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8504044

Lecklitner, Gregory Lee

PROTECTING THE RIGHTS OF MENTAL PATIENTS: A VIEW OF THE FUTURE

The Ohio State University Ph.D. 1984.

University Microfilms International 300 N. Zeeb Road, Ann Arbor, Ml 48106

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University Microfilms International

PROTECTING THE RIGHTS OF MENTAL PATIENTS: A VIEW OF THE FUTURE

DISSERTATION

Presented in Partial Fulfillment of the Requirements for

the Degree doctor of Philosophy in the Graduate

School of The Ohio State University

By

Gregory Lee Lecklitner, B.A., M.S.

*****

The Ohio State University

1984

Reading Committee: Approved By

Andrew Schwebel, Ph.D.

Thomas Milburn, Ph.D. Adviser Bruce Walsh, Ph.D. Department of Psychology ACKNOWLEDGMENTS

This project required the cooperation of literally hundreds of people. Thanks must first be extended to the 345 study panelists who participated in the study. Without the con­ tribution of their knowledge and experience, this study could not have been done.

Dr. Andrew Schwebel served as my advisor on this study and graciously gave of his time and guidance. The final draft of this document reflects his careful review and criticism. Dr. Thomas Milburn and Dr. Bruce Walsh also served on the reading committee and gently asked the right questions.

This study also benefitted greatly from the direction of Dr. Paul Greenberg of the Human Interaction Research Insti­ tute in Los Angeles. His concerns for detail and complete­ ness contributed in a substantial way to the quality of this work. Dr. Tom Wickens and Dr. Marty Gahart, both of UCLA, were consulted on the statistical treatments used in this study. Their unique expertise made it possible to convert massive amounts of unstructured data into coher­ ent statements of results.

Finally, I must express my heartfelt appreciation to my wife, Meg Grant. She patiently gave of her nights and weekends, converting my scribbling into neatly typed pages. More than this, however, she provided the well-placed kick in the pants and the well-timed hug to keep me going.

ii VITA

April 29, 1951...... Born - Lafayette, Indiana

1973...... B.A. , Indiana University, Bloomington, Indiana

1977...... M.S., San Diego State University, San Diego, California

1977-197 8 ...... Graduate Fellow, Ohio State University, Columbus, Ohio

1978-197 9 ...... Psychology Intern, San Fernando Valley CMHC, Van Nuys, California

1979-198 3 ...... Senior Research Associate, Human Interaction Research Institute, Los Angeles, California

PUBLICATIONS

Litrownik, A.J., Cleary, C.J., Lecklitner, G.L., & Franzini, L. Self-regulation in mentally retarded persons: Acquisi­ tion of standards for performance. American Journal of Mental Deficiency, 1978, 83, 86-89.

Roth, D . , Lecklitner, G., & Landsberg, G. Patterns of use. In Landsberg, G., Neigher, W.D., Hammer, R.J., Windle, C . , & Woy, J.R. (Eds.), Evaluation in practice: A sourcebook of progx'am evaluation studies from mental health care systems in the United States. (DHEW Publication No. (ADM) 78-763). Washington, D.C.: National Institute of Mental Health.

Greenberg, P.D., Freddolino, P.P., & Lecklitner, G.L. National directory of mental health advocacy programs. Los Angeles: Human Interaction Research Institute, 1982.

FIELDS OF STUDY

Major Field: Clinical/Community Psychology

Studies in Behavior Therapy. Professor Alan Litrownik

Studies in Community Systems, Professor Andrew Schwebel

iii TABLE OF CONTENTS

ACKNOWLEDGMENTS...... i i

VITA...... iii

LIST OF TABLES...... V

CHAPTER

1. INTRODUCTION...... 1

Historical and Conceptual Issues...... 4 Defining the Rights of Mental Patients.... 13 Conflict and Controversy...... 20 Patient Rights in the Community...... 29

2. MAJOR STUDY OBJECTIVES...... 43

Study Rationale...... 43 Study Objectives...... 46

3. STUDY METHODOLOGY...... 49

Overview of Study Design...... 49 Futures Methodology...... 51 The Study Panel...... 53 Phase One Method...... 55 Phase Two Method...... 58

4. STUDY RESULTS...... 62

Phase One Results...... 62 Phase Two Results...... 78

5. DISCUSSION...... 127

Review of Major Study Findings...... 127 Summarizing the Stakeholder Group Perspectives...... 136 Conclusions and Implications...... 140

REFERENCES...... 153

APPENDICES...... 169

iv LIST OF TABLES

Table Page

1 Study Design...... 50

2 Phase One Study Panelists...... 57

3 Phase Two Study Panelists...... 61

4 Number of Secondary Group Affiliations by Primary Stakeholder Groups...... 81

5 Secondary Group Affiliations by Primary Stakeholder Groups...... 83

6 Cluster Confirmation Statistics for Equity Cluster...... 85

7 Cluster Confirmation Statistics for Autonomy Cluster...... 86

8 Cluster Confirmation Statistics for Services Cluster...... 86

9 The Rights Issue Clusters...... 87

10 Rights Tissue Cluster Scores by Primary Stakeholder Groups...... 89

11 Rights Issue Item Scores by Issue Clusters and Primary Stakeholder Groups...... 92

12 Items Included in the Optimism/Pessimism Cluster...... 95

13 Optimism/Pessimism Cluster Scores by Primary Stakeholder Groups...... 96

14 The Five Most Positive Forecasts and the Five Most Negative Forecasts as Rated by the Entire Panel...... 98

v LIST OF TABLES (continued)

15 Cluster Confirmation Statistics for Public Understanding and Support Cluster...... 99

16 Cluster Confirmation Statistics for Political Activism Cluster...... 100

17 Cluster Confirmation Statistics for Confrontation Cluster...... 101

18 The General Strategic Approaches Clusters...... 10 2

19 General Strategic Approaches Cluster Scores by Primary Stakeholder Groups...... 10 4

20 General Strategic Approaches Item Scores by Issue Clusters and Primary Stakeholder Groups...... 106

21 The Strategy Proposals Clusters: Correlations Between Item Scores and Cluster Scores...... 109

22 Strategy Proposals Cluster Scores by Primary Stakeholder Groups...... Ill

23 Scores for Impact-Chronically Mentally 111 Impact-Others and Feasibility by Strategy Proposals Clusters and Stakeholder Groups...... 115

24 Correlation of Merit Ratings with Impact- Chronically Mentally 111, Impact-Others, and Feasibility Ratings by Strategy Proposals Clusters and Stakeholder Groups...... 117

25 Distribution of Panelists by Rights Perspective for Each Stakeholder Group...... 120

26 Scores for All Clusters by Rights Perspective Groups ...... 122

27 Rights Perspective Ranks of the Top Five Strategies for Each Stakeholder Group...... 124

28 Strategy Proposals: Correlation Between Perspective Rank Orders and Stakeholder Group Rank Orders...... 126

vi I. Introduction

A recent book on the subject defines social policy as "a statement of social goals and means in society's efforts to help meet human need" (Magill, 1984, p. 3). In the area of mental health policy, the conventional goals and means of defining and treating mental illness have frequently been challenged by reform-oriented movements aimed at improving the lives and better meeting the human needs of those referred to as "mentally ill."

In the past two decades one of the foundations of mental health reform has been the development and codification of specific rights for mental health care recipients (Ennis & Emery, 1978; Herr, Arons, & Wallace, 1983; Ziegenfuss, 1983). Patient rights advocacy has often been exemplified by the use of class action litigation strategies designed to assure basic constitutional privileges to persons residing in public mental institutions. In such cases, attorneys have used the courtroom to establish new rights for certain groups or classes of mentally ill persons. For example, the case of Wyett v. Stickney (1971) established a right to adequate treatment for the residents of Bryer State Hospital in Alabama and established a precedent for the rest of the nation. A variety of such cases have been taken to the United States Supreme Court (Appelbaum, 1984). In more recent years legal advocates have been joined by other groups, including mental health care recipients, parent and family members, mental health associations and advocacy programs located within departments of mental health (Freddolino, 1983). The mental patients' rights movement has been led by members of these groups and has been credited with significantly altering mental health policy and practice in this country (Herr, Arons, & Wallace, 1983).

Commentators have attributed various roots and objectives to the mental patients' rights movement. Brown (1981) has suggested that the movement represents an extension of the civil rights, anti-war and women's movements of the 1960s and 70s. He cites opposition to the social control elements of organized psychiatry and psychology, the perpetuation of

1 2

sexism by the modern-day mental health establishment, and the abundance of psychologistic explanations of social problems as the basic raisons d'etre of the movement. Wald and Friedman (1978) trace the roots of the movement not only to the recent efforts to provide equality for racial minorities, but to the consumer movement as well. They portray the twin goals of the movement as the improvement and expansion of mental health services and the advancement and protection of the civil liberties of mental health care recipients. Other wr;ters have also drawn parallels to the more general consumer revolt spearheaded by Ralph Nader. For example, Kopolow (1977) has written:

Despite the belief of some psychiatrists that the mental health system is being singled out for special scrutiny by society and the legal profes­ sion, patients' rights is actually part of a far broader consumer movement seeking higher standards of accountability from all providers of service— be they television repairmen, senators, or physi­ cians. (p. 200)

Whether one views the growth of concern for patients' rights as a political movement designed to overcome societal oppres­ sion, an attempt to extend basic constitutional privileges and protections to mental health care recipients, or a means to provide greater accountability and improved services, there can be little doubt that reformist efforts to apply an ideology of rights to mental health care recipients has raised fundamental issues regarding the nature of our mental health care system and raised a host of thorny issues for mental health administrators (Mills, Cummins, & Gracey, 1983). In many cases these are not issues which are able to be solved by scientific or medical knowledges but are essentially moral dilemmas (Chodoff, 1984). In response to this movement, a former president of the American Psychiatric Association has declared that "the United States is engaged in an all-out legal war over the fate of the mentally ill" (Stone, 1975, p.2). While patients' rights advocates have declared themselves the "new kids on the block" pointing to a series of litigative and legislative victories (Plotkin, 1979), critics of this movement have suggested that patients' rights too often interfere with the ability of mental health professionals to meet the needs of mental patients (Lamb, 1981a; Stone, 1979). They claim that an overemphasis on patients' rights at the expense of patients' needs has allowed many patients to "die with their rights on" (Rachlin, 1975? Treffert, 1973). 3

Not only has it been suggested that the "rights" of mental health care recipients may be antithetical to their "needs," it also has been pointed out that such rights may conflict with the rights of others. For example, as Modlin (1976) has noted:

We must be aware that his (the psychiatric patient) are not the only rights involved. Rights of the patient's family also must be taken into account as well as the rights of the neighborhood and commun­ ity in which he lives. (p.29)

Such concern has led to an increasing backlash against the patients' rights movement. Shwed (1980), for example, has stated that "the pendulum has swung too far, and we should not passively wait for the laws of nature to send it on its return journey" (p. 198).

The debate regarding the proper and just rights to be ac­ corded mental health care recipients has evoked a barrage of complex and emotional arguments from the various constitu­ encies or stakeholders, often obscuring fundamental issues. As Tancredi (1980) has suggested, "in no other area of civil rights have the issues seemed so problematic, and so fraught by vague and, at times, unfounded polemics from all sides" (p. 199).

As a first step in beginning to understand the patients' rights movement and its impact on mental health policy, it seems important to trace briefly three major historical trends. First, the application of a rights ideology to the domain of mental health can be seen as a modern-day extension of a rich history of conceptual and social debate regarding the meaning, value and use of "rights" as a tool to promote equality and social justice. Secondly, the development of the mental health system in this country and the policy that guides it has historically been the target of criticism. In particular, a variety of reformist efforts have centered around the creation, use, and abuse of large public psychiatric hospitals. Thirdly, institutional criticism converged with several other social/political movements to ignite the patients' rights movement. The next section of this review (A. Historical and Conceptual Issues) will examine these trends in order to introduce some of the fundamental issues and conceptual problems associated with patients' rights reform. 4

Following this discussion the introductory chapter will turn toward an analysis of the convergence of these two trends and the resulting development of a variety of major rights for the mentally ill and those so perceived (B. Defining the Rights of Mental Patients). This section will focus on the emergence of judicial policymaking, through class action and test case litigation, as a major rights promotion strategy, particularly for those persons residing in mental hospitals or facing hospitalization. Also examined in this section will be the use of federal and state legislation to secure patients' rights.

This initial chapter will then introduce several of the major points of controversy surrounding the expansion of rights for mental patients (C. Conflict and Controversy). Here the principal stakeholders, i.e., those persons who affect or are affected by the rights accorded current or former mental patients, will be identified. Their perspectives on the issues will be compared, showing in some important instances, strongly clashing viewpoints. This section will close with a discussion of some of the possible underlying sources of conflict responsible for the oftentimes heated debate among the major stakeholders.

As a result of a variety of factors, the number of persons residing in our state hospitals has been greatly reduced in the past 25 years. One of the goals of deinstitutionaliza­ tion was to improve the lives of the severely mentally ill by allowing them to return to or remain in noninstitutional community settings. For many such persons, however, a return to the community has meant only abandonment, abuse, and discrimination. The final section of this introduction (D. Patient Rights in the Community) will establish a change in emphasis for patients' rights advocacy as it begins increasingly to address itself to community rather than insti­ tutional issues. The consequences of deinstitutionalization will be reviewed with special attention to its impact on the so-called "chronically mentally ill."

A. Historical and Conceptual Issues

1. Defining and Understanding Rights

To appreciate the complexity of the issues associated with the development of rights for the mentally ill requires some understanding of a number of fundamental concepts. One of the most basic and yet complex of such concepts concerns the 5

meaning of the term "right." In other words, what is a right? Few authors have examined this question in regard to the rights of mental patients. In general, such discussions seem to presume that patient rights are synonymous with legal rights articulated in court decisions and based on consti­ tutional or statutory principles or perhaps outlined as part of federal or state legislative enactments. Such a presumption necessarily limits the rights of mental patients to those claims and entitlements that are conferred by law. While such a conception of rights is both common and acceptable, it is not the only way to think of rights. In order to fully appreciate the utility of a rights ideology as a reformist tool, it is essential to understand alternative usages, meanings, and implications of the term "rights."

In general, rights represent claims, privileges, and entitlements necessitating a corresponding duty or duties by another or others. The rationale and utilization of the principle of rights has changed over time ranging from largely philosophical expressions of the natural order to valuable political tools designed to promote social equality and justice. The various conceptions of rights, however, also share some common elements.

Rights are not absolute or deterministic. Although an indi­ vidual or a group of persons possesses a particular right, it does not necessarily follow that the right will be honored. In some cases inadequate enforcement of a right will allow the right to go unobserved. Rights are clearly not self- enforcing. Scheingold (1974), for example, has written of what he terms "the myth of rights." According to his analysis, a mere declaration of rights, even positive rights, is too often presumed to be synonymous with actual social change when, in fact, no change has occurred. He suggests instead that rights actually represent no more than "authori­ tatively articulated goals of public policy"(Scheingold, 1974, p. 6).

Rights are also not absolute because they compete with other and occasionally more compelling rights or even interests. As Melden (1980) has noted:

Sometimes and unavoidably so, we are forced to choose between according or exercising a right and following still another line of conduct for which there is also good supporting reason. Rights conflict with rights. (p. 1) 6

Because of this fact, some, such as Hart (1954), have con­ cluded that rights are merely something to be taken into account with no associated moral obligation or duty. In the case of the mentally ill, for example, their basic right to liberty or freedom may, at times, conflict with the safety interests of community members or with the paternalistic duty of the society to protect those who are not able to provide for their own safety and well-being. Thus, the State justi­ fies involuntary civil commitment for those persons who, as a result of their mental illness, are considered dangerous to themselves or others or so disabled as to be unable to pro­ vide the basic necessities of life for themselves. In such cases, the State's interest prevails over the rights of the individual even though involuntary hospitalization has been recognized by the U.S. Supreme Court as "a massive curtail­ ment of liberty" (Humphrey v. Cady, 1972).

Finally, some discussion is required of the inevitable con­ fusion between "rights" on the one hand and "interests" or "needs" on the other. Clearly, rights in many instances serve to defend the interests of individuals in their inter­ actions with others or with the government. However, rights are not synonymous with interests or needs and may, at times, conflict with one's perceived "best interests." As Benn (1967) has observed:

I may have rights that are not to my advantage. A right to drink myself to death without inter­ ference would not be logically absurd. Though, generally speaking, our rights do protect our interests, they are not themselves protected interests. (p. 196)

As has previously been illustrated, when "rights" collide with "interests" we cannot necessarily conclude that such rights will prevail. Again, rights are not absolute and a just society will seek to balance competing rights, needs and interests in as fair a way as possible.

In regard to mental health policymaking the clash of "rights" and "interests" is perhaps best illustrated in the continuing debate regarding the right to refuse treatment. Civil liber­ tarian attorneys have argued that involuntarily hospitalized patients have a constitutional right to refuse unwanted psychotropic medication (Jamison v. Farabee, 1983; Mills v. Rogers, 1982; Rennie v. Klein, 1979). Mental health professionals, in turn, protest that such a right interferes with the "best interests" and the clinical needs of such persons. Expressing the opinion of many mental health 7

service providers, Rachlin (1975) has stated that a right to refuse treatment "cannot be of benefit to the involuntary hospitalized patient. When rights are not consonant with needs, they lose much of their value" (p. 99).

Adding to the confusion between rights and needs is the problem that needs or interests are often elevated to rights by their supporters in order to promote their value. As Kempner (1980) has noted, "Having a right to something...is a much more impressive credential to it than merely having an interest in it" (p. 348). Rights have more status than mere interests or needs because rights imply a corresponding duty, whereas there is no such duty associated with expressions of interests. Advocates of particular interests frequently elevate such interests to rights status in order to require that these interests are satisfied. In order to justify this elevation in status, these advocates must associate the interest in question with some legal, moral or humanistic principle which serves as the basis for rights. If this can be done successfully then mere interests may become rights. For example, while black Americans have always had an interest in equal educational opportunities, they did not develop a legally recognized right to equal educational oppor­ tunities (with the associated responsibility of the govern­ ment to provide such an education) until 1955 with the Supreme Court decision in Brown v. Board of Education of Topeka. In this manner today's interests may be converted to tomorrow's rights.

2. Institutional Criticism

Initial efforts to identify and defend the legal rights of the mentally ill focused primarily on persons in public psychiatric hospitals. Criticism of institutional condi­ tions, policies and practices raised a number of issues regarding the fundamental liberty, due process, and equal protection interests of such persons, particularly those who were involuntarily hospitalized. A brief historical review of the development of these institutions will help to preface the discussion of the criticism that sparked this movement.

A number of writers have documented the birth and growth of institutions for the mentally ill (Dain, 1964; Deutsch, 1949; Foucault, 1965; Grob, 1973; Rothman, 1971). Institutions built specifically for the care and treatment of the mentally ill in this country began to appear in the early nineteenth century. They seemed to be a product of the unique social and economic conditions of that time period. Grob (1966a), for example, has suggested that the development of 8

institutions for the mentally ill was largely a reaction to the industrialization of the United States in the nineteenth century. Rapid social change and increasing migration led to the hospitalization of those who could not adapt to the fast pace and new living conditions. Similarly, Mechanic (1969) has written:

Prior to the nineteenth century poor insane persons were ignored; if they made a nuisance of themselves they were treated as criminals, and their incarcer­ ation was usually degrading and inhumane. With changing conditions in America in the nineteenth century and decreasing tolerance for the mentally ill under the modified social circumstances accom­ panying industrialization, reform movements devel­ oped which advocated building special institutions to separate the mentally ill from criminals and expose them to a sympathetic environment. (p. 7)

The first institution built exclusively for treating the mentally ill was the Friends' Asylum in Frankford, Penn­ sylvania. The hospital was built in 1817 under the direction of Quaker minister Thomas Scattergood. Public asylums for the mentally ill began to appear in the 1820s.

Moral treatment, based on the work of Phillippe Pinel in France, quickly became the accepted standard of psychiatric intervention. As described by Grob (1966b):

Kindness was the fundamental ingredient in Pinel's therapeutic approach....Moral treatment involved the creation of a total therapeutic environment: social, psychological, physical. It assumed that insanity was a curable disease, given understand­ ing, patience, kindness and proper treatment. (p.511)

The general practice of moral treatment was augmented by a variety of other techniques including bleeding, low food intake diets, electric shock, a variety of drugs, and cold showers. While adherents to this regimen, particularly hospital superintendents, claimed cure rates as high as 80-100%, subsequent investigation has shown these claims to be grossly exaggerated (Rothman, 1971).

Despite the humanistic intentions of moral treatment and the inflated stories of its success, it soon became apparent that many hospitalized patients were victimized by their treatment in psychiatric hospitals. In 1908 Clifford Beers published 9

an autobiography describing his experiences as a psychiatric patient. His story provided a searing indictment of American psychiatric hospitals and told of the beatings, choking, isolation, and straightjacketing that Beers experienced and witnessed. To improve such conditions, Beers called for the establishment of a national association dedicated to reform­ ing mental hospitals through programs of public education, research into the causes and treatment of mental illness, and the prevention of mental illness and promotion of mental health. As a result of his efforts, the National Committee for Mental Hygiene was formed in 1909. This organization served to spearhead the Mental Hygiene Movement in this country. The goals of this movement were the promotion of a humanistic approach to mental illness, the improvement of hospital conditions, and the development of public support and concern for the mentally ill.

Despite the efforts of this movement, psychiatric hospitals witnessed little improvement. Eollowing World War II Albert Deutsch visited more than two dozen state hospitals across the country. He wrote of the tremendous overcrowding, horrible conditions and barbaric practices which typified American psychiatric hospitals at that time. In his words, he repeatedly found:

scenes that rivaled the horrors of the Nazi con­ centration camps— hundreds of naked mental patients herded into huge, barnlike, filth- infested wards, in all degrees of deteriora­ tion, untended and untreated, stripped of every vestige of human decency, many in stages of semi- starvation. (Deutsch, 1949, p. 449)

Many persons who were hospitalized spent long years under such conditions. Brown (1979), for example, has reported that in 1950 hospitalized persons who were diagnosed as psychotic would spend an average of 20 years in an institu­ tion. It was only several years later, in 1955, that the inpatient population of our nation's public mental hospitals reached its zenith. By year's end 558,972 persons were hospi­ talized, accounting for approximately 50% of the psychiatric care episodes (Pollack & Taube, 1975).

While public criticism of the state hospital system continued to escalate, members of the psychiatric profession also acknowledged the apparent bankruptcy of institutional mental health care. In 1958 Dr. Harry Solomon, in his presidential address to the American Psychiatric Association, noted that: 10

After 14 years of effort, in this year 1958, rarely has a state hospital an adequate staff as measured against the minimum standards set by our Associa­ tion, and these standards represent a compromise between what was thought to be adequate and what it was thought had some possibility of being real­ ized.... In many of our hospitals about the best that can be done is to give a physical examination and make a mental note on each patient once a year, and often there is not enough staff to do this much. (Solomon, 1958, p. 7)

Official recognition of the inadequacy of care and treatment available in public psychiatric hospitals continued with the issuance in 1961 of the final report of the Joint Commission on Mental Illness and Health. Commissioned by Congress to analyze and evaluate the needs of the nation's mentally ill and the resources available to meet those needs> the report of the Commission concluded that:

If we are to be totally honest with ourselves and with the public, then we must view the mental health problem in terms of the unmet need— those who are untreated and inadequately cared for. We have no definitive analysis of how many such pa­ tients there are, but information we have leads us to believe that more than half of the patients in most state hospitals receive no active treatment of any kind designed to improve their mental con­ dition. (Joint Commission on Mental Illness and Health, 1961, pp. 22-23)

Just two years later, the Community Mental Health Centers Act of 1963 was signed into law. According to the recent observer, "this watershed development in policy officially signaled the start of an era of community mental health and 1 deinstitutionalization' practices that continue to define the public mental health system into the early 1980's" (Rochefort, 1984, p. 1).

