Mental health service provision for elderly persons living in Florida : the role of advocacy

Mental health service provision for elderly persons living in Florida : the role of advocacy

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Mental health service provision for elderly persons living in Florida : the role of advocacy
Sharinus, Michael W.
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Tampa, Florida
University of South Florida
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v, 169 leaves ; 29 cm


Subjects / Keywords:
Patient advocacy -- Florida ( lcsh )
Older people -- Mental health services -- Florida ( lcsh )
Political planning -- Aged -- Mental health services ( lcsh )
Dissertations, Academic -- Applied Anthropology -- Doctoral -- USF ( FTS )


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Thesis (Ph. D.)--University of South Florida, 1994. Includes bibliographical references (leaves 154-164).

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University of South Florida
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University of South Florida
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All applicable rights reserved by the source institution and holding location.
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020803031 ( ALEPH )
33267291 ( OCLC )
F51-00190 ( USFLDC DOI )
f51.190 ( USFLDC Handle )

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MENTAL HEALTH SERVICE PROVISION FOR ELDERLY PERSONS LIVING IN FLORIDA: THE ROLE OF ADVOCACY by MICHAEL W. SHARINUS A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor o f Philosophy Department of Anthropology University of South Florida December 1994 Major Professor: Michael V. Angrosino, Ph.D.


Graduate School University o f South Florida Tampa, Florida CERTIFICATE OF APPROVAL Ph.D. Dissertation This is to certify that the Ph.D. Dissertation of MICHAEL W. SHARINUS with a major in Applied Anthropology has been approved by the Examining Committee on August 19, 1994 as satisfactory for the dissertation requirement for the Doctor of Philosophy degree Examining Committee: Major Professor: Michael V. Angrosino, Ph. D. Member: Catherine Batsche, Ph.D. Member: J. Neil Henderson, Ph. D. Member: Larry Mullins, Ph. D Member: Maria Vesperi, Ph.D.


ACKNOWLEDGEMENTS I gratefully acknowledge: Dr. Michael V Angrosino for providing tireless guidance and editorial assistancei Dr. Catherine Batsche, Dr. J Neil Henderson, Dr. Larry Mullins, and Dr. Maria Vesperi for giving thoughtful advice and directioni Pat Robinson for furnishing invaluable suggestions and resourcesi Cynthia Stark for rendering immeasurable support and encouragement during the production of this dissertationi The Florida Mental Health Institute and its staff for help and support throughout the entire composition process.


TABLE OF CONTENTS ABSTRACT CHAPTER ONE. INTRODUCTION Statement of the Problem Purpose of this Study Definition of Terms CHAPTER TWO. REVIEW OF THE LITERATURE The History of Mental Health Care in the United States: A National Perspective Historical Overview of Mental Health Legislation in Florida Primary Mental Illnesses that Affect Elderly Persons Mental Health and Elderly Persons: Sociocultural Attitudes Gender, Socioeconomic Class, and Ethnicity Advocacy Public Policy Policy Implications for Treating Elderly Persons Who Have Mental Illness CHAPTER THREE. THEORY Age Stratification in the Mental Health Services System CHAPTER FOUR. METHODOLOGY Research Methods Participant Observation Key Informants and Semistructured Interviews CHAPTER FIVE. RESEARCH FINDINGS Participant Observation Informants Summary of Findings Other Issues -Not on List of Questions CHAPTER SIX. SUMMARY AND CONCLUSIONS Advocates and Advocacy Organization of Advocacy Advocacy Effectiveness Acting on Issues i iii 1 1 12 14 16 16 30 36 46 47 53 56 59 61 61 72 72 74 76 81 81 86 88 119 126 126 129 131 133


Advocate Involvement with the Policy Process 136 Funding 137 Advocates versus Lobbyists 137 Advocacy for Mental Health and Elderly Persons 138 Other Issues 140 Conclusions and Recommendations 142 Advocates 144 Policy Makers 146 Service Providers 147 Implications for Further Research 148 Conclusion 149 LIST OF REFERENCES 154 APPENDICES 165 APPENDIX A. LETTER TO POTENTIAL INFORMANTS 166 APPENDIX B. INTERVIEW GUIDE 168 ii


MENTAL HEALTH SERVICE PROVISION FOR ELDERLY PERSONS LIVING IN FLORIDA: THE ROLE OF ADVOCACY by MICHAEL W. SHARINUS An Abstract Of a Dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy Department of Anthropology University of South Florida December 1994 Major Professor: Michael V. Angrosino, Ph.D. iii


The mental health services system in the State of Florida has not made consistent progress in providing either inpatient or outpatient care over the past decade. Florida has the highest percentage of older persons of all fifty states which emphasizes the significance of public policy affecting this group of residents. This study examines the advocacy network pertaining to mental health issues for older persons living in Florida because advocacy groups were cited as being important vehicles for policy formation and change. Participant observation and key informant interview techniques were employed to gather data for this study. A state-wide advocacy group with national affiliation was observed during its advocacy efforts during the regular 1990 Florida Legislative session. Key informants comprising a purposive sample of advocates, policy-makers, and service providers were interviewed using a semi-structured interview style. The findings of this study indicate that there is no organized advocacy group in this state that deals specifically with mental health issues pertaining to elderly persons. Advocacy efforts were thought to be fragmented at iv


best, even though the key informants perceived a need for this type of action. Based on information obtained from a review of the literature on research in this subject area, and the results of the finding of this study, several recommendations are proposed to help ameliorate this lack of support for this portion of the population. Abstract Approved: ____ 1'1ajor Professor: Michael V. Angrosino, Ph.D. Professor, Department of Anthropology Date Approved


1 CHAPTER ONE. INTRODUCTION Statement of the Problem In 1986 Torrey and Wolfe described Florida as making significant progress/ described the state as moving ahead stronglyr and rated Florida as sixteenth overall for quality of the mental health system for all 50 states and the District of Columbia. The rating scale for this study used a point system with values one through five1 for two different areas: "inpatient services/ and outpatientcommunity services for the seriously mentally ill" (Torrey and Wolfe 1986:19). The highest possible score that could be obtained was tenr and the ratings for the 50 states and the District of Columbia ranged from two to nine. Florida received a score of two for inpatient services and a score of four for outpatient-community services1 for a total of six points. Florida was categorized as a very large state and was described as having the best system among those states with a population of over six million. Inpatient care was found to lag somewhat behind the national average1 but outpatient services were rated highly. This high rating for outpatient services came from innovative programs that were found throughout the stater including; 1) a pilot


2 program in Pinellas County that provides services for students who are severely emotionally disturbed, 2) Fellowship House in South Miami, which is a psychosocial rehabilitation program for adults, and 3) programs at the Florida Mental Health Institute such as Day Alternative to Residential Treatment (DART), Intensive Residential Treatment (IRT), and Substance Abuse Program for the Elderly (SAPE) One reason cited by Torrey and Wolfe (1986) for the success of the mental health system in the state of Florida was that the system was regionalized. By splitting the state into eleven Health and Rehabilitative Services ( HRS) Districts, it was easier to consider the needs of a particular region than would have been the case had all decisions been centralized in Tallahassee. A second reason cited for this success was that the legislature and the governor had been supportive of mental health issues for the period preceding the study. A third reason offered was that Florida had fairly strong lobbyists in the form of consumers, consumer groups, and advocates. The mental health system in Florida has not made consistent progress in providing either inpatient or outpatient care for persons who are seriously mentally ill (Torrey and Wolfe 1986i Torrey, et al. 1990). In the report published in 1990, Torrey, et al. ranked Florida as thirtyeighth in a seven-way tie with seven other states. This


3 ranking was computed using the 50 states and the District of Columbia. Rankings were based on a five point scale for five different categories for a possible total of 25 points. The five categories included hospitals, outpatient/commu nity support, vocational rehabilitation, housing, and children's services. Hospital ratings were based on the quality and quantity of staff, quality of treatment, and the environment. Outpatient and community support services were also rated on the quality of staff and treatment, and quantity of staff. It was pointed out that vocational rehabilitation, outpatient and community based services overlap in many areas, However, we have opted to evaluate vocational rehabilitation as a separate category; ... the most important reason is that such services deserve special attention since they have been long neglected by the state vocational rehabilitation agencies that should be taking responsibility for providing them (Torrey, et al. 1990:32). As was the case with vocational rehabilitation, housing and children's services were rated based on what a composite of organizations considered to be ''ideal." Florida received one point for each category except for children's services, where the score was two, for a total of six points. Unlike the report published in 1986 by Torrey and Wolfe where Florida was thought to be "moving ahead strongly, the 1990 report deemed Florida to be "moving


4 backwards11 in terms of providing mental health services for its citizens. In stark contrast to the narrative describing the mental health system in Florida in 1986, Torrey, et al. (1990) had very few positive things to say about the same system in the 1990 version of their report. In the case o f Florida's Health and Rehabilitative District system, which was presented positively in the 1986 report by Torrey and Wolfe, this same system was identified as a problem area. The authors state, If you decided, as an academic exercise, to create a state mental health system that was set up to fail in every possible way, you might start out like this: First, you'd create multiple layers of bureaucracy, including a state mental health department without much real authority to effect change and a system of mental health districts that are run as private fiefdoms according to the dictates of politics. You would fund outpatient and community support services, especially case management, so poorly that they were guaranteed t o fail, and you wouldn't allocate enough funds f o r anything better than the most dilapidated buildings and the m ost minimal staffing. You wouldn't bother to train local staff very much o r bring in national experts, so most service providers would be 10 or 20 years behind the times in their attitudes towards people with mental illness. You wouldn't bother consulting consumers or their families very often about what you ought to be doing, and you wouldn't monitor programs very carefully to give them any incentive to do a good job. If any good programs did happen to appear despite y our efforts, you would ignore them rather than replicating them. After many years o f such neglect and underfunding, you would have succeeded in pushing tens of thousands of severely mentally ill individuals into the streets or into the criminal justice system. Unfortunately, this prescription for disaster is not merely a theoretical exercise; for people


with mental illness in Florida, it is a reality (Torrey, et al. 1990:149-150). Nine factors were associated with whether states were rated as good or poor and include money, the geographical area in which the state is situated, the experience of the states' mental health directors, am ount of m oney spent on other human services, Department of Housing and Urban Development grants, spending and population factors in children's services, psychologist density, social worker density, and National Alliance for the Mentally Ill membership. The authors caution that the reports for 1986 and 1990 are n o t comparable since different rating scales and different criteria were used to generate the ranking of the states and District of C olumbia. The same basic research question was used for all three studies, however, and the authors state, ... this survey, like its predecessors in 1986 and 1988, attempts to answer the question, 'If I or a family member had a serious mental illness, in what state would that person be most likely to receive good public services?' (Torrey, et al. 1990:i). The idea to study the advocacy system in the State of 5 Florida originated from the 1986 report by Torrey and Wolfe. This report indicated that active advocacy groups were often found in states having notable mental health service systems. Advocacy was also mentioned as a factor in a


state's effectiveness in providing adequate mental health services in the 1990 version (Torrey, et al. 1990). 6 This dissertation will focus on Florida's advocates in the area of mental health. Particular attention is directed to the function of advocacy in developing mental health policy specifically for elderly persons, a significant portion of Florida's population. Advocacy was cited by the authors ranking state mental health programs as being an important factor in the effectiveness of mental health services provided to the citizens of each state (Torrey and Wolfe 1986; Torrey, et al. 1990). Usage patterns of mental health services for older persons is low compared to other age groups, but elderly people continue to be faced with stressful situations as they age which could trigger mental health problems such as depression. This study will attempt to determine whether or not there is an active advocacy system in the State of Florida for mental health for older persons. Based on information obtained from the 1990 census, there are slightly more than three million people aged 60 years and older living in the state of Florida (U. S. Department of Commerce 1993). This number will increase if growth trends continue as they have over the last several decades (Morris 1993). Florida gained over two million people since 1980 through migration, and, along with California and Texas, accounted for over 52 percent of the


7 nation's population growth from 1980 to 1987. For this same time period, Florida's elderly population increased by 452,000 persons. Moreover, the percentage of the population living in Florida aged 65 and older has risen from 6.9 percent in 1940 to 18.4 percent in 1992 (Morris 1993) As the 11baby boom11 generation ages, these numbers will increase dramatically. It is estimated that by the year 2030, the total number of older Americans will number from 55 to 66 million (Butler 1975; Gottlieb 1991; U. S Department of Health, Education, and Welfare 1979) Despite the large number of people affected, issues pertaining to older people are often given less than priority attention. Anthony and Aboraya (1991:63) state, We now can read literally hundreds of papers based on field surveys that have looked for the dementias and the depressions occurring in later life. On this basis, we know how dreadfully often older people are afflicted with these conditions in later life, we have found that these disorders are quite likely to be unrecognized and untreated by local health authorities, and we know something of how to study these conditions in the field. Beyond this, we have produced no real breakthrough discoveries, either in etiology, or in the planning or evaluation of services. Seven major areas of mental health problems that affect elderly persons are described by Fogel, Gottlieb and Furino (1990) Referred to as neuropsychiatric disorders by the authors, they encompass most of the common mental health problems associated with older persons found in the literature.


8 Dementia, which includes Alzheimer's disease and other organic brain disorders, is probably the most recognized problem affecting older members of American society. It is estimated that five percent of people aged 65 and older suffer from dementia. As many as two thirds of nursing home residents suffer from dementia, and for every person in a nursing home with this particular neuropsychiatric disorder, it is estimated that there are two or three in the community who are being cared for by family members. Up to 25 percent of the people affected by organic brain disorders can be treated to the degree that their condition is either controllable or reversible (Butler 1975; Raskind and Peskind 1991). Depression is one of the most common mental health problems for elderly persons (Blazer and Williams 1980; Gallagher et al. 1981). It is estimated that the incidence of depression in people 65 and older ranges from ten to fifteen percent for people who are living at home or in the community at large (Fogel, Gottlieb and Furino 1990; U. S. Department of Health, Education, and Welfare 1979) Approximately 25 percent of nursing home residents experience significant depression and the percentage increases to 30 to 50 percent for elderly persons who are in ambulatory medical care settings (Fogel, Gottlieb and Furino 1990).


9 Schizophrenia and other chronic mental illnesses affect a relatively small number o f elderly people living outside of institutional settings. Behavioral and emotional consequences o f brain disease and dysfunction, other than dementia, are very prevalent in older persons (Fogel, Gottlieb, and Furino 1990). Most of these disorders are treatable if they are properly diagnosed in a timely manner. Delirium is defined as an acute confusional state and is most often associated with problems pertaining to blood chemistry, metabolism, or drug intoxication. Delirium is reversible with proper diagnosis and correction of the chemical imbalances or drug intoxication. Hypothyroidism occurs due to a deficiency of the thyroid hormone and is often reversible by taking oral doses of synthetic thyroid hormone. Vitamin Bl2 deficiency can occur spontaneously, because the element is lacking in the diet, or as a side effect of gastrointestinal surgery. This condition is always ameliorated with injections of vitamin Bl2. Epilepsy, an inherited disease, may cause depression. This depressive state may be exacerbated by drugs used to treat the disease, and mental health therapy may be used to help control the depression associated with this disease. Parkinson's disease, which causes brain degeneration, is also a condition that is inherited, and like epilepsy, depression is often present in people who have this disorder. Effective treatment may include


10 adjustment of the doses of medication used to treat Parkinson's disease, and mental health therapy. Depression due to stroke is also due to brain damage and is treatable using anti-depressant drug therapy, and rehabilitation therapists. Prescription drug psychotoxicity is also a common, and nearly always reversible, problem for older persons. The number of people who are affected by this problem is hard to determine, however, 11because the majority of psychotoxic reactions go either undetected or unreported11 (Fogel, Gottlieb, and Furino 1990:11). Alcoholism and prescription drug abuse can be found in approximately ten percent of elderly people living outside of institutions. With treatment, substance abuse can be controlled or eliminated (Blazer 1989). The final neuropsychiatric disorder described by Fogel, Gottlieb, and Furino (1990) is maladaptive emotional reactions to predictable crises of later life, including bereavement, retirement, and acute medical illness. Also, the current generation of older people living alone may not realize they are 11acting funny11 This situation may change as 11baby boomers11, whose level of psychological selfawareness is more sophisticated than the previous generation, move into the elderly population (Furino and Fogel 1990)


11 The degree to which mental health problems affect the elderly portion of the population is thought to be grossly underestimated (Anthony and Aboraya 1991; U S. Department of Health, Education, and Welfare 1980), primarily because most mental health statistics are the result of compiling utilization rates in public psychiatric hospitals and community mental health centers. With the emphasis on deinstitutionalization, elderly people were pushed out of state hospitals into nursing homes and into the community at large (Lebowitz and Niederehe 1991; U. S Department of Health, Education, and Welfare 1979) Most community mental health centers in the state of Florida tend to focus their resources on acute crisis intervention for younger people, therefore, this problem is exacerbated by the fact that older people tend to be reluctant to seek help for mental health problems due to cultural and societal attitudes (Burns and Taube, 1990; Lave, 1990; U. S. Department of Health, Education, and Welfare 1979; Vesperi 1985). Mental health care for the elderly is an important issue for policy-makers because it affects a large number of people, and in the long run it may be shown that preventive care is cost effective in terms of overall health care dollars (Furino and Fogel 1990; Lave 1990; U. S. Department of Health, Education, and Welfare 1979) This is especially true for Florida with its unusually large population of elderly persons. Florida has the highest percentage of


persons, aged 65 years and older, of all fifty states (Morris 1993). Purpose of this Study 12 The purpose of this study is to explore the advocacy system in the state of Florida to determine its effectiveness for helping set public policy with a specific focus on mental health issues pertaining to the elderly. A review of the literature traces the history of major national and state legislation pertaining to gerontological and mental health issues. Major aspects of mental health and the elderly are presented, including descriptions of the illnesses, possible treatments, sociocultural attitudes toward mental illness held by elderly persons and their caregivers, and policy implications for treating elderly persons who have mental illness. Age stratification theory is presented to serve as a focal point for this study. The methodology used in this study is described in the next chapter. In brief, a list of key informants was compiled by consulting with people who are familiar with the advocacy system, the legislative process, and/or issues pertaining to the elderly. Each informant was interviewed using a semi-structured interview style. An "interview guide" was used to insure that all of the research questions were addressed during each interview. The interviews were


conducted in person and by telephone with the duration ranging from thirty minutes to two hours. All interviews were recorded on audiotape after obtaining permission from the informants. The key informant list was considered complete when names were repeated by several informants while no new names were given. 13 During a pilot study, most key informants agreed that there were very few people who focus their efforts on mental health issues pertaining to elderly persons in the State of Florida. While learning this information early in the study was somewhat discouraging, determining if this were in fact the case could also be considered an important finding because of the importance placed on advocacy in relation to mental health service delivery systems by Torrey and Wolfe (1986) in their rating of state mental health programs. Analysis will then be directed at the question of why such an important area of mental health policy should be underdeveloped. The research conducted for this study did in fact indicate that, according to information provided by key informants, there is no well-defined, organized advocacy group, or advocacy effort on the part of older persons and mental health services in Florida. Non-profit, voluntary organizations were identified as being the most common groups that are involved in advocacy on a consistent basis. While advocates tend to work almost exclusively with


14 specific issues or segments of the population, children, and not elderly people, were thought to be the best represented in the Legislature at the present time. The informants suggested that there is a difference between advocates and lobbyists; generally advocates were thought to be unpaid volunteers who had an interest in a particular issue, while lobbyists were seen as paid professionals working for groups that could provide financial backing in order to help with their advocacy efforts. Funding was identified by informants as being a major issue at the present time. Lack of state fiscal resources was thought to be responsible for the current situation where various entities are fighting for the limited funds that are available. The informants suggested that fiscal problems will continue as long as the state maintains its current method of generating revenue; that is, relying on sales taxes to provide the money needed for the operation of the state. The final chapter presents conclusions that can be drawn from the research, and recommendations for the application of the findings of the study. Definition o f Terms The "baby boom generation" refers to an unusually large group of persons born between the years 1946 and 1964 (Furino and Fogel 1990).


Mental health overlay support is funding provided for residents of long-term care facilities to obtain mental health services (O'Sullivan and Speer 1992). 15


16 CHAPTER TWO. REVIEW OF THE LITERATURE This chapter presents a review of the literature that traces the history of the major national and state legislation bearing on either gerontological or general mental health issues. Some of the more common mental health problems that affect the elderly are presented. Sociocultural attitudes, gender, socioeconomic class and ethnicity considerations pertaining to mental health and older persons are also given. Finally, advocacy, public policy formulation, and policy implications for addressing mental health problems in elderly persons are introduced. The History of Mental Health Care in the United States: A National Perspective Few mental health facilities existed in the United States during the first half of the 19th century, and those that did exist were private facilities that treated persons who had the financial means to pay for the services provided (Bloom 1977) These private facilities were patterned after those in Europe where humane treatment of persons with mental illness was practiced because it was thought to be more effective than more intrusive practices, such as purging and bloodletting. Most people with mental illness,


17 however, were cared for in the community by family members, in poorhouses, or prisons, since they could not afford treatment in private facilities (Bloom 1977; Morrissey, Goldman and Klerman 1985; Scull 1985). Dorothea Dix is credited with starting a movement in 1841 in Worcester, Massachusetts, to build state-supported psychiatric hospitals to assist people with mental illness who were being ''warehoused" in prisons and almshouses (Bloom 1985) The success of her efforts is demonstrated by recognizing that by the end of her career, 32 state-support mental hospitals had been established. Many of these newly established hospitals were designed after, and operated like, the few privately operated hospitals that were in existence. As a result of this movement, there was a shift from viewing persons with mental illness as being synonymous with paupers and criminals, to people who were sick and in need of hospital care. This more humane approach led to a greater interest and understanding of the "nature and causes of disturbed behavior from a medical perspective" (Bassuk and Gerson 1978:46). As early as the 1860's, efforts were underway to convert the institutionalization of persons with mental illness to a cottage hospital movement in Worcester, Massachusetts (Morrissey, Goldman and Klerman 1987). This effort failed and resulted in the continuation of the institutionalization of persons with mental illness.


