week. And they called, and he said if you're not going to school, you ain't gonna live here. So I stayed at Lawson's down the street in the garage about two days. So now, if you don t work, you don't live here, too. J: You stayed at a garage ? C: Yeah. I stayed in one of the garages There was a big 'ole storm come in, too when they [his dad] kicked me out. 277

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Appendix 6. (Continued). J: So you didn't think it was safe when you stayed there? What did they think at Lawson's? C: No. They didn't care. J: Oh, so it was okay with them for you to stay in the garage? C: It was my daddy. My sister talked him into bringing me back home. J: So your sister talked to your dad? C: Yeah, cause he probably, he knew he did wrong. Cause I was having problems at school. J: So your dad knew he had done wrong? C: My sister told him. . .I was having problems at school. Then they helped me out. J: When this was all going on did you feel bad, or was it okay with you? C: I didn't like it too good. J: Did you have any money vvith you? C: Had some, yeah. Enough to eat, yeah. J: It didn't go on too long? C: About two days. J: What were you thinking was going to happen while you were sitting around in the garage? C: Wondered what I'm gonna do. Nobody to go to. J: Did you feel kind of isolated, or ... C: Yeah. J: So then, who came and got you and said you can go home now. C: I used to ride around the house and my mom used to let me in the first time. Let me come in and eat something every once in awhile. She said she's wash my clothes for me, too. Without my dad there 278

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Appendix 6. (Continued). J: So that was all kind of going on behind his back? C: Yeah. Until the second time it didn t work. J: And then he knew? C: Well, she wouldn t let me in. I guess the second time they didn t like it very good. The first time, she knew he wa s doing wrong. J: So and then they said okay you can come back now. And what made you decide that you weren't going to skip school any more? C: Knowing that my daddy kicked me out two times. And that taught me a lesson. Being on your own is hard. J: That's right. It takes a lot of resources. C: And now I gotta go to work. If I don t, he'll kick me out. J: Well, it seems to me you kind of like to work. You like it better than school ? C: Yeah. I like being outside. Always did like to work as long as I can do something. A Son's Hopes and Dreams Calvin had graduated from high school the previous summer. I asked him about graduating and what his plans were for the future. This is what he said on the subject: J: So you have graduated How did you feel when you graduate ? C: Pretty Good. Freed om! J: Now what? C: Yeah, you gotta worry about going to work. Then I had to go to work. J: Well you don't seem to mind I take it you like working better than going to school ? C : Yeah. 279

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Appendix 6. (Continued). Calvin did like to work and had held a number of short-term jobs, but he had problems with bosses when the expected him to comply with their rules. During one of the last interviews we had Calvin and I talked about what he was currently doing and his plans for the future: J: So how have you been this week? C: Pretty good. J: Pretty good? Your mom was telling me you were ... C: Laid off. Yeah. J: VVhathappened? C: They kept askin' for weekends, so I told em to find somebody else. But I really needed weekends off J: So you told them it wouldn't work out? C: I told them to find somebody else. Said might as well punch out and leave. J: Did you get mad at each other? C: No. Just wouldn't let me have the weekends off J: So now what are you going to do? C: I got application in a printing place. J: And you're helping your dad? C: Yeah, some. J: Are you getting yard work? C: Yeah, I got a lot ofla\vns to do. Yeah, I get a paycheck next week. J: So you're helping your dad. How many days a week? C: Whenever he wants me. Probably, maybe, find something for me to do, I'll do it. 280

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Appendix 6. (Continued). J: You're not just working on the garage sale stuffthen') You're doing other things for him? C: Yeah, some times, yeah. I got my own set up I do now. Selling work pants. J: Tell me more about that. C: Yeah, guy down the street at that ... place down there. I'm going in with him, selling them. J: Tell me more about the application you put in. C: Yeah, me and my brother does. My cousin works there. They're goin' to be movin' later. I think April or May. People ain't gonna want to move over here. J: What kind of things do you think you will do for the print shop? C: I guess what's ever open. 281

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ABOUT THE AUTHOR Jini M. Hanjian has been employed for fifteen years at the Louis de Ia Parte Florida Mental Health Institute, USF, working on research and evaluative projects in the area s of children and older adult mental health. She coordinated the clinical accreditation programs for the Institute over an eight-year period Currently, Ms. Hanjian is Director of the Research and Demonstration Unit, Department of Aging and Mental Health. Since 1997, she has been the Managing Editor of the Journal of Mental Health and Aging. Ms. Hanjian received her Bachelor of Arts in anthropology from Florida State University in 1974, and Master of Arts in applied anthropology from Univers i ty of South Florida in 1979. She was awarded the USF State University System Employee Grant-in Aid in 1991-1992 which supported her dissertation research. In 1993, she received the Best of Session for Applied Anthropology Student Award, Florida Academy of Sciences Annual Meeting


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