At about this same time sociologist Erving Goffman (1961) wrote a book based on his year of observation at St. Eliz­ abeth's hospital in Washington, D.C. He described the hospital as a "total institution" similar to prisons, concen­ tration camps and military barracks. According to Goffman, "The handling of many human needs by the bureaucratic organ­ ization of whole blocks of people— whether or not this is a necessary or effective means of social organization in the 11

circumstances— is the key fact of total institutions" (p. 6). Placed in a situation in which his life was largely under the control of others, the psychiatric patient underwent a process of "mortification" in which his self-image was pro­ gressively stripped away and an "untraining" in which he became temporarily unable to perform certain daily living skills. In this fashion, the person became a patient, depen­ dent upon the very institution which had robbed him of his ability to care for himself. Unfortunately, as Goffman recog­ nized, "to be made a patient is to be made a serviceable object, the irony being that so little service is available once this is done" (p. 379). Thus, according to Goffman's thesis, not only did psychiatric hospitals not provide ade­ quate care and treatment, but the institutions themselves, by their very nature, produced serious debilitating problems for the residents of such institutions.

3. Social and political trends

The mounting criticism of public psychiatric hospitals con- ... .verged with several other social movements or trends to spawn the patients' rights movement. One of the important cata­ lysts was the growing faith that this nation placed upon its judicial system. In particular, historically oppressed groups such as blacks and women were beginning to resort to the courts and to the streets to seek redress by promoting rights for themselves. The civil rights movement used a variety of strategies including class action litigation, legislative initiatives, and public demonstrations to enhance social and economic opportunities for black Americans. These efforts also served as an example for other minority and oppressed groups who sought to improve their position in society and correct perceived inequalities through the promulgation of both legal and moral rights. In regard to the mentally handicapped, Wald and Friedman (1978) have suggested:

Increasingly in the United States the mentally ill, the mentally retarded and the physically handicapped perceive themselves— and are politi­ cally perceived— as a minority group who have historically been denied basic civil liberties such as the right to liberty and the rights to vote, to marry, to bear children, to be em­ ployed, to go to school. Their campaigns resem­ ble in method and legal theory those of other disadvantaged groups— racial, religious and sexual— in American politics. (p. 142) 12

Civil rights activists found an ally in the Warren Court. Many groups including racial minorities, prisoners, welfare recipients, tenants, and draft resisters were able to have their cases heard and endorsed by the Supreme Court under the leadership of Chief Justice Earl Warren. As a result of these decisions, what once were regarded as mere privileges were elevated to the status of rights.

Also contributing to the civil rights movement, and ulti­ mately to the effort to advance the rights of mental pa­ tients, was the tremendous expansion of public interest lawyers. Bolstered by federal initiatives and funding to provide legal representation for the poor and others tradi­ tionally denied legal representation, massive numbers of well trained and liberal minded attorneys were drawn to public interest law. Their presence was a valuable contribution to the civil rights movement.

Another contributing factor in the emergence of patients' rights advocacy has been the growth of consumerism. Pur­ chasers of goods and services no longer are willing to accept without question the opinions of "experts,” professionals, or even automobile mechanics. As a result, a host of develop­ ments including malpractice suits, product safety require­ ments, and self-help groups of all sorts have proliferated.

As one example of increased consumerism, the anti-psvchiatry movement has contributed to the concern for the rights of mental patients. Spurred by outspoken writers such as Thomas Szasz (1963, 1970, 1974, 1977), R. D. Laing (1965, 1967), Thomas Scheff (1984), Erving Goffman (1961, 1963) and Phyllis Chesler (1973), this movement has been highly critical of the social control elements of the modern day mental health establishment and the medical model used to describe and treat "mental illness." Frank (1979) has described this loosely organized campaign as:

a present day political movement to free mental patients from psychiatric oppression. Its fun­ damental ideology begins with the rejection of medical and psychiatric definitions of mental illness; its ultimate goal is to smash the enormous power wielded by the mental health system. (p. 11)

In discussing the relationship between efforts to expand the rights of mental patients and the anti-psychiatry movement, Frank has written: 13

The struggle for patients' rights is central to the anti-psychiatry movement because, although the movement's ultimate goal is to smash/eliminate the present mental health system, it is crucial in the meantime to work towards protecting people's rights within the system. (p. 43)

Within these swirling currents of social change and criticism, concern began to grow for the rights of mental patients, particularly those residing within large public psychiatric hospitals. As Kopolow (1977) has noted:

Patients within an institution experience a double limitation on their rights— one created by their disabilities and the other by the very organization of an institutional system....Even in the most enlightened institutions, there will inevitably be a strain between the needs of an individual to live a life without outside domination and the institution's needs to deliver services efficiently. Within a mental health institution or any other long-term care facility, such organizational factors can be dehumanizing, and promote frustration, resignation and despair. (p. 200)

B. Defining the Rights of Mental Patients

In the early 1960s legal advocates began to challenge institutional conditions and practices by resorting to the courts to establish a variety of legal rights for persons residing within public psychiatric hospitals. Major rights related to institutional care and treatment for the mentally ill include the right to treatment, the right to the least restrictive treatment alternative, the right to liberty, rights to due process in civil commitment, and the right to refuse treatment. A discussion of the major case law surrounding each of these substantive areas will follow.

1. Right to treatment

Against the swirling currents of institutional criticism, the civil rights movement, and consumerism, Morton Birnbaum, a medical doctor and lawyer, first proposed a constitutional right to treatment (Birnbaum, 1960). He noted that 14

involuntarily confined individuals were deprived of their liberty for the sole purpose of receiving treatment, but that because adequate treatment was not available, individuals were not offered the opportunity to regain their freedom. By his analysis this represented a violation of constitutional due process. From this logic was drafted the first definition of the right to treatment— "the legal right of a mentally ill inmate of a public mental institution to adequate medical treatment for his mental illness" (Birnbaum, 1960, p. 499.)

The courts, however, had been very reluctant to enter into what they considered an area of medical jurisdiction, typically deferring to psychiatric recommendations in cases involving the matter of treatment (In re Maddox, 1958; People v. Levy, 1957). Although eventually decided on statutory rather than constitutional grounds, Rouse v. Cameron (1966) was the first judicial decision to suggest a legal right to treatment. The court first wrestled with the constitutional basis for a right to treatment several years later in Nason v. Superintendent of Bridgewater State Hospital (1968). Although Rouse and Nason set the stage for the development of a legal right to treatment, neither offered any legal solu­ tion to the problem of inadequate institutional treatment. Neither case resulted in the release of the plaintiff or the establishment of sound guidelines for adequate treatment. While the courts seemed willing to recognize such a right, they seemed baffled as to how to enforce it. As the editors of the Harvard Law Review observed, "The difficulty of formu­ lating standards of adequacy seems very great" (Comment, 1967, p. 900). Similarly, Judge Bazelon, who issued the Rouse decision, admitted that "Rouse discovered the fabled right without a remedy" (Bazelon, 1969, p. 743).

A constitutional basis for the right to treatment and an associated remedy for such a right came with the decision of Wyatt v. Stickney (1971). A class action suit brought on behalf of the residents and staff of Bryce State Hospital in Alabama, Wyatt charged that conditions at the facility were so poor that patients were being denied their constitutional right to treatment. After hearing the evidence, Federal District Court Judge Frank Johnson ruled that:

There can be no legal (or moral) justification for the State of Alabama's failure to afford treatment— and adequate treatment from a medical standpoint— to the several thousand patients who have been civilly committed for treatment purposes. To deprive any citizen of his or her liberty on 15

the altruistic theory that the confinement is for humane therapeutic reasons and thus fail to provide adequate treatment violates the very fundamentals of due process. (p. 786)

Judge Johnson, in his ruling, went on to outline three broad criteria for adequate treatment: 1) a humane psychological and physical environment, 2) qualified staff in adequate numbers, and 3) individualized treatment plans. With the help of various professional groups acting as amicus curiae, these general guidelines were translated into minimum treatment standards specifying such matters as staffing ratios, floorspace requirements, nutritional standards, and the establishment of a human rights committee at the institution to review potential violations.

The right to treatment, propelled by legislation and litiga­ tion, was quick to spread across the country. Pfohl (1976) conducted a survey of all 50 states as well as the District of Columbia and Puerto Rico to assess the influence of the right to treatment issue. Of the 54 jurisdictions which responded, 26 reported related litigation or legislation.

More recently, Lyon, Levine, and Zusman (1982) reviewed the mental health statutes of the 50 states and the District of Columbia. They found that 48 of the jurisdictions surveyed had state statutes which provided for the right to appro­ priate treatment or some substantial equivalent.

Still, implementation of these laws has been a slow process. Mental Health administrators have encountered a variety of problems in trying to translate this legal mandate into daily practice within psychiatric institutions. Among the problems include the cost of implementation, the limited understanding of the judiciary of mental health practice, and the lack of national standards in this area (Mills, Cummins, & Gracey, 1983).

2. Right to treatment in the least restrictive alternative

A second important judicially determined right for the mentally ill and those so presumed is the right to the least restrictive treatment alternative (Lake v. Cameron, 1967; Lessard v. Schmidt, 1972). Chambers (1973) described the basic principle underlying this right:

when government does have a legitimate communal goal to serve, it should act through means that curtail freedom to no greater extent than is 16

essential for serving the goal. When you swat a mosquito on a child's back, you don't do it with a baseball bat. (p. 993)

This general principle found legal support with the U.S. Supreme Court decision in Shelton v. Tucker (1960). Here the Court ruled, "even though the governmental purpose be legit­ imate and substantial, that purpose cannot be pursued by means that broadly stifle personal liberties when the end can be more narrowly achieved" (p. 479).

When applied to the domain of mental health, this right requires the State, when considering involuntary commitment, to show that its purposes could not be achieved through an intervention less restrictive of the individual's liberty. This translation of a legal principle is not without its critics. Some authors (e.g., Gutheil, Appelbaum & Wexler, 1983) have commented that the application of this principle to mental health is inappropriate. They argue that in the case of mental health treatment, the intervention itself may ultimately reduce the coercion to which the person is subject. In any event, because less restrictive alternatives are often appropriate but not available, this right has recently been used to require the State to create residential and other alternatives to hospitalization (Brewster v. Dukakis, 1982; Dixon v. Weinberger, 1975). In Massachusetts such a suit resulted in a tenfold increase in the community mental health care budget and a 48% decline in the state hospital census (Okin, 1984).

3. Right to liberty

Although the United States Supreme Court has not ruled on the constitutionality of either the right to treatment or the right to treatment in the least restrictive alternative, the Court did establish a parallel principle referred to as the right to liberty (O'Connor v. Donaldson, 1975). Kenneth Donaldson had been hospitalized for 15 years and on numerous occasions had demanded his release, claiming that he was not dangerous, that he was not mentally ill, and that he was not receiving treatment. His requests for release, which were consistently denied, were also supported by offers for assistance and care by suitable agencies and friends in the community. The holding of the Court was:

a State cannot constitutionally confine without more a nondangerous individual who is capable of surviving safely in freedom by himself or with the help of willing or responsible family mem­ bers or friends. (p. 407) 17

Thus, in order to justify confinement of nondangerous mental patients, the State must provide more than simple custodial care.

4• Due process rights

Another important set of judicially determined rights are those related to the process of civil commitment. Recogniz­ ing the important liberty interests associated with involun­ tary hospitalization and the lasting stigma attached to those who are regarded as "mental patients," the courts here sought to provide due process protections prior to hospitalization. Lessard v. Schmidt (1972), for example, held that a person facing civil commitment has a constitutional right to due process, similar to the due process rights accorded persons involved in criminal cases. Among the elements required by due process would be notification, a hearing, and the right to be present and put on a defense, including a right to counsel. In other important cases bearing on the issue of due process, the U.S. Supreme Court has held that prisoners cannot be transferred to mental hospitals without a hearing by an independent factfinder (Vitek v. Jones, 1980) and that the evidence used to commit someone to a state mental hospital must be "clear and convincing" (Addington v. Texas, 1979).

5. Right to refuse treatment

Probably the most controversial right for hospitalized mental patients is the right to refuse treatment. This right raises a host of complicated problems related to such issues as informed consent (Roth, 1982; Stone, 1979), the powers of the state in civil commitment (Szasz, 1965), and the effects of certain psychiatric treatments (Plotkin, 1977; Michels, 1981). Legal attention was first focused on the right to refuse treatment in the case of Kaimowitz v. Michigan Department of Mental Health (1973). Here a court ruled that an involun­ tarily confined mental patient could not consent to experi­ mental psychosurgery. Basing its judgment in part on the constitutional right to privacy (Roe v. Wade, 1973), the court cited the Brandeis dissent in Olmstead v. United States (1928):

The makers of our Constitution undertook to secure conditions favorable to the pursuit of happiness. They recognized the significance of man's spiritual nature, of his feelings and of his intellect. They 18

knew that only a part of the pain, pleasure and satisfaction of life are to be found in material things. They sought to protect Americans in their beliefs, their thoughts, their emotions and their sensations. They conferred, as against the Govern­ ment, the right to be let alone— the most compre­ hensive of rights and the most valued by civilized men. (p. 478)

More recently several courts have recognized a legal right for hospitalized patients to refuse psychotropic medication under certain specified conditions (Jamison v. Farabee, 1983; Mills v. Rogers, 1982; Rennie v. Klein, 1979). The Supreme Court has declined to rule on the right to refuse treatment leaving clinicians, in the words of one psychiatrist, "confronted with a bewildering set of pronouncements" (Appelbaum, 1983, p. 11). These decisions have created enormous antagonism between mental health professionals, on the one hand, and civil libertarian attorneys and patients, on the other. Mental health professionals have generally opposed this right, viewing it as in opposition to both their professional authority and the patients' best interests (Gutheil, 1980; Rachlin, 1975). Stone (1981), for example, has criticized the right to refuse treatment stating that, "a legal system that orders people into mental hospitals and then orders psychiatrists not to treat them seems to make Kafka's vision of the law a reality" (p. 353).

Patients' rights lawyers, however, argue that the right to refuse treatment is both legally justified and medically advisable. Morris (1981), for example, has written:

I believe that the right to refuse treatment is conceptually sound and should be accepted on its own merits. From a medical perspective, positive therapeutic consequences can be achieved when a psychiatrist informs his patient about proposed therapy, attempts to persuade the patient to accept it, and respects the patient's decision. A therapeutic alliance can not be achieved if the psychiatrist dismisses the patient's expressed concerns, overrules the patient's judgment, and compels treatment. From a legal perspective, the right to refuse treatment affirms patient autonomy and requires that we afford mentally disturbed individuals basic human dignity. (p. 298)

Similarly, many current and former psychiatric patients regard the right to refuse treatment as the single most 19

important right for the mentally ill and those so presumed. As ex-psychiatric inmate Judi Chamberlin has stated, "The right to refuse treatment, from the patient's point of view, is the key right, because only if the right to refuse is guaranteed does the individual become an agent who can nego­ tiate with others the terms for treatment" (as quoted in Byrne, 1981, p. 257).

6. Rights conferred by legislation

In addition to these major judicially determined rights, hospitalized mental patients also enjoy the protection of rights found in both state and federal statutes. In 1980 Congress passed the Mental Health Systems Act (Public Law No. 96-398, 94 Stat. 1564, 1980) and it was signed into law by President Carter. Included among the provisions of this law were sections related to patients' rights (Section 501) and mental health advocacy (Section 502). In its final form the legislation limited its bill of rights to a "sense of the Congress" that states should review and revise their statutes to make them consistent with the rights outlined in Section 501. Thus, the legislation served essentially as a recommendation rather than as carrying the force of law. Most of the Mental Health Systems Act, including Section 502, was repealed by the Omnibus Budget Reconciliation Act of 1981 (Public Law 97-35, 95 Stat. 357, 1981). The bill of rights, still cast as a recommendation, survived.

In a recent study designed to assess the degree of states' compliance with the rights contained in Section 501, Lyon, Levine, and Zusman (1982) found most states' statutes to be very insufficient with respect to patients' rights pro­ visions. They discovered, for example, that only 22 states were in substantial compliance with at least a third of the act's major recommendations. Rights most commonly found in states' statutes were related to confidentiality of records, rights to telephone, mail and visitors, access to records, and freedom from restraint or seclusion.

Although not creating any new rights, another piece of federal legislation having important implications for the rights of hospitalized mental patients was The Civil Rights of Institutionalized Persons Act of 1980 (46 U.S.C. § 1977). As quoted in the Mental Disability Law Reporter ("Summary and Analysis," 1983), Assistant Attorney General for Civil Rights William Reynolds recently stated:

Its essential purpose is to afford the Attorney General of the United States statutory authority 20

to proceed against institutions that demonstrate a "flagrant" disregard for the constitutional rights of those individuals confined in an offending facility. (p. 7)

Under this piece of legislation the federal government has jurisdiction to bring action, including litigation, against institutions which violate the rights of their residents, especially those rights related to physical safety and bodily restraints.

C. Conflict and Controversy

A variety of persons and groups affect and/or are affected by the rights granted to mental patients and can thus be regarded as "stakeholders" in the process and outcome of related policies and programs designed to protect such rights.

1. Mental health care recipients

Clearly one of the stakeholder groups most affected by the articulation and enforcement of patients' rights are mental health care recipients. In regard to patients' rights issues, the most organized and outspoken recip­ ients are associated with the so-called "mental patients' liberation movement." According to a movement spokes­ person, Janet Gotkin, herself a veteran of 10 years of psychiatric treatment:

The Mental Patients' Liberation Movement spawned the advocacy movement in this country. The Movement began in the late 60s or very early 70s when angry ex-patients began to form small groups and talk to each other about their experiences....Ex-inmate groups have publicized the atrocities that occur with official sanction in mental hospitals and community mental health centers all across the country, raising public consciousness tremendously. We continue to work to get people out of hospitals, to educate the public, to or­ ganize inmates inside hospitals, to bring about legislation that will limit or outlaw the use of psychiatric drugs, electroshock and civil commitment. Ex-inmate groups are the backbone and the heart of the patients' rights movement. (Gotkin, 1980, p. 5) 21

These groups typically draw much of their ideology from the writings of Szasz (1974) and Laing (1967) and espouse an anti-psychiatry position, questioning the validity of the medical model and the treatments offered by modern psychiatry. A number of ex-patients have written books deploring the conditions of their hospitalization (Donaldson, 1976; Gotkin & Gotkin, 1975), criticizing the use of electroconvulsive therapy (Frank, 1978), and suggesting the creation of patient-controlled alterna­ tives to hospitalization (Chamberlin, 1978). The movement has its own newspaper (Madness Network News) which reports on legislation and litigation related to patients' rights, provides updates on the activities of various movement groups, and presents articles written by ex-psychiatric inmates commonly denouncing civil commit­ ment, forced medication, electroshock, and, in general, the modern-day practice of psychiatry. Movement groups also hold an annual meeting, the International Conference on Human Rights and Psychiatric Oppression (Walker, 1980).

The scope of this movement is somewhat unknown. As Severo (1978) has remarked:

It remains unclear how many people are involved. But at least thousands of past and present mental patients are partici­ pating in what they regard as their liber­ ation movement, a nonviolent effort that has attracted people of all ages and has an orientation that is essentially middle-class. (p. D14)

While movement representatives speak of major successes resulting from their efforts, others have been more skeptical of their impact. Schur (1980), for example, has written, "The combination of geographic separation, diversity of outlooks on questions of therapy, and un­ certainty or disagreement regarding the proposed move­ ment's relation to other radical movements appear so far to have limited its direct impact" (p. 39).

2. Parents and family members

A second major stakeholder group is comprised of parents and family members of mental health care recipients. Historically, many mental health professionals have viewed parents as a major cause of mental illness. 22

Little consideration has been given to the effects of a mentally ill person on the parents and other family members despite the fact that 55 to 70 percent of patients discharged from mental hospitals return to live with their families (Bernheim, Lewine & Beale, 1982). Recently, however, parents have begun to publicize the often traumatic impact on the family created by a mentally ill family member. Hatfield (1982), for example, has written:

Mental illness is a major upheaval in their (the family's) lives, a catastrophic event that causes great pain and alters their hope for their relative. There is grief for the loss of a once-promising child. They live in a state of high tension, always on guard for the next episode that will throw the whole family into a new state of disequilibrium. As time goes on, the burdens weigh heavily, and the need to help the person learn to manage his life becomes paramount. Families need knowledge about mental illness and skills for coping with the many problems it presents. They search in vain for someone to give this kind of help. (p. 513)

Within the past several years, parents of the mentally ill have begun to organize for purposes of advocacy and mutual support (Lamb & Oliphant, 1979). In 1979, approx­ imately 100 such groups from more than thirty states came together to form the National Alliance for the Mentally 111 (NAMI). Since that time the number of local groups has grown steadily and NAMI has established a national headquarters in Washington, D.C. Included among the major objectives of this organization are the improvement of existing mental health services, the expansion of biological research into the causes and treatment of mental illness, greater accountability on the part of mental health professionals, and increased involvement of parents and other family members in mental health policy­ making. Parents' groups have also been critical of certain patients' rights, such as those related to due process and civil commitment, which many feel interfere with needed treatment for their relatives. While some parents have advocated the advancement of certain rights for their mentally ill relatives, others have called for increased attention to the rights of families (Robbins & Robbins, 1974). 23

In addition to patients and parents, a number of other groups are actively involved and/or affected by patient rights matters.

3. Mental health professionals

The emergence of patients' rights has transformed the conventional dyadic relationship between doctor and patient. As Bloom and Asher (1982) have noted:

Mental health professionals have tended to adopt the traditional physician's orienta­ tion to service. A patient seeks relief from a set of symptoms. The physician diagnoses and prescribes a set of remedies. If appropriate, those remedies are provided by the physician in the form of medical care. The physician seeks to determine what is best for the patient and asks only that the patient comply with those treat­ ment recommendations. In essence, physi­ cians are accustomed to and, indeed, are trained to provide what might be called substitute judgments for their patients. (author's italics) (p. 23)

When persons are hospitalized against their will, how­ ever, the fundamental nature of this relationship is altered. In institutional settings, the balance of power between the mental health service provider and the patient is eroded, in many instances leaving the insti­ tutionalized patient little control over the course of his or her treatment. In describing this phenomenon, Federal Judge David Bazelon (1980) has written:

In institutional settings, patients can seldom control their relationship with their psychiatrists. They are no longer free to disregard their doctor's judgment that they are mentally ill. The dangers of a psychiatrist's hidden agenda— his per­ sonal and professional biases and conflicts of interest— are thus magnified....The goals of an institution are internalized, consciously or unconsciously, to a greater or lesser degree by the psychiatrists it employs. (p. 79) 24

In an attempt to restore the balance to the relationship between mental health professionals and their clients, many patients' rights serve to include other parties, such as the judiciary and other government branches, in both clinical and administrative decisionmaking.

Many mental health professionals have been vehemently critical of such rights, viewing them as interfering with their ability to exercise sound clinical judgment (Sehdev, 1976). As Greenblatt (1980) has suggested, "As emphasis on the rights of patients in hospitals has grown, it has become increasingly difficult for staff, in many instances, to provide the type of care and treatment believed most appropriate (p. 67). As a result, mental health professionals claim that the needs of patients too often go unmet at the expense of their rights. As Treffert (1973) has remarked, "In the zeal to impeccably protect the patient's civil liberties and rights, an increasing number of troubled and psychotic patients are what I choose to term dying with their rights on." (p. 1041) Responding to such concerns, mental health professionals have called for a better balancing of patients' rights with patients' clinical needs (Sadoff, 1979). Others less resistant to the intrusion of patients' rights have begun to consider the therapist's responsibility in assuring such rights (Liss-Levinson, Hare-Mastin, Marecek, & Kaplan, 1980; Ziegenfuss, 1983).