18 Families with the financial means began to choose private facilities over state-operated psychiatric hospitals which resulted in state hospitals filling with persons with lower socioeconomic status and ethnic minorities. The mental hygiene movement followed in the beginning of the 20th century (Morrissey, Goldman and Klerman 1987). Adolf Meyer is credited with initiating this movement with the intent of improving the care of people receiving treatment in mental hospitals. This effort at deinstitutionalization also failed. The system was designed to focus on prevention and early detection of acute cases of mental illness in psychopathic hospitals, but the end result was that people who were admitted to state facilities were "still funneled into large custodial institutions" (Morrissey, Goldman and Klerman 1987:74). Mental health reform was born during the same period that spawned women's suffrage, prison reform and the abolition of slavery. Bloom (1985) describes this period as the moral-treatment movement and cites several factors for its disappearance. Even though there was an increase in the number of facilities that cared for persons with mental illness, state monies allocated to caring for the people in these facilities were not adequate. There was adequate funding for staffing the facilities, but there was insufficient funding to train the large number of people in the skills needed to work effectively in the state-supported


19 hospitals. Hostility directed at the increasing number of foreign-born people living in this country intensified as a result of their expanding proportions. This antagonism resulted in the immigrants having a harder time finding work, therefore many of them were destitute. The populations of the state facilities then, had a disproportionate number of foreigners for whom the American public in general had little sympathy, and adequate treatment for this group was almost impossible to find. During this same period o f time, psychiatry was emerging as a branch of medicine. Because of the way of thinking at that time, finding organic causes and treatments for mental health were favored, further abandoning the humane, moral treatment of persons with mental illness. Bloom (1985:13) states that As a consequence of all of these events, state psychiatric hospitals were not abl e to deliver on their promises -recovery rates decreased and hospitals gradually filled up with chronic, virtually untreatable patients -and what had started out as an era of optimism regressed to belief in the notions of heredity, predisposition, organic pathology, and incurability. The final result was that the state psychiatric facilities became as inadequate and undesirable as the system they were designed to replace (O'Sullivan 1984). This unsuitable condition of state facilities continued until after World War II. The National Mental Health Act (Public Law 79-487) enacted in 1946 was significant because it was the first


20 federal legislation to address mental health issues (Bloom, 1985; O'Sullivan 1984; Ridenour 1963). The National Mental Health Act was fairly comprehensive in scope and was directed at improving the mental health of all of the people of the United States through activities including research, experimentation, and demonstration projects. The National Mental Health Act was also pivotal because the act created the National Institute of Mental Health (NIMH) which quickly became a source of funding for mental health training, research and practice (Bloom 1985; O'Sullivan 1984). Major changes began to take place in the mental health field starting about 1950 (Bloom 1985) One of the most important changes was that the realm of psychopharmacology began to grow rapidly and many new drugs became available for treating persons with mental illness. In many instances the drugs enabled patients to complete inpatient treatment quickly, resulting in an earlier discharge from state mental hospitals, and successful transition to community living (Aiken 1990). Maxwell Jones is most often credited with the concept of the therapeutic community, which emerged in England and Scotland and quickly spread to the United States (Bloom 1985) This technique involved both the patient and therapeutic staff in the treatment process which was thought to increase the effectiveness of the treatment process.


21 Geographic decentralization of patients in state hospitals was the third development that took place during this time (Bloom 1985). It can be viewed as an attempt to change existing administrative patterns which combined all patients together according to treatment modalities. As patients began to be grouped together according to home vicinities, they began to help each other and felt a sense of community. The hospital staff was more evenly distributed in these geographic units, and follow-up treatment tended to come from the geographic ward level instead of the higher administrative level. The importance of these three changes is described by Bloom (1985:18) as follows: These three developments -tranquilizing drugs, the therapeutic community, and geographic decentralization -worked together to democratize the clinical decision making process, establish closer working relationships between the hospital and the community, and lower the hospital census. The price paid for these developments, however, was a growing tendency for mental-health professionals to see all psychiatric hospitalizations as undesirable. These developments laid the groundwork for the establishment of community-based treatment programs. Federal involvement in mental health care continued to increase and by 1955, events took place that impacted the mental health system in such a way as to lead to continued federal participation. This year marks the turning point where the census of state-supported psychiatric hospitals began to decline (Bloom 1985, O'Sullivan 1984). It is


22 unclear what precipitated this change but it is likely that is was caused by a number of things like the emergence of tranquilizing drugs, the therapeutic community, changes in the prevalence of serious mental illness, and a greater number of treatment facilities emerging in the communities. The drop in the census of state-supported mental hospitals was accompanied by an increase in the number of admissions to the facilities. This phenomenon suggests that there was a significant decrease in the average length of stay in state hospitals, and a more rapid discharge into the community. State psychiatric hospitals were given federal assistance directly by NIMH thanks to legislation enacted by the United States Congress. This financial support was in the form of grants that were awarded to state-supported hospitals to promote the improvement of therapeutic programs. The third event that increased federal involvement in the mental health system was the enactment of the Mental Health Study Act (Public Law 84-182) The Joint Commission on Mental Illness and Health was established to carry out the mandate of Public Law 84-183 and was charged with conducting a nation-wide evaluation of mental illness from both a human and economic standpoint. In 1961, the Joint Commission on Mental Illness and Health submitted its final report to the United States


23 Congress which documented the need for improving mental health services. The Commission recommended that an increase in funding be allocated for research, training and expanded mental health services. Bloom (1985:25) stated that the expanded services recommended by the Commission included: 1) immediate and intensive care for acutely disturbed mental patients in outpatient communitymental-health clinics ... and intensivepsychiatric-treatment centers of no more than 100 beds each ... 2) improved care of chronic mental patients in other converted state mental hospitals, ... involving no more than 1000 beds, 3)improved and expanded aftercare, partial hospitalization (hospitalization for less than 24 hours a day), and rehabilitative services, and 4)expanded mental-health education to inform the public about psychological disorders and to reduce the public's tendency to reject the mentally ill. The end result of this report was the Mental Retardation Facilities and Community Mental Health Centers Construction Act (Public Law 88-164) which was signed into law by President Kennedy in 1963 (Bassuk and Gerson 1985; Bloom 1977; O'Sullivan 1984). This law provided funding for the construction of community mental health centers throughout the United States. Although funding was proposed for staffing of these facilities in the original proposal, this funding was not approved until 1965. The number and location of the community mental health centers was based on catchment areas with population limits of 75 to 200 thousand


24 people. These catchment areas were developed and identified according to the planning grants awarded to the states as a result of the legislation mentioned above. Public Law 88-164 mandated that the community mental health centers provide five essential services including inpatient and outpatient care, emergency care, partial hospitalization, and consultation and education (Bloom 1977) These services were to be provided to all persons needing them who resided in the catchment areas regardless of their ability to pay for these services. There were 280 community mental health centers funded by the middle of 1967 and by 1970, this number rose to 450. The signing into law of the Mental Retardation Facilities and Community Mental Health Centers Construction Act had a profound influence on the treatment modalities of mental illness. Deinstitutionalization became the buzzword in mental health circles and prompted a shift from treatment in state psychiatric hospitals to community-based centers. This law also carried with it a set of social values, or social policy, pertaining to mental health policy from the federal governmental level. Bloom (1977) suggests that forces that produce social policy in the United States have several characteristics in common: 1) pluralism in the form of a number of governmental and private groups,


2) pragmatism, 3) emphasis on short-term goals at the expense of long-term planning, 4) the addition of new agencies or structures, 5 ) a reverence of change, and 6) the requirement that social services adapt t o the different needs of the different areas of the country. 25 Amendments were made to the Mental Retardation Facilities and Community Mental Health Centers Construction Act in 1967, 1968, 1970, 1973, 1975 and 1978 which eventually provided funds for staffing the facilities, added alcohol and drug addiction rehabilitation, added childrens' services, and provided funding extensions. The Older Americans Act was signed into law in 1965, and is regarded as being significant federal legislation that addressed mental health services for older persons (Robinson, et al., 1986). Provisions for mental health counseling services for elderly persons was not included in the Act, however, until it was amended in 1978. During the 1960s and 1970s, a mental health group emerged with other political activism movements, such as civil rights, antiwar, and the women's movement. Brown ( 1985) refers to it as "the mental patients' liberation movement." This movement focused on mental health issues such as patients' rights, and criticism that professionals involved with psychotherapy were preserving the status quo. It is also during this period of time that organized groups emerged that more specifically dealt with aging issues.


26 Some of the more prominent groups that emerged, or grew in size, included the Gray Panthers, National Council of Senior Citizens (NCSC), National Retired Teachers Association-American Association of Retired Persons (NRTA-AARP) and National Association o f Retired Federal Employees (Hudson and Binstock 1976; Lammers 1983). Hudson and Binstock (1976) suggest that these groups differed in focus from some of the earlier political organizations, such as The Townsend Movement and the Railroad Employees National Pension Association. The earlier groups focused on problems that were specific to older persons that required immediate resolution, such as retirement benefits. Once resolution of the specific problems occurred, these groups ceased to be politically active. The groups of the 1960s and 1970s focused more on general social issues pertaining to older persons and many are still active today, with impressive numbers of members. The National Council of Senior Citizens is credited with generating interest, on the part of legislators, in health care for older persons (Lammers 1983). The efforts of this group, along with other political forces such as a change in administration at the federal level, are thought to be key forces in the establishment of Medicare (Lammers 1983). Bengtson and Cutler (1976:142) describe this as an instance of group benefits orientation -an orientation toward political issues which is framed not in ideological terms but in terms of whether or not the policy or program will benefit


a particular group of which the individual is a member. Of particular interest for mental health issues 27 pertaining to the elderly were the amendments that occurred in 1975 and 1978 (Flemming, et al. 1984). Congress mandated in 1975 that newly funded community mental health centers provide specialized services for elderly persons with mental illness. In 1978, the recognition of the need for specialized services was reinforced. Unfortunately, neither of the amendments provided incentives for community mental health centers to implement these mandates. The Mental Health Systems Act of 1980 corrected this oversight (Flemming, et al. 1984). To act as an incentive, grant monies were provided for special staffing and the coordination of aging programs. This act was never implemented however, because it was superseded by the mental health block grant program. The Alcohol, Drug Abuse and Mental Health Services (ADMS) Block Grant was enacted in 1981 under the Omnibus Budget and Reconciliation Act (Special Committee on Aging, United States Senate 1981) This program assigned the planning and implementation of mental health services to the individual states. While this law specifically identified mental health needs of elderly persons as being included, the states had relatively free reign for setting program priorities, and the law provided no specific mandates for including specialized services for elderly persons


28 (Flemming, et al. 1984; Robinson et al. 1986). Additionally, the budget for mental health controlled by the Community Mental Health Centers Act was reduced by almost 30 percent of the amount allocated during the previous budget year (Robinson, et al. 1986). The Action Committee to Implement the Mental Health Recommendation of the 1981 White House Conference on Aging collected data that indicated that not only were programs for the elderly given low priority, but increasing numbers of existing geriatric programs were also discontinued. One of the repercussions of the repeal of the Mental Health Systems Act of 1980, and the implementation of the ADMS block grant program, was the elimination of mental health services as part of the mission of the National Institute of Mental Health (Flemming, et al. 1984). This resulted in a reduction of that portion of staff at NIMH which dealt with mental health services issues, and NIMH changed its focus to reviewing and funding research grant proposals. Another effect associated with the elimination of the mental health component of NIMH was the reduction in funding for clinical training support for mental health professions. As a result, the states had to develop mental health programs without the technical assistance and expertise that NIMH once provided.


29 Other laws enacted in the 1960's and 1970's also influenced elderly persons' access and use of outpatient mental health services. The Social Security Amendments of 1965 established Medicare and Medicaid programs to help elderly and indigent individuals pay for medical care and skilled nursing care. Medicare covered mental health care on an inpatient or outpatient basis for elderly persons who were in psychiatric hospitals (O'Sullivan 1984; Robinson et al. 1986). Medicaid provided coverage for mental health care in inpatient and outpatient settings for all people with low incomes regardless of age. Medicare and Medicaid provided a financial means for supporting persons who were indigent and in need of longterm mental health care to be moved from state psychiatric hospitals to nursing homes. As a result, the nursing home industry grew rapidly. The percentage of nursing home residents with mental health problems is still recognized today as a problem (Sekscenski 1990). Today, comprehensive mental health care is lacking for residents of nursing homes despite the fact that mental function is a major reason for admission to nursing homes. It is estimated that over 60 percent of all nursing home residents have serious mental health problems (Evans 1991) Another law that had an effect on mental health services for elderly persons was the passing of the amended Title XVI of the Social Security Act in 1973 (O'Sullivan


30 1984). Also known as Supplemental Social Security, this act provided guaranteed income for older persons, people who are blind, and people with mental and physical disabilities. This act provided the financial means for people to be discharged from state psychiatric hospitals into boarding homes in their own communities. Changes in laws that affect the provision of services for persons with mental illness are occurring today. Information collected for this dissertation indicates that advocacy groups and people involved with the mental health system of care are paying close attention to the effort of the Clinton Administration to formulate a national health care policy. At the state and national level, advocacy groups are monitoring the progress of this proposal to make sure that mental health services are included. Historical Overview of Mental Health Legislation in Florida Florida, like most of the other states in the country, relied heavily on state-supported psychiatric hospitals for the bulk of mental health care prior to the enactment of the Mental Retardation Facilities and Community Mental Health Centers Construction Act (Robinson et al. 1986). Chapter 394 of the Florida Statute consists of four main parts: it is the primary law that governs mental health services within the state (Robinson et al. 1986). The first


31 part of this statute is the Florida Mental Health Act. This law is more commonly called the 11Baker Act11 because it was sponsored by Representative Maxine Baker, who was known as an advocate for mental health issues (O'Sullivan 1984). The Florida Mental Health Act of 1972 11 is often referred to as the bill of rights for the mentally ill in Florida11 because it gave statutory recognition to the rights of persons with mental illness (O'Sullivan 1984:9). This law also strengthened the rules for placing a person in a psychiatric facility involuntarily and dealt with the problem of keeping people in state psychiatric hospitals for long periods of time due to a lack of timely discharge planning. The Florida Mental Health Act of 1972 was amended three times in the period covering 1979 to 1982 in an effort to increase patients' rights, to strengthen the procedures for committing a person to a psychiatric facility, and to individualize mental health needs of people requiring treatment. The second part of the statute contains an interstate compact and the third part deals with residential and day treatment facilities for children (Robinson et al. 1986). The fourth part of the law provides the administrative structure and procedures for Florida's mental health system and is called the Alcohol, Drug Abuse, and Mental Health Services Act (Robinson et al. 1986). The identification of population groups who were thought to be at risk are


32 addressed in this portion of the statute under Chapter 394.75. The Florida Administrative Code implements the items described in this part of the law and specifically requires community mental health centers to provide services to meet the mental health needs of elderly persons. Also included in this section of the administrative code is the mandate that community mental health facilities work with Aging and Adult Services units to monitor the services provided by each of the agencies. The mental health needs of elderly persons living in the State of Florida have also been addressed in various planning documents (Robinson et al. 1986). In the Department of HRS Long-Range Strategic Plan for 1984-1989, one of the goals mentioned was a mental health overlay for elderly persons in residential facilities. Mental health overlay programs provide funding for mental health services for persons residing in adult congregate living facilities. In 1991, four million dollars was allocated on a statewide basis for these services (O'Sullivan and Speer 1992). The State Health Plan for 1985-1987 also addressed several issues pertaining to mental health services. Cooperative working relationships were suggested for local health planning councils and mental health planning councils. The plan also attempted ... to ensure the availability of mental health and substance abuse services to all Florida residents in the least restrictive setting; to promote the development of a continuum of high quality, cost


effective, private sector mental health and substance abuse services; and to develop a complete range of essential public mental health services in each HRS district (Robinson et al. 1986:26). 33 Legislative budget request plans for mental health services for elderly persons were also included in this plan. District HRS plans from the Alcohol, Drug Abuse, and Mental Health Program Offices are another source of mental health service provision as well as plans developed by the Department o f HRS to address specific needs such as the Plan for Deinstitutionalization of the Elderly in Florida (Robinson et al. 1986). Federal funding for Florida,s mental health service system is primarily obtained from the Alcohol, Drug Abuse and Mental Health Services block grant. As previously noted, while the federal government provided guidelines for how the monies should be allocated, the individual states had a tremendous amount of leeway in how these guidelines were interpreted. For fiscal year 1985-1986, Florida spent less than two percent of its overall community service budget for alcohol, drug abuse and mental health on services that directly affected the elderly portion o f the population (Robinson et al. 1986). This money was budgeted for mental health services for elderly people living in adult congregate living facilities (ACLFs). It is important to note that there are the same mental health services available to elderly persons as there are


34 for persons of other ages. In the state of Florida however, there are few attempts to ensure that older people get the specific services they need. There are a few other means for the provision of mental health services in Florida that are not included in the elements previously described. The Florida Mental Health Institute was established by the Florida Legislature in 1967. The Institute was created as a result of the Community Mental Health Centers Act of 1961, and 1n response to a study of the mental health needs in Florida by the American Psychiatric Association (Schonfeld 1992). The Institute opened in 1974 as part of the Florida Department of Health and Rehabilitative Services (HRS) to provide "practical education and applied research (underlined 1n the original) in prevention, intervention, and program administration. The goal is to improve Florida's mental health service delivery system" (Schonfeld 1992:6). In 1982 the Institute was transferred from The Florida Department of HRS to the University of South Florida, Tampa, Florida. In 1988, the Florida Legislature mandated that a task force be organized to review the mission of the Florida Mental Health Institute. The task force recommended that the Institute continue to focus on training and research activities to strengthen the mental health service delivery system 1n Florida and de-emphasize the development of clinical demonstration projects within the agency (de la Parte, et


35 al. 1988). The Florida Mental Health Institute continues to function as the major research and training facility for mental health issues in the state, including those for elderly persons. The Florida Legislature provided funding in 1974 for the development of model projects throughout the state that addressed gerontological mental health issues (O'Sullivan 1984; Robinson 1986). Thirteen projects were accepted for funding by a committee consisting of mental health and gerontology professionals from various areas of the state. These model programs were developed for persons 55 years of age and older, and included a wide variety of services including intensive residential psychiatric treatment, 11day treatment, outreach, education, staff-development, aftercare, volunteer services, individual counseling, family and group counseling, medication monitoring, residential care, remotivation therapy and emergency service11 (O'Sullivan 1984:13). In an effort to reduce the number of persons aged 55 and older in state psychiatric hospital s who were receiving little more than custodial care, new mental health programs were developed during the 1970's and 1980's. The Residential Aging Program, which was part of the Florida Mental Health Institute, began accepting patients from the state hospitals by the end of 1975 (O'Sullivan 1984). In 1977, 11Project Outbound11 was initiated at G. Pierce Wood


36 State Hospital to help transfer patients into more appropriate community settings (Robinson et al. 1986) Project New Directions was begun in 1978 at Florida State Hospital to help relocate older people who were residing in that facility into environments that were less restrictive than state mental hospitals. G. Pierce Wood State Hospital initiated a similar program a year later. During the early part of the 1980's, Geriatric Residential Treatment Services (GRTS) were established throughout the State to allow older persons with mental illness to remain in the community while receiving appropriate services. The Department of Aging and Mental Health, Florida Mental Health Institute, University of South Florida, was involved in the development of the GRTS system and continues to be an active participant today. Primary Mental Illnesses that Affect Elderly Persons While elderly people suffer from the same forms of mental illness that afflict the younger portion of the population, there are some mental illnesses that are more prevalent in older people. Additionally, treating geriatric neuropsychiatric problems requires specific skills that are not commonly possessed by traditionally trained primary care providers. Because of the attention the media have given Alzheimer's Disease, dementia is probably the mental health


37 problem most commonly associated with elderly persons today. In addition to Alzheimer's Disease, which is the most common form, dementia includes other organic brain disorders which are characterized by severe cognitive impairment (Fogel, Gottlieb and Furino 1990; O'Sullivan 1985). The main causes of dementia are Alzheimer's Disease, and vascular disease and strokes (Gutman 1992). Together these causes account for up to 80 percent of all dementia cases. Dementia produces cognitive changes that affect memory, language use, perception, learning and problem solving, judgement, and the ability to think abstractly (Gutman 1992). Behavioral changes that result from the effects of dementia include paranoia, irritability, and agitation that may lead to verbal and physical abuse directed at family members or caretakers. It is estimated that five percent of persons 65 years of age and older in the United States suffer from dementia (Fogel, Gottlieb and Furino 1990). This number increases to an estimated 20 percent for persons aged 80 or older. As many as two out of three older persons living in long-term care nursing facilities are affected by dementia (Fogel, Gottlieb and Furino 1990; Rader and Hoeffer 1991) Estimates indicate that somewhere between ten to 30 percent of the cases of dementia are treatable. These cases can either be reversed or arrested (Fogel, Gottlieb and


38 Furino 1990; Gutman 1992). Because of the relatively high success rate for treating older persons who exhibit symptoms associated with dementia, it is important that comprehensive medical assessments be made to determine the cause of the disease. Other treatable conditions, such as depression and drug overuse, may also co-exist with dementia; these problems could be contributing factors to the demented state. Alleviating these co-existing conditions often improve the person's quality of life even if the dementia itself is not treatable. Many persons with dementia are often cared for in their homes by family members, at least in the early stages of the disease. This treatment setting is the one of choice because persons affected by dementia tend to function better in familiar environments than they do with changing environmental settings (Gutman 1992). Because family members are often involved with the care of persons with dementia, it is important to include them in the overall picture pertaining to care (Dixon 1992; Fogel, Gottlieb and Furino 1990; Rader and Hoeffer 1992). Care is usually given virtually 24 hours a day and the physical demands on the caregiver are significant. Depression and other stress related emotional problems are very common for family members who are primary caregivers (Gutman 1992). While caring for persons with dementia can be mentally and physically exhausting for family members, making the


39 decision to place patients in a long-term care facility may also be stressful and if the stress is not handled properly, it can have lasting effects (Gutman 1992). Fogel, Gottlieb and Furino (1990:5) suggest that "Ideal care for dementia also addresses the needs of caretaking families before, during, and after the placement process." This can include respite care, help in dealing with emotional reactions to the situation, and education (Barrett 1993). Depression is another prevalent mental illness affecting older people (Kamholz and Gottlieb 1990). Prevalence rates for depression in elderly persons range from ten to 30 percent of those people who live w ithin community settings (Flemming et al. 1984; Fogel, Gottlieb and Furino 1990; Gallagher et al. 1981; Kamholz and Gottlieb 1990). Estimates are doubled for elderly persons living within long-term care facilities or have been diagnosed with a serious physical illness. Depression becomes clinically significant when persons report that they "feel bad" persistently to the degree that their ability to function or enjoy life are impaired ( Fogel, Gottlieb and Furino 1990). Geriatric depression is often subtle and is diagnosed in the absence of a depressed mood (Blazer and Williams 1980; Kamholz and Gottlieb 1990). More often, somatic complaints, such as loss of appetite and insomnia are presented to the health care professional,


40 instead of the outward expression of depressed mood, guilt, or suicidal ideation. The treatment of depression in older persons should only be started after a comprehensive physical examination has been completed (Kamholz and Gottlieb 1990) While some cases of geriatric depression can be corrected by treating medical problems or adjusting the dosage of some medications, most cases require drugs, such as antidepressants. Pharmacological treatment of late-onset depression may include the use of any one of a number of antidepressants. This method of treatment is the most commonly used. Electroconvulsive therapy, or 1 1electric shock treatment" has been used extensively for treating depression in elderl y patients for over fifty years with great success (Kamholz and Gottlieb 1990) This method of treatment has been shown to be particularly successful with older people who had previously shown a resistance to pharmacological treatment, or had severe depression accompanied by agitation or delusional ideation. Psychotherapy can be used as a treatment by itself or in conjunction with other forms of treatment. In addition to having an effect on an older person's quality of life, depression is implicated as a causative factor for the high rate of suicide in this portion of the population (Flemming et al. 1984i Fogel, Gottlieb and Furino


41 1990; Osgood and Brant 1991). For elderl y peopl e living in the community the suicide rate for 1985 for persons 65 years of age and older was 19.2 per 100,000, including 40.2 per 100,000 for elderly white men, while the suicide rate for the nation was 12.1 per 100,000 (Osgood and Brant 1991). Schizophrenia affects a relatively small number of elderly people living in the community. It is estimated that schizophrenia affects up to one percent of older persons not living in institutional settings (Fogel, Gottlieb and Furino 1990) In virtually all cases, schizophrenia begins to manifest prior to middle-age. For older persons with chronic schizophrenia, symptoms such as hallucinations may decrease in severity from the level present in their earlier years. However, they may suffer from the effects of using medication for many years. Treatment of schizophrenia usually consists of hospitalization during periods when psychopathology is severe, along with daily medication (Boaz 1991). Most persons with schizophrenia have been treated in state hospitals or other public facilities since the onset of their illness and are therefore familiar with the mental health service system in their area. Paraphrenia, or late-onset schizophrenia, usually has dramatic symptomatology and referral to a mental health facility usually occurs shortly after the onset of the illness (Fogel, Gottlieb and Furino 1990).


42 Brain diseases and dysfunctions, other than dementia. are prevalent in older persons and most are treatable after being properly diagnosed (Fogel, Gottlieb, and Furino 1990). Delirium in older people is associated with physical illness in most cases and is temporary in nature. Up to twenty percent of older persons admitted to general hospitals with conditions such as hip fractures or wh o recently had had open heart surgery experience delirium (Beresin 1988; Fogel, Gottlieb, and Furino 1990) Frail elderly persons can also have an onset of delirium due to environmental changes as well as physical illness without the usual changes in blood chemistry. Parkinson's Disease is the result of brain degeneration and affects about two percent of the population 70 years of age or older. Depression and cognitive impairment are present in almost half of the people affected by this disease (Partin and Rinne 1986) treated pharmacologically. This disease is usually Strokes affect approximately five percent of persons in the general population over the age of 65; approximately 50 percent of stroke patients experience depression (Fogel, Gottlieb, and Furino 1990). The depression is thought to be a consequence of brain damage incurred as a result of the stroke, because the degree of depression appears to be related to the location of the injury rather than to the severity of the disability. The depression associated with


stroke injury is usually treated successfully with antidepressants. 43 Approximately two percent of the population over 60 years of age are affected by epilepsy and about one third of these people suffer from depression (Fogel, Gottlieb, and Furino 1990) Drug treatment with antidepressants is complicated with this group because of possible interactions with anticonvulsant medication. Sawin, Castelli, and Hershman (1985) estimate that up to four percent of the elderly portion of the population have a deficiency in thyroid hormone which results in hypothyroidism. This condition can produce depression and cognitive impairment before other symptomatology is evident (Fogel, Gottlieb, and Furino 1990). Treatment of the physiological condition using synthetic thyroid hormone alleviates the mental health problems. Vitamin B12 deficiency, which is implicated as a contributing factor in up to twelve percent of older people with reversible dementias, is easily treated with the administration of B12 injections (Blazer, et al. 1989; Fogel, Gottlieb, and Furino 1990; Shulman 1967). Prescription drug psychotoxicity is a common and nearly always reversible problem for older people. It is difficult, if not impossible, to determine the incidence of this type of problem because the majority of psychotoxicity cases go undetected or unreported (Fogel, Gottlieb, and


44 Furino 1990) Due to the number of medications prescribed to many elderly patients and the possible concomitant use of over-the-counter drugs, drug interactions are common. Psychotoxicity can manifest as depression, insomnia, memory loss, anxiety, and confusional states, but these conditions are reversed after the offending substances are reduced or eliminated. Alcoholism is present in up to fifteen percent of the elderly portion of the population (West, Dupree, Schonfeld 1988). Alcohol abuse among elderly persons may have begun early in life and continued into old age, or resulted from reactions to losses or traumatic events that occurred in later life. Treatment for this disease usually follows the same course as does treatment for younger people with alcohol abuse problems. The prevalence of prescription drug abuse, like psychotoxicity, is difficult to determine but is thought to It is be fairly common (Fogel, Gottlieb, and Furino 1990). estimated that 85 percent of older persons living in the community take prescription drugs on a regular basis (Blazer 1989) Many times prescription drug abuse follows the same pattern as is found in younger groups of people. Blazer (1989:503) states, Older persons begin taking mild analgesics and sedative-hypnotic agents but fail to obtain the relief they desire. Without realizing the danger of addiction, they progress to the use of narcotic analgesics for chronic pain problems and higher doses of tranquilizing and sedative-hypnotic


agents. Once addiction and tolerance are established, the older adult exhibits little initiative to reverse the problem. Maladaptive emotional reactions to predictable crises in later life vary greatly in intensity, depending on the situation. Losses are one of the most common crises experienced by persons who are older and may include "loss of family and social contacts, reduction in work, economic 45 loss, physiological and health impairment, decreased social and cultural status, and lowered self-evaluation" (Dupree, O'Sullivan, and Paterson 1982:7). The type of loss that has one of the most profound effects on elderly persons is the loss of a lifelong companion or spouse. Fogel, Gottlieb, and Furino (1990:13) estimate that the ... prevalence of a clinically significant depression following the loss of a spouse in late life is more than 30 percent one month later and at least sixteen percent after one year". If this depression goes untreated for an extended period of time, the person may develop more serious, chronic neuropsychiatric problems. Older people face the same problems that younger people do, with the addition of major losses which are usually gradual but also incremental (Dupree, O'Sullivan, and Paterson 1982). Despite the fact that elderly people are in a high-risk group for developing mental health problems, there is a strong tendency for this group of people to


underutilize the mental health service system (Burns and Taube 1990; Schwartz and Stabinsky 1991). 46 Mental Health and Elderly Persons: Sociocultural Attitudes Ageism, or age discrimination, is thought to be one of the variables that helps explain the underutilization of mental health services by elderly persons (Dupree, O'Sullivan, and Paterson 1982). Some mental health professionals, as well as some members of the general public, hold the belief that investing effort in helping an older person overcome mental health problems is futile given their relatively short life expectancy and the notion that they have little to contribute to society (Spear 1976) Vesperi (1985:145) suggests mental health professionals hold a similar view and states that, "Unfortunately, the paradigm of traditional psychotherapy does not dispose doctors to view most events in later life as diagnostically significant." Older people themselves tend to be reluctant to ask for help with mental health problems due to social and cultural attitudes which may lead them to believe they do not deserve treatment (U. S. Department of Health, Education, and Welfare 1979; Vesperi 1985). Today, mental health issues are discussed freely in private circles, the public, and the media, which has helped to lift the stigma from seeking help


47 for mental health problems (Burns and Taube, 1990) This is a fairly recent development and many of today's older persons are not accustomed to such frank discussion of these issues. Not knowing how to access the mental health service system may be a factor in the low utilization rate by most older persons. The inability of older persons to arrange for transportation to mental health facilities can also inhibit use of the service delivery system. In general, some people regard seeking help with mental health problems as stigmatizing or a sign of weakness (Chamberlin 1985; Furino and Fogel 1984; Lave 1990; Vesperi 1985) Older persons may also fear that asking for help in dealing with neuropsychiatric problems is a sign that they are not able to take care of themselves and need to be placed in a long-term care facility. Burns and Taube (1990) suggest that while utilization rates of mental health services by elderly people are low in relation to the estimated need, this situation will change as members of the more informed baby boom generation grows older and requires services. Gender, Socioeconomic Class, and Ethnicity Those in the United States who are 65 years of age and older form a heterogeneous group (Hess and Kerschner 1978)


48 There is heterogeneity of gender, socioeconomic class, and ethnicity which must be considered when dealing with any issue pertaining to elderly persons, such as factors contributing to different rates of utilization of mental health services by older persons. Gender bias on the part of medical personnel was demonstrated to exist as recently as the 1960's and 1970's (Brown 1985; Donovan and Littenberg 1985; Hendricks 1984; Russo 1984). One study showed that male and female sex role characteristics were perceived by mental health professionals to be different for mentally healthy individuals (Bernard 1984; Brown 1985; Martin and Lyon 1984). Healthy men were described as being aggressive, objective and competitive, while healthy women were described as being passive, nurturing, and subjective. Furthermore, a mentally healthy "human" was perceived to possess the characteristics attributed to men Traditionally, physicians have been less likely to take complaints of older women seriously. For example, Few doctors are interested in them. Their physical and emotional discomforts are often characterized as "postmenstrual syndromes" until they have lived far too long for this to be an even faintly reasonable diagnosis. After that, they are assigned to the category of senility ... Yet more than 85% have some kind of chronic health problem, and both depression and hypochondriasis commonly accompany the physical ailments (Butler and Lewis 1977).


49 Today, physicians are more aware of the importance of complaints of older persons. For example, Kemp and Mitchell 1991:693) state, Functional assessment is a vital part of psychiatric intervention with older persons. Psychiatric impairments produce more than distressing emotional, cognitive, and physiological symptoms for the older person. Psychiatric impairments also produce functional deficits in terms of affecting what the person does and can do for himself or herself. The "world view" of older women today, as is described by Foner (1976) in a chapter that follows, has also influenced their willingness to use mental health services. Donovan and Littenberg (1985) suggest that young w omen around the time of World War II experienced similar changes in lifestyles. As the war ended, women who were employed in jobs previously held by men, were forced out of the work force by soldiers who survived the war. Behavioral scientists justified this transposition by promoting theories that described women as having a maternal instinct. This suggested that women should stay at home to raise children (Russo 1984). As a result, women returned home to fill the role of full-time "housewife". Those who may have had trouble adjusting to these changes and sought psychotherapy would have been in psychotherapeutic environments much different from what is found today. Contemporary feminists view traditional psychotherapy during the post-war period as a means of social control. They describe the therapeutic relationship as being


50 . based on authoritarian, patriarchal roles and reinforces women's sense of dependency and inadequacy; that a medical model treats unhappiness as pathology or as an illness; that the goal of treatment becomes adjustment not change; and that social problems are often treated as though they were the responsibility of the individual. (Donovan and Littenberg 1985:348) Another issue pertaining to gender is that older women in general are faced with socioeconomic factors different from those characteristic of men. On the average, women live longer than men and tend to be younger than their spouses at the time of their first marriage. Consequently, they are much more likely to be widowed as they get older (Arendell and Estes 1991; Butler and Lewis 1977; Mensh 1969; Stanford and DuBois 1991) Many older women who married never worked outside of the home and relied solely on the income provided by their husbands (Butler and Lewis 1977). As a result, they are forced to rely on the pensions provided to their spouses to supplement their Social Security Income. In some cases, these benefits are discontinued after the death of their spouse or in the event of divorce (Arendell and Estes 1991; Beile 1984) When older women did hold jobs outside of the home, they were typically paid less for comparable work, or held low paying jobs, a situation that still holds true today (Butler 1977; Mensh 1969; Russo 1984; Sorensen 1994; U. S. Office of Personnel Management 1987). This situation causes women generally to receive lower Social Security


51 benefits. Such socioeconomic factors, can have a profound effect on women's quality of life and ability to cope with stressful life events. These factors may also affect their decision to make use of mental health services that are available to them. Socioeconomic class for both sexes has also been suggested to affect the rate and type of utilization of mental health services (George 1989; Mensh 1969; Vesperi 1985). George (1989) suggests that older persons of lower socioeconomic status are less likely to use mental health services because of lack of financial resources and lack of insurance; this group is also less likely to recognize problems they are having as being related to mental health. Older people who are members of ethnic minorities are often placed in a position of double jeopardy (Butler and Lewis 1977; Dowd and Bengston 1978; Furino and Fogel 1984). Furino and Fogel (1984:27) describe the problem as multidimensional: First, there are differences in the biophysiological manifestation of disease among persons of ethnic minority background. Second, there are differences in the ways health care is sought and received among different sociocultural groups. Third, there are factors related to the lack of financial resources and underclass status shared by many members of ethnic minorities. Fourth, minority groups may be culturally unprepared to fully utilize available institutional services ... Bengtson and Morgan (1983) have questioned the double jeopardy hypothesis, however, proposing that aging acts as a


52 leveler since the problems faced by aging individuals cross ethnic boundaries. Based on Bengston and Morgan's study involving three ethnic groups, whites, blacks and MexicanAmericans, the minority groups did seem to face a double jeopardy situation with respect to income and health. This effect could not be shown however, using life satisfaction and social interaction measurements. Schweitzer (1983:176) demonstrated that research derived from studying two Native American communities indicate that social structures and attitudes exist that provide support for the Indian elderly, even though certain inequities exist which stem from a unique historical relationship to the majority society. While more research is needed to test the double jeopardy hypothesis, certain factors, such as lower life expectancy, lower socioeconomic status, and cultural differences among older persons belonging to minority and ethnic groups, are realities (Lammers 1983). Most statistics reporting mental health utilization rates do not take these factors into account. Those statistics that do take minority groups into account, indicate that public programs that consider the special needs of elderly persons who are also part of an ethnic minority group lag behind those programs that are available to older persons in general (Hudson and Binstock 1976). Russo (1984:29) warns that mental health statistics derived from patient studies


have limited usefulness to policy makers unless the sex, race/ethnicity, and age of patients as well as type of facility, are known." Advocacy 53 Advocacy is one means of producing change in mental health policy. The word "advocacy" has been used in so many ways in the literature that it has become necessary to define exactly what is meant by the term (Sosin and Caulum 1983; Wolfensberger 1977). For the purposes of this study, advocacy means speaking or acting on behalf of a person, group, or issue with the intent of providing assistance, usually in the form of action or change (Kopolow and Bloom 1977; Wolfensberger 1977). Friesen (1989) suggests there are three main levels of advocacy; case, agency or program, and class or system. Case advocacy refers to efforts on behalf of an individual or family. Advocacy endeavors directed towards entities such as a Board of Directors of an agency to change things like admission eligibility requirements is an example of agency or program level advocacy. Class or systems advocacy refers to broader issues that affect entire groups of people, such as elderly persons, and is usually directed towards legislators. This dissertation primarily focuses on the latter level.


54 Effective advocacy "is not so much knowing the ways in which systems can work better but rather how to cause them to do so" (Lardie 1989:45). Assistance in learning strategies and methods for becoming effective advocates is available from various organizations throughout the country. Lardie (1989) describes an overview of the basic components for effective advocacy. The first step in developing strategies for effective advocacy is issue identification (Lardie 1989). In order to get a clear understanding of the issues being addressed, a list of questions are presented which should be answered before any other action is taken. According to Lardie, (1989:49) an advocacy group should: 1. Define the problem or issue. (How many people have the problem; how pervasive is it in their lives?) 2. What are the causes of this situation? 3. What do we want changed about this situation? 4. What results do we want to see ideally and what will we settle for? 5. What are the barriers to change? 6. What are the resources to facilitate change? 7 Who has the power to make these changes? 8 How would we access that power (directly or indirectly)? 9. What legislative, administrative, or judicial strategies would we need to employ to bring about change? 10. What are our chances for success with this problem?


55 After the issues are prioritized based on their importance, issues with the greatest chance for success should be selected. The selection process would be based on the organization's commitment and choice of priorities, significance of impact, clarity of the issue and strategy, potential for success, possibilities for networking, and citizen and financial support. After laws are passed, it is important to monitor the progress of the implementation of the laws, which is commonly known as "watchdogging" (Lardie 1989). This type of administrative advocacy should be considered a necessary and ongoing process by organizations. Ombudsman programs are excellent examples of this type of monitoring (Committee on Nursing Home Regulation, Institute of Medicine 1986) These programs emerged in the 1970s and were designed to provide consumer protection in the form of advocate involvement in the regulation and operation of nursing homes. Working on the funding of programs is another important aspect of advocacy. Lardie (1989:51) states, "The budget of the state ... is the most important piece of legislation for advocates to focus their work regularly. Dollars drive programs and advocates should drive dollars." Support components for all levels of advocacy are necessary in terms of effectiveness or implementation. Research involves documenting the problem in a way that is


56 easily understandable and usable for policy makers, as well as providing possible solutions. Good communications skills are useful in bringing attention to issues. Lardie (1989:52) suggests that, "Professional credibility with editorial boards and reporters from all media must be developed. Finally, an advocacy organization should develop plans that would enable their group to mobilize into action when needed in order to have impact on the issue that is being promoted. Public Policy The third level of advocacy described by Friesen (1989) is directed at changing public policy at the legislative level. Advocates are most effective when they are familiar with the policy formation process and policy research. While there are many similarities between the steps advocates can take to change or initiate new policy and policy research, the differences are significant enough to present them separately. Majchrzak (1984:12) defines policy research as being, ... the process of conducting research on, or analysis of, a fundamental social problem in order to provide policy-makers with pragmatic, action-oriented recommendations for alleviating the problem. She stresses that this type of


research is unique because of its focus on action-oriented endeavors. 57 Majchrzak (1984:18) suggests there are five characteristics that all types of policy research have in common. First, policy research is multidimensional in focus; research efforts examine all factors that might affect a problem. Secondly, policy research uses an "empirico-inductive" research orientation meaning that, unlike the hypothesis-testing approach, it does not take one specific approach to solving multifaceted problems. Thirdly, policy research considers the future as well as the past while studying a problem. Fourthly, policy research is responsive to the specific needs of the study users. Finally, policy research "explicitly incorporates values." Majchrzak (1984) identifies five processes common to policy research activities; preparation, conceptualization, technical and recommendations analyses, and communication. The four primary issues that should be considered during the preparation for policy research include determining the context of the problem from a policy-maker's viewpoint, demarcating the range of options pertaining to the problem being studied, identifying the types of recommendations that are feasible, and calculating the resources that are needed and available. After completing the steps listed above, a determination should be made on whether or not the problem warrants additional action.


58 The conceptionalization process begins with developing a precursory model of the problem being investigated. A literature review could be conducted at this point if one has not already been completed. This activity is followed by formulating specific research questions that are based on the type of impact desired, focusing on a specific aspect of the problem being studied, and identifying variables that are amenable to change. Lastly, the researcher should determine whether the investigation is a group or individual effort. Technical analysis includes the operationalization of the variable being studied, devising the methodology, collecting data, and generating conclusions and tentative recommendations. After the preliminary recommendations have been developed, they are analyzed to determine their feasibility, estimate the possibl e repercussions of their implementation, appraise the likelihood of their implementation, and prepare a set of final recommendations. Communication is the final segment of policy research. If possible, communication with policy-makers should commence at the beginning of the research effort to increase the likelihood that the results will be used. Data resulting from the study are best received if they are presented in a customized fashion to the various people who might use the information. For example, a Board of D irectors may be interested in a detailed version of the


59 study, while a legislator would probably prefer a shorter version with only salient information being included. Effective presentation of the information is one of the most important components of communication, especially if it is presented orally, which is the preferred method of dissemination. The outline of policy research procedures presented above is only one of many designs that persons interested in policy formation may use as a guideline. While the information was presented by Majchrzak (1984) was directed at social science researchers, the information can be adapted by advocacy organizations to assist them with their efforts. Policy Implications for Treating Elderly Persons Who Have Mental Illness There are several reasons why policy has lagged behind need in terms of mental health service provision for older persons. Some policy-makers doubt the effectiveness of treatment for older persons who have mental health problems because the problems are often seen as a normal function of aging and, therefore, untreatable (Burns and Taube 1990). This view is similar to the one presented above relating to the attitudes of some health care providers. Another factor that has discouraged policy-makers from acting to improve mental health services for elderly persons


60 is that prior to this decade, epidemiological estimates for this portion of the population were high and tended to be unreliable (Burns and Taube 1990). Even if the data were correct, the cost of providing the amount of service needed would be prohibitive. One of the most persuasive arguments being presented today for the provision of mental health care services for elderly persons is that it is cost effective in some cases (Furino and Fogel 1990). For example, providing outpatient counseling in a community mental health center for someone suffering from acutely severe depression or anxiety is much less expensive than admitting that person to an inpatient facility if outpatient therapy is not provided. Also, it has been shown that providing services that enable a person to continue to perform activities of daily living will postpone the need for them to enter a long-term care facility or nursing home (Burns and Taube 1990) From a more humane perspective, providing neuropsychiatric treatment to older adults helps to improve their overall quality of life (Burns and Taube 1990) As the baby boom ages, there is little doubt that more pressure will be placed on policy-makers to make sure provisions are made for mental health services for e lderly persons.