In trying to reduce the historical schism between advocates and mental health professionals, Eth, Levine & Lyon-Levine (1984) have suggested that these two groups "should be faithful to their role, candid to others as to the nature of their role, respectful of the others' roles, and obedient to the law" (p. 666).

4. Mental health advocates

As previously mentioned, the advent of the public inter­ est bar in this country was one of the major precipi­ tating factors behind the patients' rights movement. Its importance stemmed in part from a rather fundamental philosophical difference between the legal and medical models with respect to the appropriate relationship between the professional and the client. Whereas mental health professionals may substitute their judgment for that of their patients, believing they are acting in the patient's best interest, the legal advocate model re­ quires the attorney to represent the stated wishes of the 25

client. In defense of this approach, civil libertarian attorneys frequently cite Supreme Court Justice Louis Brandeis who said:

Experience should teach us to be most on our guard to protect liberty when the government's purposes are beneficent. Men born to freedom are naturally alert to repel invasion of their liberty by evil- minded rulers. The greatest dangers to liberty lurk in insidious encroachment by men of zeal, well-meaning but without under­ standing. (Olmstead v. United States, 1928, p. 438)

Legal advocates have applied this philosophy through class-action and test-case litigation to challenge the authority of the State and of mental health professionals by extending basic constitutional and statutory rights to the mentally ill. Robert Plotkin, formerly an attorney with the Mental Health Law Project in Washington, D.C., has asserted that, "The legal activism of the past decade...has exposed state institutions for the hellholes they really are, and has destroyed forever the myth that society always acts in the best interests of this captive population" (Plotkin, 1979, p. 97).

As testimony to the extent of legal activity in this area a recent directory of legal advocates produced by the American Bar Association's Commission on the Mentally Disabled listed 23 national organizations providing rights protection and advocacy services for the mentally ill ("Directory of Legal Advocates," 1980). The National Directory of Mental Health Advocacy Programs (Greenberg, Freddolino, & Lecklitner, 1982) includes 102 legal programs. A number of legal programs designed to protect the rights of mental patients have also been codified into law in several states (e.g., New Jersey, New York, O h i o ) .

Clearly now the role of advocate has extended beyond the narrow confines of the legal profession. The above-mentioned directory of advocacy programs includes a total of 417 programs including ex-patient groups, parent and family groups, mental health associations, and patient rights advocacy programs operating within departments of mental health as well as legal programs. 26

5. The general public

Yet another stakeholder in the debate over patients' rights is the general public. As Modlin (1974) has noted:

Mental health personnel are obligated to ensure that a hospitalized patient's civil, personal, and treatment rights receive first priority. At the same time, we must be aware that his are not the only rights involved....Rights of the neighborhood or community in which he lives also invite some consideration. (p. 474)

Community members often regard those who have histories of psychiatric hospitalization as dangerous and a threat to public safety. The question of the dangerousness of former psychiatric patients has received substantial attention by researchers. While earlier studies tended to discount these fears as unfounded, more recent research has shown that former psychiatric patients do have a higher arrest rate than the general population (Rabkin, 1979a; Sosowsky, 1978; Steadman, Cocozza and Melick, 1978; Zitrin, Hardesty, Burdoch, & Drossman, 1976).

In addition to its fears of psychiatric patients, the public also is frequently repelled by the strange appear­ ance and behavior of some former patients such as "shopping-bag ladies." As a result, many communities have attempted to exclude such persons from their midst (Aviram & Segal, 1973). For example, restrictive zoning ordinances have been established to limit the areas of the community where former patients may live by denying the establishment of group homes in certain neighborhoods (Tuoni, 1981). In this manner the general public has sought to exercise its rights at the expense of those of the mentally ill.

Clearly, the interests and the viewpoints of the major stake­ holder groups just described are not always consistent with one another. Depending upon the specific rights issue or question, various combinations of these groups may find them­ selves in accord or in sharp disagreement. To help clarify the dynamics of the relationships among stakeholder perspec­ tives, the groups will be compared on several general dimen­ sions related to patients' right policy. 27

Wald and Friedman (1978) have identified two distinct approaches to patients' rights advocacy: the civil liber­ tarian advocate and the service-oriented advocate. Those adopting the civil libertarian perspective tend to view the mentally ill as a disadvantaged minority group, much like other socially oppressed groups such as blacks, women, and gays. Their concern is that mental patients, like these other groups, have been unfairly denied their constitutional rights based solely, and unfairly, on their particular status. These advocates are primarily concerned about issues such as freedom, autonomy, dignity, equity, etc. Service-oriented advocates, on the other hand, tend to view mental patients more as consumers of a needed service. For these advocates, such issues as quality and availability of care are paramount.

Speaking in very general terms, patients' rights attorneys and those patients associated with the mental patients' liber­ ation movement tend to adopt a civil libertarian perspective, while parents/family members and mental health professionals typically are more supportive of the service-oriented posi­ tion. For its part, most of the general public is in con­ flict with both positions. They oppose those patients' rights which would allow for increased freedom from involun­ tary hospitalization, fearing increased crime rates and low property values. They also frequently reject attempts to improve services because of the tax burden imposed by such actions.

Historically, much of the debate about patients' rights has focused on the divergence of perspectives held by attorneys and mental health professionals. While these two groups have worked reasonably well together on such issues as the right to treatment and, to some degree, the right to the least restrictive alternative, they have been sharply divided on matters related to certain due process provisions and especially the right to refuse treatment. As previously mentioned, legal advocates have criticized the mental health establishment, particularly psychiatrists, for presuming to act in the "best interests" of their patients. They argue, as do critics of involuntary psychiatric treatment such as Szasz (1974), Laing (1967), and Coleman (1979) that the medical model of mental illness restricts the freedom of those so labelled in order to force upon them a variety of dubious treatments.

For their part, psychiatrists have criticized legal advocates for emphasizing the legal rights of mental patients at the 28

expense of their psychiatric needs. Expressing this opinion, psychiatrist Alan Stone (1979) has written:

Legal advocates for the mentally ill have not been willing to consider seriously the needs of the mentally ill and to formulate those needs as legal rights. Instead they have done the reverse. They have treated rights as if they constituted the needs of the mentally ill. (p. 820)

In addition to conflicts created by philosophic and pro­ fessional differences, stakeholders may collide simply because the rights of one group impinge adversely upon the rights of another. By extending greater rights to mental patients, for example, the courts and the legislators may thereby restrict the rights of another group. In this sense, society, through its decisionmakers, must play a constant balancing act in an effort to see that the rights and needs of all groups are equally and fairly distributed.

During the past two decades, changes in involuntary commit­ ment criteria have replaced the "in need of treatment" standard with a judicial and psychiatric determination of "dangerousness." These laws have, in effect, served to protect the liberty interests of those persons facing invol­ untary hospitalization by making it more difficult to commit a person to a psychiatric hospital. However, as Bloom and Asher (19 82) have commented:

These new statutes, while designed to protect the rights of potential patients, may instead have the effect of violating the rights of families and other individuals in the community who come into contact with these potential patients. (p. 30)

Thus, it can be seen that attempts to promote the rights of mental patients have raised a host of complex issues and involved a diverse set of stakeholders. In challenging the prevailing modes of psychiatric treatment, theory, and author­ ity, the mental patients' rights movement has posed such fundamental questions as the following: What is the nature of mental illness? What is the proper role of the mental health professional vis-a-vis the competing demands of the patient, the family, and society? How can a balance of psychiatric "needs" and patients' "rights" be achieved? In a just society, how are the rights of one group to be weighed against the rights of another? These are some of the core questions to be answered in the dynamic interplay between the 29

various factions involved in or affected by the development of patients' rights.

D. Patient Rights in the Community

1. Deinstitutionalization

As a result of a number of factors, state psychiatric hospitals have been significantly depopulated in the past quarter of a century. Deinstitutionalization has resulted in a number of new problems for former psychiatric patients who reside in the community, especially those who are regarded as "chronically mentally ill." These new problems have demanded a shift in focus for the patients' rights movement and a need to evaluate and perhaps reformulate its major strategies, such as litigation. These issues will form the basis for discussion in this last section of the review.

The official policy and goals of deinstitutionalization were first spelled out by the Joint Commission on Mental Illness and Health (1961):

The objective of modern treatment of persons with major mental illness is to enable the patient to maintain himself in the community in a normal manner. To do so, it is necessary (1) to save the patient from the debilitating effects of institutionalization as much as possible, (2) if the patient requires hospi­ talization, to return him to home and community life as soon as possible, and (3) thereafter to maintain him in the community as long as pos­ sible. Therefore, aftercare and rehabilitation are essential parts of all service to mental patients. (p. xvii)

Several years later, President Kennedy launched the Community Mental Health Centers movement with his "bold new approach" message to Congress.

Commentators such as Rose (1979) and Scull (1977), however, have noted that the depopulation of public psychiatric hospitals had preceded both of these proclamations. The resident population of state and county psychiatric hospitals reached its zenith at 558,992 in 1955, when approximately 50% of the psychiatric patient care episodes resulted in hospitalization (Pollack & Taube, 1975), and has declined 30

steadily since that time. By 1977, the average daily census at public psychiatric hospitals had dropped to approximately 184,000 (Witkin, 1981).

A number of factors have been suggested as contributing to deinstitutionalization. Certainly the massive criticism hurled at institutions promoted the seeking of community- based alternatives. Bachrach (1979), for example, has written that the consensus of professional and public opinion was that, "the provision of services on any basis other than institutionalization is superior to a hospital experience" (p. 5). In addition to this humanitarian rationale, several other authors have suggested that deinstitutionalization was undertaken to reduce the escalating costs associated with inpatient care (Bassuk & Gerson, 1978; Pepper & Ryglewicz, 1982; Scull, 1977). A third factor often cited as respon­ sible for deinstitutionalization is the advent of psycho­ tropic drugs which made it possible to reduce the symptoms commonly associated with psychotic behavior and thus make community mental health a practical policy (Becker & Schulberg, 1976; Rapson, 1980: Talbott, 1979). The Joint Commission on Mental Illness and Health (1961) went so far as to conclude that:

Drugs have revolutionized the management of psychotic patients in American mental hospi­ tals, and probably deserve primary credit for reversal of the upward spiral of the State hospital inpatient load. (p. 39)

Yet another factor to which the increased emphasis on commun­ ity care is often attributed is the influence of patients' rights decisions. The Group for the Advancement of Psychi­ atry (1978), for example, has suggested that the right-to- treatment movement required hospitals to provide a standard of care beyond their resources, forcing them to release many of their patients. Similarly, court cases providing for a right to adequate treatment in the least restrictive alter­ native setting have mandated the development of suitable community-based alternatives to psychiatric hospitalization (Brewster v. Dukakis, 1982; Dixon v. Weinberger, 1975).

2. The failures of deinstutionalization

Whatever its root causes may be, the practice of deinstitu­ tionalization has been the target of harsh and frequent criti­ cism in recent years. Much of this criticism has focused on the lack of coordinated and comprehensive services for former hospital patients now in the community, a situation bordering 31

on abandonment of many mentally ill persons (Bachrach, 1983; Borus, 1981; Etzioni, 1975; Lamb, 1981b).

The recently elected President of the American Psychiatric Association has conceded that:

our mental health delivery system is not a system but a nonsystem.... our services are totally fragmented, with different levels of government responsible for similar kinds of planning, funding, implementation, and moni­ toring of services; with all levels of govern­ ment (federal, state, and local) both con­ tracting for services and directly providing their own competing services; and with no one seeming to be in charge. (Talbott, 1979, p. 623)

The result for many mentally ill persons has been nothing short of disastrous. According to Bassuk and Gerson (1978):

Many of them drift to substandard inner city housing that is overcrowded, unsafe, dirty, and isolated. Often they come together to form a new kind of ghetto sub-population, a captive market for unscrupulous landlords. Their appearance and their sometimes bizarre behavior may disturb the neighborhood and they are usually shunned and frequently feared. Even patients who live in recognized residential centers such as halfway houses have been found to have inadequate medical and psychiatric care or none at all, minimal activities and little interaction with people outside the facility. For the significant proportion of ex-patients who return to live with their own families, physical conditions may be relatively good, but severe stresses can be placed on both the family and the patient, particularly in the absence of close follow-up treatment; there may be long-term effects, especially on children in the household. Finally, whatever the living arrangement for the discharged patient may be, he is almost sure to find a shortage of voca­ tional rehabilitation, sheltered employment or job referrals, transportation and recreation. (p. 51) 32

Similarly, a report evaluating the government's role in dein­ stitutionalization issued by the Comptroller General found that many returning psychiatric patients were "placed in crowded, substandard facilities in unsafe neighborhoods, or facilities that could not or did not provide needed services or assurance that they would receive needed services" (Comptroller General, 1977, p. 8). This report called upon the 11 major federal departments and 135 programs affecting the mentally disabled to develop plans for improving the coordination and integration of services to former hospital residents.

For many former patients, the lack of adequate mental health and supportive services has relegated them to the ranks of the homeless. The relationship between poorly conceived deinstitutionalization policies and homelessness has been highlighted by a number of authors. Jones (1983) has written: "foremost among the causes of homelessness is deinstitutionalization" (p. 808). Pepper and Ryglewicz (1982) note that a high proportion of the homeless in major cities are mentally ill and suggest that the most visible victims of the lack of community programs are the "older deinstitutionalized patients who are wandering about without adequate places to live or programs of activity to occupy their time" (p. 389). Following their study of the homeless in New York City, Baxter and Hopper (1982) concluded that this population has significantly expanded in size in the past several years and is increasingly composed of the seriously mentally ill. Similarly, Reich and Siegel (1978) found that over 50% of the Bowery population had a history of mental illness. Reviewing reports such as these, Congresswoman Barbara Mikulski was led to denounce the abandonment of the mentally ill under the guise of deinstitutionalization, noting that it did little more than "...to give you a quart jar of valium and a shopping bag and send you out on the streets" (as quoted in Rapson, 1980, p. 197).

Those patients who do find shelter in the community often end up in nursing homes or boarding homes which are in many ways indistinguishable from the massive hospitals from which they have been discharged. Goldman, Adams and Taube (1983), for instance, claim that nursing homes have "become a substitute for the long-term custodial care function of the state and county hospital" (p. 132). Most nursing homes provide little nursing or medical care, insufficient or no psychiatric care and few opportunities for rehabilitation and recreation (Goplerud, 1979). Too often boarding home residents become the victims of crime and violence. For example, one recent 33

survey of board and care residents in a major California city found that one-third of them had been victims of robbery and assault during the previous year (Lehman & Linn, 1984). Many nursing home patients receive more medication and become less active over time than their hospitalized counterparts (Schmidt, Reinhardt, Kane, & Olsen, 1977). Writing from the perspective of a former hospital patient and a board and care home resident, Priscilla Allen (1976) has stated that "many patients 'living in the community' can hardly be said to be living in the community at all; that community facilities such as board and care homes are often as effective, if not more effective, in institutionalizing patients as are state hospitals" (p. 148-149). Another ex-patient, Janet Gotkin (1980), has stated, "The community mental health movement has moved people out of institutions and put them in mini-institutions— halfway houses, group homes, adult homes, single room occupancy (SRO) hotels— that are as harmful and degrading as any large hospital has ever been" (p. 4).

Because of the institutional quality of many community-based residential programs for the mentally ill, a number of authors have suggested that the term "reinstitutionalization" be substituted for the term "deinstitutionalization" as a more accurate description of this practice (Bassuk & Gerson, 1978; Goldman, Adams, & Taube, 198 3; Rapson, 1980). Lamenting on this situation, Bradley (1979) has written:

The possibility of a better lot for mentally disabled persons outside institutions appears to have receded as evidence of the more un­ attractive realities of community-based care piles up.... Distinctions between the oppres­ sions of the institution and the new back wards of the community become difficult to make. (p. 104)

3. Discrimination in the community

In addition to the inadequacy of community care systems, many former psychiatric patients find themselves victims of a wide array of discriminatory policies and practices. Lawyers Ennis and Emery (1978) in their review of the rights of mental patients have attested to the breadth of such discrimination.

There is enormous discrimination in the com­ munity against persons who have been hospital­ ized, or even treated on an outpatient basis, for mental disorder. Many states have laws 34

that prohibit ex-patients from voting, driving, holding office, serving on juries, or pursuing specific professions. Cities, counties, and towns limit where ex-patients can live by zoning laws. Employers discriminate against ex-patients in hiring or promotion. The govern­ ment routinely denies security clearances for ex-patients, thus foreclosing various job oppor­ tunities. Colleges and graduate schools deny admission to ex-patients. Many landlords will not rent to ex-patients.... In terms of the number of people affected, the rights of people in the community is a more important area than the rights of people who are in hospitals or facing hospitalization. (p. 170)

Following its extensive review of the mental health care needs and the services available to this country's citizens, the President's Commission on Mental Health (PCMH) issued a four-volume report of its findings and recommendations (PCMH, 1978). Prominent among the findings of the Commission was a recognition of the discrimination experienced by many former mental hospital patients upon their return to the community. In particular, the Commission noted that "Laws, regulations, and practices deprive mentally disabled people of equal entitlement and choice in securing Federal benefits, housing, jobs, education, health and other services" (p. 42).

The basis for much of this discrimination appears to lie in the public's attitudes toward those who have histories of mental illness. In her review of the literature related to public attitudes about mental illness, Rabkin (1980) has written:

The attitudes of others toward mental illness influence the experiences of those who bear the label. Historically, and even at present, the status of mental patients often leads to dimin­ ished respect and friendliness on the part of other people. Such behavior exacerbates what­ ever social difficulties derive from the dis­ order itself. (p. 15)

Underscoring this point is the testimony of Joan Houghton (1980), herself a recovered patient:

Part of the recovery process from mental ill­ ness involves overcoming a problem of even greater magnitude than the illness itself: the 35

negative feelings and attitudes of others to­ ward the mentally ill. For lack of a better work, we call this problem "stigma." For me, the stigma of mental illness was as devastating as the experience of hospitalization. (p. 7)

Negative public attitudes toward the mentally ill have fostered widespread discrimination and resulted in their exclusion from certain localities. Research has shown that employers are less likely to hire those with a history of mental illness (Farina & Felner, 1973). Discrimination continues despite the fact that research has shown that the so-called "mentally restored" person is equal or superior to co-workers with respect to motivation to work, quality of work, attendance, punctuality and job tenure (Long & Runck, 1983). Fearing a decline in property values and the threat of violence, many communities have passed zoning ordinances to restrict the parts of the city where the mentally ill may live in board and care homes and other types of community residential facilities for small groups (Aviram & Segal, 1973; Cupaiuolo, 1977; Tuoni, 1981), a situation which has resulted in the establishment of "psychiatric ghettos" in many major cities. There discharged patients congregate in crowded, rundown and unsanitary welfare hotels where they are frequently victimized by thieves and criminals.

One of the consequences of community exclusion and the lack of supportive services for the mentally ill has been that many ex-patients are forced to return to public psychiatric hospitals. Thus, while the roles of such institutions have declined greatly, rates of admission and readmission have risen dramatically (Ozarin, Redick, & Taube, 1976; Thompson, Bass, & Witkin, 1982). Brown (1979), for example, has noted that admission rates have more than doubled between 1955 and 1975 while the rate of readmissions has increased by 54%. Several recent studies (Bonovitz & Bonovitz, 1981; Whitmer, 1980) also suggest that many former psychiatric hospital patients are being diverted into the criminal justice system because they do not fit the criteria for involuntary hospitalization. Because of higher admission and readmission rates and increased contact with the criminal justice system, at times resulting in incarceration, the liberty interests of the mentally ill appear to remain in jeopardy.

4. The chronically mentally ill

Perhaps the population most vulnerable to neglect and discrim­ ination in the community is that class of people typically referred to as "chronically mentally ill." In general, this 36

term has recently been applied to "those individuals who are, have been or might have been, but for the deinstitutional­ ization movement on the rolls of long-term mental institu­ tions, especially state hospitals" (Bachrach, 1979, p. 11). Minkoff (1978) has attempted to distinguish between the chronically mentally ill, the chronically mentally disabled, and the chronic mental patient. According to his formula­ tion, the chronically mentally ill are best defined according to diagnosis (e.g., schizophrenia, manic-depressive disease, organic brain syndromes, etc.). The chronically mentally disabled represent a subpopulation of this group character­ ized by partial or total impairment of instrumental role performance, typically vocational or homemaking skills. The third of these three overlapping populations, the chronic mental patient, suffers from the effects of a long history of institutionalization. The Department of Health and Human Services (1980) established a similar tripartite definitional approach to the population based on diagnosis, level of disability, and duration of disability. In its report, Toward a National Plan for the Chronically Mentally 111, the Department concluded that the chronically mentally ill are those persons "who suffer severe and persistent mental emo­ tional disorders that disrupt their functional capacities in relation to such primary aspects of daily life as self-care, interpersonal relationships, and work or schooling, and necessitate prolonged 24-hour residential treatment services and social support" (DHHS, 1980, p. 2). The report also stated that the chief distinguishing characteristic of this population is not a history of hospitalization, but rather prolonged functional disability caused or aggravated by severe mental disorder.

Although the precise definition, location, and enumeration of this population remains somewhat nebulous, it has recently been suggested that the total chronically mentally ill popula­ tion of this nation is between 1.7 million and 2.4 million, with slightly less than one million of these persons residing in institutional settings (i.e., mental health facilities and nursing homes) and the remainder living in the community (Goldman, Gattozzi, & Taube, 1981). Minkoff (1978), defining the population to consist of schizophrenics, manic depres- sives and the mentally ill elderly, estimates that between 2.3 million and 3.15 million American citizens can be con­ sidered chronically mentally ill and suggests that at any one time most of these persons are in the community. A third estimate comes from the Department of Health and Human Services (1980) which proposes that there are approximately 900,000 institutionalized chronic mental patients with approx­ imately 750,000 of those residing in nursing homes. Another 37

800,000 are estimated to live in the community. Most ob­ servers seem to agree that the large majority of chronically mentally ill persons in the community reside in nursing or boarding homes, with only about 25% living either in their own homes or with family members (Talbott, 1980).

The desperate living situation confronting many of the chronically mentally ill in the community has been succinctly described by Bassuk and Gerson (1978): "The resident popula­ tion of large mental hospitals has been reduced by two-thirds in 20 years, but chronic patients are being discharged to a lonely existence in hostile communities without adequate care." (p. 46). This finding was echoed by the President's Commission on Mental Health (PCMH, 1978) which cited an inadequacy of comprehensive and coordinated mental health services and outlined problems relating to housing, employ­ ment, public entitlements and patient rights for this popu­ lation. The Commission was led to conclude, "Thousands who are so disabled receive deplorably inadequate assistance" (PCMH, 1978, p. vii). The report went on to elaborate:

Time and time again we have learned from testi­ mony, from inquiries, and from the reports of special task panels— of people with chronic mental disabilities who have been released from hospitals but who do not have the basic neces­ sities of life. They lack adequate food, cloth­ ing or shelter. We have heard of woefully inadequate follow-up mental health and general medical care. And we have seen evidence that half the people released from large mental hospitals are being readmitted within a year of discharge. While not every individual can be treated within the community, many of the read­ missions to state hospitals could have been avoided if comprehensive assistance had existed within communities.

Because sufficient services and appropriate financial assistance are not available, many people with chronic mental illness have no choice but to live in poorly maintained boarding homes or cheap occupancy hotels and rooming houses....