61 CHAPTER THREE. THEORY Age Stratification in the Mental Health Services System Foner (1976) has suggested age stratification theory as a means of studying age as part of society. It is based on a broader concept of social stratification, which examines many different forms of social inequality such as class systems. The "examination of the age stratification system both in its kinship with other forms and in its uniqueness holds promise of enhancing our understanding of how age is built into the social structure" (Foner 1976:14). Foner (1976) suggests that social stratification be interpreted as a generic term referring to any social hierarchy, instead of pertaining to a specifically economic position or lifestyle, as most social scientists use the concept. This model or paradigm of stratification has three main features. In the most general sense, social stratification is simply some sort of social inequality. This inequality can be based on power, wealth, or prestige, for example, and comes about as the result of different social processes that define these roles, and determines who fills the roles (O'Rand 1990). Stratification is also inclusive in that it encompasses the entire range of social


62 roles and all members of society. Persistence is the third characteristic of stratification and refers to a social system that remains fixed in terms of criteria needed for entering particular social roles and the privileges that come with those roles. Age stratification fits the more general social stratification model in that it has the three characteristics described above, according to Foner (1976) Age is used to define the various social roles people may enter, and the privileges which come with the roles. Age strata cut across the entire society since all individuals are ranked according to age. Since the criteria for being a member of a particular age stratum remain fairly consistent, even though individual members may come and go, age stratification persists through time. One of the most important aspects of age stratification is that it is dynamic; as individuals age, they pass from one age cohort or stratum to another (Bengtson and Cutler 1976; Foner 1976) Individuals as well as social institutions are affected by age stratification. On an individual level, the age stratum determines a person's "access to the desiderata of the society and shapes his behavior and attitudes in myriad ways" (Foner 1976:17). Because of differences in wealth and power for example, individuals have unequal opportunities to achieve goals within the stratum. Cohort membership is also


an important aspect of age stratification because the particular period of time, with its associated events, defines a common accumulated experience which can have an effect on society in general. Mannheim (1964) refers to 63 this characteristic as collective mentality. Bengtson and Cutler (1976:132) describe the effects this phenomenon has on general society, and state, . when viewed from the perspective of social movements, these effects may be intertwined with other aspects of differentiation in a manner producing historically-conscious generation units -subgroups within birth cohorts with particular ideologies leading to collective action or distinctive lifestyles. For example, people who grew up during the Viet Nam War share that war as a common experience. A large group of students and others belonging to the younger age cohort during this period of time became very active in anti-war demonstrations. Flacks (1967) suggests that the reason only a portion of this age cohort participated in the political activity is explained by the concept of the revolt of the advantaged. Bengtson and Cutler (1976:151) proposed that even though the opportunity to participate in the anti-war demonstrations was an option for all younger persons, . it was often the socioeconomically advantaged and college-enrolled youth who, for a variety of resource and opportunity reasons, became the focal point of political activity. Our society is still experiencing effects of this war. As a result of fighting in the war, many veterans


64 and military personnel who are part of the same cohort have to cope with post-traumatic stress syndrome. Predictably, this cohort of individuals who fought in the Viet Nam War will have members develop newly emergent cases of posttraumatic stress syndrome as this group ages in the coming decades. Forrer (1976) points out that stratification has evolved from classic theorists such as Marx and Weber. Based on class distinction, early theorists were interested in how members of the same stratum, who shared many similar properties, developed a sense of community or social group (Bengtson and Cutler 1976) Forrer (1976) suggests that thinking of age as an axis around which social relationships form is important for understanding age as being part of the social structure. Social relations can be examined both within and between age strata. Forrer (1976) proposes that age solidarity might be very predictable because the people in a given age cohort have had common opportunities to fill valued roles, share common life tasks, are similar in terms of biological development, and they have lived during the same period of time and therefore have a similar historical perspective. Other factors which promote cohesiveness include physical proximity, ease of communication with members of the same group, and relative isolation from people in other strata.


65 Members of past generations did not segregate themselves by age. In addition to issues such as social support within individuals' environments, a comfort level associated with being a life-long resident of ethnic neighborhoods, and mobility, another side-effect of this solidarity is social and residential age segregation in the United States (Foner 1976) This separation on a social and physical level can add to the isolation, especially from family members, older people commonly experience. The many retirement communities that have been developed, such as Sun City Center in Ruskin, Florida, are examples of cohort cohesiveness at the residential level. While the issues presented above "converge to make age a primary reference point for social interaction and to lead to consciousness of kind" (Foner 1976:20), age strata do not always emerge as groups with solidarity. Foner (1976) suggests that within-group unity is weakened when the lines dividing the various strata are not clear. This solidarity is weakened further because in the United States, there are many types of social stratification which cross-cut each other so that the age stratum cohesiveness is affected by socioeconomic class or ethnicity, for example (Bengtson and Cutler 1976). Also, there is a continuous movement of individuals in and out of the various age strata which causes members to work endlessly on rebuilding affiliation patterns.


66 Conversely, members of an age cohort experience the same period of history together and therefore have a common past and future. Foner (1976:22) suggests that solidarity is promoted in this way . . shared experiences-whether of the national heroes of an epoch, styles of speech or dress, or cataclysmic event such as depression or war in their youth -can spark a sense of community among members of any particular cohort. Relationships between age strata can also have an effect on society as a whole. Foner (1976) proposes that there are two important sources for age conflict between cohorts. First, there is thought to be an intrinsic strain in the superordinate-subordinate relationship which produces power differentials between age groups. Second, the structure and dynamics of age stratification seems to produce endemic tension. Foner (1976:23) states: On the one hand the continuous flow of cohorts creates the eternal problem of regulating social replacement. On the other hand, an important part of the age structure of roles is the institutionalization of age criteria for role entry and role exit -a way of helping to manage cohort flow." This can have a decided effect when a person enters and exits social roles; conflict can result when persons are forced out of roles before they are ready to relinquish them or want to enter roles but are kept out. For example, the military establishment in the United States has age ceilings for persons entering military service for the first time.


People over the age of 35 are ineligible to enlist in the armed forces. 67 The configuration of the age stratification, the number of strata and the proportion of the population in each, and the ranking of each stratum are also thought to affect relations between age cohorts. Foner (1976) describes the dynamics of age stratification in terms of age mobility and changes in age structures. When one goes beyond the physiological and psychological aspects of aging and views the aging process in terms of social mobility, a new perspective arises. Social mobility, as described by Foner (1976), refers to the movement of individuals up or down a social hierarchy. In an age-related context, as an individual moves among the age-related social roles, he or she receives different rewards. This movement is unidirectional in an age-related context since an individual can never get younger. By comparison, social aging, or age mobility, is not necessarily unidirectional as is demonstrated in the example of women returning to the work force after having raised their children, given below. The structure of a society's age stratification is an important aspect of society in general (Foner 1976). For example, in the United States, the greatest rewards associated with roles tend to go to those who are in the middle of the age continuum. Thus, as a person ages, he or


she reaches maximum potential for attaining rewards associated with role achievement during middle age. As a person ages, this reward potential is reduced as social rewards are withdrawn or reduced. This decrease in role status is usually involuntary. Forced retirement is an example that demonstrates a decrease in role status and monetary rewards. 68 Another factor to be considered in association with age mobility is the situation in which individuals get out of synchronization with their age mates. For example, women who did not work outside of the home while raising their children and later returned to school to prepare for entry into the work force, are placed in direct association with a younger age cohort which is typically associated with being in school. Foner (1976) calls people who fit into this category "age incongruents". When the number of age incongruents becomes sufficiently large, relations among the various strata may become strained as age incongruents associate more with people in a younger age group. This changing of age definitions is another effect large numbers of age incongruents have on society. Changes in the age structure in the United States have occurred which may produce long-term effects. Foner (1976) suggests that the number of age strata have increased during the last several years. For example, instead of people being divided into young, middle, and old age categories, it is now recognized


69 that there are childhood, adolescence, a postparental phase, and at least two categories of old age. As the number of categories increase, the boundaries between the strata tend to become blurred. As the number o f strata increases, the perception of being able to move from one stratum to another becomes more positive. Also, the proportion of the population who occupy the various age strata have changed, and will continue to change as the "baby boom" generation ages (Furino and Fogel 1990; Myers 1990). As the United States changed from a primarily agricultural to industrial society, there has been a shift in the status of the strata from old to middle age. Forrer (1976:31) concludes her presentation of age stratification theory by stating that ... just as we cannot fully understand any one age grouping without seeing its place in the whole age structure, we cannot completely comprehend a system of age stratification without examining its place in the family of stratification systems. The study of aging cannot occur in isolation, but must be studied with attention being paid to society as a whole. For purposes of this discussion I will equate age stratum with cohort. It is not surprising that the provision of mental health services for older persons has lagged behind that which is available for other portions of the population, based on Forrer's (1976) theory of age stratification. In the United States, people who are in the middle-age cohort typically are the ones who fill roles


70 associated with power and prestige. Based on this, it is not surprising that middle-aged legislators have not focused readily on mental health issues pertaining to the aged, but have focused instead on mental health service provision for children and younger adults. Another problem that one encounters when discussing mental health services for elderly persons is that even when services are available, this age group tends not to make optimal use of the services provided (Burns and Taube 1990; Schwartz and Stabinsky 1991), or they don't think of mental health services as part of "normal" health services (Kane and Kane 1990). Historically, this cohort grew up in a period of time that preceded many of the major milestones in treatment of mental illness. Too, during this period of time mental health issues were not discussed openly. Growing up during the Depression may have given this cohort a sense of perserverence and independence for having lived through this terrible period of our history, which may, in turn, foster the idea that they should be able to "bite the bullet" and handle things without outside help. Many people, including elderly persons, attach a stigma to seeking and receiving mental health services. Clearly, as Foner (1976) points out, the fact that this cohort shares a common historical perspective has an effect on how the members perceive social issues. Perceptions of mental


71 illness that younger people may find outdated and incorrect are nonetheless shared by this group of older people. Researchers have suggested that as the baby boom generation ages, gerontological issues will take on greater significance (Bengtson and Cutler 1976) Changes in the structure of age strata often are followed by changes in societal views. The significant increase in the number of people who will live to old age will almost certainly change how our society views issues pertaining to older people. Given that the baby boom generation now hold positions of power in this country, and given that there is an acute awareness of the significance of this large number of people approaching old age, there is hope that changes will occur to help improve the condition of older people before this middle-aged cohort crosses into the next age stratum. Evidence for this optimism is President Clinton's goal to construct a National Health Care Plan for all Americans. While some people at the federal level, such as Senator Edward Kennedy, have been proposing this type of legislation for years, it has been only since President Clinton, a "baby boomer", has taken office that the idea has gained national attention. It may take several years before a National Health Care System is approved into law, but the process has begun.


72 CHAPTER FOUR. METHODOLOGY This chapter describes the methods used for data collection for this study. Information was obtained primarily from conducting semi-structured interviews with key informants who reside in Florida. Participant observation was also employed during a state-level lobbying effort that was undertaken by a well known advocacy group with national, state, and local affiliates. Research Methods This study employed two research methods that have been used most often by anthropologists for collecting data during fieldwork studies; participant observation and key informant interviews (Pelto and Pelto 1978) Bernard (1994:136) suggests that key informant interviews are a type of participant observation, and states, "Participant observation, or ethnographic fieldwork, is the foundation of cultural anthropology. Bernard (1994:140-142) cites fives reasons for employing participant observation for gathering data. These are: 1 ) participant observation allows the researcher to gather a variety of different of data, 2) participant


73 observation reduces the possibility of people changing their behavior as a result of the knowledge that they are being studied or are providing information, 3) participant observation helps the researcher formulate questions that could be used to collect data, 4) participant observation allows the researcher to acquire an intuitive understanding of what is going on so that the meaning of the data can be discussed with confidence, and 5) participant observation may be the only method available to gather data from a particular situation or environment. Key informants primarily are selected based on their knowledge of specific information, or expertise, in specific areas (Bernard 1994; Tremblay 1957). Willingness to participate in the research effort, understanding the nature of the information being sought, and having the ability to relate information, are also important characteristics to look for when selecting key informants (Bernard 1994; Pelto and Pelto 1978). Many times, key informants hold high ranking positions in their culture or organization which tends to give them access to information that is not readily available to other members of the group (Pelto and Pelto 1978). All of the key informants selected for this study were willing participants. All were knowledgeable in the areas of public policy, mental health, and/or gerontological issues for the State of Florida, and all were leaders or


directors of their organizations or were directly involved with policy-making decisions at the state level. 74 An interview guide was developed, based on information gathered during participant observation fieldwork, consultation with initial key informants, and policy formulation literature (Bernard 1994; Pelto and Pelto 1978). This guide was used while interviewing key informants to ensure that all subject areas were covered. A copy of this interview guide is found in Appendix A. Participant Observation During the 1990 Florida Legislative Session, I was invited to observe the planning and execution of lobbying efforts by a state-wide organization consisting primarily of advocates for mental health issues. I gained entry into this group through the use of personal contacts, a technique suggested by Bernard (1994), so my presence at the meetings was not a surprise to the leaders of the group. The group leaders also were aware of the purpose of my attendance, to gather data for my dissertation. The other members of the group had no reason to question my presence at the meetings and were likely to assume I was a new member of their organization. They were not aware I was doing research. The planning meetings were held in Tallahassee, Florida and lasted for two days. Because I did not have the


75 opportunity to spend time with the group I was studying before the meeting, this type of participant observation may be referred to as "rapid assessment" (Bernard 1994) or "rapid appraisal" (van Willigen and Finan 1990) While I was attending the planning meetings I took hand-written notes on the information being discussed and on my observations during the meeting. In order to be unobtrusive, I did not record the proceedings on audiotape at the meeting, but rather dictated notes on an audiotape recorder in the privacy of my hotel room immediately after the meeting in an attempt to retain as much information as possible. The main purpose of the group convening in Tallahassee was to identify issues that they intended to bring to legislators' attention, and then to contact each legislator or key legislative aide to provide with information and ask for support in the issues they were identifying as important. Throughout an entire day, this organization acted as a group and individually in an effort to convey their ideas to policy-makers. I observed all of the group activities as they visited with legislators who were "assigned" to them, providing them with information both face-to-face and in written form.


76 Key Informants and Semistructured Interviews Initially, a list of key informants was compiled through consultation with people who were recognized as knowledgeable in the areas of elderly issues, mental health, and public policy in the State of Florida. The experts who were initially consulted were associated with the Florida Mental Health Institute, University of South Florida, Tampa, Florida. The Florida Mental Health Institute is recognized as a major mental health and policy entity in the state (Torrey et al. 1990). The initial list of key informants included members of consumer/advocacy groups, agency directors, and policymakers whose interest and work coincided with the subject of this study. An effort was made to choose people who could offer a state perspective as opposed to a local or regional perspectiv e even though some informants' duties primarily were regional. Addresses and telephone numbers were obtained for all of the persons on the key informant list. Form letters were addressed individually and sent to each person which described briefly the research effort and alerted them to the fact that I would be contacting them by telephone during a specified period of time in order to set up an interview appointment. A copy of this document is found in Appendix B. An attempt was made to contact each prospective


77 informant within ten days of the date on the letter. If the person was not available at the time of the initial telephone call, a message was left with either the individual answering the telephone call, or an answering machine. Personal contact was made with each informant on the list within fifteen days of the original attempt to make contact. When speaking with perspective informants over the telephone, I gave a brief overview of my research project and informed them that they were identified by experts in the field of mental health, gerontology, and/or public policy analysis as being knowledgeable in one or more of the areas mentioned above. They were then asked if they were willing to participate in this study. Some people asked for additional information both verbally and in the form of written questions. Based on a pilot study, I advised that the interview would take approximately 30 to 45 minutes but that there were no time constraints in either direction. All but one person agreed to participate in the study and appointments were set for interviews. Interviews were conducted either in person or by telephone, depending on the preference of the informant and geographical considerations. All of the informants in the Tampa Bay Area preferred that the interviews be conducted in person. At the beginning of each of these interviews, I asked for permission to record the interview for reference


78 purposes. Some informants inquired as to whether or not the information given to me during the interview would be confidential. I assured them that names would not be associated with any information that was provided during the interview, nor would a list of names of key informants be listed anywhere in the dissertation. No request to record the interview was denied. During one face-to-face interview and two telephone interviews, the informants asked that the some of the information about to be given be "kept off the record" and not be used as part of the data I collected; the information was given to help explain a point or idea that was being presented. That request was honored. Interviews that were conducted using a telephone were recorded by placing an audiotape recorder next to the speaker component of a speaker phone. Recording the interview in this fashion also allowed me the opportunity to record written notes during the interview process. Prior to the interview, some informants requested that I send a list of questions pertaining to the information I was seeking. A copy of the "Interview Guide" was sent by mail or facsimile with the caveat that the information I was sending was designed to be used by me as a guide during the interview and was not a list of formal questions that I planned to ask each person. At the beginning of each interview I gave informants the options of "just talking off the cuff" in a free form


79 style, or using a more structured style with my asking for information in general areas. While engaging in the free form style of interview, major areas were checked off as informants provided information in specific areas. If there were areas for which I was seeking information that were not covered in the general discussion, I would ask questions to elicit information in those areas. All of the informants offered the names of people who might be willing to participate in this study and who could provide valuable information. The list of key informants was considered to be complete when the same names were g iven repeatedly with n o new ones being added. All of the tape-recorded interviews were transcribed to help facilitate the data analysis process. The data collected from each of the informants were then separated into major topic areas based on the research questions that I used as an interview guide. After this process was completed for all informants, a master list was compiled which contained all responses from the informants for each question. At every phase during data analysis, all material was linked to the person who supplied the information. For each research question, data were separated into three groups: responses from advocates, policy-makers, and service providers. The data were refined further by categorizing each group's responses into more specific categories. For example, for each group, information


80 pertaining to each question was separated into subcategories such as "funding," "advocate versus lobbyist," or "mental health policy and elderly persons. During this process of categorizing responses, it became necessary to assemble an additional category, "Other Issues Not Included in Research Questions" since a large number of responses pertained to subjects other than the ones for which I was soliciting information and seemed to be relevant or important for inclusion in this study. Upon completion of the data reduction process, I had a summary of data for each question, for each group, arranged in alphabetical order so that presentation of the data would be comparable for all three groups. The next chapter presents a summary of the information obtained from the participant observation fieldwork and key informant interviews.


81 CHAPTER FIVE. RESEARCH FINDINGS This chapter presents data obtained during participant observation fieldwork, a description of the key informants who participated in the semi-structured interview portion of this study, and a summary of their responses. Several informants asked to remain anonymous, and some information was considered confidential; therefore, only a brief description of individual persons will be presented. A summary of the data will follow. Full transcripts and audiotapes of the interviews are in my possession. At the beginning of each major section, the research question or questions that were used to elicit information will be presented in italicized type. Participant Observation In May of 1990, during the regular session of the Florida Legislature, I was allowed to observe advocacy efforts that took place in Tallahassee on behalf of a statewide, non-profit organization which focused primarily on mental health issues. The effort lasted two days, and consisted of an annual organizational meeting, a strategic


82 planning meeting, meeting with the Speaker of the House as a group, and meeting with legislators on a one-to-one basis. The organizational and planning meetings occurred in the meeting room of the hotel in which most of the members of the advocacy group were staying. There were approximately 50 people in attendance. Most of the participants appeared to be between 50 and 60 years of age; there were very few members who appeared to be younger than this age range. I learned during the course of the meeting that most, or all, of the participants were the parents of individuals who had chronic, severe mental illnesses. During the first meeting, reports resembling committee reports, were given by "panel" members. These presentations were followed by a question and answer period that focused on specific problems having to do with respect to the provision of mental health services that members of the advocacy group were having. For example, one participant described a situation in her community where an individual who experienced chronic and severe mental illness was arrested as the result of displaying "bizarre" behavior in a police station while in a delusional state. Because the behavior included a threat on the President of the United States' life, the individual was arrested and federal agents became involved. At the time of the meeting, the individual was being held in prison. The person describing the incident appeared to be frustrated


83 with the situation and was asking for assistance and information in helping to resolve the problem in a manner more beneficial for someone with severe mental illness. The group suggested the sequence of action that should be taken would be to contact the case manager, client manager, Alcohol, Drug Abuse, and Mental Health Program Manager, and finally the Alcohol, Drug Abuse, and Mental Health District Supervisor, in that order, if there was not a satisfactory resolution to the situation. Many times, individuals would relate to the group stories or problems that affected themselves or family members directly. In every case, the advocacy group members were given advice for resolving their individual situations. During the final phase of the meeting, two major issues were identified that the group would focus on during their advocacy efforts the f ollowing day; case management and client managers. They indicated that case management had been an ongoing problem primarily because case workers were assigned more cases than they could handle effectively. This was thought by the members to be a major reason case managers "burned out" so quickly which resulted in case managers quitting their jobs. This ultimately led to many people serving as case managers over a short period of time. It appeared that the group held client managers, who supervise case managers, responsible for the ineffective system. During the discussion of the issues, it was


84 apparent, however, that the group members realized that the actual problem was that there were not enough personnel to perform case management effectively. It appeared that because of their frustration with the system, they tended to focus their anger toward the individuals working as case and client managers. Their goal was to alert Florida's legislators that there was a problem in this area and ask for their assistance in getting more funding so that adequate personnel could be hired to perform the duties of their jobs more effectively. The meeting ended with a brief description of the strategy the group would use while attempting to contact members of the legislature. The second meeting took place in the same room early the following day. Members were advised of what was expected of them, and were given instructions on how to carry out their assignments. In brief, everyone was assigned specific legislators with whom they were to meet, if possible, in order to present their issues. If the legislators themselves were not available, members were advised to speak with one of their legislative aides. Minimally, information in the form of printed material was to be left with personnel in the legislators' offices if a meeting could not be arranged. Additionally, members were asked to attend a scheduled meeting with the Speaker of the House as a group at a specific time in the afternoon.


85 I was invited to follow group members as they pursued their advocacy effort. I agreed, and rode to the State Capitol Building with a group of the organization's members. Since the legislature was in regular session, it was difficult to speak directly with individual legislators, but an advocate was typically able to speak with at least a legislative aide for members to whom he or she was assigned. When such a personal meeting was not possible, the advocate could leave the information with office personnel. In every instance that I observed, the advocates seemed to be listened to and treated with courtesy. The legislative aides seemed genuinely to want to hear what was being presented, but they wanted the presenter to be done as quickly as possible so they could get on with other duties. In fact, the entire time I spent in the Capitol Building and offices that were associated with the legislature, there seemed to be a sense of urgency, even in the legislative committee meetings. The meeting with the Speaker of the House was held in a large reception area of his office. The leader of the organization of which I was a part acted as spokesperson and presented the group's issues and concerns. He responded by stating that he understood the concerns of the group and that he and other members of the legislature were working towards solving some of the problems presented. No specific plans or solutions were identified, however.


86 There were no other activities planned for the day, but the entire group met informally in a cafeteria on the premises to discuss our various experiences and to share our observations. Informants The informants were separated into three groups; advocates, policy-makers, and service providers. This separation was used throughout the transcription and analysis process. While engaging in the free form style of interview, major areas were checked off as informants provided information in specific areas. When they finished giving me information, I would ask questions to elicit information in those areas not spontaneously covered. Four of the six advocates were members of well established, non-profit advocacy organizations. While all of the groups represented had local affiliates, the persons representing their organizations were active at the state, and sometimes national, level. Two advocates were not readily associated with any one particular organization. One person was noted for advocacy efforts that span several years on behalf of elderly persons living in the State of Florida. The other informant had also been involved in advocacy for many years in Florida and elsewhere, and has


87 interests in a range of subjects, including mental health issues. All of the advocates were unpaid, even if they were associated with state organizations. This group consisted of three men and three women. All five informants in the policy-maker group currently worked, or had worked, in state level government or organizations that dealt specifically with policy formulation. At least three of the five individuals were identified as having a special interest in issues pertaining to older persons. Coincidentally, all five policy-makers were women. Both informants who were service providers were the directors of regional non-profit organizations that deal directly with the needs of elderly persons. These two informants represent different regions in the state as defined by Florida's Health and Rehabilitative Services Districts. Both are involved, on an ongoing basis, with policy issues pertaining to older persons. There was one man and one woman in this group. There were a total of thirteen key informants used in this study. All of the informants listed above completed the entire interview process.


Summary of Findings For each area of inquiry, the responses of the key informants are preceded by questions from the interview guide which appear in italicized type. 88 Who are the advocates? How do they become advocates? How do they become recognized as advocates? Are there specific credentials needed to become an advocate? Advocates, policy-makers, and representatives of provider agencies named non-profit service providers and organizations as those who were most responsible for engaging in advocacy activities in this state. Non-profit service providers are seen as being aggressive and effective in their efforts to gain additional funding for mental health programs and facilities. Organizations reported included local, state, and national chapters of associations focusing on various areas of mental health. Not surprisingly, the state level organizations were considered to be the most active in terms of advocacy. One policy-maker described at length how one organization working at the state level was successful in its advocacy efforts. This informant stated that during the time the Department of Elder Affairs was being created, the Chair and Vice-Chair of one of the legislative committees was against forming this office because it was thought to be


89 special legislation for the Florida Chapter of the American Association of Retired Persons. As a result, one of the legislators on the legislative committee who thought the forming of the department was a good idea, and was working with this subject, "tabled" the issue before it could be brought up for a vote by the committee. This allowed the members of the Florida Chapter of the American Association of Retired Persons to telephone, write letters to, and get in touch with, the legislators who were o n that committee so that the advocacy organization members' interest in passing legislation to create the Department of Elder Affairs would be known. When the issue was brought up to the legislative committee for vote at a later time, the bill was passed. Three of the six advocates interviewed indicated that family members of persons with mental illness serve as advocates in many cases. The family members are primarily associated with some type of organization, and so they act as part of a larger group. As one informant suggested, "Individuals cannot operate in a vacuum and be effective." There are exceptions to this generality but they are rare; only one person who fits into this category was mentioned by name. Organizations of this type and non-family oriented organizations that were mentioned include the Florida Consumer Action Council for Mental Health, Depressive/Manic Depressive Association, the Mental Health Association (MHA), Florida Alliance for the Mentally Ill (FAMI) the Florida


Catholic Conference, the Florida Association for Homes for the Aged, and the American Association of Retired Persons (AARP) Several governmental agencies were mentioned as participating in advocacy activities. The Department of Elder Affairs was the agency mentioned most often by all three groups of informants and was consulted for help by some organizations in setting agenda priorities. The 90 Florida Council on Aging was another organization mentioned by a service provider that fits into this category. Advocates offered the most information pertaining to how people become advocates. One advocate summed up how people become advocates by saying, "You have to join a group, align yourself with a group or create a group that you are representing that is going to take on an advocacy function." One advocate and one policy-maker listed numerous qualities that effective advocates possess. The advocate informant suggested that advocates need to cultivate the power structure and they need to compromise. It is preferable to have advocates who are general citizens who are not consumers, etcetera, because the people you are selling a program to have many other programs to worry about. To some extent, being continuous in the community is an important part of being an advocate, because the policy-makers will run into them again. They are not from a far away place you will never see again. Outsiders are listened to with courtesy. Advocates need to participate in the community, have knowledge of the community, and be known in the community. You need name recognition. An advocate has to be known as a


91 knowledgeable and sincere person, middle-of-theroad emotionally. Advocacy depends on knowing the facts. I think there are people who are advocating for things and they are not real informed. Whoever is the spokesperson has to be acceptable in the eyes of the people he or she is speaking to. The eccentrics on both ends are not highly acceptable. You have to stay focused on mental health and not get distracted by extraneous problems when advocating for mental health. An advocate needs to know the 'ins' and 'outs' of the system and know how to gain access to the people they need to get to in order to have an issue studied. You often have to be innovative in knowing the legislative process and creative enough to create an answer that the legislature or legislative committee can approve your proposal, and still have it be positive for the general community. You have to have the interest, you have to understand. Effective advocates understand the problems, the possible solutions, and the resistance to the possible solutions. You have to understand the problem of the legislator and that he or she has to answer to the public in general. People don't always want middle ground, but advocates have to seek middle ground. The policy-maker who outlined the qualities of an effective advocate are similar to those mentioned by the advocate and stated that an advocate is someone who is knowledgeable in the area. Someone who has worked in the field either with elderly or at some other level. An advocate has to be able to impart knowledge to others in a way that they can understand. An advocate must be very verbal as well as be able to write things in a very concise manner. They have to be people persons; they have to deal with a large number of persons, all different kinds of personality types. Advocates have to understand how to get people in power and a lot of that has to do with knowing who the players are at all levels, and who the advisors are to the persons in power. A lot of times you can get to the advisor before you can get to the actual person who votes on issues. An advocate has to understand the process, be trustworthy, and be willing to understand that laws are compromises. They have to look at the big picture. They don't see their one little niche,

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92 but they're looking at the grand scheme of things, and how they fit, and how mental health for the elderly fits in the grand scheme of the betterment of all citizens of the State of Florida. They have to do research before they go to talk with someone so they know the problems of the specific area the person they are talking to is from. If they are statewide advocates, they have to be able to tap into local people so the locals can contact their local legislators so it becomes a personal issue, and not just an issue that someone you see when you go to Tallahassee brings up. They have to be concise in what they are saying. Know what points it is they are going to make. Not only be able to say that, but have something in hand they can leave with the member that says, 'Here is the problem, here are the things that we feel should be done this year. If there is funding involved, here is how much it will cost.' If you have any idea of how it can be funded, this is how. And, if possible, have it on one sheet, front and back. You offer to assist them and then you move on. Advocates have to deal with both the substantive and appropriations committees and have to know what tactics to use with the different persons they will be talking with. This policy-maker also suggested that legislators themselves need to become educated and become advocates themselves. Two advocates and two service providers agreed that there were no specific credentials needed to become an advocate. One advocate suggested, "A person with an interest in advocacy might become an advocate, but not have certain credentials-more of an interest." Several informants indicated that lobbyists have to register as such when they are lobbying in Tallahassee. Finally, one advocate who spoke to the effectiveness of an advocate, suggested that Things are long-range and continual and you have to do it with a certain amount of even keel. The

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93 most effective time to carry forth a proposal is when you are not asking an individual for the governing body to do anything. Call on them in offices in their own home town and say, 'I JUSt wanted to bring you up to date on such and such. Did you know that?' The time to ask for a favor is when you don't need immediate action. Are there special advocates for special populations? What segment of the population is best represented? How do advocates identify themselves (as to which group, etc.)? Advocates, policy-makers, and service providers agree that there are special advocacy groups for different populations; of the eleven informants who responded to this question, all thought that the different groups had their own advocates. Children comprised the group that was identified across all three groups as the portion of the population that is currently best represented by advocates in the State of Florida. Policy-makers and service providers suggested several reasons for this trend. One policy-maker stated that ... yes, children are represented more than any other group. It's a more popular thing." Additionally, children are seen as non-voters who are too young to represent themselves and therefore need a strong advocacy system to bring their issues to the attention of policy-makers. Moreover, advocates for children's issues are viewed as having a good network in addition to some very influential individuals working for their causes, such as Jack Levine, director of the Florida Center for Children and Youth, and

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94 Colleen Bevis, who has gained national recognition for her efforts by winning the J. C. Penney Golden Rule Award. Jack Levine and Colleen Bevis have earned a reputation over the years as being hard-working, dedicated individuals who have contributed much time and energy to children's issues. Advocates for children's issues are viewed by policy-makers as looking at a broad range of issues and tending to focus on physical needs more than mental health needs. One informant stated that ... they're wanting public policy to address health needs, as well as family needs and school needs, education needs as well as substance abuse and mental health." It is therefore suggested that ... the advocacy group dealing with children's issues are more identified with issues as opposed to the broad range of problems. For example, you have the healthy baby/healthy mothers group interested in low weight babies. While children's issues seem to have the best representation at the present time, one advocate suggested that ... one group is not doing consistently better than others. In the past, advocacy groups for the retarded and developmentally disabled have done very well, if what we mean by doing well is tallying the percentage of increases as far as budgets are concerned. Family members of individuals with disabilities are viewed as being a fairly strong and active advocacy group. There was some disagreement concerning how well elderly persons are represented by advocacy groups. Two policymakers suggested that the needs of older people are not well

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represented in Tallahassee. One policy-maker stated, "I think every segment is better represented, and more effectively represented, than aging." Two advocates had a 95 more positive opinion on this issue. In addition to large, national organizations like AARP representing elderly people in this state, it was suggested that ... for the elderly, there is definitely a strong advocacy system but I think it is quite fragmented in every respect." How do advocates organize? Or do they organize? Generally, what type of organizations are there and how do they evolve? In general, advocates were thought to organize because of an interest in a common goal. One informant who views himself as an advocate stated, "I think it happens by very specialized interests corning together around their particular interests ... it happens through the various organizations' efforts. Respondents agreed that if there is organization of advocacy efforts, it primarily occurs in conjunction with various organizations such as the Mental Health Association, Florida Alliance for the Mentally Ill, and AARP. Advocates and policy-makers concurred that the various organizations do coordinate their efforts and support each other when fighting for common interests even though their means may differ. One policy-maker stated that ... even with

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96 business interests, sometimes they will gel when there is a common goal. They may be opposed on other issues but they'll come together and speak as one voice on a particular issu e This cooperation exists even though the d ifferent groups may be competing for the same resources. One informant stated: Even though there is competition among the social and human services for resources, they basically feel like we are all in the same boat together and we don' t feel like we're competing against each other as muc h as we do with other pressing issues. Despite the willingness of advocacy groups to work together for common interests, advocates, policy-makers, and service providers all suggest that there are no well organized advocacy groups that operate with any consistency. This situation is particularly true with respect to mental health issues, and specifically to mental health issues that pertain to elderl y persons. Comments such as "There are a lot of people doing advocacy but it is not some master plan o f aging advocacy," "Everyone is going in the right direction but with a good deal of fragmentation," and "They tend to serendipitously pick most of the same issues and they have a loose communication network but I would say they are not well organized," were common across all three groups. One policy-maker added that in spit e of the fact that there is little organization among advocacy groups, "There is a reasonably close-knit community of advocates across the various services, so if they are doing something

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97 that is really major within an advocacy group or agency, we usually know it." One policy-maker indicated that professional associations do not seem to be involved with advocacy on the state level. She stated, With professional organizations such as the psychiatric associations, the National Association of Social Workers, the Florida Psychological Association, you don't see any unity or joint efforts on the part of the mental health professional groups. One entity that was mentioned by both advocates and policy-makers as being a coalition of advocacy groups in Florida was the Clearing House on Human Services. This organization is viewed as ... coming out with one voice on issues," but people who work in advocacy pertaining to older persons believe that the Clearing House on Human Services offers little focus on issues specifically pertaining to elderly persons. As one advocate stated, The only coalition of groups in Florida is the Clearing House for Human Services. They talk about human service issues in general, particularly for children, so even though advocates for the elderly belong, they don't attend the meetings. Two advocates identified the Department of Elder Affairs as the only governmental entity that deals with policy issues pertaining to elderly persons. This agency is seen as one that is still evolving and that has the potential for being effective in advocating for issues affecting older persons, but so far this agency has .. not come together around mental health issues for elderly."

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98 One service provider stated that i n some districts, Health and Rehabilitative Services Administrators are involved actively i n aging issues and expend a lot of effort to make sure that issues pertaining to o lder persons are examined, and, more importantly, that funding is provided to help address those issues. Specifically, line items in the Geriatric Residential and Treatment System, case management, adult congregate living facilities and nursing home overlays were cited as being projects with which this district was involved. How many advocates are needed in order to be effective? Do the issues seem to have more credibility if more advocates push the issue? Advocates and policy-makers agreed that the number of people advocating for an issue is important. One policy-maker suggested that "It takes eight to ten for the most part because you need to have the appearance of a broader base. You have to divide up the work somehow, and I don't think one person can do it." Most of the other comments were general and brief, and all indicated that the larger the number of people that can be counted as supporting an issue, the more credibility it t ends to have. In order for a group to be effective, it is not enough to have a large number of members. Credibility was viewed as being very important also. For exampl e one advocate

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99 stated that "In some cases, I don't think the number is as important as the focus, the concentration, and the intent of the work. If a small group of advocates really gets a head of steam up on an issues, they can be very important." A policy-maker suggested that "You need influential people. Peopl e who have influence beyond the advocacy group either in the business community, the political community, whatever." Two advocates who are part of large organizations suggested that sometimes organizations tend to have more of an impact on legislators because they tend to have personal experience with the issues at hand. It was also stated that "You have to have legislators address issues in order to have statutory authority and funding, if funding is needed. One advocate expressed the opinion that, "Provider agencies typically have superior resources compared to advocacy organizations, but this imbalance is corrected somewhat by their more personal impact on policy-makers. While numbers were cited as being important, the effectiveness of a group may result from other factors. One advocate suggested that "The real work is done with an advocacy group in building your network, building your credibility, preferably outside of the thing for which you are advocating." One policy-maker suggested that when building a network, You might use people at the local level to influence things locally. Or, to say this is what

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100 needs to be done on a statewide basis, you need to let them know how this is, how it would help us here and now, how it would help your constituency so you need the local grassroots people. But you also need a couple of very strong, very articulate people at the state level to come up and lobby and advocate when the legislature is meeting and in town. Advocates need to be able to follow what is going on in the legislature, know the legislative process, and be able to advocate with the governor and governmental agencies. While working in the policy arena, one advocate advised, "Some advocates are so confrontive, they damage their own credibility". One policy-maker suggested that the frequency of being heard is a contributing factor for an organization's effectiveness. For example, going to Tallahassee once a year while the legislature is in session may be helpful, but it is more important to remain in contact with legislators throughout the year, keeping them informed on issues of concern to the group or individual acting in an advocacy capacity. How are issues decided upon? Who determines what is important? Two advocates who served as informants indicated that the organizations to which they belonged were the entities that determined which were the focal issues during a given year. one informant indicated that representatives from local affiliates of that organization meet on a regular

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101 basis to determine the issues they should emphasize. At least once a year, a delegation representing the organization meets in Tallahassee in an attempt to contact local legislators in order to bring issues to their attention. The informant for the other organization who responded to this question indicated that the process his/her organization uses is more formalized. The other advocate stated that the organization's state legislative committee ... is bound by our national legislative committee who meets once a year to establish policy for our members. Once they have met they publish their proceedings and they say to the states these are the priorities that we expect you to focus on. You may take as many as six of the following and concentrate on them, then you may take as many as you feel you can handle within your state but they must be something that has been approved nationally. A third advocate suggested that, Certain different associations around the state, mostly professional associations, most of them related to people who are working in the field identify these as their main priories and not untypically there is a lot of agreement in general. This point of view contradicts the opinion of the policymaker listed above that professional associations do not get very involved in advocacy in this state. Informants in all three groups stated that the government has a hand in deciding which issues will be acted upon during the legislative session. One advocate opined that for funding policy, ... the Department of Elder Affairs

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102 is coming up with the priority list, then they go to the governor who accepts them or rejects them and then they go to the legislature. This informant also indicated that there is an ongoing debate as to whether the Department of Elder Affairs should be involved in policy since it is the long-term care central planning unit for the state. Another advocate also thought the Department of Elder Affairs is involved in defining legislative issues pertaining to elderly persons especially with respect to" ... shaping legislative budget requests ... One service provider suggested that local Alcohol, Drug Abuse, and Mental Health Planning Offices help define issues each year, particularly with respect to funding, by involving the Elderly Committee as part of the planning process. This service provider described the process by stating, "The idea was that each committee identifies issues, prioritizes them, and develops budgets" with the assistance of the District Program Administrator for Health and Rehabilitative Services. One policy-maker described the process from a state government perspective: ... legislative staff research issues that are brought to their attention, or, that through their studies and observations, they feel are issues of importance and they do research and present that to the legislative committee chair and talk with the staff director. Members of the legislative staff are also responsible for drafting legislation for committee members based on their

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103 research. When a committee determines that an issue warrants action, it is moved quickly through the committee process. During this time, ... advocates and others are talking to the committee members and this influences their decisions. Another way issues are decided upon at the legislative level is when the Speaker of the House or the Senate President feel that an issue is important. A policy-maker stated that at this point, The committees, the staff directors and the chairs meet with the Speaker or the Senate President to discuss what they feel are important in what are called one-on-one meetings. If, after these meetings, the Speaker or Senate President has strong feelings about an issue, he/she talks with the members and lets them know what his/her feelings are. The Speaker of the House or Senate President develops an interim project list and approves the items considered to be official interim projects, thus deciding which issues will go an the agenda for discussion and possible action. Finally, this informant said that, There is the rules chair and the appropriations chair who also influence what is going to happen with issues. If things are going to cost a lot of money, it may be the greatest idea in the world but if we don't have the dollars, then it's not going to go anywhere. There are several ways that advocates influence how the government may treat an issue. One advocate suggested on the basis of his experience that the state organization's effectiveness depends on the extent to which local

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104 affiliates are involved. On the local level his organization attempts to" ... advocate to local officials, council members, and the Alcohol, Drug Abuse, and Mental Health Planning Council." At the state level organizations attempt to turn problems into issues, and" . change the attitudes of the movers and shakers, but they reflect the general public so it's really an education process for all of the people in Florida. This organization's members also attempt to get involved with networking, help their members know what key issues are, how various legislators feel about a certain issue, and identify key legislators who might be of assistance in promoting a particular issue. One policy-maker who served as an informant warned, You have to be careful. If you can show some shorter term effects it would be good; or show how people can use it because remember, you're dealing with a legislative body that turns over in the House every two years and you have an eight year limit. So, they have to see something happening with what they are doing. There aren't many people who are going to wait 20 years, even though that is probably when you are going to see some results. One advocate suggested that there is no well defined process for determining which issues the legislature will focus on in any given year. This informant suggested that, "Nobody is mandating the issues. They tend to evolve." Two reasons cited as being impediments to getting particular issues on the agendas of policy-makers include funding and the presence of issues that are generally seen as having priority status. One advocate suggested that

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"Funding has been stagnant for the last several years and efforts have tended to coalesce around that particular concern." Echoing this opinion, one policy-maker stated, "Florida has not really been in a position like it was in some parts of the 1980's where it could go out and fund things. The budget has been in a holding pattern for the last several years." How does an issue become credible? Worthy of action? Do advocates focus on one sympathetic legislator in the beginning and then go for quantity? 105 One advocate warned that" ... the quickest way to lose your credibility is not to be prepared." Another advocate suggested that "The worse thing you can do is present the problem and cry, and not have any solutions. Legislators cannot be experts in all things; give potential solutions." Other suggestions for helping issues gain the attention of policy-makers is to have written material prepared. One service provider indicated that her organization prepares legislative packets on an annual basis. In addition to legislators, these packets are distributed to local officials such as county commissioners, other service providers, and individuals who have shown a record of being effective advocates in previous years. When possible, the packets compiled by this organization are presented to

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106 legislators in person by the agency director and board members. One informant who acts as a service provider indicated that this organization made an effort to contact all legislators in her area and encourage them to visit selected day care centers, and accompany case managers as they performed their duties. They were successful in convincing over half the legislators in their area to participate in this activity, and the service provider believes that this action has had a very positive effect on how they view problems pertaining to older persons. One policy-maker suggested that research and publicity are important factors in making issues credible. This informant stated: (The) publicity may not be as broad as newspapers, but at least being published within the network in terms of priorities, with some background and explanation in professional publications or trade publications, and newsletters of various organizations. Another policy-maker indicated that mental health advocates were not ... making assertive, aggressive efforts ... to communicate with, and influence policy-makers in Tallahassee. While it is recognized that there was some advocacy on the part of mental health issues, those efforts were seen to be insufficient to have a significant impact. A third policy-maker indicated that computer generated letters from organizations are ignored my most legislators. It was further stated that, "Individual letters from people

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107 that have been "generated" are more effective. You can tell they are generated because generally they say the same things, but that doesn't mean you don't pay attention to them. In general, it was thought by policy-makers and advocates that older persons did not have a strong voice in Tallahassee. One policy-maker asserted, "I think the elderly have not done a good job in promoting their causes and for what reason I am not sure because certainly there are enough of them. Maybe it is a matter of focus." Specifically relating to mental health issues pertaining to older persons, one advocate stated, "If advocates for elders and mental health got together on an issue, that would carry a lot of weight even though they are advocates and not paid lobbyists, but they have never done that." Advocates, policy-makers, and service providers agree that the subject matter pertaining to an issue is important for attracting attention and action. For example, one advocate suggested "Mental illness is not a sexy issue according to legislators; they don't want to talk about it." One service provider suggested that there is a need to catch people's attention with subjects such as suicide rates among elderly persons. The media play a role in which issues are focused upon. According to one policy-maker: We hear a lot more about substance abuse, cocaine abuse, in public service announcements than we do