These needs cannot be met unless we make basic changes in public policies and programs, par­ ticularly in how we plan, coordinate and finance mental health care. There must be a 38

much clearer delineation of responsibility and accountability for the care delivered to this population. (PCMH, 1978, p. 5)

A similar description of the plight of the chronically mentally ill in the community was offered by the Department of Health and Human Servic is:

[these] highly depende t and vulnerable people live on the margin of , ociety, shuffled into uncertain shelter arrangements, ignored by neighbors. Although most of these persons live in communities rich in resources and oppor­ tunities, they do not fit the service delivery conventions of the systems set up to serve other needy citizens. Their behavior and appearance, their poverty and life histories evoke such deep-seated fears that, although they live in the midst of the community, they are largely "invisible" to residents of the community at large. (DHHS, 1980, p. ES-1)

Although clearly a population in need of both community and professional support, the chronically mentally ill have been largely rejected by both groups. Rabkin (1980) has noted that the chronically mentally ill suffer the greatest stigma and elicit the most negative reactions of fear, aversion and avoidance from community members. A number of mental health professionals have also come forward in recent years to chastise their peers for their reluctance to offer services to this most needy of populations. Writing from his perspec­ tive as a psychiatrist, Lamb (1979) has stated that:

our own professional and personal needs, our distaste for dependency and for the lower classes, and our joining the larger society in "closing ranks"...[has] caused us to neglect, first in the state hospital and now in the com­ munity, the long-term mentally ill. (p. 206)

Others have pointed out that community mental health centers tend to exclude chronic patients in favor of patients with a more favorable prognosis (Group for the Advancement of Psychiatry, 1978; Goldman, Adams, & Taube, 1983; Nielsen, Stein, Talbott, Lamb, Osser, & Glazer, 1981). As a result, according to Talbott (1981), "The entire mental health system now seems designed to care for the acutely ill" (p. 447). 39

Without the support of either mental health professionals or their own community, the chronically mentally ill have often found themselves without assistance in their efforts to seek needed services. In particular, as government underwriting of social services has diminished, the chronically mentally ill have had to compete with other minority and handicapped groups for public assistance. As Bachrach (1983) has ob­ served, "a scarcity of resources has often placed chronic patients in the position of having to compete for services— a task for which they are generally ill suited" (p. 105). Already the victims of inadequate community services, dis­ crimination in employment and housing, and rejection by their home communities, the chronically mentally ill in the commun­ ity may face an even bleaker future without support and representation.

5. Developing rights in the community

It seems clear that the need to assure and advance the legal, clinical and human rights of persons discharged from public psychiatric hospitals, especially the chronically mentally ill, is as great, if not greater, than it is for the resi­ dents of such institutions. The imperative nature of the shift in focus from institutional issues to community issues has been recognized by the Task Panel on Legal and Ethical Issues of the President's Commission on Mental Health which proposed that "as our country moves increasingly from insti­ tutional to community-based care, it will be important for advocacy efforts to shift from exposing abuses and deficien­ cies in institutions to protecting mentally handicapped persons from a wide range of deprivations of basic civil rights and privileges that they too often experience in the community" (PCMH, 1978, p. 1364).

Patients' rights advocates have also recognized the need to transfer their attention increasingly to community rights issues. Attorneys Popiel and Garwin (1980), for example, have suggested that although advocates have been reluctant to leave the familiarity of institutional settings, the reali­ ties of deinstitutionalization demand their attention. They conclude by proposing that, "Advocacy systems of the future must emphasize the community.... The institutionalized must not be forgotten; but increased attention must be given to those on the outside, especially those who are at risk of institutionalization" (p. 61).

In addition to promoting such objectives as autonomy, equal­ ity, and needed services and entitlements, such a shift in focus may also have valuable secondary effects. Perl in 40

(1980), for example, has suggested that the expansion and protection of rights in the community for the mentally handi­ capped is, in fact, "the one area in which further rights development will realistically be one giant step on the rocky and often Sisyphus-like road toward 'normalization' of former patients, as well as a first step towards the meaningful erad­ ication of the stigma of the label of 'psychiatric patient'" [author's emphasis] (p. 33). Peele and Palmer (1980) have discussed the relationship between patients' rights and patient chronicity and contend that the granting of rights can decrease chronicity. These writers also caution, how­ ever, that some rights may interfere with adequate treatment and thus promote chronicity.

A recent major class action litigation brought on behalf of chronically mentally ill persons in the community has been hailed as a major rights victory for this population. A ruling in the case of Mental Health Association in Minnesota v. Schweiker (1982) temporarily halted the use of certain eligibility standards applied to the chronically mentally ill for federal Social Security Disability Insurance and Supplemental Security Income. This case has resulted in the revision or elimination of policies used to remove many such mentally ill persons from the disability rolls.

Although not backed by the authority of law, other rights have been proposed for the chronically mentally ill in the community. For example, Priscilla Allen, herself a boarding home resident and a veteran of two years in a California state hospital, has proposed a bill of rights for such persons (Allen, 1976). Her listing of proposed rights includes, for instance, the right to voluntary treatment and/or services, the right to refuse treatment and/or services, the right to confidentiality of personal records, the right to utilize fully all economic rights and benefits, the right to a humane psychological and physical environment, the right to maximum freedom, mobility and independence, and the right to information.

6. Looking for new strategies

While there is general agreement that much more needs to be done to defend and promote the rights of chronic patients in the community, there is little consensus about the preferred methods or strategies to attain this objective. The shift in emphasis to community issues makes the selection and use of strategies a great deal more complicated. As Scallet (1980b) has written: 41

Community legal issues are very different from those in institutions. The obvious and massive deprivation of liberty that triggers many con­ stitutional concerns is not present, at least not in the same way. While the institutional issues often involved stopping some egregious abuse, community issues often require affirm­ ative establishment of services. The range of issues is infinite and the potential defendants are multiple. Housing, zoning, voting, child custody, employment, public entitlements, and many other issues arise, or become more immed­ iate only in the community. The mental health institution or system is no longer the only responsible party. (p. 615)

Past efforts to gain new rights for the mentally ill have relied largely on the use of class action and test-case litigation. While this strategy has had major impact, it has also been shown to be of limited value. Several observers, for example, have discussed the problem of enforcement of these decisions once the court has ruled (Clark & Bradley, 1976; Lottman, 1976). Speaking to this issue Menninger (1979) has suggested that we may have reached the limits of the law in this area, pointing out that:

Many of the major lawsuits, including Wyatt, continue to drag on. Such enforcement methods as special masters, human rights committees and review panels have failed, in large part, to bring about compliance with the decrees. State legislatures have not significantly increased the amount of money allotted to mental health services, despite court orders to improve those services. Even where lawsuits have resulted in new commitment laws and a codified bill of patients rights, the change is resisted. (p. 100)

As attorney Leslie Scallet has remarked, "Even the strongest right or court decree does not enforce itself" (Scallet, 1980a, p. 324).

Times have also changed since some of the early court victories, leaving many patients' rights advocates skeptical of the use of litigation in today's more cost-conscious and politically conservative environment. As Paul Friedman, former managing attorney of the Mental Health Law Project, 42

has observed, "in the current climate legal advocates for mentally handicapped persons should proceed very cautiously with constitutional test case litigation" (Friedman, 1981, p. 43). In light of the limitations of litigation, a number of authors (e.g., Friedman, 1979; Scallet, 1980a) have called for the development and utilization of alternative rights protection and advocacy strategies for the mentally ill.

The debate regarding the proper parameters of strategies for protecting the rights of mental patients given the changing social and political climate has already begun. Some, such as Brown (1982), argue for a more activist and confronta­ tional approach while others (Eth, Levine, & Lyon-Levine, 1984; Paschall and Eichler, 1982) call for greater cooperation and collaboration between the various stakeholders.

The patients' rights movement thus stands poised and ques­ tioning at a major crossroads. The momentum of past victories on behalf of hospitalized patients, although surrounded by controversy, has propelled the movement through the 1970's. Now it seems clear that attention must be turned to those mentally ill persons, especially the chronically mentally ill, residing in the community who too often suffer the indignities, abuse and discrimination of second class citizens. Complex new issues and changing times dictate the search for innovative strategies to accomplish this difficult task. The development and application of these strategies on behalf of one of our most neglected and forgotten classes of citizens may be the most worthy and challenging test yet faced by this movement. II. Major Study Objectives

A. Study Rationale

The preceding review of the literature has made it clear that while much has been done to protect and advance the rights of mental patients, there are tremendous challenges ahead. In particular, the chronically mentally ill in the community continue to be plagued by a variety of problems related to equal employment and housing opportunities, access to needed public entitlements and mental health services and a general orientation to them as second-class citizens. The present study has been designed to focus its attention toward the rights of the chronically mentally ill in the community.

Also, as suggested by the literature review, it is apparent that it may be necessary for those dedicated to patient rights to consider alternative strategies to those that have been used in the past to promote rights for the mentally ill who reside within public institutions. As an example, a number of prominent advocates have questionned a continued reliance on class action litigation as a primary rights strategy. Because the problems faced by patients in the community are by their very nature different than those faced by hospitalized patients, new strategies are needed. The primary purpose of this study is to identify and evaluate potentially useful strategies for advancing the rights of the chronically mentally ill in the community.

In considering possible strategies it would seem most fruitful to involve representatives of stakeholder groups who affect and/or are affected by developments in this area. In this manner the perspectives of the groups can be considered with particular attention to areas of agreement and disagreement. The following six stakeholder groups have been included: current and former mental health care recipients, parents and other family members of mental health care recipients, mental health and social service providers and professionals, patient rights advocates, community representatives, and academics and researchers in areas

43 44

relevant to this study. Based on a review of the literature, these groups appear to play the most prominent roles in decisions regarding the rights of the mentally ill.

Two groups in particular— patients and parents— will serve as the point of focus of this study. The perspectives of these two groups will be given special consideration for several reasons. First, in one sense, these two groups are both consumers of mental health services. While patients are the direct recipients of mental health care, the daily lives of parents are inextricably tied to the circumstances confronted by their mentally ill relatives. Parents too often serve as the primary caregiver and caretaker of their mentally ill sons and daughters. Because these two groups must bear the burden, or alternatively the opportunities, presented by changes in patient rights, the case can be made that their viewpoints deserve special attention. Secondly, little or no research has been done to assess the attitudes of patients and parents toward patient rights issues. This study wil represent one of the first attempts to examine their perspectives within a research framework. In addition, while previous battles concerning patient rights have been waged most vocally by legal advocates and mental health professionals, it seems at this time that increasingly important roles are being played by recipients and parents. As patients and parents become more active and more powerful, it is becoming necessary to take a closer look at their needs and demands. Finally, as emerging groups, patients and parents may offer strategies that have not been considered by the more traditional decisionmakers. Since this study is attempting to generate fresh approaches to rights enhance­ ment, it would seem prudent to give special consideration to the ideas of parents and patients.

Public policy decisions are clearly not made in a vacuum. They must reflect the ever-changing context in which they are cast. Failure to carefully consider the full context can lead to unproductive or even counter-productive action. For example, Wenk (1979) has suggested that much of public policy and action are ineffective because they seek short-term solutions without anticipating longer-range consequences. Similarly, Shadish (1984) has outlined a variety of important considerations to include when conducting research of the nature undertaken here. He has suggested that "policy research must systematically attend to the strains in existing systems, the solutions that might reduce strain, and the implementability of those solutions" (p. 732). Thus, he has directed policy researchers to identify the major problems in the system and to propose feasible strategies for 45

improving the system. This is an approach which has been adopted in this study.

As the pace of social change accelerates, it is becoming increasingly important to consider the future context within which decisions and actions will be made. In order to anticipate potentially important issues which might affect the rights of the chronically mentally ill in the community, this study has adopted a future perspective. For example, an effort has been made to forecast a broad range of developments of the next 20 years that might affect the rights of the study target population. Additionally, in evaluating the relative merit of potential rights strategies, an effort has been made to anticipate the likely feasibility of the strategy as well as its potential impact on the rights of the chronically mentally ill and others.

Finally, in order to better understand some of the dynamics involved in determining the rights afforded the mentally ill, this study has attempted to uncover some of the underlying rationale or reasoning behind the positions taken by the various stakeholder groups. As an example, why might some groups prefer some strategies while other groups endorse a different approach? Why do some groups believe a certain issue is of paramount importance while others give it less prominence?

In total, the rationale for this study presumes that future policies and programs (here referred to collectively as strategies) designed to enhance the rights of the chronically mentally ill in the community will result from major developments and rights issues which serve as the stimuli for such actions and the viewpoints or attitudes of the major stakeholder groups with respect to such issues and developments. In particular, it has been suggested that particular attention to the view of recipients and parents is warranted at this time. In turn, the ultimate value of the strategies must be evaluated in light of such considerations as the feasibility of their implementation and their likely impact on the chronically mentally ill and others in the community. This study assumes that each of these elements, as well as their inter-relationships, is important in identifying and choosing among various strategic options.

With this rationale, the study was designed to look at four major elements of rights development for the chronically mentally ill in the community: 46

1. Major rights issues of importance to the adult chronically mentally ill in the community;

2. Forecasts of major developments that may affect the rights of this population;

3. Policy, program and action strategies designed to advance or protect such rights; and

4. Portraits of the perspectives of the key stakeholder groups, particularly recipients and parents, with respect to each of these study aspects.

B. Study Objectives

Following are the major study objectives associated with each of these study dimensions:

Rights Issues

The first study objective was to identify and prioritize those rights issues that seem to be of most importance to the adult chronically mentally ill in the community. The study has been designed to accommodate a wide variety of rights issues, including those related to civil liberties, mental health needs, and more basic human needs. In addition to identifying these rights issues, the study has sought to determine the relative importance of the issues for the study target population, at least as perceived by the various stakeholder groups. As part of the investigation of rights issues the study has also attempted to determine the logical structure of this group of rights issues. That is, into what categories or types do they appear to cluster?

Forecasts

The second study objective was to identify and evaluate a wide range of potential developments of the next 20 years that might either positively or negatively affect the rights of the adult chronically mentally ill in the community. As part of this broad objective the study has attempted to generate a wide range of factors including knowledge, attitudes, policy and practice that might affect such rights. Since the study has adopted a futures perspective, an effort has been made to forecast or anticipate changes in these areas that might occur over the next 20 years. In addition to forecasting such changes, the study has been designed to 47

assess the likely impact of the forecasted developments on the target population. For example, presuming that certain forecasts were to come to pass, what might be the expected consequences for the chronically mentally ill? Finally, the study has attempted to identify the logical structure of the forecasted developments (i.e. the categories into which they appear to cluster.)

Strategies

The third objective of this study was to develop and evaluate an array of strategic options for enhancing the rights of the adult chronically mentally ill in the community. These strategies were intended to be responsive to projected developments of the next 20 years. The strategies were also meant to be as innovative and creative as possible and yet have a reasonable degree of feasibility. In considering these strategies, the study sought to identify those proposals that would offer the greatest gain for the chronically mentally ill while minimizing any negative impact on other members of the community. Again, the strategies were examined to determine their logical structure. This analysis was undertaken in order to determine possible underlying issues associated with the various strategy preferences.

Perspectives of Major Stakeholder Groups

The fourth major study objective was to provide a better understanding of the viewpoints of the various stakeholder groups with respect to the rights of the study target population. In particular, the study has sought to improve our understanding of the perspectives of current and former mental health care recipients and parent and family members as they relate to the matter of patient rights. Thus comparisons and contrasts between the positions of the various groups have been made with respect to each of the study areas previously discussed.

Relationships Among Study Elements

The final objective of this study was to better understand how the various study elements (i.e. rights issues, forecasts, strategy preferences, and stakeholder group membership) relate to one another. For example, does one's forecasts seem to have any relationship to one's preferences regarding strategies? Or alternatively, do those who regard certain rights issues as being of paramount importance tend to endorse certain strategy types? The objective of such an 48

analysis is to offer a more complete understanding of the structure in which patient rights decisions are made.

In addition, analysis of the various responses within a given study element has been undertaken for the purpose of arriving at a more clear interpretation of the data. For example, within the strategy element, does there appear to be any relationship between the feasibility of implementing strategies and the potential impact that such strategies might possess? III. Study Methodology

A. Overview of Study Design

This study represents an attempt to develop a "blueprint" for future policy and practice designed to enhance the rights of the chronically mentally ill in the community. Informed representatives of six key stakeholder groups were queried, using a series of two mailed questionnaires, each of which was addressed to (a) issues and developments that might affect the future rights of the target population and (b) strategies intended to advance and protect such rights.

The study design was conducted in two phases (Table 1). In Phase One of the study, respondents, known as study panelists, were asked to complete an open-ended questionnaire designed to elicit a wide variety of forecasts of developments of the next 20 years that might affect the rights of the chronically mentally ill in the community, as well as strategies, including policies, programs and action proposals designed to respond to the forecasts so as to protect and enhance the fundamental rights of such persons. The purpose of this initial phase was to generate the basic concepts or "raw material" to be used in the study. The major forecasts and strategies derived from Phase One were then distilled into a series of fixed answer option items that comprised the Phase Two questionnaire.

The second phase of the study was intended to evaluate the forecasts and strategies collected in Phase One and determine the relative degree of consensus among the various stake­ holder groups on these study elements. In regard to future developments affecting the rights of the chronically mentally ill in the community, study panelists in Phase Two were asked to rank the relative importance of a series of rights issues (e.g., the availability and quality of mental health ser­ vices, freedom from involuntary hospitalization, equal employ­ ment opportunities) and to forecast possible changes in a variety of areas as well as to assess the impact of such changes on the rights of the study target population.

49 TABLE 1 STUDY DESIGN TOR PATIENT RIGHTS POLICY RESEARCH PROJECT

PHASE OWE PHASE TOD

Concept Development Evaluation/Consensus

FORECASTS Forecasts of Major Developments Rights Issues

■ relative inportance

Forecasts

■ degree of change

" inpact on chronically mentally ill

STRATEGIES Proposals for Rights Enhancement General Strategic Approaches • relative merit

Strategies

• inpact on chronically mentally ill

■ inpact on Others

• feasibility

• merit

ui o 51

Similarly, study panelists were asked to rank the relative merit of alternative approaches to rights protection and advancement (e.g., litigation, public education, coalitions) as well as to evaluate a wide range of brief strategy proposals in regard to their potential impact on both the chronically mentally ill and others in the community, their feasibility, and their overall merit.

B. Futures Methodology

As previously discussed, the rationale for this study rests partly on the concept that, in developing public policy and selecting among alternative strategic options, it is prudent to anticipate the changing context of the problem as well as to consider the potential outcomes, both positive and negative, of the intervention. This is a general approach which was used by Williams and Johnson (1979) in their attempt to forecast the state of mental health in the 21st century. In recognition of the value of "looking ahead" in this fashion, an area of research often termed "futures research" has been developed.

Although a number of future-oriented methodologies exist in various stages of development, the major approach to fore­ casting has been the use of informed or expert opinion. In fact, Helmer (1973) has suggested that the systematic gathering of expert opinion "has become a cornerstone of futures analysis" (p. 5).

One approach that has been used extensively to gather expert opinion systematically for purposes of forecasting is the Delphi method. This technique employs an iterative or sequential interrogation of groups of experts, by either questionnaire or interview. In the first stage of such a process, individuals selected for their expertise regarding the subject in question are typically asked to provide a series of forecasts using a standard Likert-type scale. A distribution of responses, and some measure of central tendency, such as the mean, is then computed for each item. In subsequent phases of the process the same experts, typically referred to as "panelists," are provided with feedback on the distribution of opinions associated with each item from the first study phase. Given this information, panelists are again asked to provide their forecasts of each of the individual items. Thus, armed with information about the group response, individuals may maintain their own opinions (forecasts) or alter them. This process is 52

particularly useful in identifying areas in which there is substantial agreement or consensus regarding a particular issue as well as areas in which there is little agreement or consensus.

Originally developed for military estimation purposes (Dalkey & Helmer, 1963), the Delphi method has been widely adapted to many areas calling for planning and policymaking. Versions of the Delphi method have, for instance, recently been used to examine federal drug abuse policies (Jillson, 1977), public policy implications of advances in biomedical and behavioral research (New Jersey Institute of Technology and Policy Research Incorporated, 1977), and grievance arbitra­ tion issues (Adams, 1980). As with these studies, the present research effort represents an adaptation of the Delphi method. As originally conceived, the second phase of the Delphi process provides panelists with the distribution of responses from the previous phase and asks them to reconsider their personal response in light of the group distribution. In the present adaptation, material from the initial phase of the study was presented to the study panel, not for the purpose of re-evaluating personal responses, but rather as context for responding to additional questions.

The study method does, however, share some of the other characteristics of the Delphi approach. As with the Delphi method, this study has relied heavily on the use of individ­ uals who are well informed in the subject matter to make forecasts of future events. Like the process typically used in the Delphi approach, this study also proceeds in sequen­ tial fashion so that the results of Phase One are used as the "raw material" for the second phase of the study. Finally, as with the Delphi method, group responses are shared with study participants in Phase Two, while individual opinions remain anonymous throughout the study.

The research method also draws upon the more recent work of Dalkey (1980), one of the co-developers of the Delphi method. He has proposed a "flexible analysis structure" for policy studies and has described the common elements or inquiry areas (i.e., values, factors, and capabilities) associated with such studies. These elements are represented in the present study by the dimensions of rights issues, forecasts, and strategies, respectively. The systematic and sequential gathering of informed opinion relative to these issues is also consistent with Dalkey's model for policy studies. 53

C. The Study Panel

The Study Panel served as the major source of data for the study. Represented on the Study Panel were informed and involved individuals from six general stakeholder groups of interest to this study. Classes of stakeholders (i.e., those persons who influence and/or are influenced by policy and program decisions in the area of patients' rights) included:

. current or former direct recipients of mental health services;

. parents and other relatives of mental health care recipients;

. mental health or social service providers and pro­ fessionals;

. patient rights advocates (e.g., attorneys, para­ legals, "internal" advocates);

. community representatives (e.g., civic leaders, busi­ ness persons); and

. academics and researchers from relevant domains (e.g., psychiatry, psychology, sociology).

1. Panel selection

Study panelists were chosen on the basis of their work, knowledge, and reputations in patients' rights and related study areas such as mental health policymaking, the chronically mentally ill, innovative mental health programs, etc. A combination of techniques was used to identify such persons.

First, a number of nationally prominent individuals in this area were asked to suggest persons to participate in each of the six major stakeholder groups. Relevant professional associations (e.g., American Psychiatric Association, American Psychological Association, National Association of Social Workers) and organized advocacy groups (e.g., National Alliance for the Mentally 111, National Mental Health Association, ex-psychiatric inmate groups) were also asked to submit nominations. Further, potential panelists were identified by reviewing the relevant literature in such areas as psychiatry and law. Additionally, several membership lists, such as those of the National Association of State 54

Mental Health Program Directors, the National Association of State Mental Health Attorneys, and the rosters of state and federal government committee members associated with welfare, social services and mental health were utilized. Finally, those who eventually became study panelists were invited to nominate additional persons to serve on the panel.

Through these processes a total of more than 1,000 panel nominations was compiled. All of those nominated were invited to participate as study panelists and a total of 345 persons accepted this invitation by participating in Phase One and/or Phase Two of the study. (See Appendix A for a listing of the study panelists and their organizational affiliations. This listing is somewhat incomplete since several panelists asked that this information not be reported, while others gave permission to use their name but not their organizational affiliation.)

Panelists were asked to identify themselves as belonging principally to one of the six major stakeholder classes, and also to indicate as many of the other stakeholder groups as they felt applied to them. In this way, study panelists were able to self-select themselves to their primary stakeholder group as well as to note secondary affiliations.

The panel nomination process outlined above was repeated for Phase Two of the study in order to identify additional panelists. Also, those persons who were invited to participate in Phase One of the study were again asked to serve as study panelists in Phase Two.

It should be obvious that no claims can be made regarding the representativeness of the Panel as a whole or any of its components, i.e., stakeholder groups. That is, it cannot be asserted that a random sample has been drawn from the populations to which the study might hope to generalize as in a public opinion poll. Delphi studies do not normally rely on random samples, but rather on the selection of experts or persons well informed on the substantive issues of the study (Helmer, 1973). The study simply represents the best thinking and opinions of a group of people chosen for their special knowledge and experience.