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108 about mental illness. Psychiatric hospitals do more public campaigns than other groups. They make normal adolescent behavior sound like serious pathology. One service provider suggested that an issue becomes worthy of action when the issue affects an individual on a personal level, and when there is money to help fund the solution to the problem. One advocate suggested that 11The best way to get support is to show people how what you are promoting is going to affect him or her. This has to be backed up by data.11 This informant added that it is helpful to show how the issue you are promoting is cost effective, since 11Legislators want to see the bottom line.11 All three groups agree that focusing on one, or a handful of, sympathetic legislators is an effective way of gaining attention for a particular issue. One service provider indicated that: We focus on those legislators who have expressed interest in social service issues, especially aging. We go to the legislative delegation meetings and present aging issues. We try different ways of generating interest. Yes, we do focus on one sympathetic legislator and then go for the others. It may take three years to get the other legislators interested and they may never become interested. Then you just keep informing them and you don't spend a lot of time with them. One policy-maker lamented, 11I wish more people would understand how easy it is to access their legislators and get things from their legislators, but most people think

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they can't, so they don't try. One person can make a difference.11 How do things get on the agenda of policy-makers? 109 One service provider and one policy-maker responded in opposite ways. The service provider thought that due to a lack of interest, advocates for aging issues have not had enough clout to get things on separate policy agendas. The policy-maker, by contrast, stated, I've never had a problem with that because aging is a dynamic issue and we have always kept legislators involved right along the way. So, it's almost like they've volunteered and I've been in a situation where they have sort of fought over who was going to get to sponsor something. I have often had to sit and figure out how to dole out pieces so that everybody got something special. Suggestions for getting things on the agendas of policy-makers include working with legislative staff in addition to legislators, identifying some elected official that has an interest in a particular issue and has clout, making personal visits to key legislators alone or in small groups, and pressure coming from a group legislators perceive to be powerful. One advocate warned that getting something on the agenda of a legislator does not guarantee success. For example, 11If it has a big price tag, given the fiscal situation, they might discuss the issue but would consider /

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110 their action to be a treatment of a symptom rather than a treatment of the cause." One advocate believes that "There is a need for groups to gather data and become experts on the disability with which they are involved." Using the media was another technique cited by an advocate for drawing attention to an issue. One policy-maker indicated that while "advocacy groups do promote issues, they are not at the forefront of bringing issues out." One policy-maker described in a fair amount of detail how issues get on the agendas of legislators from the perspective of governmental administration. The process was described in two levels. First, a request can come from the governor's office due to timing; either in response to a crisis situation, or because it is a long-standing issue that finally needs attention. According to this policy-maker, this is a formal process ... although it is not a grand process. It's usually an assignment. People are prepared for it because people in Tallahassee live and breathe the cycle of budget funding, operational budgets, the legislature being in town, and laws being implemented. The second level relates to whether a newly proposed policy can be done in procedure, rule, or law. The states, / If it has to be done in law, we start by taking the end date and working backwards; we think that way informally. That helps the governor flush out most of his big priorities, but I think that also sets the course for agencies and their agenda

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111 the governor can only carry so many proJects. That doesn't mean that agencies can't carry some projects that the governor supports, but he's not going to review each and every one of those items. That kind of planned activity probably generates 75% of whatever list is worked on during the course of the year. A lot of that is because you already know what those issues are when the assignment comes through and you've been thinking about it ahead of time. The other 25% comes more informally ... because the world has changed again, sometimes it is because of a crisis in the state . 75% is a fairly orderly, priority process ... it gets developed formally through the passing back and forth of papers and formal scheduled meetings ... Do advocates get involved with formulation of policy? Writing the legislation? If not, who does this and how do they do it? How much real input do advocates have? Of the nine informants who responded specifically to the questions of whether or not advocates get involved with the formulation of policy and the writing of legislation, only one policy-maker stated that advocates do not get involved with these processes. This informant stated that "Mentally i l l patients in general have very little representation in policy decisions." One policy-maker thought that advocates are getting more involved in this area, but in the past were more involved with implementation and the rules review process. One advocate thought that What often happens is that organizations are asked to give input, but the offer comes at a time when there is already a lot of investment in the issue being reviewed, or in a particular approach to an

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112 It doesn't come as early as we would like 1t to come. This view contrasts with that offered by a policy-maker, who stated: Committee chairs and legislative staff on a particular committee would have summit meetings where they brought together advocates and people on all sides of the issue in the early formulation stages ... It was much better to work ahead of time because even if the members disagreed, you knew where people were coming from. One of the service providers indicated that the Department of Elder Affairs has an advisory council made up of members from all over the state and that the director of the Department of Elder Affairs is especially good about alerting service providers to issues addressing long-term care needs for older persons. One advocate suggested that legislators welcome input from persons who have expertise in a specific area who might be able to provide some language that might be included in a bill. How involved do advocates get in implementation? Administration? Eight informants responded to this question; five were advocates and three were policy-makers. Three advocates and two policy-makers believed that advocates do not get involved in this area of public policy. While the policy-makers offered no expansion to their negative responses, the advocates offered more information in this regard.

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113 The first advocate thought that some advocates . get involved at the local level in terms of implementation, but I don't see that at the state level. In the aging network, there are elders who sit on the boards of directors of Area Agencies on Aging, the Department of Elder Affairs Council, and s o they get a chance to follow the major policy directions that are occurring, but I don't think they get involved in implementation in any real sense of the word. The second advocate stated that she ... would like to see advocates stay more involved. The average advocate who believes in something will push for the change and then too often step back where a group needs to be formed to implement the action, then it becomes political. Sometimes that is good. The third advocate believed that "Advocates should n o t get involved with administration. They can be on boards, and boards set policy. But, then administrators should be allowed to carry out the administration of the policy." The one p olicy-maker wh o thought that advocates get involved with implementation and administration had an entirely different perspective. This informant stated, Yes, I think they are very good in that area. That is the place I think advocates are more effective the Ombudsman Council is an example. This is one of the things that aids government too. We like t o know there are watchdogs out there because we can't be everywhere looking at everything. The cost would be prohibitive to do that.

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114 How does funding affect lobbying efforts? How are lobbyists and advocates funded? Is there a difference between an advocate and a lobbyist? Advocates, policy-makers, and service providers agree that funding does affect lobbying/advocacy efforts, especially during this time when funding is inadequate to support all of the services that are needed in the State of Florida. All three groups agree that in spite of other problems that require attention, fighting for dollars often takes precedence over other issues. As one policy-maker stated, It may be that we need money so badly that w e can't think about anything else. We don't have the money or strength, and the public sector is so overworked, overstressed, and underfunded. How can we be thinking about much of anything but survival. Two advocates agree that even given the limited resources the state has to work with, they are not confident the money will be used where it is needed most. One advocate suggested, "There is limited funding and no promise of enlightened people in Tallahassee doing what needs to be done to get the funding into the communities that need it." Another advocate stated: Funding for home and community-based services has remained stagnant at best, while funding for institutional care, which elders do not advocate for, has been increasing rather dramatically. The big money in the aging field has gone to expand the nursing home part of the budget. That is not something anybody advocates for, except nursing homes occasionally.

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These comments support the idea held by all three groups that it is the provider agencies that have been doing the most lobbying in the recent past and to some degree have been rewarded with funding for their programs. 115 One advocate and one policy-maker specifically mentioned that lobbyists tend to have greater resources than advocates for non-profit organizations. As the policy-maker stated, "There are a lot of very wealthy lobbyists. By that I mean business. They have influence. That doesn't mean people are hard-hearted, it's just business." One policy-maker believed that there is no difference between a lobbyist and an advocate, while one advocate and one service provider suggested that the lines between the two are often blurred. The rest of the respondents in all three groups thought that there was a difference between lobbyists and advocates with the major difference being that lobbyists are paid professionals while advocates are often unpaid "volunteers." Another difference between advocates and lobbyists was suggested by one policy-maker and one service provider. They suggest that lobbyists understand the political system better than advocates and therefore may be more effective. The service provider contended that "The central fact is the high-powered lobbyists, the businesses and all of that, they know how to do all of that and the get the attention of the legislators." The policy-maker states:

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116 A lobbyist better understands the quid pro quo of political life and advocates don't. Advocates only want what they want. They don't understand that there is a payback at some point and generally that is probably where advocates tend to fail. They fail to support the people who have been supporting their issues. One advocate pointed out that individuals and groups have to be careful how they identify themselves. For example, groups that are tax exempt because they are considered non-profit organizations are prohibited by law from lobbying. Likewise, one service provider explained that state employees are not allowed to lobby and stated that "If I wanted to lobby I would have to take an unpaid leave from my position." One policy-maker indicated that there are exceptions to the general ideas held about the differences between lobbyists and advocates. For example, this informant related: Jack Levine, the Director of the Florida Center for Children and Youth, gets paid and he knows how to get things done in a professional manner. But, because he doesn't have the same strength behind him to make a quid pro quo, then he has to adopt different strategies from a regularly paid lobbyist. It is more grandstanding. You have to go in and occasionally beat up on the legislators. A good lobbyist would never do that. Tell me about mental health advocates for the elderly. Informants from all three areas agree that there is no organized advocacy group that deals with issues pertaining

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to mental health and elderly persons. One advocate suggested: 117 From time to time, people who are involved with aging and people involved with mental health will identify mental health services for elders as a major issue. But they also suggest that funding for this is very limited. Additionally, one policy-maker suggested that some non-profit, state organizations get involved in mental health and aging issues. For instance: Florida Association for Homes for the Aged, which is a well respected group, deal with, at times, advocacy on behalf of mental health problems in the elderly. You have the Department of Elder Affairs, the mental health people in the Department of Health and Rehabilitative Services, some university system people, but that is not their sole purpose. They come together on a particular problem but there is no one group. Several reasons were offered to help explain this situation. Generally, it was believed that mental health-related needs of older persons are very different from the needs of other age groups. One policy-maker suggested: For the elderly, they need support systems, counseling; we recognize substance abuse and depression as such a problem with the elderly. We may know what the needs of the elderly are but I don't think society in general, and our policymakers, are taking care of it. E ven when it is recognized that elderly persons are in need of mental health services, this issue is not given high priority. One advocate alleged, Most people do not feel mental health needs of the elderly are at the top of the list and most people include public officials, the agencies, and the elders themselves. Elders identify other problems such as crime and transportation much more

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118 quickly. There is a general need for health care and long term care services. They may see mental health support as part of that but they won't articulate it in quite those terms. A lot of this comes out of c onditions of social isolation, general loneliness, separation from family. These are the kinds of things that increase stress for elders and could be addressed by the availability of services to deal with these problems, but they are not apt to seek those types of services. One policy-maker suggested that the subject matter itself tends to put people off. This informant stated, ... another thing we work against a lot is people don't want to talk about age. The general public does not want to deal with these issues. When you're old it is real hard to engage in dialogue and I think some of that is not just because children's issues need our attention, but by virtue of the fact that people just don't want to face it. They don't want to deal with aging or mental health, and they certainly don't want to deal with aging and mental health. It is just to close to death or too close to problems that make people feel out of control. Another policy-maker identified prejudice on the part of mental health and health care workers as being responsible for a lack of interest and action in this area. Attempts have been made to help overcome the lack of mental health services for older persons. One policy-maker who has worked in this area for several years in Florida stated: We got them to create a policy in the Governor's Office of Planning and Budgeting that says at least 20% of each district mental health dollars needed to go t o services for the elderly. And we got the Go vernor's Office to make the Mental Health Program Office accountable to the Aging Office to prove that was happening through periodic reports and meetings and such. In all honesty, people just played games with the numbers and some additional mental health dollars and

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119 services went to older people but not like anything we had hoped. It was a different form of advocacy, but it also tells you that when whoever the professionals are in the service delivery whatever their priorities are, will ult1mately get carried out. Not public policy, even legislated or whatever. One service provider agreed with the information offered by the policy-maker quoted above. Based on personal experience, this informant verified that the practice of 11playing games with the numbers11 is still occurring with respect to the proportion of money actually being spend for mental health services for elderly persons compared to what is reported to be spent by various provider agencies. Other Issues -Not on List of Questions This section presents information gathered from the informants that did not fit into any of the previously presented sections but was thought to be of interest or important information for this study. Two advocates reported that education was a very important part of their organizations' missions. Both individuals believed that education is an important part of what advocates do in terms of helping mental health issues come to the public's attention. As one of the informants stated, Part of or mission statement is that we do support education, advocacy, and we promote research. Most people involved with family members want to learn about the illness, medication, what is

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120 available in the public and private systems, and how they can help. The other part of the education is that we try to educate the general public. One advocate and one policy-maker suggested that health care reform is an area where advocates for mental health issues are focusing some of their attention. One advocate stated that nwe are very interested in health care reform to make sure there is no discrimination against mental illness.11 The policy-maker said, 11When you hear about health care reform issues, I'm glad to see there are battles being fought about mental health care.11 Tax reform for the State of Florida was mentioned by one advocate and one service provider as being an important and necessary item to address. One advocate, one policy-maker, and the two service providers identified Health and Human Service Boards as a concern. Since these boards are supposed to replace Health and Rehabilitative Services Alcohol, Drug Abuse and Mental Health Planning Councils, there were many questions concerning their effectiveness, organization, and how well they would function especially in the area of mental health issues. One service provider stated that Alcohol, Drug Abuse, and Mental Health Committees are in transition. With the reorganization of Health and Rehabilitative Services Health and Human Service Committees have taken the place of the Alcohol, Drug Abuse, and Mental Health Councils.

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121 The other service provider sees that 11a dilemma with elderl y issues is that the advisory councils are sunsetting11 The term 11SUnsetting'' refers to Health and Rehabilitative Services Alcohol, Drug Abuse and Mental Health Planning Councils being replaced by Health and Human Service Boards as the result o f legislative action. The advocate expanded on the information presented by the service providers by stating, 11The exact relationship between the Health and Human Service Boards still has to be worked out. Health and Human Service Boards are much broader than the Alcohol, Drug Abuse, and Mental Health Planning Councils11 The policy-maker was able to offer a broader perspective on Health and Human Service Boards because of extensive experience in working with the social services system in this state. The policy-maker believes this ... concept is very similar to the Mental Health Board we had in the 1970's and 1980's that then became the Alcohol, Drug Abuse, and Mental Health Planning Councils. The Alcohol, Drug Abuse, and Mental Health Planning Councils are repealed next year (1994). Health and Human Service Boards represent not just mental health, but all social services within the department, within Health and Rehabilitative Services. Again, mental health issues could get lost. There are so many social issues in our communities that the Health and Human Service Boards have to deal with. This just dilutes mental health visibility. I hope there are subcommittees for the Health and Human Service Boards but when the legislation was passed the members were not in support of having standing committees as defined by law. They wanted Health and Human Service Boards to create those as they are needed. Health and Human Service Boards are covering everything from medical services, public assistance, to all the entitlement so Alcohol, Drug Abuse, and Mental Health 1s one

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122 small area they are responsible for, or that they need to be addressing. Two advocates identified insurance coverage as a problem in the area of mental health. One informant stated that for "some insurance policies, mental health coverage is not available at all. In others it is available in such limited and unrealistic ways that it is just sort of the "tip of the iceberg". The second advocate proposed a reason for this by suggesting that there are "extreme limitations on mental health services because mental health treatment is hard to predict, or know when a cure will take place. Mental health is seen to be fuzzy in terms of successful treatment." General issues pertaining to mental health and older persons were offered by one advocate and two policy-makers. The advocate believed that older people are "much more apt to get their 'therapy' from other people with whom they come in contact. It may be a social worker with an agency, a home health aide, or someone along those lines." This informant believes they are much less likely than people of other ages to seek professional mental health help from traditional psychologists and psychiatrists. In response to the general mental health needs of older persons, one policy-maker reported: We are trying to develop a range of nonresidential services for the chronically mentally ill. we don't want to put them in hospitals and institutions, and we want them to have as much

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123 independent living, live as normal a life in the community, as we can. This same policy-maker stated: (that he/she gets) real annoyed when professional staff are not more interested in treatment and the clients. Good salaries are important, but, I don't think it ought to be left up to the family members and consumers to do advocacy. I think the professionals have an obligation to be advocates. The second policy-maker is concerned that We have been finding that people with Alzheimer's disease, and who have episodes of violence, are falling through everybody's cracks, including the mental health institutions. We see Alzheimer's people going into mental health institutions. This same policy-maker pointed to some changes in this state that have been positive, and asserts: Deinsitutionalization efforts in our state have placed a lot of people in adult congregate living facilities. Because these people have a need for services, this allowed the mental health and aging network people to go into adult congregate living facilities and assist some of these persons. The operation of the government in general was also discussed by some of the informants. One advocate expressed concern over the amount of work that the Florida Legislature is charged with each year. This informant stated, "If you are talking about the legislature, they are only there for 60 days and may have over 4100 bills presented to be handled. so, whatever they are talking about has to be very concise." One policy-maker had a different view on how the legislative process works and explained,

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124 Things are going on all of the time. There is a lot of preparation work that takes place, not only during the 60 days. We are the only state of this size that still has such a short time to meet. All of the other large states meet twelve months a year. It would take a constitutional amendment to change this and I don't see that folks are willing to make that change. Honestly, I don't think that time is needed. More time is not necessarily needed to produce better legislation; better legislators is what you need for that. Starting in September, the legislature meets once a month up until session, which usually starts in February. If you chair a committee or have a major leadership role, you are in Tallahassee more often. You are talking to staff all of the time. This means that there is a great dependency on staff for better and worse and many times it is for worse because that means staff is in charge. We are fortunate in Tallahassee to have year around, good professional staff. Other states don't have that, they only have session people who come in. That means we can put staff to work on an oversight nature. We'll look at a problem in the interim and see if there is a problem there and if so what are the solutions -to get everybody together. In those pre-session committee meetings, the committees are passing out bills so that when the legislature meets, there is legislation ready to be passed out to the floor of the house and senate. One service provider also indicated that legislative staff members were important individuals to deal with when advocating for issues in Tallahassee. This informant cautioned: There is a balance though because if you get some of the aides in Tallahassee real angry, they will sometimes not support your issue. I think we should have term limits for the aides, because they write the legislation for the most part. I'm talking about the senate and house staffers. one policy-maker indicated that ethnicity played a part in how effectively people made use of the public policy arena. This was indicated by the statement that, "Ethnic

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elderly in my area are not in the mainstream of advocacy groups. They are very isolated within their own social 125 circle, such as church and family. They tend to get their needs met from them.11 Finally, one advocate suggested that older women have needs that are different from the rest of the population. Referring to this study, one advocate stated that, I see what you are doing as being very important for women. Women have less opportunity to get what they need. For instance, so many men are veterans and have the advantage of veterans care that women do not have. Many women, not having worked, not having earned pensions or adequate social security on their own, what they get primarily comes from the result of being married. When they are widowed or divorced, we've had to make a tremendous fight to make sure they got some kind of equality in what they were getting. Women are treated differently with regard to mental health especially as they get older. These are facts from the National Institutes on Health and the National Institute on Mental Health.

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126 CHAPTER SIX. SUMMARY AND CONCLUSIONS An analysis of the research findings introduced in Chapter Five will be presented in this chapter, followed by a discussion of the significance of the findings and possible applications of the results. Advocates and Advocacy There was general agreement among the informants that state-level non-profit organizations were responsible for most of the advocacy for mental health issues occurring at the state level in Florida. In many cases, the organizations are composed of family members of persons who are afflicted with serious mental illness. At times there are individuals who work in an advocacy capacity, and these individuals are thought to be effective in some instances, but organizations such as the Mental Health Association and the Florida Alliance for the Mentally Ill were thought to be the most consistently active in advocacy efforts. For example, the Florida Alliance for the Mentally Ill worked with legislative staff to develop legislation pertaining to the "Patient Bill of Rights." A case in which funding for mental health issues was obtained by a committee made up of

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127 community members, the Elderly Committee, and the Area Agency on Aging was given by a service provider. This informant said that with the assistance of the Health and Rehabilitative Services District Alcohol, Drug Abuse and Mental Health Program Office, they were able to secure funding for the Geriatric Residential Treatment System, case management, and adult congregate living facilities and nursing home mental health 11overlays.11 A third example, described in detail by a policy-maker in Chapter Five, is the work the American Association of Retired Persons did in helping to establish the Department of Elder Affairs. The Department of Elder Affairs and the Florida Council on Aging were cited as governmental agencies involved with advocacy for elderly persons in general. It was pointed out that the Department of Elder Affairs was a relatively new entity and that its role and function were continuing to evolve, with the possibility of the agency ultimately getting very involved in policy issues for older persons. The informants agreed that people usually become engaged in advocacy because they have an interest in a particular area. Oftentimes this interest stems from a family member who needs help with a particular problem or illness. Much information was offered pertaining to the qualities effective advocates possess. Characteristics mentioned most often include being knowledgeable in the area

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128 for which one is advocating, being articulate in both oral and written communication, knowing the legislative process at the state level, building a network of people that can be counted on for help when action is required for an issue, and having a working, ongoing relationship with the people participating in policy formulation including local legislators and their aides. No particular professional credentials were thought to be needed in order to become an advocate, just a genuine interest in helping with a problem or issue. Lobbyists, however, must register with the state before they can participate legally in lobbying activities in Tallahassee. Different age groups and areas of interest were thought to be represented by different advocates. There does not seem to be a 11generic11 advocate who works in a lot of different areas. Children and children's issues were identified by all three groups of informants as being the best represented in Tallahassee at the present time and in the recent past. This focus on a particular group or issue was thought to be dynamic, so concentration was thought to change to other issues through time. Advocacy for issues pertaining to elderly persons in general, and advocacy pertaining to mental health issues among older persons specifically, was thought to be lacking in strength and unity. While some groups focus on issues affecting elders on a regular basis, these efforts were

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129 regarded as being insufficient to produce the results that are recognized as being needed seriously for older persons. Lack of coordination among groups was suggested by advocates, policy-makers, and service providers as a reason advocacy efforts were not as successful as they could be. McConnell (1976) proposes that organizations at the local, state, and national levels are important vehicles for lobbying for issues pertaining to older persons, but states that these organizations are seldom capable of achieving their goals without joining forces with other organizations. Individual organizations have limited resources and working on goals common to other groups increases the resource pool. Moreover, when different associations combine their efforts, they are more likely to increase their strength both in numbers and bargaining power (Berger 1976) When organizations join together to work on issues however, they tend to lose their autonomy, which is a condition some advocacy groups dealing with issues pertaining to elderly persons shun (McConnell 1976). Organization of Advocacy Generally, advocates were thought to organize because of interest in common problems and goals. This organization usually takes the form of non-profit groups that operate on local, state, and sometimes national levels. While advocacy

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130 is important at all three levels (McConnell 1976), there was general agreement among the informants that most efforts were focused at the state level since that is where legislation takes place. Membership in the advocacy groups mentioned in this study was always voluntary. Organizations were thought of as coming together when working on issues of collective interest, but this coordination of efforts was seen to be sporadic and inconsistent. The informants agreed that if various organizations throughout the state did coordinate their efforts and "come out with one voice" on issues, their efforts would be more effective. Fragmentation of advocacy efforts among groups was thought to be especially prevalent for organizations promoting issues for older people. Berger (1976) proposes that this fragmentation among these groups is due to socioeconomic issues, such as older people living alone in poverty, and the results of rejection by, or isolation from, family members and the work force. Because older people tend lose confidence in their ability to make adequate outcomes occur for themselves, they often withdraw from societal activities and believe that collective action in the form of advocacy groups may not be fruitful. Professional organizations, such as psychiatric associations and psychological associations, were seen as not being involved in advocacy at the state level in terms of promoting issues for the people with whom they come in

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131 contact on a professional or clinical basis. Like other groups, professional organizations were thought of as focusing on their particular interests and n o t coordinating efforts in order to address issues that may be common to their organizations. In addition to the Department of Elder Affairs, some local Health and Rehabilitative Services Districts, and Area Agencies on Aging were identified as promoting policy issues pertaining to older persons. Area Agencies on Aging, which are federally mandated agencies, produce legislative packets each year t o distribute to legislators, legislative staff, and local officials, that identify areas of need that deserve attention for the legislative cycle. To some degree, it was thought that these are agencies that sometimes coordinate efforts while presenting an issue that requires attention. The case cited above where funding was obtained for case management and adult congregate living facilities and nursing home mental health overlays serves as an example of this type of coordinated effort. Advocacy Effectiveness All informants agreed that, as a rule of thumb, the greater the number of people promoting an issue the more effective they are likely t o be in achieving results. This may be especially true for older persons since they comprise

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132 the membership of groups such as the National Coalition of Senior Citizens and the American Association of Retired Persons, which politicians tend t o view as an implicit electoral force they choose not to alienate (Hudson and Binstock 1976) While exceptions were mentioned, such as a small, well focused group coming together on an issue, or a spokesperson for a particular group of people such as Jack Levine, Director of the Florida Center for Children and Youth, it is believed that the more people who are involved with a particular issue, the greater the success rate. The credibility of an individual advocate or organization was singled out most often when referring to effectiveness. Credibility was thought to be the result of researching the issue and knowing the facts, presenting information in a clear, concise manner, and being known by the person or group with whom an advocate is working. Not knowing the facts was the most important consideration that informants thought caused an individual or organization t o lose credibility. Advocacy effectiveness also depends on building a network of individuals who may be of assistance when promoting an issue. Having a clearly defined focus was mentioned as being important, as was having financial resources.

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133 Acting on Issues As mentioned in Chapter Five1 page 901 issues identified as being worthy of action were decided in different ways. In some cases/ organizations have their issues designated by committee at the national level. For example/ a list of 11acceptable11 issues are sent to the state level American Association of Retired Persons organizations/ and that group is bound by those recommendations. In other organizations/ such as the Florida Association for the Mentally Ill1 statewide board meetings with representatives from each affiliate meet on a regular basis. When issues arise1 the members from the affiliate groups get feedback from their membership through executive committee members and then take a position on the issues. One informant suggested that issues just tend to evolve/ based on general agreement from various professional associations throughout the state1 with little or no coordination of effort. The three different groups of informants agreed that governmental agencies/ such as the Department of Elder Affairs1 identify issues worthy of action. Also mentioned were District Health and Rehabilitative Service Offices/ and Area Agencies on Aging throughout the state/ for helping identify issues which will receive attention during legislative sessions. The Florida Legislature itself was

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134 identified as an important source of selecting issues to be considered during each legislative cycle. Two impediments to getting issues to the forefront of policy-makers' agendas were identified. The first barrier that was named was lack of state fiscal resources. The second obstacle was described as the need for legislators to deal with issues that were thought to have priority status due to the perceived crisis state of various problems, such as an inadequate criminal justice system, or growth management. The media, and the publicity that can result from the media, were identified as being important vehicles for gaining attention for a particular issue. Danowski (1976:137) states: In the broadest sense, the main objective of the elderly advocate organization is to create social change. This social change primarily involves the role of the elderly in the society. The process of advocating social change is essentially a process of communication. Used correctly, the media was seen as an important means of communicating and for bringing issues to the attention of the public and lawmakers. Danowski (1976) refers to this as creating an awareness of the issues, of the need for change, and how that change may be brought about. Identifying issues o f importance by advocacy groups helps news organizations recognize which issues deserve coverage by the media by reducing potential universe identification uncertainty. Danowski (1976:141) states, "Potential

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135 universe identification uncertainty concerns the definition or identification of the overall information environment, comprised of a wide range of events.11 This can be accomplished using 11micro11 media, such as posters, letters or telephone calls, and 11mass11 media including television, radio, and newspapers (Danowski 1976). One service provider indicated that, 11for good or for bad11 televised publicity pertaining to elderly issues was avoided 11at all costs'' by most groups in that particular geographic area. The nature of the issue itself is also thought to be a factor in whether or not an issue is acted upon. Several informants suggested that mental health is not a 11sexy11 issue and that it is therefore difficult to generate interest in the subject. Moreover, it was thought that mental health was a topic that some people find hard or unpleasant to discuss. All informants agreed that advocacy efforts are more effective if focus is placed on one or a few nsympathetic legislators11 when attempting to gain support for an issue. Effective advocates and advocacy groups are able to identify these individuals. Effective advocates do not nwaste their time11 on legislators they know do not have an interest in their particular problem. Working with legislative staff members was also identified as being an important tool for effective advocacy. In many cases, they are the people who are most

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136 involved with writing the legislation that will be presented to the legislative body each year. Advocate Involvement with the Policy Process There was disagreement among the informants as to whether advocates get involved with writing legislation, policy formulation, policy implementation, and administration. Advocates tended to believe they were not involved in this process to any great extent. One informant suggested that it was inappropriate for advocates to get involved in these areas. Two policy-makers had an opposite view. These informants suggested that advocates are involved in the entire policy process and that their interest is welcomed. For example, one informant described how Chairs of the Health and Rehabilitative Services Legislative Committee would hold summit meetings where people on both sides of an issues were invited to participate. This was done in the early formulation stages of public policies because it was judged to be more advantageous to know the problems and areas of disagreement beforehand, than to have advocates testify before the committee after the policy had been drafted.

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137 Funding Funding was considered by all three groups as being an important component pertaining to action being taken on issues during the legislative cycle. Because the tax structure in Florida is based on sales tax, the amount of money available for programs is variable and unpredictable. For the last several years, tax revenues have been inadequate to meet the fiscal needs of the state at the level that had been possible in previous years. Given this situation, advocates see little chance for new programs to be approved and funded during this time of financial crisis. It was pointed out by one informant that funding for many areas is well below what it has been in previous years and that the number of people being served has, in almost all cases, increased. Basically, the State has to provide services for more people with less money. The result, as stated by several informants, is that various groups expend a lot of energy competing for dollars. Advocates versus Lobbyists With one exception, informants agreed that there are differences between advocates and lobbyists. Advocates are thought of as unpaid volunteers, with limited resources, who have an interest in a particular area and work towards

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138 meeting the needs o f the cause o r group of which they are a part. It was suggested that advocates are not sufficiently familiar with how the legislative process works and that advocates are not as likely to compromise on an issue as l obbyists. Although this problem was identified by informants, n o examples or solutions were provided during the interviews. Lobbyists, in contrast, are thought of as paid professionals who are usually backed by comparatively large amounts of money. They are thought to represent more business c oncerns other than social issues. The policymakers who participated in this study thought that lobbyists had a very good working knowledge of the legislative process and knew whom to go to for support on a particular issue. Informants characterized lobbyists as understanding that compromise is often necessary when trying to get legislation passed, and lobbyists have a better comprehensio n of the quid pro guo of politics. Advocacy for Mental Health and Elderly Persons There was universal agreement that there is not an organized advocacy system in place in the State of Florida for mental health issues pertaining to older persons. There was also agreement that such an entity would be an important

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factor in helping to meet the needs of elderly people in this state. 139 Several reasons were offered for why mental health needs of the elderly are not being taken care of adequately: 1. The whole issue of mental health advocacy for older persons is thought to be an underdeveloped area in that there is no clear organized statewide approach to addressing the mental health needs of this group. 2. Mental health centers do not emphasize the needs of elders to the extent they should. Older people typically do not make use of mental health centers for assistance with mental health problems. Those elderly persons who do use the mental health centers usually do not present at the centers with perceived acute crisis situations, such as those seen among younger clients. 3. One informant stated that the topic itself was unpleasant for most people to deal with. 4 Specific mental health services for older people in this state have not been identified. 5 Elderly people themselves are likely to identify other problems such as crime and transportation much more quickly than those pertaining to mental health. 6. Older people often are perceived as untreatable, as having problems that are not perceived to be as important as those of younger people "who have their whole lives ahead of them," or it is thought that their mental health problems

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140 are not significant because they are just a ''normal part of growing old." 7. Older people come from a generation in which seeking mental health care was stigmatized. Other Issues Education was cited as being an important part of advocacy. Informants believe that the more informed the general public is about issues, the more likely they will be to support them. Not surprisingly, many non-profit organizations identify education as an important function of their organization. The Florida Alliance for the Mentally Ill was identified as an organization that was involved actively with public education. In addition to educating members in the community who have children with serious, long-term mental illness about what to expect, pharmacology associated with various illnesses, and what services are available to them, they try to turn problems into issues for the general public to help resolve. Health care reform and tax reform for the State of Florida were identified as concerns by informants for this study. Some advocacy groups are following closely the progress of state and national health care reform to make sure mental health issues are not left out of consideration. An example of this effort is Former First Lady Rosalyn

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141 Carter's work spanning 30 years in the area of mental health. At a conference held recently and sponsored by the Florida Mental Health Institute, University of South Florida, Tampa, Florida, Ms. Carter stated, "Health-care reform not onl y must provide care based on physical needs, but include those who suffer from mental health problems" (Tampa Tribune 1994). Tax reform was also mentioned as being necessary in order for our state government to operate more effectively. The ramifications of changing from Alcohol, Drug Abuse, and Mental Health Planning Councils to Health and Human Service Boards were stated to be a concern for some of the informants. There is fear that these boards will have too broad a focus and that mental health issues will become obscured by other social issues. For example, the Health and Human Service Boards will be covering everything from medical services, public assistance, to all of the entitlement programs. When the legislation was passed, the legislative members were not supportive of having standing committees as defined by law. One informant was concerned, and angered, by the lack of involvement of mental health professionals in advocacy efforts for mental health in general and mental health services for older persons in particular. This informant stated: Sometimes the social services type issues you're dealing with involve people who are poor,

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142 incapacitated; people who have been harmed in manner, and sometimes there are issues people don't want t o face up to and realize they are there, so it's very difficult to sell things. don't think it should be left up to the family members and consumers to do this. I think professionals have an obligation to be advocates. some just out I Minorities and women were thought to be particularly at risk in terms of getting their mental health service needs met. It was believed that some minority groups tend to be fairly isolated from the social service system and tend to get their needs met through family members, churches, or other informal systems. Older w omen in many cases have had to rely on benefits that might come to them as a result of being married. When they are widowed or divorced, those benefits are sometimes lost or drastically reduced. C onclusions and Recommendations From a public policy standpoint, the mental health needs of elderly persons in the State of Florida are not being met adequately. One reason is lack of fiscal resources in general. M ost, if not all, agencies, programs, and services supported by the State of Florida have endured dramatic budget cuts in recent years. One policy-maker said, "We don't have the energy or strength (to work on issues relating to older persons) if the public sector is so overworked, overstressed and underfunded to be thinking of anything but survival." Another policy-maker stated:

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143 Mental health and the elderly has been a fairly effort, not because there weren't people but because most communities were strapped for resources and there wasn't an incentive for the key groups to go as far as they needed to go. A second reason identified by informants is lack of public interest and understanding. One informant addressed this issue by explaining, We may know what the needs of the elderly are, but I don't think society in general, and our policymakers are taking care of the problem. The elderly need support systems, counseling, and we in the aging field recognize substance abuse and depression as serious problems. Based on several years of experience working in the field of aging in this state, another informant expressed frustration by stating, "! ... was very disturbed about the lack of mental health services to older people. What bothered me in particular was the attitude of mental health providers was extraordinarily negative toward older people." A third reason identified by informants was a lack of organized efforts on the part of advocates. Advocates, policy-makers, and service providers mentioned this problem more frequently than any other. Responses such as, "We are in a real sad time right now, a real dearth of advocacy," "Aging advocates have not been very well organized," "Advocacy for older people at this time is very loose," and "! don't think there is an effective advocacy system in the state for elderly mental health issues" were common and numerous. Based on information obtained through this

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144 research, several recommendations are offered to help improve the advocacy efforts and mental health services for older people living in the State of Florida. Advocates 1. Individuals and groups who are involved with advocacy should communicate with one another and coordinate their efforts in order to become more effective in getting their needs met. In many cases, different groups were promoting the same or similar issues independently. If, in fact, larger numbers of people supporting an issue is more effective, as the literature suggests, "speaking with one voice" should greatly improve t heir effectiveness and success. For example, one person in each organization could be appointed to keep track of issues that they may have in common with others and make attempts to combine resources and consolidate efforts in order to present issues and solutions to legislators from a larger constituency. In some cases, this may result in the need to compromise on some issues. As the literature advises, organizations need to determine what they are trying to get accomplished, and what they are willing to "settle for" before meeting with policy-makers. 2 Groups need to maintain an ongoing relationship with legislators in their respective areas. Providing

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145 accurate information based on research, offering assistance or expertise on a particular issue, and developing a working knowledge of how the legislative process operates may prove to be invaluable in producing changes. When possible, advocates can suggest ways their proposals are cost effective. 3. Advocates can make better use of the various media to help get issues to the attention of the public and policy-makers. Advocates can develop a relationship with media people and provide them with accurate information that can be used to promote a cause. This will involve learning how to make issues "newsworthy" so that the media are more likely to use the information. As on advocate suggested, his/her organization attempts to turn problems into issues that will catch the attention of the general public. 4. Members of advocacy organizations can become involved in local committees dealing with aging issues, Health and Rehabilitative Services Committees at the district level, or Area Agencies on Aging, in addition to participating in the activities of their own groups. This provides an opportunity to collect information and serve as a vehicle to represent the advocacy organization to which members belong. 5. Members can become involved in "watchdogging" activities if they are not already doing so. The literature suggests that this is an essential function for advocacy

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146 groups to incorporate into their ongoing activities. Information obtained from this study indicates policy-makers appreciate this endeavor since they "cannot be every place at once, or know all there is to know about a situation without help." Policy-Makers 1. Legislators themselves must get more involved with gathering information on a first-hand basis. Informants for this study indicated that they perceive legislators to be too reliant on their staff. Service providers have developed a strategy for helping legislators to make visits to service provider agencies in some areas, and claim that legislators learn more from these visits than they do from getting the information in the form of reports or testimonies presented during committee meetings. 2. Policy-makers can make more of an effort to learn about the needs of their constituencies by encouraging interactions between themselves or staff members, and advocacy groups. Getting out into the community as described above will also help in this regard. 3. The literature on aging and public policy often refers to the aging of the baby boom cohort. At the present time, Florida has one of the highest proportions of older residents of all 50 states and predictions indicate that

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147 this number of older persons will continue to increase into the next century. Planning policy with foresight and longterm effects in mind is important for policy-makers at all levels, but it is especially vital for policy-makers for the State of Florida. 4. Policy-makers can encourage meaningful involvement of advocacy in the policy formulation process from the early stages of conceptualization through implementation and monitoring. In addition to saving time, energy, and resources of legislators and staff members, information provided by advocates at the beginning of the formulation process could help to create policies that more adequately meet the needs of the people the they are intended to serve. Service Providers 1 Bureaus such as the Area Agencies on Aging and service providers can develop, or continue, working relationships with Health and Rehabilitative Services Administrators at the district level. Based on information obtained from interviews conducted for this study, working with these offices may provide the opportunity to help determine how the funds are distributed even after policies are enacted into law and funding is provided. 2. service providers can investigate making use of the media to bring issues to the attention of the public, and

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148 provide public education pertaining to general aging issues. Informants suggested that the media is usually avoided by many service provider agencies, but rewards may accrue by learning to reverse this situation. Implications for Further Research While this study concentrated on obtaining information about the role of advocacy in the formulation of policy at the state level, and policy-makers themselves were included in the group of key informants, little information was obtained about how the legislative system in the State of Florida operates. Florida has been identified as having the highest proportion of elderly persons of all fifty states and the District of Columbia. Given that Florida has such a large group of older persons, why has public policy relating to this age group lagged behind that which is found for other groups, such as children? An anthropologist studying the ''culture" of the Florida Legislature, its relationship to the Executive Branch of the State government, and determining how the overall system operates to produce public policy, may gain valuable information which would provide insight as to how to influence public policy formulation more effectively. Florida, along with California and Texas, accounted for over 52 percent of the nation's population growth due to

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149 migration from 1980 to 1987 (Morris 1993). Determining the effects of this trend in Florida's population growth on public policy is another area of investigation that could add to a better understanding of how the system operates. The elderly portion of the population is a heterogeneous group. Florida has relatively large numbers of ethic minorities, such as persons who are hispanic, concentrated in various parts of the state. The literature and information obtained from key informants suggests that older members of ethnic groups tend to remain isolated from the mainstream of political activity and tend to get their needs met from family members and social institutions such as churches. Efforts to determine the needs of this portion of the population, to identify the factors that contribute to this groups' tendency to remain uninvolved in mainstream political activity, and to determine what steps can be taken to alter this circumstance is another area of research that could be explored in an attempt to better meet the needs of a larger percentage of older persons in the State of Florida. Conclusion In their first survey of programs, Torrey and Wolfe (1986) established that active advocacy groups were often found in states having noteworthy mental health service

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150 systems. Subsequent studies showed that this variable remained relevant in determining the quality of state mental health systems. Based on informatio n obtained from this study, advocacy for mental health issues pertaining to older persons is fragmented at best. The research findings presented in the literature on aging and advocacy indicate that, on a national level, older persons can influence policy-making decisions, and cite the example of the National Council of Senior Citizens' instrumental role in helping to establish Medicare. Information obtained from an informant for this study demonstrated how the State Chapter of the American Association of Retired Persons was influential in establishing the Department of Elder Affairs. Foner (1976) has proposed age stratification theory as a means of describing how, as different age cohorts move from one stratum to another, they have varying opportunities to hold positions of power and influence. This influence tends to increase with age with respect to members of a cohort occupying political positions, and research findings described in the literature suggest that encumbency also increases with age. Because members of a g iven cohort tend to be in close physical proximity to one another, they have ease of communication with members of the same group. For older persons, some members of their cohort are likely to hold political office and be in a position to affect change. Information obtained from this study supports Foner's

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151 {1976) theory in several ways. For example, one advocate suggested numerous instances when this access to policymakers is helpful including, visiting them in their offices on a regular basis to bring them up on various issues, and living continuously in the same community so that advocates become known by policy-makers. Access to policy-makers may also come about because people in the same age cohort hold positions of similar status and are more likely to work more closely with potential politicians than members of other younger cohorts. Having an established working relationship with a policy-maker before he or she holds office greatly increases the chances of influencing their decision-making after they attain positions of power. The increase in encumbency described in the literature may also be related to age cohort effects. People who are middle-aged and older tend to exercise their voting privileges more often than younger cohorts, a trend not unnoticed by persons seeking public office. Age solidarity, as defined by Foner {1976), tends to be predictable because the people in a given age cohort have common opportunities to fill valued roles, share common life tasks, share a similar historical perspective, and are similar in terms of biological development. The baby boom cohort shares the same stage of biological development. Members of this group lived through an historical period in which many types of social reform took place such as the

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152 Viet Nam War, the civil rights movement, and numerous social welfare programs that emerged during the Kennedy and Johnson administrations. Predictably, these factors will have an influence on public policies that are developed during the next several years. Another factor pertaining to the baby boom cohort and it relationship to its effect on society is its size in relation to other age cohorts. Foner (1976:26-27) states: ... another distinctive but rarely noted, feature of age stratification which can affect relations among age strata is the configuration of a given structure of age stratification. Here I refer to two particular aspects of the age structure: (1) its population in each; and (2) the particular ranking within the hierarchy -that is, their placement in the advantaged or disadvantaged positions ... today, the wealthy and powerful t the top of the age hierarchy form a substantial proportion of the total population. Paradoxically these elite are in the middle chronologically; they are neither the old nor the young, but the middle-aged. As the baby boom cohort ages, this large group of potential voters can work together to help bring about changes in public policy by helping to keep age cohorts in public office and by identifying issues this group determines is important. While the efforts of this age cohort may not have an immediate effect on the quality of life for older persons, they can have a dramatic affect on public policy relating to older persons in the future. Foner (1976:26) has pointed out that the structure and number of age strata has changed over time, and states:

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153 Much depends on the special structure of age stratification in any given society ... (and at the present time) the greatest rewards accrue to those strata which are chronologically in the middle." Foner (1976:28) further proposes that, "When such changes occur, the boundaries between youth and adulthood or between middle and old age are not always clear." Organizations advocating for elder issues relating to mental health must recognize this phenomenon and consider it a benefit and use it to their advantage. Using this advantage, along with organizing and showing force with the large number of older persons living in Florida, and c ombining their efforts with other advocacy groups, can go a long way toward establishing a formidable advocacy force for shaping public policy to better meet the mental health needs of elderly citizens of this state.