2. Panel functions

Study panelists completed either one or both of the mailed questionnaires associated with Phases One and Two of the Delphi exercise. The nature of the survey instruments will be discussed in a later section of this report. 55

D. Phase One Method

1. The instrument

The Phase One questionnaire is included in Appendix B. The instrument has three sections. The first section asks each respondent for identifying information, such as name, address, phone number, and organizational affiliation. Permission to use the panelist's name and organizational affiliation was also requested. Also as part of the requested identifying information, each panelist was asked to indicate the single stakeholder group that best described his/her viewpoint or position by circling one of the six possible categories. In addition, the panelist was invited to check as many of the other categories as might apply. Finally, panelists were given the opportunity to nominate additional study panelists by providing the name, address, phone number, organizational affiliation and stakeholder group of any persons they felt were appropriate.

In the second part of the questionnaire, the forecast sec­ tion, panelists were asked, in an open-ended fashion, to describe one or more developments of the next 20 years that they believed might affect the fundamental rights of the adult "chronically mentally ill" in the community. They were instructed that the developments described could concern any of a variety of rights issues, including those related to civil liberties, mental health needs, or the basic human needs of this population and, furthermore, that the forecast could predict either a positive or negative effect on such rights. Finally, panelists were told that their forecasts could include either major shifts from current knowledge, attitudes, practice and policy, or extensions of current trends.

The final section of the Phase One survey, the strategy section, was intended to elicit brief strategy proposals from the panelists. Panelists were asked, again in an open-ended manner, to describe one or more strategies to advance or protect the rights at issue in their forecast(s). Here the instructions noted that if the panelist's forecast(s) suggested negative effects on the rights of the adult "chronically mentally ill" in the community, the corresponding strategy proposal(s) should be aimed at preventing and/or compensating for such effects. In turn, if their forecast(s) suggested a positive impact on such rights, 56

the related strategy proposal(s) should seek to promote and/or capitalize on such developments. The instructions also suggested that proposals could take any of many forms including, but not limited to, new ideas for public policy, alternative advocacy models, new service programs, fiscal strategies, and public education. Panelists were encouraged to be as creative and innovative as possible, keeping in mind the constraints of feasibility. Finally, the instructions noted that we were particularly interested in strategies that would have maximum impact upon the rights of the adult "chronically mentally ill" in the community, while having as limited negative consequences as possible for others.

2. Conduct of Phase One

Included in the packet with the Phase One survey was a two-page project summary, a letter of invitation, and a postage-paid return envelope. This packet was sent to those persons nominated to participate as study panelists. . As additional panel nominations were received from persons who agreed to participate in the study, additional packets were sent out. In total, 1008 persons were sent invitation packets.

One month later, a follow-up letter was sent to those persons who had not yet responded. Three months after the original mailing, a total of 220 questionnaires had been completed and returned. Further information about the Phase One Study Panel is provided in Table 2. The first column of this table indicates the number of panelists in each stakeholder group, while the second column shows the response rate for each group. The computation of response rate deserves some comment. Each prospective panelist (nominee) was associated with one of the six stakeholder groups at the time panel invitations were mailed. This preliminary assignment was made using the best information available. The response rate for each category thus represents the ratio of the number of persons who indicated each stakeholder group as their primary affiliation to the number of persons invited from each group. The overall response rate to the Phase One survey was 24%. Recipients and parents had the highest response rate among the six groups (37% and 35% respectively) while community representatives had the lowest response rate (8.5%). Finally, the third column of Table 2 shows the percentage of the total panel represented by each of the six groups. Mental health professionals were the largest of the groups (25% of the panel) while community representatives had the fewest number of panelists (8% of the panel). TABLE 2 PHASE ONE STUDY PANELISTS

No. of Rate of % Total Stakeholder Group Panelists Response Panel

Recipients 34 37% 15%

Parents 32 35% 15% Mental Health 56 27% 25% Professionals Rights Advocates 50 30% 23%

Cannunity Representatives 18 8.5% 8%

Academic/Researchers 30 22% 14%

Total Panel 220 2TS iuu%

Note: No. of panelists refers to the number of persons completing the Phase One survey instrument. Rate of response is the percentage of persons participating as a function of the number of people invited to participate from that group. 58

E. Phase Two Method

The major purposes of the second phase of the project were to evaluate the future developments (identified in Phase One) that may affect the rights of "chronically mentally ill" individuals residing in the community and to assess the strategy proposals (derived from Phase One) designed to protect and enhance the rights of this population in light of these projected developments. In addition, the study hoped to examine the relationships between such evaluation and membership in stakeholder groups. That is, do stakeholder groups differ in their assessments of, for example, the preferred strategies?

1. Instrument development

In developing the Phase Two instrument, an effort was made to reflect as well as possible the wide assortment of issues, forecasts and strategies that were elicited in Phase One, particularly those that appeared with the greatest frequency or seemed especially innovative or controversial.

Identification of the more frequently proposed forecasts and strategies was determined by coding each of the responses and placing them in one of several categories. Each of the questionnaires was also reviewed to identify what appeared to be the most salient forecasts and innovative strategy proposals. This material was converted into a set of fixed-answer-option rating and ranking tasks, which constituted the substantive portions of the Phase Two survey instrument.

The Phase Two instrument (Appendix C) consisted of three parts. As with the survey instrument for the first phase of the study, the first part asked respondents for basic identifying information. This segment of the questionnaire was identical to the corresponding part of the Phase One questionnaire with one exception. Respondents were also asked to indicate their professional, degrees (if any) in order to help us understand the composition of each stakeholder group. For example, do those who identified themselves as "mental health or social service providers or professionals" tend to be psychiatrists (M.D.s), psychologists (Ph.D.s), social workers (M.S.W.s), etc?

The identifying information was followed by Section One, "Issues and Forecasts." The first part of this section 59

provided panelists with a list of 10 major rights issues for the adult "chronically mentally ill" in the community (e.g., freedom from involuntary hospitalization, the availability and quality of mental health services, equal employment opportunities) and asked them to rank these issues according to their relative importance for this population during the next 20 years. Space was also provided for panelists to write in additional issues not included on the list, as well as to indicate the rank that such issues would have occupied on the list.

The second part of Section One provided panelists with 40 issues and developments that, based on the results of Phase One, might affect the rights of the study target population during the next 20 years. Panelists were asked for two ratings for each of these 40 items. They were requested to forecast the direction and magnitude of change they expected during the next 20 years with respect to each issue, using a five-point scale ranging from "greatly increase" to "greatly decrease." They were also asked to indicate the probable impact of each forecasted development on the rights of the "chronically mentally ill" in the community, using a fivepoint scale ranging from "very positive impact" to "very negative impact." For both of these ratings an "unable to judge" option was also provided.

Section Two of the survey, "Strategy Proposals," also contained both ranking and rating tasks. In the first part of Section Two panelists were provided with a list of eight general- strategic approaches to rights protection and advancement (e.g., legislation strategies, public education strategies, self-help strategies) and asked to rank order the strategies in terms of their perceived overall merit for advancing and protecting the rights of the chronically mentally ill in the community during the next 20 years. As with the previous ranking task, space was also provided for panelists to write in and rank additional general strategies.

In the second part of Section Two, panelists were given brief descriptions of 48 strategy proposals derived from Phase One of the project. For each of these proposals, panelists were asked to provide four ratings: (1) the probable impact of the strategy on the rights of the study target population during the next 20 years, assuming the strategy were adequately implemented; (2) its probable impact on the rights of other members of the community; (3) the feasibility of adequately implementing the strategy during the next 20 years; and (4) the overall merit of the proposal based on a consideration of the three previous ratings as well as any 60

other factors the panelists felt were important. For the two impact ratings a five-point scale ranging from "very positive" to "very negative" impact was used. For the feasibility and merit ratings a five-point scale ranging from "extremely high" to "extremely low" was employed. For each of the four ratings panelists were also given the option of indicating that they were "unable to judge."

The final page of the survey offered panelists the opportunity to comment on or clarify any of their rating or ranking responses.

2. Conduct of Phase Two

The Phase Two questionnaire, a letter of invitation, a brief project summary, and a postage-paid return envelope were distributed to:

• all those who participated as Phase One panelists (220);

• those persons nominated for Phase One who did not respond (541); and

• a number of additional persons who had been identified as prospective panelists following Phase One (104 ).

One month later, follow-up letters were sent to those who did not respond. Additionally, a number of follow-up telephone calls were made to those Phase One panelists and others from stakeholder groups with low response rates (i.e., recipients, community representatives, and academics/researchers) who had not returned the Phase Two questionnaire.

Two months following the original Phase Two mailing, 303 people had completed and returned the questionnaire providing an overall response rate of approximately 35% (Table 3). There was significant variation among stakeholder groups in both absolute numbers of panelists and response rate. The groups ranged in size from 81 (mental health or social service providers/professionals) representing 27% of the panel to 32 (community representatives) or 11% of the panel. Parents had the highest response rate (48%) while community representatives had the lowest response rate (19%). TABLE 3 PHASE TWO STUDY PANELISTS

No. of Rate of % Total Stakeholder Group Panelists Response Panel

Recipients 37 37% 12%

Parents 43 48% 14%

Mental Health 81 39% 27% Professionals Rights Advocates 62 36% 20%

Caimunity Representatives 32 19% 11%

Academic/Researchers 48 37% 16%

Total Panel 303 35% 100%

Note: No. of panelists refers to the number of persons completing the Phase Two survey instrument. Rate of response is the percentage of persons participating as a function of the number of people invited to participate from that group. IV. Study Results

A. Phase One Results

The range of responses to the Phase One survey was very great both in quantity and quality. While some panelists provided brief one-sentence forecasts and/or strategy proposals, others submitted ten or more pages of original writing, some­ times accompanied by extensive resource material.

As a first step in organizing this large amount of material, responses were summarized and coded. Thus, every questionnaire was reviewed and each discrete forecast was summarized and typed onto an index card. Separate cards were prepared in a similar manner for each discrete strategy. Each card was also labelled with a letter/number code corresponding to the questionnaire from which it was taken. Additionally, for those surveys that yielded more than one forecast or strategy, each card was uniquely numbered in order to distinguish it from other forecasts/strategies from the same panelist.

Because the primary purpose of Phase One was to develop the substantive issues for quantitative evaluation in Phase Two, the analysis of Phase One responses was largely qualitative. That is, rather than focusing on analysis of individual responses, the treatment of the Phase One data emphasized the connections between responses in order to develop:

• a future-oriented scenario representing, in a synthesized and coherent fashion, the major developments of the next 20 years likely to affect the rights of the "chronically mentally ill" in the community; and

• a set of major strategic options designed to respond to the scenario developments in such a way as to advance and protect those rights.

62 63

In order to permit development of these products of Phase One, a simple coding scheme was created to help organize the forecast (Appendix D) and strategy responses (Appendix E). Each forecast was coded as representative of a general forecast type (e.g., changes in access to mental health services, reinstitutionalization, discrimination with regard to employment opportunities, public attitudes toward the mentally ill, general economic issues, etc.). Similarly, each strategy was coded as representative of a general strategy type including, for example, changes in treatment approaches, public education efforts, strategies designed to generate program funding or alter the fiscal structure of the treatment system, approaches to legislative refore, etc.

Based on the results of the card sort, selected questionnaire responses that appeared to best exemplify the dominant issues and points of emphasis were chosen and used in synthesizing the following major forecast and strategy themes. Because of the study's special interest in recipient and parent/family members, some of their responses have been highlighted.

1. Major forecast themes

There was reasonably wide variation both within and between stakeholder classes regarding the subject areas they per­ ceived to be of most importance as well as the degree and even the direction of change from present circumstances reflected in their forecasts. Nevertheless, several major forecast themes emerged. These themes have been organized into the following scenario outline:

a. Resource crisis

Many factors will conspire (and have already begun to do so) to reduce dramatically the resources available to meet the needs of the chronically mentally ill in the community over the balance of the century. Among others, these include economic factors (such as the depressed economy; inflation; soaring costs of health/mental health care; monetary policy; unemployment), political factors (such as the New Federalism; a government philosophy of social Darwinism; reduced national focus on social pro­ grams and mental health, along with increased emphasis on national defense), and public attitudes (including anti­ pathy toward the chronically mentally ill as a function of such factors as deinstitutionalization, increasing crime rates, and the traditional stigma of mental ill­ ness). Escalating the resource crisis will be an increased need for services as a function of a growing 64

prevalence of serious mental disability (in turn due to increased stress induced by technological complexity and to declining adequacy of services for the chronically mentally ill) and intensified competition among disad­ vantaged groups for limited resources.

Many panelists underscored the connection between major economic and political issues and the rights of the relatively powerless such as the chronically mentally ill. As an indication of the importance of such "macro" issues, one panelist furnished the following analysis:

A discussion of the "chronically mentally ill" must first examine the sociopolitical context of mental health care in the United States in order to attempt any forecast of possible developments in the next .20 years which may have implications for patients' rights. What appears to be the primary issue is the deepening social conflict in the United States around values and, in particular, the right to be different. While hardly a new debate in this society, or indeed in human history, the techno­ logical developments have made both the process and the outcome of such conflict more dangerous and more far-reaching. Given the interdependence of the world economy and the realization that for the first time in nearly 40 years U.S. consumers are going to be experiencing economic pressures long familiar to other societies, the question arises as to how this unpleasant experience of broad-scaled inflation, possible shortages of food, goods and services, decay of physical infrastructure, and lack of accessibility to private housing will affect U.S. residents' tolerance for differences.

Why is such an all-encompassing perspective necessary to initiate a discussion of mental health? Precisely because of the increased stress and tension experienced within families, families which are "well" and families with "chronically mentally ill" individuals. Our society will exper­ ience an aggravation of mental and emo­ tional problems in the next 20 years, 65

primarily because of economic pressures on a society accustomed to affluence and because the higher costs of social services and limitations on public funding to insti­ tutional and private programs will severely limit individuals' ability to seek assist­ ance. Furthermore, there will be less opportunity for institutional upgrading of facilities and programs, for treatment inno­ vation efforts, for extension of community services and prevention strategies and, in particular, for longitudinal research on which to build any services.

As suggested by this panelist, as well as numerous others, one of the major implications of the projected resource crisis will be a reduction in the availability and quality of a wide spectrum of services needed by the chronically mentally ill in the community. b. Decline in adequacy of services

The resource crisis (particularly the political factors) was seen as contributing to major regression in national policy vis-a-vis the mentally ill. It was asserted, for example, that the New Federalism" will reverse a 100-year trend. Originally, states stepped in where counties failed to act, then the federal government where the states failed. Now, the federal government is trans­ ferring responsibility back to the states, who in turn will pass it on to counties, who will be unable to be effective due to the unwillingness of taxpayers to support public programs, the parochial attitudes of local politicians, etc. The result will be a loss of federal leadership, standards and equity, and ultimately greater fragmentation, deterioration and confusion in the support system for the disabled.

As one panelist suggested, the transfer of government responsibility from the federal to the state level:

is simply a glorified states' rights move­ ment with all the threats to the rights of specific "minority" groups that such an orientation has always had. It is ques­ tionable that state legislatures, bureau­ cracies and judicial systems will be more rational than those of the federal govern­ ment. Serious questions of state expertise 66

are also a threat to continued support of human services.

The resource crisis will result in a major decline in the adequacy of the mental health care and treatment system, allied services, public entitlements and advocacy pro­ grams. Severely curtailed will be mental health services (in quality, quantity and scope of programs), community support programs, Supplemental Security Income, Social Security Disability, Food Stamps, Rental Assistance, Medicaid, Medicare, Vocational Rehabilitation, etc.

Juxtaposed to these negative developments, some panelists, in particular those identifying themselves as "parent/family members," forecast the possibility of advanced technology that might assist in the prevention or treatment of mental illness. As one such panelist proposed:

I see the development of new ways of early detection of serious mental illness, schizophrenia and manic-depressive illness through the use of metabolic and/or brain function indicators that will be developed to pick up the patterns of the disease. I see tests and procedures (for mental illness) that will be given routinely in the elementary schools like the TB and other diagnostic tests that are given now.

Such developments, however, would not be seen as beneficial by all panelists. A number of panelists spoke of the threats to civil liberties presented by such developments.

In addition to an absolute decline in human services, there will be continued Tand probably intensified) differential discrimination against the mentally ill, both as individual human service workers try to avoid dealing with them and as laws and policies discriminate against them in favor of more politically powerful groups such as the elderly and the physically disabled. As one panelist noted, "How advocates for the chronically mentally ill are to be heard in such an uproar is diffi­ cult to envision."

Furthermore, it is likely that the more innovative, less restrictive, more self-help oriented programs will suffer disproportionately in relation to the more traditional 67

medically-oriented programs. In this regard, one panelist wrote:

Just at the time when federal and state governments are beginning to see that the real needs of former patients in the com­ munity are for concrete, generic services (housing, health care, etc.) or non-medical services, cuts in Medicaid and other fiscal pressures are forcing states to define after-care programs in terms of what is federally reimbursable. This must be a short-term strategy given portended cuts in Medicaid. It also has two effects: it puts pressure on states to use more, rather than less, medicalization of social issues; and it directs funds toward the very agencies least able to develop creative programs, the large medical intensive bureaucracies that have the administrative capacity to process third party payments, to have the cash flow to sustain the wait for reimbursement, etc. Thus the fiscal pressure will be exerted in exactly the opposite direction from what people really need. c. Impact of declining services on the mentally ill

As a consequence of declining services, a growing number of the chronically mentally ill will live on the edge of existence in the community. Many will live in substand­ ard boarding homes or the equivalent in segregated areas, receiving medication even more powerful than present Prolixin, and little or no other services or assistance.

One parent panelist expressed the following sentiment:

...as people are turned out on the streets, those who have no place to go and no funds may become destitute. The stigma of mental illness will cause people to turn away from them, and unless they can keep their health history a secret, even those who are able to work regularly may be denied employment. A very bad situation could well build up over the years. 68

Even more extreme treatment possibilities were suggested by some panelists. For example, one respondent fore­ casted "an increased emphasis on (allegedly) 'cost- effective' technological solutions to social problems including the use of drug implants for drug refusers and mental pacemakers for 'difficult' people."

A growing number will become part of an emerging new community population group (the "street people"), an amalgam of older people who have lost homes or families, "young chronics," drop-outs, the chronically mentally ill, alcohol and drug abusers, etc. An increasing number will become involved with the criminal justice system. Greater utilization of the criminal justice system may be enhanced, as one panelist predicted, "because it will be 'easier' for the state to incarcerate the mentally ill and thereby remove them from society through the state's police power than to give them care and treatment under the parens patriae power of the state."

These profound human consequences will add fuel to public antipathy to the chronically mentally ill. This in turn will result in a further decline in equity with respect to community living opportunities. It will also precip­ itate a general retrenchment of civil liberties, pro­ moting, for example, increased "criminalization" of deviant behavior, a trend toward broadening of involun­ tary commitment criteria and, in general, pressure to reinstitutionalize the chronically mentally ill.

As a reflection of this general forecast, one panelist wrote:

A matter of growing concern in many metro­ politan areas is the problem of "street people" or "bag ladies"--often identified as former mental hospital patients. In the rush to deinstitutionalize and "protect the civil rights" of the mentally ill over the past decade and a half, it appears that serious gaps have developed. There has clearly been inadequate attention given to what happens to the "deinstitutionalized" who are unable to adequately care for themselves in an often hostile outside world which "protects" them from being institutionalized against their will but "abandons" them to an inadequate network of alternative resources. 69

I fear a potentially radical backlash— which may substantially reverse these civil rights gains. I fully expect a review of recent legislation which has made it diffi­ cult to keep the mentally ill in institu­ tions. In the name of "protecting the public" and "protecting these poor people" from themselves, I expect new legislation to be introduced which will make it much easier for authorities to detain such individuals in custody.

The general theme of reinstitutionalization appeared in many forecasts, in various forms, for example:

• pressure to revive state hospitals;

• pressure to institutionalize various subpopulations (e.g., substance abusers, "young chronics," etc.);

• more chronically mentally ill in nursing homes;

• return to congregate, all-purpose institutions such as county workhouses;

• tendency for CMHCs increasingly to take on the characteristics of "mini-institutions," catering more to bureaucratic needs than to the human needs of patients; and

• shift with respect to the public policy issue of liberty vs. humane treatment toward reinforcing hospitalization.

The forecast of reinstitutionalization was second only to the prediction of a "resource crisis" in frequency of mention.

Summarizing the gloom forecasted by many panelists, one recipient wrote:

The chief danger I see in the next 20 years to the rights of the so-called adult "chronically mentally ill" in the community is that the gains that have been made in the past 15 years will be wiped away and we will return to the era when psychiatric inmates, current and former, had no rights whatsoever. 70

2. Major strategy themes

Given the backdrop of this highly complex and pessimistic scenario, it is clear that no simple or ready-made solutions present themselves.Nevertheless, several important strategic considerations or directions appeared with some frequency in the proposals submitted by the members of the Study Panel.

a. Political activism

The most popularly endorsed counterbalance to this bleak future was to increase the politicization of the issues— to develop a more sophisticated political consciousness, to promote a stronger political organization on behalf of the mentally ill, and to take direct and effective poli­ tical action. Examples of political activism proposed by the Study Panel included organizing voter registration drives, letter writing campaigns by mental health con­ sumers, and the education of political representatives regarding major mental health concerns. The centerpiece of this political strategy was seen as the formation of coalitions both with traditional mental health concerns (mental health professionals, legal advocates, family members, and mental health consumers) and perhaps with other minority/handicapped groups, and also with broader social movements such as the peace movement which opposes increased militarization at the expense of needed social programs. As one panelist suggested:

Advocates for the rights of the chronically mentally ill are going to have to develop and nurture a coalition movement with advo­ cates for other "special populations," in order to participate more effectively in the current movement to redefine the social values of our country. Thus, if caring for the needy is to assume equal priority along with increasing productivity, achieving full employment of those able and willing to work along with providing for an ade­ quate defense system, and assuring equity for all residents along with balancing the budget, voices that are rational and con­ vincing will have to emerge in unison. Focusing solely on the problems of the mentally ill will be insufficient in the next two decades. 71

The respondents suggested that these coalitions will have to work together around issues of mutual concern to elect sympathetic political representatives and fashion legis­ lative agendas supportive of their interests. Examples of legislative proposals offered by the Study Panel included amending the Civil Rights Act of 1964 to include the mentally and physically handicapped, institutional­ izing advocacy programs in state statutes to ensure their continued existence, and legislating a uniform bill of patient rights at the federal level.

While the courtroom has, in recent years, been the major focus of patient rights efforts, the respondents sug­ gested that future battles are somewhat more likely to take place in the halls and chambers of Congress, and increasingly in state and local legislatures and councils. (Legislation was mentioned as a strategy of choice by a margin of 5-1 over litigation by members of the Study Panel.)

The granting of legal rights was not seen as a panacea, however. Several panelists noted, for example, that such rights, whether granted through legislative enactment or judicial decree, would require further attention. As one skeptical recipient remarked:

The stress on individual rights is seductive. Unionists, Blacks, women, and others have improved their situation by delineating their rights and confronting the system. This approach, then must be universal. Even if the person thinks the figures on the TV screen are talking to him or that he has been visited by an archangel, all he needs is an advocate to stand in his shoes, and all things will be set right. The trouble is that rights, though absolutely essential, are only a small part of the story. Societal preparation is at least as important. When society is not ready to accept the rights of a group, it can take years for the attitudes to change.

b. Public education campaigns

To pursue this line of logic, many panelists suggested the need for greater emphasis on public education. 72

Proposals in this area typically outlined a mass media approach such as a national telethon with the objectives of eliminating myths and stereotypes regarding mental illness and raising money to provide needed treatment, advocacy and research. For example, one panelist suggested:

We must work with both the public and the professionals on this issue. The chroni­ cally mentally ill are not "attractive" to either group. Public education efforts should be directed, in my opinion, toward the fear of the mentally ill (the act of violence by an ex-patient is always front­ page news) and toward separating the "mad" from the "bad."

Public education approaches were particularly supported by parent/family panelists. One such panel member offered the following options:

So few peole realize what mental illness really is and this needs to be changed. A "Speakers Bureau" should be established to speak to civic groups, schools, churches, etc. Movies could be made using real situations and people from our own area. Spot commercials on TV are often used. These could be done with actual mental patients, families of patients and others involved with the mentally ill.

In addition to providing education to the general public, many proposals also pointed out the need to improve educa­ tional efforts directed at elected political representa­ tives for the purpose of enlisting their support. Sev­ eral panelists also suggested improving early educational efforts in the public school system in order to provide children with information about mental health/illness and thereby possibly contribute to the prevention of serious mental disability. c. Enhancement of relationships with existing private sector resources

In view of the possible reduction of public mental health and patient rights advocacy services envisioned in the scenario outlined above, a number of panelists suggested the need to exploit potential alternative resource 73

providers. Examples included churches, civic organizations, business and industry, and private foundations. As mental health resources dwindle, it was suggested that such organizations may need to help subsidize mental health care and, in some instances, directly provide goods and services, such as food, clothing and shelter, to the chronically mentally ill in the community.

A number of panelists, however, were at least somewhat skeptical of the desirability of such ideas or the ability of the private sector to carry the responsibility for social service programs. As one panelist noted:

Clearly the complete privatization of com­ munity mental health care for the chroni­ cally mentally ill is undesirable, as users or potential users cannot afford to person­ ally meet current costs of care and shelter without public support. Semi-privatization with efficient government funding alloca­ tions and innovative strategies could work: i.e., provision of tax shelters and invest­ ment incentives for corporations who con­ tribute to a floating fund for support and maintenance of social programs, such as community mental health care. This would amount to recycling nontaxable money from the private sector via Federal/state govern­ ments to public programs.

d. Alternative service arrangements

Panelists frequently outlined alternative service arrange­ ments intended to be both rights protective and cost effective. Mutual self-help and self-advocacy strategies by both mental health care recipients and parent/family members were often proposed. The following is somewhat typical of such proposals:

Services for the chronically mentally ill are best provided by a nonintrusive agent, an agent that is not connected with the government or the onerous power to commit such as present social service agencies. A self-help patient organization composed of patients and ex-patients as well as professionals should be established which can provide a variety of services to 74

"chronic mental patients." They can pro­ vide access to job training, assistance with public benefits, housing referral and assistance, as well as individualized advocacy services.

Some support was demonstrated, particularly within the "mental health care recipient" group, for the establish­ ment of patient-controlled community residential alter­ natives to hospitalization. As an example of such pro­ posals, one panelist offered the following suggestion:

Contingency plans must be developed by groups representing the "chronically mentally ill" to continue providing ser­ vices at the same level despite budget cuts. This might mean finding private sources of funding, using volunteer labor, or placing more responsibility for "care" in the hands of nonprofessionals and service-users rather than providers. Models of care that require expensive doctors, nurses, social workers, and disabling doses of drugs must be abandoned in favor of innovative pro­ grams that place maximum responsibility on "users." Former "patients" with experience in running a home, for instance, might do a far better and cheaper job of housing the "chronically mentally ill"— actually the chronically psychiatrized— than profes­ sional care providers or soul doctors. This has already been successful in New York (Project Release), Vancouver (Mental Patients' Association) and Boston (Eliza­ beth Stone House).

As with most strategies, the idea of patient-controlled alternatives also drew some criticism. As one panelist wrote:

While some expect that voluntary activities by citizens, or "patient-controlled alter­ natives" will fill the gap of needed ser­ vices, I doubt it. This position is quite naive. It ignores the reality of severe mental illness, the extent to which many severely mentally disabled persons are unable, without substantial assistance, to care for themselves. 75

There also seemed to be some consensus across stakeholder classes that increased emphasis needs to be given to psychosocial rehabilitation approaches to community treat­ ment and concurrently less emphasis to more medically- oriented treatments that often rely largely on chemo­ therapy. e. Fiscal strategies

A number of panelists attempted to deal directly with the projected cut-back of public resources by suggesting strategies designed to enhance the community living opportunities available to the chronically mentally ill. A number of these proposals took the form of tax incen­ tives, either to individuals or businesses, to provide housing and employment possibilities for the mentally disabled. More ambitious schemes depicted government programs providing national mental health insurance or a guaranteed annual income. In this regard, one panelist wrote:

A guaranteed annual income, sufficient to meet the individual's basic needs, and not dependent on any sickness or disability, would do wonders in protecting the civil liberties as well as dignity and mental health (whatever that means) of the population served. And there is no doubt in my mind that our country can afford this. In fact, such a "guarantee" may well prove the wisest investment we have ever made.

Examples of other fiscal strategies included patient- owned and operated businesses, private foundation and business donations, and increased use of legislation providing for attorney's fees to support litigation on behalf of the disadvantaged. f. Consumer participation

Another major strategy theme, and one particularly en­ dorsed by former mental health care recipients, was the recommendation to increase the role of mental health con­ sumers in mental health treatment decisions and policy­ making. Strategies representing this focus described, for example, the need to enhance the representation of mental health care recipients and their families on decisionmaking, advisory and funding bodies. As one panelist proposed: 76

EI]t would seem that public agencies, gov­ ernments in Washington, Sacramento, Madison or Albany are not the places to determine the acceptable standards for the care of people, that the care of people must come from the energy of persons in the commun­ ity, by families, and by the consumers themselves of mental health services. Emphasis could be placed through consumer empowerment organizations on the rights of individuals to make judgments regarding what happens to their bodies and what happens to their minds.

This theme of consumer participation occasionally took on an anti-psychiatry flavor such as proposed by one recipient:

Current and former "mental patients" will continue to organize and join together in efforts to overthrow psychiatry and get their basic needs met.

Several panelists also discussd ideas for equalizing the relationship between mental health consumers and profes­ sionals by such means as promoting access by current and former patients to their mental health records. The concept of consumer involvement was summarized by one panelist who suggested:

The helping environment will need to be stripped of its dependency-inducing aspects which inevitably lead to the erosion of patients’ rights. The more the staff is "on tap" instead of "on top" the more the consumers are involved in the planning and implementation of the program. The more the clients function out of their "citizen role" rather than the "sick role," the more will rights be preserved.

The strategy themes outlined above represent but a few of the major policy, program and action proposals resulting from Phase One of this study. Other major themes in­ cluded research and evaluation strategies (e.g., iden­ tifying and evaluating innovative, cost-effective programs; exploring biochemical causes and treatments for mental illness, etc.), confrontation strategies 77

(e.g., public demonstrations; consumer boycotts, etc.) and advocacy program strategies (e.g., statewide legal advocacy programs external to the mental health system; expanded roles for ex-psychiatric inmates and parent/ family member groups as advocates, etc.). In regard to this last strategic approach, that of advocacy by con­ sumers themselves, one panelist stated:

In battle after battle for civil liberties it is the disabled and the disadvantaged themselves who have had the most profound impact on both public attitudes and public policies in winning long-term gains. No matter how much professionals may disagree on specific issues, the importance of a growing and vibrant consumer movement offers tremendous hope for the field, par­ ticularly in the area of civil liberties. More consistent efforts must be made to achieve an alliance of interests where those exist.

In general, the Study Panelists participating in the first phase of this study seemed to endorse the general strategy of seeking increased cooperation among advocate groups and promoting a better working relationship between advocates and mental health care providers. The objective of these new relationships would seem to be the enforcement and protection of past victories and, to a much lesser degree, the carving out of additional rights. There are, as always, important caveats to these general f indings.

It would appear from this initial phase that the members of the Study Panel see the number one agenda item as the preservation and strengthening of community mental health programs, public entitlements, and advocacy services. The second most critical issue, and related to the first, seems to be the prevention of a regressive movement toward a policy of reinstitutionalization. The third major agenda item would seem to be the development of equitable living opportunities such as housing and employment. 78

B. Phase Two Results

1. Rationale of the data analysis

Two assumptions or principles guided the analysis. First, the study does not reflect a representative sample of the population of informed individuals who are concerned with the rights of the chronically mentally ill. Instead, it was decided to survey a wide variety of individuals concerned with and knowledgeable about the rights of the chronically mentally ill. This has been accomplished by contacting notable members of the various stakeholder groups that comprise the domain of informed individuals. It was assumed that members of different stakeholder groups were likely to differ in their reponses to particular rights issues and strategies.

The second major assumption was that an informed individual would respond to the survey in a coherent and consistent manner. That is, it was expected that respondents would provide consistent answers to the several items in such a way to reflect a common underlying viewpoint or position. In other words, it was assumed that items that address the same fundamental problem or issue would tend to "cluster" together.

Concretely, this means that the first analysis task for each section of the questionnaire was the assessment of clustering. Thus, the results are reported largely in terms of item clusters rather than individual items. The scores for individual items rarely are reported in the body of the chapter. The mean rating assigned to each item by the entire sample, and by the members of each primary stakeholder group, may be found in appendices.

2. Overview of the data analysis

The portion of this chapter describing the results of Phase Two begins with a closer look at the stakeholder group memberships of the respondents. Since stakeholder group membership is a major explanatory variable throughout the analysis, in particular with reference to recipients and parents, it is important to gain a clear understanding of the composition of the stakeholder groups. The discussion then follows the structure of the questionnaire, examining the ranking and rating tasks with the issues and forecasts and strategy proposals sections in order. 79

The questions to be addressed, and the types of analyses to be reported, are similar for each of the four groups of analysis tasks to be described in this part of the chapter (i.e., the ranking and rating tasks for both the issues and forecasts and strategy proposals). In each step in the analysis, the first task involves identifying item clusters; that is, sets of items that respondents have answered in a similar fashion. The item clusters then are used as dependent variables in the analyses to follow.

The question is then asked, "Do the stakeholder groups differ in their perceptions of the item clusters?" This involves a series of one-way analysis of variance (ANOVA) procedures in which stakeholder group is the independent variable and item clusters are the dependent variables. Each ANOVA procedure tests the null hypothesis that the six primary stakeholder groups do not differ in their perceptions of the dependent variable; that is, that the mean scores provided by the groups are equal. If the null hypothesis is rejected (i.e., if the six stakeholder groups do not provide equivalent answers), the analysis then attempts to localize the group differences with a set of post hoc contrasts using Scheffe's test. That is, given that there are some overall group differences we ask, "Which pairs of stakeholder groups are significantly different from one another?" Again, the study will pay particularly close attention to the perspectives of recipients and parents.

At this point the analysis will have provided a detailed picture of the relationships between stakeholder group membership and four sets of dependent variables; the ranking data and the rating data for both the issues and forecasts section and the strategy proposals section. The subsequent analyses attempt to provide an understanding of these basic results in three ways.

First, the analysis explores the relationships between responses obtained from the four sections of the questionnaire. For example, are respondents' views regarding the importance of various rights issues related to their strategy preferences? Questions such as this one are examined by means of a correlation matrix relating each of the issues clusters to each of the strategy proposals clusters.

Next, the analysis focuses on the individual items from the strategy proposals section. How does what has been learned in the prior analyses shed light on the diverse collection of 80

strategies presented in this section? Has the study suggested a set of most preferred strategies? Which stakeholder groups are especially enthusiastic about a particular assemblage of strategy proposals?

The review of Phase Two results will close with a re-examination of the effects of stakeholder group membership. Are there consistent and reliable differences among stakeholder groups with regard to their perspective on various issues and strategies, or is there a high degree of consensus? How do recipients and parents line up with respect to these points? Are there ways to characterize the respondents that are more informative than stakeholder group membership? What has been learned about the community of knowledgeable individuals concerned with the rights of the chronically mentally ill?

3. The stakeholder groups

As previously noted, the respondents were asked to identify themselves as members of one or more stakeholder groups. As in Phase One, the six stakeholder group categories were: (1) Current or former direct recipient of mental health services; (2) Parent/relative of mental health care recipient; (3) Men­ tal health or social service provider or professional; (4) Patients' rights advocate; (5) Community representative; and (6) Academic/researcher.

Again, respondents claimed group membership in two ways. First, each individual identified the single category that best described his or her viewpoint. This self-rating, which has been termed the respondent's primary stakeholder group, is the major independent variable for many of the analyses that follow. Second, each respondent could also claim one or more secondary affiliations with any or all of the five remaining stakeholder groups. Thus, while many of the respondents identified themselves as "pure" stakeholder group members (i.e., they checked no secondary group affiliations), the primary group identifications of a substantial number of individuals indicated they were associated with one or more secondary groups.

As shown in Table 4, approximately one-half of the sample (48.8%) have no secondary group affiliations. At the other extreme, two respondents claimed to be members of all six stakeholder groups, identifying with one primary group and five secondary groups. The primary stakeholder groups also vary considerably. For example, only 37.8% of the recipients have no secondary group identifications, while 58% of the TABUS 4 HM3ER OF SHXtOARY GROUP AFFILIATIONS BY PRIMARY STAKEHOLDER GROUP

Stakeholder G r o m Nmfeer of Secondary Affiliations

0 1 2 3 4 5 (N)

Recipients 14(37.81) 8(21.61) 9(24.31) 5(13.51) 1(2.7*) 0 37 Parents 19(44.21) 14(32.61) 8(10.6») 1(2.3%) 0 1(2.34) 43

Mental Health Professionals 47(58.01) 17(21.01) 9(11.1») 6(7.41) 1(1.21) 1(1.21) 81 Rights Advocates 35(56.51) 9(14.51) 14(22.61) 4(6.51) 0 0 62

Ccrmnity Representatives 13(40.61) 10(31.31) 4(12.51) 5(15.61) 0 0 32 Academics 20(41.71) 20(41.71) 4(8.31) 3(6.31) 1(2.11) 0 48

Total Sarple 148(48.81) 78(25.71) 48(15.81) 24(7.91) 3(0.91) 2(0.71) 303

Note: Percentages refer to stakeholder groips; e.g., 21.61 of recipients have one secondary affiliation. 82

service providers or professionals did not indicate membership in any secondary groups.

The details of secondary group affiliation are provided in Table 5. This table displays the number of individuals in each primary group who also belong to each of the secondary groups. In interpreting this table, it is important to remember that the secondary group categories are not mutually exclusive. That is, panelists were allowed to identify themselves with as many secondary groups as they deemed appro­ priate. For example, nine recipients are also secondary service providers, and 16 recipients are also secondary rights advocates. Because each respondent could identify with more than one secondary group, it is very likely that a number of individuals claimed membership in both of these secondary categories.

Several patterns of secondary group affiliation are espec­ ially noteworthy. As mentioned above, 16 (43.2%) of the recipients also identified themselves as rights advocates. Many of the parents (39.5%) claimed secondary identification as community representatives. And nearly one-half of the academics are also service providers or professionals.

Primary stakeholder group membership is a major explanatory variable in the analyses to follow. It was assumed that members of the various stakeholder groups were likely to differ systematically in their responses to particular issues and strategies. As an important caveat, keep in mind that a large number of the respondents were not "pure" primary group members. This may have attenuated differences between the primary stakeholder groups. This possibility will be a difficulty to the extent that the responses of individuals with secondary affiliations reflect the possibly crosscutting perspectives of the several stakeholder groups in which they claim membership. This will not be of concern to the degree that the responses of these individuals are influenced predominantly by their primary stakeholder group membership.

4. Relative importance of rights issues

Respondents were asked to rank order'10 major rights issues in terms of their relative importance for the adult chronically mentally ill residing in the community. It was assumed that all 10 rights issues are important in an absolute sense, and that given a chance to rate each of the 10 issues independently, the sample would have regarded all 10 issues as "very important." The rank order task was designed to circumvent this noninformative possibility. TAB££ 5 SBCOWARY GROUP AFFILIATIONS BY PRIWVRY STAKEHOLDER GROUPS

Secondary Group Affiliation

Stakeholder Group Recipients Parents Mi Profess. Rts. Advocs. Cent. Reps. Academics

Recipients (N=37) -- 0 9(24.31) 16(43.21) 7(18.91) 8(21.61) Parents (43) 4(9.34) --- 6(14.01) 9(20.91) 17(39.51) 2(4.71) Mental Health Professionals (81) 9(11.11) 8(9.91) -- 1923.51) 8(9.91) 18(22.21) Rights Advocates (62) 9(14.51) 11(17.71) i3(a.oi) -- 11(17.71) 5(8.11) C o m m i t y Representatives (32) 4(12.51) 8(25.01) 6(18.81) 8(25.01) -- 7(21.91) Academics (48) 0 4(8.31) 23(47.91) 10(20.81) 2(4.21) --

Total Serple (N=303) Secondary group affiliation: 26(8.51) 31(10.21) 57(18.81) 62(20.51) 45(14.91) 40(13.21) Primary or secondary group affiliation: 63(20.81) 74(24.41) 138(45.51) 124(40.91) 77(25.4)1) 80(29.01)

Note: Percentages are row percentages; e.g., 24.3* of recipients have secondary affiliations as service providers. Percentages do not sum to 100. 84

Because of this, the responses to each item are not independent. Given that some of the items are ranked as relatively important, it may be that some of the other items receive lower scores solely because of the nature of the task.

The presentation here begins with a discussion of the procedural details of identifying item clusters. A more concrete examination of the content of the clusters follows. The chapter continues with an investigation of stakeholder group differences in evaluations of the clusters, and concludes with a still more specific look at stakeholder group perceptions of the 10 individual rights issue items.

a. Clustering of rights issues

The assessment of clustering in this section of the questionnaire involved a two-step process. First, a matrix of the average distances in rank between each of the 10 items was constructed. (For example, if item 1 has a mean rank of 3.2 and item 2 a mean rank of 4.3, the average distance between the two items is 4.3 minus 3.2, or 1.1.) These data, reflecting the similarity of rankings of relative importance of the issues, were input into a multidimensional scaling (MDS) computer program. This step generated a series of hypothetical clusters by identifying, according to the statistical algorithms of MDS, sets of items that seemed to vary together (i.e., a favorable reaction to one item was associated with a positive response to another).

As a second step, the analysis compared (a) the average distance between the items included in a cluster with (b) the average distance between the cluster items and all other items. For each cluster, a t-test was used to test the hypothesis that the within-cluster items were closer together (or more similar to each other) than the cluster items were with the others. For purposes of illustration, consider an ideal case in which the three items that comprise a fictitious cluster are consensually assigned to adjacent ranks (e.g., ranked 1, 2, and 3 in terms of relative importance). The average distance between them would be 1.3. The average distance between the cluster items and the other 7 items would be significantly greater than 1.3.

Four clusters were identified using this procedure (the statistics to support this are in Tables 6, 7, and 8). See Table 9 for a complete listing of the clusters 85

TABLE 6 CLUSTER ODNFIHMATION STATISTICS FOR EQUITY CLUSTER

(A) Average (B) Average (C) Absolute (D) Stakeholder Group Within-Cluster Between-Cluster Value of Distance Distance Difference t-Value

TOTAL SAMPLE 2.64 4.97 2.33 23.70 **

Recipients 2.57 4.83 2.26 8.46 **

Parents 2.32 4.53 2.21 10.38 **

ffental Heal tli 3.18 5.05 1.87 9.08 ** Professionals 2.50 5.11 2.61 12.72 ** Rights Advocates Conmunity Representatives 2.07 5.15 3.08 10.13 **

Academics 2.60 5.02 2.42 9.83 **

Note: (A) is the average absolute value of all within-cluster pair­ wise differences (B) is the average absolute value of the distance between each cluster item and all noncluster items (C) is the absolute value of the difference between (A) and (B). (D) refers to a t-test testing the hypothesis that (A) is smaller than (B).

*£<.05. **£<.01. 86

TABLE 7 CLUSTER CONFDWVriON STATISTICS FOR AUTONOMY CUSTER

(A) Average (B) Average (C) Absolute (D) Stakeholder Group Hithin-Cluster Betwaen-Clinter Value of Distance Distance Difference t-Value

TOTAL SAMPLE 3.13 3.84 .71 9.18** Recipients 2.99 3.81 .82 3.35** Parents 3.32 3.80 .48 2.30* Meptal Health Professionals 3.24 3.80 .56 4.50** Rights Advocates 2.96 3.88 .92 5.21** Catmunity Representatives 3.34 3.74 .40 1.68 Academics 2.98 3.94 .96 4.84**

Note: (A) is the average absolute value of all within-cluster pair­ wise differences (B) is the average absolute value of the distance between each cluster item and all noncluster items (C) is the absolute value of the difference between (A) and (B). ©) refers to a t-test testing the hypothesis that (A) is smaller than (B).

*£ .05. **£ .01.

TARTF. fl OUSTER CONFIRMATION STATISTICS TOtrsBflncEB cu iijm r • 1

(A) Average (B) Average (C) Absolute (D) Kithin-Cluster Between-Cluster Value of Difference t-Value takeholder Group Distance Distance .85 6.44** TOTAL SAMPLE 2.96 3.81 .31 .78 Recipients 3.50 3.81 1.51 4.35** Parents 2.40 3.91 3.00** Mental Health 3.01 3.75 .74 Professionals .29 1.02 Rights Advocates 3.33 3.62 Ccmomity 4.05 1.55 3.84** Representatives 2.50 1.13 3.50** Academics 2.78 3.91

Note: (A) is the average absolute value of all within-cluster pair­ wise differences (B) is the average absolute value of the distance between each cluster item and all noncluster items (C) is the absolute value of the difference between (A) and (B). CD) refers to a t-test testing the hypothesis that (A) is snaller than (B).

*£<.05. **£<.01. TABLE 9 THE RIGHTS ISSUE CLUSTERS

Cluster Items

EQUITY c. Equal employment opportunities f. Equal housing opportunities h. Equal educational opportunities

AUTONOMY a. Freedom from involuntary hospitalization b. Availability and quality of advocacy services d. Freedom to participate in mental health treatment decisions i. Freedom to receive mental health treat­ ment in the least restrictive alterna­ tive setting

SERVICES e. Availability and quality of mental health services g. Availability and quality of generic services

ENTITLEMENTS j- Availability of public entitlements 88

and their component items. The first factor, labelled equity (items c, f, and h), seems to reflect a concern with equal opportunity for the chronically mentally ill in a variety of settings. The second cluster appears to deal with autonomy issues (items a, b, d, and i). These items seem to share an interest in the degree to which chronically mentally ill individuals are free to control their interactions with the mental health system. The third cluster reflects the importance of services for the chronically mentally ill (items e and g ) , including those related to both mental health and more generic service needs.

Finally, the availability of public entitlements (item j) stands alone as the fourth cluster. The entitlements item did not vary systematically with any other item and significantly degraded the integrity of the other clusters when included with them. It seems especially noteworthy that attitudes toward entitlements were not related to concerns about the availability of services.

In order to analyze the cluster score data, each respon­ dent was assigned a single score to summarize his or her responses to each rights issue cluster. These cluster scores served as the dependent variables in the analyses to follow. Every cluster score was computed as the average ranking of the items in the cluster. For example, an individual who ranked the equity items third, fifth, and seventh was assigned an equity cluster score of 5.

b. The importance of types of rights issues for the stakeholder groups

Table 10 summarizes the analysis of variance (ANOVA) results relating stakeholder group to cluster scores on rights issues.