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154 LIST OF REFERENCES Aiken, Linda H. 1990 Chronic Mental Illness. In Mental Health Policy for Older Americans: Protecting Minds at Risk. Barry S. Fogel, Antonio Furino, and Gary L. Gottlieb, eds. Pp. 239-256. Washington, D. C. :American Psychiatric Press, Inc. Anthony, James C. and A. Aboraya 1991 The Epidemiology of Selected Mental Disorders in Later Life. In Handbook of Mental Health and Aging. James E. Birren, R. Bruce Sloan, and Gene D. Cohen, eds. Pp. 27-73. San Diego, California: Academic Press, Inc. Arendell, Terry and C. Estes 1991 Older Women in the Post-Reagan Era. In International Journal of Health Sciences 21(1) 59-73. Barrett, Virgina W. 1993 Programatic and Caregiver Barriers to Respite Care. In Respite Care: Programs, Problems and Solutions. Lynn M Tepper and John A. Toner, eds. Pp. 81-89. Philadelphia, Pennsylvania: The Charles Press. Bassuk, E, and Gerson, R. 1978 Deinstitutionalization and Mental Health Services. In Scientific American 238(2) 46-53. Belle, Deborah 1984 Inequality and Mental Health: Low Income and Minority Women. In Women and Mental Health Policy. Lenore E. Walker, ed. Pp. 135-150. Beverly Hills, California: Sage Publications. Bengtson, Vern L. and N. E. Cutler 1976 Generations and Intergenerational Relations: Perspectives on Age Groups and Social Change. In Handbook o f Aging and the Social Sciences. Robert H. Binstock and Ethel Shanas, eds. Pp.130-159. New York, New York: Von Nostrand Reinhold Company.

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155 Bengtson, Vern L. and L. A Morgan 1983 Ethnicity and Aging: C omparison of Three Ethnic Groups. In Growing Old in Different Societies: Cross Cultural Perspectives. Jay Sokolovsky, ed. Pp. 157-167. Belmont, California: Wadsworth Publishing Company. Berger, Mark 1976 An Orienting Perspective on Advocacy. In Advocacy and Age: Issues, Experiences, Strategies. Paul A. Kerschner, ed. Pp. 1-16. Los Angeles, California: The University of Southern California Press. Bernard, H. Russell 1 994 Research Methods in Anthropology: Qualitative and Quantitative Approaches. Thousand Oaks, California: Sage Publications. Bernard, Jessie 1 984 Women's Mental Health in Times of Transition. In Women and Mental Health Policy. Lenore E Walker, ed. Pp. 181-196. Beverly Hills, California: Sage Publications. Blazer, Dan G. 1989 Alcohol and Drug Problems in the Elderly. In Geriatric Psychiatry. Ewald W. Busse and Dan G. Blazer, eds. Pp. 489-511. Washington, D. C : American Psychiatric Press, Inc. Blazer, Dan G., E. W Busse, W E Craighead, and D Evans 1989 Use of the Laboratory in the Diagnostic Workup of the Older Adult. In Geriatric Psychiatry. Ewald W. Busse and Dan G. Blazer, eds. Pp. 285-310. Washington, D C.: American Psychiatric Press, Inc. Blazer, Dan and C. D. Williams 1980 Epidemiology of Dysphoria and Depression in an Elderly Population. American Journal of Psychiatry 137 (4) :439-444. Bloom, Bernard L 1985 Community Mental Health: A General Introduction. Monterey, California: Brooks/Cole Publishing Company. 1977 Community Mental Health: A General Introduction. Monterey, California: Brooks/Cole Publishing Company.

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156 Boaz, Timothy 1991 Overview of Mental Disorders. In Mental Health Training Manual for ACLF Staff. Timothy L. Boaz and Michael W. Sharinus, eds. Pp. 11-31. Tampa, Florida: Florida Mental Health Institute. Brown, Phil 1985 The Mental Patients' Rights Movement, and Mental Health Institutional Change. In Mental Health Care and Social Policy. P. Brown, ed. Pp. 187-212. Boston, Massachusetts: Routledge & Kegan Paul. Burns, Barbara J. and Carl A. Taube 1990 Mental Health Services in General Medical Care and in Nursing Homes. In Mental Health Policy for Older Americans: Protecting Minds at Risk. Barry S. Fogel, Antonio Furino, and Gary L. Gottlieb, eds. Pp.63-84. Washington, D.C.: American Psychiatric Press, Inc. Butler, Robert N. 1975 Why Survive? Being Old in America. New York, New York: Harper and Row. Butler, Robert N. and M. I. Lewis 1977 Aging and Mental Health: Positive Psychosocial Approaches. Saint Louis, Missouri: C. W Mosby Company. Chamberlin, Judi 1985 Inside the Mental Patients' Association. In Mental Health Care and Social Policy. P Brown, ed. Pp. 328-342. Boston, Massachusetts:Routledge & Kegan Paul. Committee on Nursing H ome Regulation, Institute of Medicine 1986 Improving the Quality of Care in Nursing Homes. Washington, D. C : National Academy Press. Danowski, James A. 1976 An Infographic Model of Media Access for Elderly Advocate Organizations. In Advocacy and Age: Issues, Experiences, Strategies. Paul A. Kerschner, ed. Pp. 137-149. Los Angeles, California: The University of Southern California Press. de la Parte, Louis, E D Endsley, G. H. Sheldon, J. G Simmonds, and P. D Wood 1988 Florida Mental Health Institute Task Force Report: Recommendations to Maximize the Florida Mental Health Institute as a State Resource. Tampa, Florida: Florida Mental Health Institute.

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157 Dixon, Marguerite Anderson 1991 Alzheimer' s Disease: The Victim and the Family. In Management and Care of the Elderly: Psychosocial Perspectives. MaryS. Harper, ed. Pp. 247-255. Newbury Park, California: Sage Publications. Donovan, Virg inia K. and R Littenberg 1985 Psychology of Women : Feminist Therapy. In Mental Health Care and Social Policy. P. Brown, ed. Pp. 343-3 74. Boston, Massachusetts: Routledge & Kegan Paul. Dowd, James J. and Bengtson, V. L. 1978 Ag ing in Minority Populations: An Examination of the Double Jeopardy Hypothesis. Journal of Gerontology 33 (3) :427-436. Dupree, Larry W., M. J. O'Sullivan, and R. L. Patterson 1982 Problems Relating to Aging: Rationale for a Behavioral Approach. In Overcoming Deficits of Aging: A Behavioral Approach. Roger L Patterson, ed. Pp. 7-21. New York, New York: Plenum Press. Evans, Lois K 1991 Nursing Care and Management of Behavioral Problems in the Elderly. In Management and Care of the Elderly: Psychosocial Perspectives. Mary S Harper, ed. Pp. 191-206. Newbury Park, California: Sage Publications. Finan, Timothy L and J. van Willigen 1991 The Pursuit of Social Knowledge: Methodology and the Practice of Anthropology. In Soundings: Rapid and Reliable Research Methods for Practicing Anthropologists. John van Willigen and Timothy L Finan, eds. Pp. 1-10. Washington, D.C.: National Association for the Practice of Anthropology. Flacks, Richard 1967 The Liberated Generation: An Exploration of the Roots of Student Protest. Journal of Social Issues 23 (3): 52 -75. Flemming, ArthurS. J C. Buchanan, J F Santos, and L. D Rickards 1984 Mental Health Services for the Elderly: Report of a Survey of Community Mental Health Centers, Volume I. Washington, D C : Retirement Research Foundation.

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158 Fogel, Barry S., G. L. Gottlieb, and A. Furino 1990 Minds at Risk. In Mental Health Policy for Older Americans: Protecting Minds at Risk. Barry S Fogel, Antonio Furino, and Gary L. Gottlieb, eds. Pp. 1-21. Washington, D .C.: American Psychiatric Press, Inc. Foner, Anne 1976 Age in Society: Society. Pp. 13-34. Publications. Friesen, Barbara J Structure and Change. In Age in Beverly Hills, California: Sage 1989 Parents as Advocates for Children and Adolescents with Serious Emotional Handicaps: Issues and Directions. In Advocacy on Behalf of Children with Serious Emotional Problems, Robert Friedman, Al Duchnowski, and Elissa Henderson, eds. Pp. 28-44. Springfield, Illinois: Charles C Thomas. Furino, Antonio and B. S. Fogel 1990 The Economic Perspective. In Mental Health Policy for Older Americans: Protecting Minds at Risk. Barry S. Fogel, Antonio Furino, and Gary L. Gottlieb, eds. Pp. 23-36. Washington, D.C. : American Psychiatric Press, Inc. Gallagher, Dolores, L. W. Thompson, G. Baffa, C. Piatt, L. Ringering, and V Stone 1981 Depression in the Elderly: A Behavioral Treatment Manual. Los Angeles, California: The University of Southern California Press. George, Linda K 1989 Social and Economic Factors. In Geriatric Psychiatry. Ewald W Busse and Dan G. Blazer, eds. Pp. 203-234. Washington, D. C. :American Psychiatric Press, Inc. Gottlieb, Gary L 1991 Economic Issues and Geriatric Mental Health Care. In Handbook of Mental Health and Aging. James E. Birren, R Bruce Sloan, and Gene D Cohen, eds. Pp. 873-890. San Diego, California: Academic Press, Inc. Gutman, Gloria M. 1992 Shelter and Care of Persons with Dementia. Vancouver, British Columbia: The Gerontology Research Centre, Simon Fraser University at Harbour Centre.

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159 Hendricks, Maureen C 1984 Women Spirituality, and Mental Health. In Women and Mental Health Policy. Lenore E. Walker, ed. Pp. 95-115. BeverlyHills, California: Sage Publications. Hess, Clinton W and P A. Kerschner 1978 The Silver Lobby: A Guide to Advocacy for Older Persons. California: University of Southern California Press. Hudson, Robert B. and R H Binstock 1976 Political Systems and Aging. In Handbook of Aging and the Social Sciences. Robert H. Binstock and Ethel Shanas, eds. Pp. 369-400. New York, New York: Von Nostrand Reinhold Company. Kamholz, Barbara and G. L Gottlieb 1990 The Nature and Efficacy of Interventions for Dementia and Depression. In Mental Health Policy for Older Americans: Protecting Minds at Risk. Barry S. Fogel, Antonio Furino, and Gary L Gottlieb, eds. Pp. 37-61. Washington, D .C.: American Psychiatric Press, Inc. Kane, Robert L. and R A Kane 1990 Health Care Policy Issues. Sciences, Third K. George, eds. Academic Press, for Older People: Organizational and In Handbook of Aging and the Social Edition. Robert H. Binstock and Linda Pp. 415-437. San Diego, California: Inc. Kemp, Bryan J and Judith M. Mitchell 1991 Functional Assessment in Geriatric Mental Health. In Handbook of Mental Health and Aging. James E Birren, R. Bruce Sloan, and Gene D Cohen, eds. Pp. 671-697. San Diego, California: Academic Press, Inc. Kopolow, Louis E and H. Bloom 1977 Introduction. In Mental Health Advocacy: Emerging Force in Consumers' Rights. L Kopolow Bloom, eds. Pp. vii-viii. Washington, D C : Government Printing Office. Lammers, William W An and H u. s 1983 Public Policy and the Aging. Washington, D .C.; Congressional Quarterly Press.

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160 Lardie, James J 1989 Advocacy Strategies An Overview. In Advocacy on Behalf of Children with Serious Emotional Problems, Robert Friedman, Al Duchnowski, and Elissa Henderson, eds. Pp. 45-53. Springfield, Illinois: Charles C. Thomas. Lave, Judith R. 1990 The Cost-Offset Effect. In Mental Health Policy for Older Americans: Protecting Minds at Risk. Barry S. Fogel, Antonio Furino, and Gary L. Gottlieb, eds. Pp. 125-134. Washington, D.C. : American Psychiatric Press, Inc. Lebowitz, Barry D and G. Niederehe 1991 Concepts and Issues in Mental Health and Aging. In Handbook of Mental Health and Aging. James E Birren, R. Bruce Sloan, and Gene D. Cohen, eds. Pp. 3-26. San Diego, California: Academic Press, Inc. Majchrzak, Ann 1984 Methods for Policy Research. Beverly Hills, California: Sage Publications. Mannheim, K. 1964 Essays on the Sociology of Knowledge. London, England: Routeledge & Kegan Paul, Ltd. Martin, Del and P. Lyon 1984 Lesbian Women and Mental Health Policy. In Women and Mental Health Policy. Lenore E. Walker, ed. Pp. 151-179. Beverly Hills, California: Sage Publications. McConnell, Stephen 1976 Interorganizational Issues and Advocacy for the Elderly. In Advocacy and Age: Issues, Experiences, Strategies. Paul A. Kerschner, ed. Pp. 41-45. Los Angeles, California: The University of Southern California Press. Mensh, Ivan N 1969 The Aging P opulation and Mental Health. In Changing Perspective in Mental Illness, S. Plog and R Edgerton, eds. Pp. 441-456. New York, New York: Holt, Rinehart and Winston, Inc. Morris, Allen 1993 The Florida Handbook, 1994-1994: 24th Biennial Edition. Tallahassee, Florida: Peninsular Publishing Company.

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161 Myers, George C. 1990 Demography of Aging. In Handbook of Aging and the Social Sciences, Third Edition. Robert H. Binstock and Linda K George, eds. Pp. 19-44. San Diego, California: Academic Press, Inc. O'Rand, Angela M 1990 Stratification and the Life Course. In Handbook of Aging and the Social Sciences, Third Edition. Robert H. Binstock and Linda K George, eds. Pp. 130148. Diego, California: Academic Press, Inc. O'Sullivan, Michael J 1984 The Geriatric Residential and Treatment System: A Handbook. Tampa, Florida: Florida Mental Health Institute. O'Sullivan, Michael J. and D. Speer 1992 HRS District 6 Mental Health Nursing Home Overlay Program and Alternative Family Program Interim Progress Report. Tampa, Florida: Florida Mental Health Institute. Osgood, Nancy J. and B. A. Brant 1991 Suicide Among the Elderly in Institutional and Community Settings. In Management and Care of the Elderly: Psychosocial Perspectives. Mary S Harper, ed. Pp. 37-71. Newbury Park, California: Sage Publications. Pelto, Pertti J. and G H. Pelto 1978 Anthropological Research: The Structure of Inquiry, Second Edition. Cambridge, Massachusetts: Cambridge University Press. Portin, R and Rinne U K. 1986 Predictive Factors for Cognitive Deterioration and Dementia in Parkinson's Disease. Advances in Neurology 45:413-416. Rader, Joanne, and B. Hoeffer 1991 Caring for Persons with Alzheimer's Disease in Long-Term Care Facilities. In Management and Care of the Elderly: Psychosocial Perspectives. Mary S. Harper, ed. Pp. 237-246. Newbury Park, California: Sage Publications. Raskind, Murray A. and E. R. Peskind 1991 Alheimer's Disease and Other Dementing Disorders. In Handbook of Mental Health and Aging. James E. Birren, R. Bruce Sloan, and Gene D Cohen, eds. Pp. 477-513. San Diego, California: Academic Press, Inc.

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162 Ridenour, Nina 1963 The Mental Health Movement. In The Encyclopedia of Mental Health. Albert Deutsch and H. Fishman, eds. Pp. 1091-1102. New York, New York: Franklin Watts, Inc. Robinson, Patricia, B. L Levin, R. M. Friedman, and S L. Weitzel 1986 Mental Health Services for the Elderly: The Status of Plans, Policies, and Relationships Between the Mental Health and Aging Service Systems in Florida. Tampa, Florida: Florida Mental Health Institute. Russo, Nancy F. 1984 Women in the Mental Health Delivery System: Implications for Research and Public Policy. In Women and Mental Health Policy. Lenore E. Walker, ed. Pp. 21-41. Beverly Hills, California: Sage Publications. Sawin, C. T Castelli, W. P., and Hershman J. M. 1985 The Aging Thyroid: Thyroid Deficiencies in the Framingham Study. Archives of Internal Medicine 145:1386-1388. Schonfeld, Larry 1992 FMHI Boilerplate. Larry Schonfeld, Compiler. Tampa, Florida: Florida Mental Health Institute. Schulman, R 1967 A Survey of Vitamin Psychiatric Population. 113:241-251. B12 Deficiency in an Elderly British Journal of Psychiatry Schwartz, Charles E. and S. Stabinsky 1991 Psychosocial Aspects of Primary Health Care of the Elderly. In Management and Care of the Elderly: Psychosocial Perspectives. Mary S. Harper, ed. Pp. 129-156. Newbury Park, California: Sage Publications, Inc. Schweitzer, Marjorie M. 1983 The Elders: Cultural Dimensions of Aging of Two American Indian Communities. In Growing Old in Different Societies: Cross Cultural Perspectives. Jay Sokolovsky, ed. Pp. 168-178. Belmont, California: Wadsworth Publishing C ompany. Sekscenski, E. S 1990 Discharges from Nursing Homes: 1985 Nursing Home survey. National Center for Health Statistics. Vital Health Stat 13(103). Washington, D. C : U. S. Government Printint Office.

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163 Sorensen, Elaine 1994 Comparable Worth: Is it a Worthy Policy? Princeton, New Jersey: Princeton University Press. Sosin, Michael and S. Caulum 1983 Advocacy: A Conception for Social Work Practice. Social Work 28(1) :12-17. Spear, Mel 1976 Federal Policies: Impact on Constituent Action. In Advocacy and Age: Issues, Experiences, Strategies. Paul A. Kerschner, ed. Pp. 61-71. Los Angeles, California: The University of Southern California Press. Special Committee on Aging 1981 Omnibus Budget Reconciiation Act of 1981, Public Law 97-35 (Selected Provisions Affecting the Elderly): An Introduction Paper. Washington, D. C.: U. S. Government Printing Office. Stanford, Percil and B. C. DuBois 1991 Gender and Ethnicity Patterns. In Handbook of Mental Health and Aging. James E. Birren, R. Bruce Sloan, and Gene D. Cohen, eds. Pp. 99-117. San Diego, California: Academic Press, Inc. Tampa Tribune 1994 Carter Urges Better Benefits for Mentally Ill. Tampa, Florida: Tampa Tribune, May 2 1994. Torrey, E Fuller, K. Erdman, S. M. Wolfe, and L. M. Flynn 1990 Care of the Seriously Mentally Ill: A Rating of State Programs, Third Edition. Washington, D.C.: Public Citizen Research Group and National Alliance for the Mentally Ill. Torrey. E. Fuller and S. M Wolfe 1986 Care of the Seriously Mentally Ill: A Rating of State Programs. Washington, D.C.: Public Citizen Research Group. Tremblay, Marc-Adelard 1957 The Key Informant Technique : A Nonethnographic Application. American Anthropologist 59:688-699. U. S. Department of Commerce 1993 1990 Census of Population and Housing; Population and Housing Unit Counts: United States. washington, D. C : U. S. Government Printing Office.

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164 U. S. Department of Health, Education and Welfare 1979 Mental Health and the Elderly: Recommendations for Action. The Reports of: The President's Commission on Mental Health: Task Panel on the Elderly and The Secretary's Committee on the Mental Health and Illness of the Elderly. Washington, D.C.: U. S Government Printing Office. U S. Office of Personnel Management 1987 Comparable Worth for Federal Jobs: A Wrong Turn off the Road Toward Pay Equity and Women's Career Advancement. Washington, D. C.: U. S. Government Printing Office. Vesperi, Maria D. 1985 City of Green Benches: Growing Old in a New Downtown. Ithica, New York: Cornell University Press. West, Helen, L. W. Dupree, and L. Schonfeld 1988 The A-B-C's of Drinking Behavior: Training Elderly Alcohol Abusers in the Analysis of Drinking Behavior. Tampa, Florida: Florida Mental Health Institute. Wolfensberger, Wolf 1977 A Model for a Balanced Multicomponent Advocacy/Protective Services Schema. In Mental Health Advocacy: An Emerging Force in Consumers' Rights. L. Kopolow and H. Bloom, eds. Pp. 16-35. Washington, D.C.: U S Government Printing Office.

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LETTER TO POTENTIAL INFORMANTS ---------------------' 1993 Informant's Name Informants's Address Informant's Address Dear 167 I work at the Florida Mental Health Institute in the Dean's Office/Training Support as a Senior Training Specialist. I have met with key people at the Institute in order to obtain names of individuals who are considered to be knowledgeable in the area of mental health advocacy and policy formulation. You have been identified as a person who might provide valuable information in this area. I am currently collecting data for my dissertation which focuses on the advocacy system in the State of Florida and how advocates contribute to the formulation of public policy. I will attempt to contact you by telephone during the week of 1993 to discuss further the n possibility of you participating in an informal interview. If you would like to contact me before that time for further information please call me, collect, after 5 p .m. weekdays and after 9 a m weekends at I look forward to the possibility of talking with you in the next few weeks. Sincerely,

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169 INTERVIEW GUIDE OVERALL GOAL -I am trying to learn how the advocacy system works in the state of Florida especially as it pertains to mental health issues for the elderly portion of the population. Who are the advocates? How do they become advocates? How do the become recognized as advocates? Are there specific credential needed to become an advocate? Are there special advocates for special populations? What segment of the population is best represented? How do advocates identify themselves (as to which group, etc.)? How do advocates organize? Or do they organize? Generally, what type of organizations is there and how does it evolve? How many advocates are needed in order to be effective? Do the issues seem to have more credibility if more advocates push the issue? How are issues decided upon? important? Who determines what is How does the issue become credible? Worthy of action? Do advocates focus on one sympathetic legislator in the beginning and then go for quantity? How do things get on the agenda o f policy makers? Do advocates get involved with formulation of policy? Writing the legislation? If not, who does this and how do they do it? How much real input do advocates have? How involved do Administration? advocates get in implementation? How does funding affect lobbying efforts? How are lobbyists and advocates funded? Is there a difference between and advocate and a lobbyist? Tell me about mental health advocates for the elderly.


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