Two general findings are important to note before inspecting the table in more detail. The first concerns the perceptions of the panel taken as a whole. Looking at the top line of the table, the sample viewed entitlements issues (4.31) and services (4.33) as the most important rights issues, closely followed by autonomy (5.52) and equity (6.59) issues (a smaller score indicates greater perceived importance). Second, the bottom line of the ANOVA table shows that there were significant stakeholder group differences in the perception of all four issues. Members of the six 89

table 10 RIGHTS TRSUE CLUSTER SCORES BY Pr i m a r y s t a k e h q u e r g h a t o

Stakeholder Gt o u d Riqhts Issue Cluster Scores ttruitv Autonomy Services Entitlements Total Sairole 6.59 5.52 4.33 4.31 Recipients 5.91(a) 4.74(a) 6.26(a) 5.58(a) Parents 6.17(a) 6.41(b) 3.33(b) 3.91(a) Mental Health 6 .6 6 (a) 5.70(a)(b) 4.09(b)(c) Professionals 4.03(a) Rights Advocates 6.65(a) 5.01(a) 5.03(a)(c> 4.17(a) Community Representatives 7.06(a) S. 37(a)(b) 3.56(b) 5.02(a) Academics 6.74(a) 5.79(a)(b) 3.78(b) 3.85(a)

Analysis of variance Results P-2.85, F*6.27, M 3 . 2 7 , 1*2.73, p <.05 p <.01 p <.01 p <.05

Note: Bitries are group mean rankings, i.e. the smaller the number. r!<;.i!10rc-n}3lliy ranketJ wer« the-issues withinthe cluster. ANOVA results refer to overall, test of group differences. Postscripts refer to post hoc comparisons with SchefTes test— for each rights issue (each column of the Table) groups that share at least one postscript are not significantly dif­ ferent at the .05 level— e.g., with services issues, rights advocates (a)(c) are significantly different from parents (b), but rights advocates are not significantly different from mental health professionals (b)(c) or recipients (a). 90

primary stakeholder groups did not provide equivalent evaluations of any of the rights issues.

The equity cluster was generally regarded by the sample as a whole as the least important of the four clusters and generated the smallest degree of diversity of opinion among stakeholder groups. Though recipients and parents appeared to be somewhat more concerned about equity issues than were members of the other four groups, Scheffe's test of all possible pairwise comparisons revealed that no two groups were significantly different.

Recipients and rights advocates viewed autonomy as the most important issue, while the other four stakeholder groups saw autonomy concerns as somewhat less important. Of the six stakeholder groups, parents provided the least favorable evaluation of the importance of autonomy. Scheffe's test revealed that recipients as well as rights advocates viewed autonomy as significantly more important than did parents.

Stakeholder groups that valued autonomy less highly had markedly more positive evaluations of the importance of services. The pairwise comparisons show that parents, community representatives and academics were significantly more favorable toward services than were recipients and rights advocates, and that service providers were more positive than were recipients.

Recipients and community representatives were less concerned about entitlements than were other respondents, however, Scheffe's test failed to find any significant pairwise comparisons.

Perhaps the most interesting finding from these cluster scores is the apparent dichotomy between autonomy and service issues. No stakeholder group was equally favorable to both of these issue categories. Recipients and rights advocates valued autonomy more than services. Parents, community representatives, academics and, to a lesser extent, service providers appeared to regard the availability of services as more important for the rights of the chronically mentally ill than the protection of autonomy. Parents and recipients seem best to represent these two contrasting positions with parents valuing service issues, and recipients placing the most important on autonomy issues. 91

Table 11 presents the mean rankings of each rights issue item for each stakeholder group, along with the results of the one-way ANOVA procedure. It appears that the tentative dichotomous partitioning of the stakeholder groups can be modified in two ways. First, with the autonomy cluster, notice that all of the between- Stakeholder group variability is captured by item a (freedom from involuntary hospitalization). Recipients, and to a lesser degree rights advocates, tended to view this issue as more important than did members of the other stakeholder groups. There were no significant stakeholder group differences in evaluation of the other three items in this cluster. Patients and parents particularly differed in their evaluation of the importance of freedom from involuntary hospitalization, this being ranked as the most important issue by recipients and the least important by parents.

Second, with regard to service issues, it seems that the characterization of recipients and rights advocates as sharing the same viewpoint was premature. Recipients and rights advocates concurred in ranking the availability of generic services as relatively less important, but rights advocates saw mental health services as being more important than did recipients. Recipients were much less enthusiastic about the availability of mental health services than were any of the other five stakeholder groups. Here again the divergence of viewpoints between parents and recipients is notable.

5. Forecasts

The second section of the questionnaire was composed of 40 items, each representing an issue or development that may affect the future rights of the chronically mentally ill in the community. Respondents were asked to provide two ratings for each item. First, they were to estimate the direction and magnitude of change of each potential development over the course of the next 20 years. These forecasts were made using a five-point scale, with "1" representing "greatly increase" and "5" "greatly decrease." Respondents were then asked to judge the impact of each of the projected developments on the rights of the chronically mentally ill in the community. The impact ratings also used a five-point scale, with a score of "1" indicating a "very positive impact" and a score of "5" reflecting a judgment of "very negative impact." TABLE 11 RIGHTS ISSUE ITEM SCORES BY ISSUE CLUSTERS AND PRIMARY STAKEHOLDER GROUPS

Rights Issue Clusters

BQUm ENTITLE­ AlTTONQMy SERVICES MENTS FI a. - — ET~ ~3T Lekt Mental Equal Equal EJqual Involuntary Advocacy Treatment Restrictive Health General Public Employment Housing Education Hospitalization Services Decisions Alternatives Servioes Services Entitlements Stakeholder Group

Total Sample 6.2 5.6 8.0 6.3 5.4 5.8 4.5 3.8 4.9 4.3

Recipients 4.7(a) 5.9(a) 7.2(a) 4.1(a) 4.7(a) 5.1(a) 5.0(a) 6.2(a) 6.5(a) 5.6(a)

Parents 6.0(a)(b) 5.0(a) 7.5(a)(b) 8.3(b) 6.1(a) 6.6(a) 4.6(a) 2.4(b) 4.2(b) 3.9(a)

Mental Health 6.2(a)(b) 5.3(a) 8.5(b) 6.8(b) (c) 5.7(a) 5.8(a) 4.6(a) 3.8(b) 4.4(b) 4.0(a) Professionals 4.2(a) Rights Advocates 6.5(b) 5.7(a) 8.2(a)(b) 5.2(a)(c) 5.1(a) 5.8(a) 3.8(a) 3.9(b) 6.2(a)

Camunity 7.1(b) 6.1(a) 7.8(a)(b) 6.6(a)(b)(c) 5.0(a) 5.8(a) 4.1(a) 3.0(b) 4.2(b) 5.0(a) Representatives Academics 6.5(b) 5.7(a) 8.1(a)(b> 6.8(b)(c) 5.5(c) 6.0(a) 5.0(a) 3.4(b) 4.2(b) 3.9(a)

Analysis of Variance Results F*4.5, F-l.l, F*3.3, E*9.1, P-2.0, F*1.7, F=1.4, I*=8.0, P-9.9, F-2.7, p <.01 n.s. p <.01 p <.01 n.s. n.s. n.s. p <.01 p <.01 p <.05

Entries are group mean rankings, i.e. the smaller the number, the more highly N o t e : ranked was the rights issue. ANOVA results refer to overall test of group differences. tastscripts reter to post hoc comparisons with Scheffe's test— for each rights issue (each colunn of the table) groups that share at least one postscript are not significantly different at the .05 level— e.g., with item a., involuntary hospitalization, recipients (a) are signifi­ cantly different from mental health/social service professionals (b)(c), but recipients are not significantly different from coamunity representatives (a)(b)(c). NJ 93

By the structure of the questionnaire, the impact rating task asked each respondent to estimate the impact of his or her own forecast for any particular item. That is, respondents were asked to base their impact judgment on their own forecast rather than to assess the impact of a common forecast. The potential dependence of the impact and forecast scores presents a problem for the analysis of this data. In essence, one must ask whether a respondent whose forecast for a particular issue was "greatly increase" is answering the same impact question as a respondent who predicted that that issue would "remain the same"?

In fact, the data indicate that the forecast and impact rating scores are highly correlated. A Pearson correlation coefficient was computed between the forecast rating and the impact score for each of the 40 items. Taking all 40 items as a whole, the mean absolute value of this correlation coefficient was .67; for 23 (or 58%) of the items the absolute value of the correlation was .70 or greater; and for only 6 (or 15%) of the items was the absolute value of the correlation less than .50.

Since the impact scores are highly correlated with the forecast ratings, little information is lost and a great deal of clarity gained by dropping the forecast scores. Note that the forecast-impact correlation for each item is included, along with the usual descriptive statistics, in Appendix F-l.

a. Clustering of forecasts

Factor analysis revealed that only a single underlying factor is needed to account for the responses to all 40 items. The responses to the items in this section can be summarized as reflecting a general orientation of optimism or pessimism about the future. This appears to be true despite efforts to identify other clusters that would represent a more differentiated view of the future.

The evidence to support this single factor conclusion is persuasive. Factor analysis using principal components analysis as the method of factor extraction uncovered a first factor that accounts for 70% of the variance shared by the 40 items. A variety of orthogonal factor rotation strategies using the varimax and quartimax rotation criterias were employed in an attempt to minimize the influence of the major factor. None of these attempts identified satisfactory secondary clusters in the sense that they were unable to produce a correlation between the major factor and any one item with a value below .35. 94

The optimism/pessimism cluster was created by forming a single summary score based on the mean of each individual's responses to 12 items. See Table 12 for a list of the items. The 12 items were selected to reflect a wide range of substantive meanings. The pervasive influence of the optimism/pessimism factor means that the summary measure used here is essentially equivalent to a summary score constructed in an alternative manner. That is, the analysis of a summary cluster score obtained by averaging all 40 items, or by randomly selecting 12 items, would have led to conclusions identical to those reported below. As further evidence of the integrity of the optimism/pessimism cluster, the reliability of the summary scale, as measured by Cronbach's alpha statistic, is .90.

b. Forecasts as a function of stakeholder group membership

Table 13 presents the ANOVA results related to the optimism/pessimism clusters. Several aspects of the table are particularly noteworthy. The sample mean of 3.22 indicates that the respondents, taken as a whole, seemed to believe that developments of the next 20 years will have only a slightly negative impact on the rights of the chronically mentally ill in the community. A score of "3" represents "balanced or no impact," while a score of "4" indicates "negative impact." The Panel's rather moderate perception of the future was reflected in the fact that the sample means of 60% of the 40 items fell within one-half point of the scale midpoint of "3."

A one-way analysis of variance was performed in order to determine whether there were any significant differences among primary stakeholder groups on the optimism/ pessimism index. The significant F-ratio from the analysis of variance indicates that the stakeholder groups have not provided equivalent forecasts. Overall, parents seemed to be the most optimistic about the future (mean score of 2.77), while rights advocates were the most pessimistic (3.48), and the other four stakeholder groups were close together between these two extremes. Scheffe's test revealed that only the views of parents and rights advocates were significantly different on the set of issues constituting the optimism/pessimism factor. Parents and patients did not differ statistically in their forecasts of the future, although recipients tended to be somewhat pessimistic while parents were slightly optimistic. TABLE 12 ITPS INCLUDED IN THE OPTIMISM/PESSIHISW CLUSTER

Cluster Items OPTIMI SVPESSIMI31 2. Federal funding for social programs including those providing mental health services will... 3. The availability of free or low-oost legal representa­ tion for the "chronically mentally ill" (OH) in the ccnmunity will... 5. The quality of mental health services available to the O H in the ccnmunity will... 8. Public tolerance for the O H in the community will... 9. The extent to v#uch mental health treatment is pro­ vided in the least restrictive setting will... 12. The availability of patients' rights advocacy and rights protection services for the O H in the ccnmunity will... 13. The extent of enforcement of legal decisions supporting the rights of the O H in the community will... 16. The scope and availability of mental health services for the O Q in the ccnmunity will... 25. The opportunities for mental health care recipients to influence-or determine the course of their care and treatment will... 26. Resistance by neighborhoods and caimunities to the integration of O H persons into their areas (for exanple, through group homes) will... 32. Public opinion supporting the rights of the O H in the community will 37. Public pressure to hospitalize many of the O H in the community will... TABLE 13 OPTIMISM/PESSIMISM CLUSTER SCORES BY PRIMARY STAKEHOLDER GROUPS

Stakeholder Group Optimian/Pessimim Cluster Scores

Total Sanple 3.22 Recipients 3.23(a)(b) Parents 2.77(a) ffentSI HftHth Professionals 3.25(a)(b> Rights Advocates 3.48(b) Carmunity Representatives 3.16(a)(b) Academics 3.24 (a)(b)

Analysis of Variance Results P>4.00, p <.01

Note: Entries are group means. The smaller the number, the more optimistic the rating. ANOVA results refer to overall test of group differences. Postscripts refer to post hoc ccnparisons with Scheffe's test— groups that share at least one postscript are not significantly different at the .05 level— e.g., parents (a) are significantly different fran rights advocates (b), but parents are not signifi­ cantly different frcrn recipients (a)(b). 97

Table 14 presents the 10 items that the panel placed at the extremes of the distribution. Of the five items that elicited the most positive impact ratings, items 17, 30 and 25 all signal the perceived beneficial effects of increased involvement of mental health care recipients and their families. The five most negatively evaluated forecasts all underscore the decidedly adverse consequences of a decreased availability of resources.

6. An examination of general strategic approaches

In the final two sections of the questionnaire, respondents were asked to assess strategies, i.e., policy, program, and other action proposals derived from Phase One, designed to protect and enhance the rights of the chronically mentally ill in the community. First, eight general strategic approaches were presented (see section 2A of survey in Appendix C). Note that the responses to individual rank order items are not independent. (That is, given that some of the items are assigned high ranks, it must follow that some of the other items receive low scores solely because of the nature of the ranking task.)

a. Clustering of strategic approaches

Multidimensional scaling was used to generate a set of hypothetical item clusters (see Section 4A). These factors were confirmed by comparing (a) the average distance between the items included in a cluster with (b) the average distance between the cluster items and all other items. In each case, a t-test was used to test the hypothesis that the within-cluster items were closer together than the cluster items were with the others. This procedure was repeated for each primary stakeholder group to verify that the clusters generalized to all the stakeholder groups.

This procedure identified three clusters, as shown in Tables 15, 16, and 17. Table 18 lists the clusters with their component items. The first cluster represents strategies to promote private sector support, public education, and research and evaluation (items b, c, and h). This factor was labelled public understanding and support. The items in the second cluster reflect the value of legislation, self-help/self-advocacy, and coalition strategies (items a, d, and g). This factor seems to measure the degree of support for political activism. The third cluster appears to summarize w m E 14 THE FIVE MOST POSITIVE FORECASTS AND THE rrVE~MOST n e g a t i v e f o r e c a s t s a s h a t e d b y ------Ithe e n t i r e p a n e l -

THE FIVE MOST POSITIVE FORECASTS Item Incact Rating 17. The increased extent to which advocacy is conducted by current and former health care recipients an behalf of the O H in the ccnmunity 2.24 30. The increased extent to which parent/family groins axe involved in determining mental health policy and practice 2.36 20. The increased extent to which comuinity service organiza­ tions such as churches and civic group* provide cere and supportive services for the CJO in the ccmunity 2.38 6 . The increased importance of the judicial process in pro­ tecting the rights of the O G in the ccnmunity 2.69 25. The increased opportunities for mantel health care recip­ ients to influence or determine the course of their care and treatment 2.71

THE FIVE HOST NEGATIVE FORECASTS 40. The increased competition among disadvantaged grorgm for public resources 4.17 2. Decreased federal funding for social programs, including those providing mental health services 4.07 33. The increased degree to which fiscal considerations de­ termine mental health policy and practice 3.95 29. Assuming that fiscal responsibility for mental health care is transferred frcm federal to state and local gov­ ernments, the level of mental health resources devoted to the O H 3.85 21. The decreased extent of si^iport for the 051 in the com­ munity through public entitlement programs (such as SSI, housing assistance and Medicare) 3.73

Note: Entries are mean Panel ratings. The smaller the number, the more positive the forecast. 99

TABLE 15 CLUSTER OONFIFMATICN STATISTICS FOR PUBLIC UNDERSTANDING AND SUPPORT CLUSTER

(A) Average (B) Average (D) Absolute (D) Stakeholder Group Kithin-Cluater Between-Cl us ter Value of Distance Distance Difference t-Value TOTAL SAMPLE 2.52 3.07 .55 8.27 *» Recipients 2.52 3.14 .62 2.97 ** Parents 2.38 3.00 .62 3.42 ** Mental Health 2.64 3.05 .41 3.27 ** Professionals Rights Advocates 2.59 3.04 .45 3.00 ** Camiunity 2.5B 3.10 .52 2.54 * Academics 2.31 3.18 .87 5.23 **

Note: (A) is the average absolute value of all within-cluster pairwise differences. (B) is the average absolute value of the distance between each cluster item and all noncluster items. (C) is the absolute value of the difference between (A) and (B). (D) refers to a t-test testing the hypothesis that (A) is snaller than (B). *£<•05. »*£<.01. TABLE 16 OUSTER OCNFIFMATICN STATISTICS FOR POUTICAL ACTIVISM CLUSTER

(A) Average (B) Average (C) Absolute (D) takeholder Grouo Kithin-Cluster Between-Cluster Value of Distance Distance Difference t-Value TOTAL SAMPLE 2.63 3.05 .42 7.07 ** Recipients 2.70 3.02 .32 1.67 Parents 2.71 2.84 .13 .86 Mental Health Professionals 2.63 3.08 .45 3.92 »* Rights Advocates 2.66 3.16 .50 3.43 ** Oenmunity 2.63 3.03 .40 2.35 * Representatives Academics 2.44 3.12 .68 4.86 **

Note: (A) is the average absolute value of all within-cluster pairwise differences. (B) is the average absolute value of the distance between each cluster item and all noncluster items. (C) is the absolute value of the difference between (A) and (B). (D) refers to a t-test testing the hypothesis that (A) is smaller than (B). *£<.05. **£<.01. 101

TABLE 17 CLUSTER OCNFIPMATICN STATISTICS FOR OCKFflCtTTAIICW CLUS'iEB

(A) Average (B) Average (C) Absolute (D) Stakeholder Grouo Hithin-Cluster Between-Cluster Value of Distance Distance Difference t-Value TOTAL SAMPLE 2.50 3.28 .78 6.85 ** Recipients 2.72 3.15 .43 1.32 Parents 2.42 3.39 .97 3.09 ** Mental Health 2.36 3.30 .94 4.33 ** professionals Rights Mvocates 2.93 3.15 .22 .84 Ctrmunity 1.97 3.41 1.44 Representatives 4.83 ** Academics 2.40 3.33 .93 3.22 **

Note: (A) is the average absolute value of all within-cluster pairwise differences. (B) is the average absolute value of the distance between each cluster iten are! all noncluster items. (C) is the absolute value of the difference between (A) and (B). (D) refers to a t-test testing the hypothesis that (A) is snaller than (B). *£<.05. **£<.01. TABLE 18 TOE GENERAL STRATEGIC APPROACHES CLUSTERS

Cluster Items

PUBLIC UMJERSTANDING AND b. Strategies designed to prcmote private sector SUPPORT STRATEGIES support of mental health care and allied services. c. Public education strategies designed to increase public understanding and support for the rights of mental health care recipients. h. Research and evaluation strategies intended to expand knowledge regarding mental illness and treatment. POLITICAL ACTIVISM a. Legislation strategies designed to prcmote rights STRATEGIES of mental health care recipients through federal and state statutes and regulations. d. Self-help strategies designed to promote mutual support and self-advocacy. 9- Coalition strategies designed to increase the priority of mental health through alliances with other constituencies. CONFRONTATION STRATEGIES e. Litigation strategies designed to prcmote legal rights through the court system. £. Confrontation strategies designed to advance rights through such means as public demonstrations, con­ sumer boycotts, etc. 103

confrontation strategies (items e and f). These two items are explicitly concerned with litigation strategies and confrontation strategies such as public demonstrations and consumer boycotts.

b. Stakeholder group differences on strategic approaches

Analysis of variance results relating stakeholder groups to strategic approaches cluster scores are shown in Table 19. The top line of the table reflects the views of the sample taken as a whole. The sample means indicate a preference for political activism strategies (mean cluster score 3.49). Public understanding and support strategies were somewhat less popular (4.65) and confrontation strategies consistently received the lowest ratings (5.79).

Even though every stakeholder group ranked public under­ standing/support strategies as their first or second choice, this cluster produced a considerable degree of variation among stakeholder groups. Parents evaluated these strategies more favorably than did recipients, academics, or rights advocates. Scheffe's test showed that both parents and community representatives were significantly more positive than academics and rights advocates toward strategies designed to promote public understanding and support. Additionally, the views of parents were significantly more favorable toward such strategies than were those of recipients. Service providers/professionals occupied a middle position.

Political activism strategies were ranked first by every stakeholder group except the parents. Though parents ranked political activism strategies a bit less favorably than their preferred public understanding and support strategies, Scheffe's test revealed that they were significantly less favorable toward political activism strategies than were academics, rights advocates and service providers/professionals.

Confrontation strategies were placed at the bottom of the list by every stakeholder group. Scheffe's test found only one significant between-stakeholder group difference. Recipients, the most positive group, were significantly more favorably inclined toward confrontation strategies than were community representatives, who had the lowest score of any stakeholder group. 104

TABIE 19 GENERAL STRATEGIC APPROACHES CLUSTER SCORES BY PRIMARY STAKEHOLDER GROUPS

Stakeholder Group Strategic Approaches Clusters Public Understand­ ing and Support Political Activism Confrontation Strategies_____ Strategies______Strategies

Total Sancle <■65 3.49 5.79 Recipients S.00(b)(c) 3.58(a)(b) 5.11(a) Parents 3.65(a) 3.97(a) 6.21(a)(b) Mental Health 4.56(a)(b)(c) 3.40(b) 6.08(a)(b) Professionals Rights Advocates 5.09(b) 3.32(b) 5.39(a)(b) Oomunity 4.06(a)(c) 3.68(a)

Analysis of Variance Results F*7.78, F*4.35, FW4.57 p <.01 p <.01 p <.01

Note: Entries are group mean rankings, i.e. the smaller the number, the more highly ranked were the issues within the cluster. ANOVA results refer to overall test of group differences. Postscripts refer to post hoc corparisons with Scheffe's test— for each general strategic approach (each oolurm of the table) groups that share at least one postscript are not sig­ nificantly different at the .05 level— e.g., with public under­ standing/support strategies, recipients

All of the stakeholder groups tended to evaluate politi­ cal activism strategies favorably and to provide rela­ tively negative appraisals of confrontation strategies. However, the stakeholder groups disagreed about the value of public understanding/support strategies. Service providers placed this strategy cluster in an intermediate position. Their response pattern listed political activism strategies first, then a substantial drop in preference to public understanding/support strategies, followed by another sizeable decrease to confrontation strategies. Parents and community representatives pro­ vided an alternative view. They grouped public under­ standing/support strategies and political activism strategies together as most favored strategic approaches. Recipients, rights advocates, and academics provided a third pattern of response. Members of these stakeholder groups placed public understanding/support strategies with confrontation strategies at the bottom of the list, leaving political activism strategies alone as the most meritorious approach.

Table 20 presents the mean ranking of each of the items comprising the general strategic approaches task for each stakeholder group. Though there is no evidence to contradict the cluster-based conclusions, several aspects of the table are worthy of mention. With the public understanding/support cluster, notice that recipients were favorably disposed toward public education strategies in spite of their relative antipathy toward the cluster as a whole. Also, observe that parents were especially enthusiastic about research and evaluation strategies. With political activism strategies, note that recipients were particularly strong in their support of self-help/self-advocacy strategies. Their mean ranking of 2.4 was the most positive score provided by any stakeholder group for any strategic approaches item. Rights advocates and academics were notably supportive of legislation strategies. Finally, the breakdown of the confrontation strategies cluster makes it clear that the explicit confrontation strategy item, calling for actions such as public demonstrations and consumer boycotts, was strongly rejected by the members of every stakeholder group.

Fi’nally, to summarize the viewpoints of parents and recipients with respect to general strategic approaches, several points can be made. Parent panelists were more supportive of strategies designed to influence public understanding than were recipients. In particular, they TABLE 20 GENHWL STRATEGIC APPROACHES m SCORES BY ISSUE CLUSTERS M B PRIMARY St’AK6feiJ3B( GROUPS

Strategic Approaches clusters KJBLXC UtOERSTNCINS N O SUPPORT POLITICAL ACTIVISM CONFRONTATION ______STRATEGIES______STRATEGIES______STRATEGIES b. c. h. a. d. g. e. f. Private Piijlic Research Sector Educ­ and Legis­ Self- Coali­ Uti- Confron­ Support ation Evaluation lation Help tion qation tation Stakeholder Groqp

Total Sample 5.1 4.0 4.8 3.2 3.6 3.7 4.8 6.8 Recipients 5.7(b)(c) 3.5(a) 5.8(b) 3.7(a) 2.4(a) 4.7(b) 4.0(a) 6 .2 (a)

Parents 4.9(a)(b)(c) 3.6(a)(b) 3.1(a) 3.4(a) 4.4(b) 4.1(a)(b) 5.3(a) 7.1(a) Mental Health 4.7(a)(c) 3.9(a)(b) 5.1(b) 3.4(a) 3.7(b) 3.2(a) 5.1(a) 7.0(a) Professionals Rights Advocates 5.6(b)(c) 4.4(a)(b) 5.3(b) 2.7(a) 3.7(b) 3.5(a)(b) 4.3(a) 6.5(a) Camunity 4.1(a)(c) 3.3(a) 5.8(b) 3.8(a) 3.3(a)(b) 4.0(a)(b) 5.6(a) 7.2(a) Representatives Acsdsnics 5.9(b) 5.0(b) 4.3(a)(b) 2 .6 (a) 3.7(a)(b) 3.4(a)(b) 4.5(a) 6 .6 (a)

Analysis of Variance Results F - 5.9, F - 4.5, F - 8.1, F - 2.8, P » 5.0, F - 4.2, F « 3.8, F « 2.1, p <.01 p <.01 p <.01 p <.05 p <.01 p <.01 p <.01 n.s Note: Entries are group mean rankings, i.e. the smaller the number, the more highly ranked was the strategy. ANOVA results refer to overall test of group differences. Postscripts refer to post hoc caparisons with Scheffe's test— for each strategic approach (each aolum of the table) grope that share at least one postscript are not significantly different at the .OS level— e.g., with itan b., private sector support, academics (b) are significantly different from ccmamity representatives (a)(c), but academics are not signifi­ cantly different fras parents (a)(b)(c). 107

favored research and evaluation strategies more than did recipients. These two groups provided roughly equivalent evaluations of political activism and confrontation strategies. Recipients, however, place more stock in self-help approaches than parents.

7. Strategy proposals

In the last section of the questionnaire, 48 specific strat­ egy proposals were presented for evaluation. The respondents were asked to rate each proposal in four different ways. The first task was to rate the impact of the proposal on the rights of the chronically mentally ill in the community. The second task was to judge the proposal's impact on the rights of other members of the community. Both of these impact judgments were measured with a five-point scale. A rating of ”1" indicated "very positive impact" and a score of "5" denoted a "very negative impact." The third rating task was to assess the feasibility of the proposal. The fourth task was to judge the proposal's overall merit, taking cognizance of the first three dimensions and any other relevant considerations. Again, a five-point scale was used for the third and fourth rating tasks, with a score of "1" representing the most favorable alternative. a . Clustering of strategy proposals

Factor analysis with principal components analysis as the method of factor extraction identified three meaningful item clusters. Together, these three factors accounted for 73.3% of the variance shared by the 48 merit ratings. Table 21 lists the items included in each cluster and presents the correlation of each item with each of the three clusters.

The first cluster consists of strategies that have been labeled civil liberties proposals. These items tend to reflect the value of proposals designed to protect the legal rights, or to increase the political or institu­ tional power, of the chronically mentally ill. The items that comprise the second cluster reflect a preference for concrete service proposals. In contrast to the self-help connotations of the civil liberties items, the proposals in this cluster are usually directed toward service providers or other nonrecipient members of the mental health community with the expectation that their activ­ ities will subsequently benefit chronically mentally ill individuals. The third cluster is composed of only two items. Labeled legal responsibility proposals, these 108

strategies concern the degree to which chronically mentally ill individuals should be held responsible for their behavior, including that which is criminal.

Three aspects of Table 21 are notable. First, immediately following the label of each cluster is an alpha statistic representing Cronbach's alpha. Alpha, used as an idex of scale reliability, measures the degree of intercorrelation among items. Second, examination of the Pearson correlation coefficients listed after each will reveal that each item is strongly correlated with the summary score for the cluster to which it has been assigned but is rather weakly related to the other two clusters. The cluster summary scores are again the average of all the cluster items.

Finally, note that only 24 of the 48 items are exhibited in the table. This is an artifact of an initital assumption of a priori clusters. Most of the a priori clusters clearly loaded onto one or another of the three derived factors. The operationalization of the cluster scores allowed no more than four items from each a priori cluster to be included in each of the derived factors. Thus, of the 24 items not included in Table 21, seven were significantly correlated only with the civil liberties cluster (items 1, 2, 22, 32, 34, 37, and 39). Another set of five were significantly correlated only with the service proposals cluster (items 11, 23, 24, 31, and 48). The items in both of these groups could have been included in their respective clusters without producing any changes in the results about to be reported. Additionally, four items were totally independent of the three clusters (items 7, 10, 15, and 38). Another collection of eight items were significantly correlated with both the civil liberties proposals and service proposals clusters. b. Strategy preferences as a function of stakeholder group membership

The mean scores for every item for each stakeholder group are catalogued in Appendix F-2. In general, the panelists, as a group, were decidedly positive about the vast majority of the strategy proposals. Taking the sample as a whole, the average merit rating for the 48 items was 2.24. Fourteen items (or 29%) received a mean score between 1 and 2 (recall that a "1" indicates "extremely high" merit and that a "2" reflects "high" merit). Only four items (or 8%) were rated with a score TABLE 21 THE STRATEGY PROPOSALS CLUSTERS: CORREUVTIONS BETOEEN ITEM SCORES « P CLUSTER SCORES i ii nr CLUSTER Civil Liberties Service Legal Responsibility Items Proposals Proposals Proposals I. CIVIL LIBERTIES PROPOSALS (alpha-.87) 3. Representation of recipients on advisory boards .60 .18 .09 4. Form coalitions with other political movements .62 .05 .12 8 . Legislation for statewide advocacy programs .58 .30 -.05 9. Attorney's fees to support legal advocacy .72 .18 .05 12. Utilize the experience of other social movements .71 .19 .03 16. Recipients access to mental health records .71 .01 .12 27. Fbrm coalitions with other disability groups .53 .18 -.02 28. Recipients participate in staff training .57 .20 .08 36. Legal right to refuse treatment, including medication .67 -.26 .09 41. Advocacy through grass roots political organizing .65 .26 -.02 42. Abolish involuntary civil caimitment .63 -.25 .15 45. Provide free legal aid .68 .23 .05 46. Grievance procedures for boarding hane residents .53 .28 .05 II. SERVICE PROPOSALS (alpha-.83) 13. Cover mental health/illness in public schools .20 .63 -.05 17. Develop a continuum of ccnmunity residences .11 .59 -.15 18. Use public education approaches to raise funds .09 .77 -.07 20. Increase tax incentives for business contributions .24 .72 .01 21. Research to identify residential alts, to hospitalization .18 .62 -.01 25. Hare case or resource managenent -.03 .70 -.14 33. Faster care programs to provide housing .05 .60 .07 40. Research in the biological bases of mental illness -.12 .65 -.21 44. Tax incentives to employers who hire CMI .27 .66 -.02 .LEGAL RESPONSIBILITY PROPOSALS (aloha-.82) 35. Hold mentally ill responsible for criminal behavior .12 -.05 .92 47. Abolish the insanity defense .06 -.13 .92

Note: Entries are Pearson correlation coefficients. 110

of 3 or less ("3" is the neutral response of "moderate" merit). The least preferred item (number 42: "abolish involuntary civil commitment") received a mean score of 3.70. In other words, the most negatively evaluated strategy proposal elicited a merit rating between "moderate" and "low."

In this context, then, stakeholder group differences are largely a reflection of relative preferences among alter­ natives that were regarded as attractive in an absolute sense. Even strategy proposals that were not highly regarded relative to the others were evaluated above the neutral point.

The analysis of variance results relating stakeholder groups to strategy proposal cluster scores are presented in Table 22. Once again, the F-ratio values indicate that there were significant stakeholder group differences in all three cases. The top line of the table describes the views of the entire sample. Strategies representing service proposals were the clear favorite (sample mean 2.00). Civil liberties proposals were also well liked (2.47), while legal responsibility proposals are distinctive due to their negative evaluation (3.20).

The respondents' favorable reaction to service proposals is reflected in the fact that the least supportive stake­ holder group, academics, assigned these proposals an absolutely positive score of 2.28. Parents were obvi­ ously the most enthusiastic group. Their summary score of 1.66 on service proposals represents the most favor­ able evaluation of any cluster of strategy proposals by any stakeholder group. Scheffe's test of all possible pairwise comparisons revealed that parents were signif­ icantly more positive than recipients and academics toward the service proposals.

The civil liberties proposals cluster proved to be a bit contentious. Two clear factions of stakeholder groups emerged. Recipients, rights advocates and parents favored these strategies, while service providers, academics and community representatives were relatively disinclined to endorse them. The results of Scheffe's test confirm this division.

The data appear to suggest that academics were the least enthusiastic stakeholder group for both the service proposals and civil liberties proposals clusters, and generally provided merit ratings that were substantially Ill

TABLE 22 STRATEGY PROPOSALS CLUSTER SPORES BY PRIMARY SIMWOWCH GROUPS

StaJceholder Group Strategy Proposals Cluster Scores Civil Libertiea Service Legal Responsibility Proposals Proposals Proposals

Total Sanole 2.47 2.00 3.20 Recipients 1.93(a) 2 .2 0 (b) 2.50(a) Parents 2.39(a) 1 .6 6 (a) 3.63(b) Mental Health/Social 2.72(b) 1.94(a)(b> 2.89(a) Service Professionals Rights Advocates 2.18(a) 2 .0 2 (a)(b) 3.68(b) Ccnmunity Representatives 2.54(b) 1.99(a)(b> 2.81(a)(b) Academics 2 .8 6 (b) 2.28(b) 3.56(b)

Analysis of Variance Results F - 14.76, F - 5.12, F - 5.92, p <.01 p <.01 p <.01

Note: Entries are group mean ratings. The smaller the number, the more positive the overall merit rating of the strategy. ANOVA results refer to overall test of group differences. Postscripts refer to post hoc caiparisons with Scheffe's test— for each strategy proposals cluster (each oolism of the table) groups that share at least one postscript are not significantly different at the .05 level— e.g., with service proposals, recip­ ients (b) are significantly different from parents (a), but re­ cipients are not significantly different from academics (b) or mental health/social service professionals (a)(b). 112

more moderate than the other stakeholder groups. For the five stakeholder groups other than academics, the average merit rating for the 48 items was 2.17, whereas the comparable score for academics was 2.58.

Of the three strategy proposal clusters, legal responsibility proposals was the third choice of every stakeholder group. Nonetheless, Scheffe's test identified some significant stakeholder group differences. Recipients and service provider/professionals were significantly more favorable toward this cluster than were academics, parents and rights advocates. The substantial divergence of recipients and rights advocates is especially noteworthy. Recipients provided a rating of 2.50, while the rights advocates' group mean was 3.68. These two stakeholder groups often expressed relatively similar views. In this case, however, recipients were the most positive stakeholder group and rights advocates the most negative. While recipients appeared to be willing to accept legal responsibility for their own behavior, including that which may be regarded as criminal, rights advocates seemed to feel that such proposals would harm the rights of the chronically mentally ill.

To once again highlight the distinctions between the perspectives of parents and recipients, it can be said that parent panelists were more favorably inclined toward service proposals than were recipients. While these two groups provided roughly equivalent ratings of civil libertarian proposals, they diverged once again with respect to strategies designed to equalize the legal responsibility of the chronically mentally ill and other citizens. While recipient panelists generally favored such approaches, they were rejected by parents on the panel. c . Relationships among the four rating dimensions for strategy proposals

As mentioned previously, respondents were asked to assess each strategy proposal not only on overall merit but on three other dimensions. These additional rating tasks involved assessment of each proposal's impact on the rights of the chronically mentally ill, impact on the rights of others in the community, and feasibility. These data may reveal whether the enthusiasm of a particular stakeholder group for a given cluster of strategy proposals was because they were particularly 113

impressed with the strategies' impact on the chronically mentally ill, or their impact on others, or the relative feasibility of implementing the strategies.

The analysis investigated the relationships among these three measures, and between these ratings and the overall merit scores, in two ways. First, it examined the pattern of mean differences between stakeholder groups. For instance, did the stakeholder groups that were relatively positive about service proposals strategies also regard them as comparatively feasible? Second, it inspected the correlations between these measures. For example, what was the degree of association between merit scores and ratings of the proposals' impact on the chronically mentally ill?

Every respondent was assigned one summary score for each of these three measures (impact on the chronically mentally ill, impact on others, and feasibility) for each of the three item clusters previously identified (i.e., service proposals, civil liberties proposals, and legal responsibility proposals). As described previously, an individual's score for the legal responsibility proposals cluster, for instance, is the average merit rating of the items which comprise the cluster. Summary scores for impact on the chronically mentally ill, impact on others, and feasibility were constructed similarly by averaging the scores on the appropriate measures across the items included in a cluster. Thus, a correlation between feasibility and impact on others, for example, is the correlation between two summary scores.

As previously mentioned, the merit score data revealed that the respondents were, in general, strongly enthus­ iastic about the strategy proposals presented in this section of the questionnaire. The average merit rating for the 48 items was 2.24. The respondents were even more positive in their judgments about the impact on the chronically mentally ill of the 48 proposals (mean rating 1.95). Judgments of the impact on others and feasibility of the strategy proposals were a bit more moderate; across the entire set of items, the mean ratings were 2.36 and 2.70, respectively.

Also recall that, taking the views of the sample as a whole, the merit scores uncovered a clear preference for service proposals. Civil liberties proposals and legal responsibility proposals were somewhat less favored, in that order. The scores for impact on the chronically 114

mentally ill show this same pattern. The ratings of average impact on the chronically mentally ill (IMCMI) for the service proposals, civil liberties proposals, and legal responsibility proposals were, respectively, 1.75, 2.10, and 3.14 (see Table 23). The impact on others scores (IMOTH) exhibit a slight deviation from this pattern. Service proposals were again the clear favorite (average rating of 2.19), while civil liberties proposals (mean score of 2.59) and legal responsibility proposals (mean score 2.61) were virtually indistinguishable. The feasibility (FEAS) ratings reflect a somewhat different pattern. Service proposals (mean score 2.61) were seen as the most feasible, but the legal responsibility proposals (mean score 2.71) and civil liberties proposals (mean score 2.85) have exchanged positions. However, note that the difference in feasibility among the three clusters of strategy proposals was judged to be small.

This review of the sample's aggregate responses seems to indicate that the impact on the chronically mentally ill, impact on others, and feasibility ratings, in general, follow the pattern of responses of the merit score data reported earlier. An examination of the results of these three rating tasks, broken down by primary stakeholder group supports this impression. Table 23 presents this information.

Generally speaking, stakeholder groups that assigned rela­ tively positive merit ratings to a strategy proposal cluster also regarded that cluster as having a relatively positive impact on the chronically mentally ill, as rela­ tively beneficial (or at least noninjurious) for other members of the community, and as relatively feasible.

Regarding the service proposals cluster, recall that Scheffe's test with the merit score data showed that parents were significantly more positive than were recip­ ients and academics. Scheffe's test revealed that parents were significantly more positive than recipients about these strategies' impact on the chronically mentally ill.With the impact on others scores, parents were significantly more positive than academics. With regard to feasibility of service proposals, parents were significantly more optimistic than were recipients and academics.

Stakeholder group differences that were revealed by the analysis of the merit ratings of the civil liberties proposals again were apparent with the other rating TABIE 23 SPORES FOR IMPACT-CHBCNICALLY MENIALLY ILL, IMPACT-CmERS AMI FEASIBILITY BY STRATEGY PROPOSALS CUJSTBS M P STOKBPIflBR SOUPS

Stakeholder Group Strategy Proposals Cluster Scares

Civil Liberties Proposals Service Proposals Legal Responsibility Proposals

IMCMI DOTH FEAS IMCMI IM3TH FEAS IMCMI IMCTTH FEAS

Total Sanple 2.10 2.59 2.85 1.75 2.19 2.61 3.14 2.61 2.71 Recipients 1.63(a) 2.25(a) 2.42(a) 1.97(a) 2.29(a)(b) 2.53(b) 2.46(a) 2.04(a) 2.45(a) Parents 2.16(b)(c) 2.49(a)(b) 2.67(a) 1.51(b) 1.93(a) 2.32(a) 3.56(b) 2.97(b) 2.91(a) Hvttal Health 2.31(b) 2.70(b) 3.00(b) 1.74(a)(b> 2.24(a)(b) 2.66 (a)(b) 2.8S(a)(b> 2.37(a)(b) 2.70(a) Professicnals Rights Advocates i.eaiaxc) 2.41(a) 2 .88(b) 1.74(a)(b) 2.16(a)(b) 2.71(a)(b) 3.49(b) 3.00(b) 2.71(a) Ccnuunity 2.11(b)(c) 2.62(a)(b) 2.92(b) 1.69(a)(b) 2.14(a)(b) 2.67(a)(b) 3.00(a)(b) 2.52(a)(b) 2.60(a) Representatives Academics 2.36(b) 2.82(b) 3.00(b) 1.86 (a)(b> 2.35(b) 2.69(b) 3.39(b) 2.80(a)(b) 2.83(a)

Analysis of Var­ iance Results P-13.92, F»7.38, F=7.57, F-3.98, F=2 .88, F-2.61, P=5.65, P=4.97, P=.89, p <.01 p <.01 p <.01 p <.01 p <.05 p <.05 p <.01 p <.01 n.s.

Note: IMCMI is impact on the chronically mentally ill; IMOTH is impact on others; FEAS is feasibility. Entries are group mean ratings. The smaller the number, the greater the impact (or the feasibility) of the strategies within the cluster. ANOVA results refer to overall test of group differences. Post­ scripts refer to post hoc comparisons with Scheffe's test— for each column of the table groups that share at least one postscript are not significantly different. 116

dimensions. Recipients and rights advocates clearly championed these strategies. Scheffe's test with the scores for impact on the chronically mentally ill showed that both recipients and rights advocates provided more favorable evaluations than did service providers and academics. Additionally, recipients were significantly more positive than were community representatives and parents. The impact on others data again reflected this familiar pattern. Both recipients and rights advocates were more positive than were service providers and academics. The feasibility ratings provided an inter­ esting change. Scheffe's test showed that recipients and parents were significantly more positive than were rights advocates, community representatives, academics, and service providers/professionals. Note that the usual alliance of recipients and rights advocates was broken here. Despite the value they attach to civil liberties strategies, rights advocates were relatively less opti­ mistic about the eventual implementation of these approaches, perhaps reflecting the same pessimism they displayed regarding their forecasts in section IB of the instrument.

The divergence of recipients and rights advocates was also obvious in their views of legal responsibility proposals. Scheffe's test with the ratings of impact on the chronically mentally ill revealed that recipients were significantly more positive than were academics, rights advocates, and parents. With the ratings of impact on others, recipients provided significantly more favorable evaluations than did parents and rights advocates. There were no stakeholder group differences concerning the feasibility of these strategies. Stake­ holder group differences in the evaluation of these strategies presumably revolve around differential assessments of their impact, not of their feasibility.

A correlational analysis supports the general conclusion of the investigation of stakeholder group differences in mean scores: by and large, the four response dimensions used to evaluate the 48 individual strategy proposals tend to vary together. Table 24 presents the correla­ tions of the impact on the chronically mentally ill, impact on others, and feasibility ratings with the merit scores for each stakeholder group for each strategy proposals cluster.

Note the substantial magnitudes of the Pearson correla­ tion coefficients. The correlations between the impact 24 CORRELATION OF MERIT RATINGS WITH IMPACT-CHRCNICALLY MH7TALLY ILL. IMPACf-OTOERS, ATOFEASIBILITY RATINGS BY STRATEGY PROPOSALS CLUSIHS AM) SEAKEHOIDER GROUPS

Stakeholder Group Strategy Proposals Cluster

Civil Liberties Proposals Service Proposals Legal Responsibility Proposals

DOG IMOTH FEAS DOG IMOTH FEAS PCM MOTH FEAS r/part.r r/part.r r/part.r r/part.r r/part.r r/part.r r/part.r r/part.r r/part.r

Total Sanole .85/.70 .70/.16 .55/.30 .83/.76 .54/.02 .44/.24 .83/. 63 .72/.27 .39/.22

Recipients .B3/.60 .75/.21 .63/.34 .92/.83 .78/.06 .59/.42 .85/.67 .63/-.10 .38/.03

Parents .84/.73 .69/.30 .53/.04 .78/.71 .51/.26 .36/-.19 .81/.75 .42/-. 22 .45/.21 Mental Health .83/.70 .63/.10 .33/.13 .78/.73 .39/-.02 .'24/. 22 .82/.67 .76/.41 .25/.33 Professicnals Rights .80/.71 .50/-.03 .52/.46 .86/.78 .52/-.05 .48/.34 .85/.66 .76/.40 .33/-.09 Advocates Comunity .80/.57 .78/.2S .80/.57 .81/. 70 .66/.14 .50/.33 .70/.13 .89/.77 .42/.27 Representatives Academics .86/.62 .75/.24 .46/.23 .69/.56 .31/-.06 .51/.22 .74/.61 .62/.14 .56/.50

Note: D O C is iapact on the chronically mentally ill; MOTH is inpact on others; FEAS is feasibility. Bitries to the left of the slash are Pearson correlation values measuring the relationship of that measure to the merit rating of that proposals cluster for that stakeholder g n x p (e.g., for re­ cipients and civil liberties proposals, the DOC-MERIT correlation is .83). Entries to the right of the slash measure the same correlation with the effect of the other two variables partialled out (e.g., for recipients and civil liberties proposals, the I K M - t B U T correlation, aontrolling for DOTH and FEAS, is- .60). 117 118

on the chronically mentally ill and merit ratings were particularly large. It appears that many of the respon­ dents interpreted the merit rating task as essentially equivalent to the task of assessing a proposal's impact on the chronically mentally ill.

Also observe that the impact on the chronically mentally ill and impact on others scores were both positively correlated with merit judgments. Additional analyses verified the finding that this observation implies: the two impact measures were positively correlated. In general, then, respondents did not perceive a conflict of interest between the chronically mentally ill and other members of the community in relation to most of the strategies. Strategies that further the interests of one group were seen as also benefitting (or not harming) the other.

In an attempt to determine the unique association of each of these three measures with the merit ratings, further analysis calculated the correlation of each measure with the merit scores for each strategy proposals cluster, partialling out the effects of the other two rating tasks. This allows us to discover, for example, whether the scores for impact on others were directly associated with merit judgments, or whether their relationship was determined by the fact that both were correlated with the ratings for impact on the chronically mentally ill. In other words, assuming that ratings of impact on others are not correlated with impact on the chronically mentally ill or with feasibility, what is the correlation between the impact on others and merit ratings? This information is also presented in Table 24.

The top line of each strategy proposals cluster chart supports an earlier interpretation of the overwhelming primacy of the impact on the chronically mentally ill ratings in determining the ratings of overall merit. Taking the sample as a whole, the values of the associations between impact on others and merit and between feasibility and merit were substantially reduced by the partialling out process, while the correlations between impact on the chronically mentally ill and merit lost little of their value.

The fact that the values of the correlation between impact on the chronically mentally ill and merit were not greatly reduced by the partialling out process means that judgments of a proposal's impact on the chronically 119

mentally ill exert a substantial and independent influence on evaluations of the proposal's merit. That is, it is possible to predict a respondent's merit ratings fairly well from his or her scores for impact on the chronically mentally ill. Conversely, the finding that the correlations between ratings of impact on others and merit and between feasibility and merit were reduced by the partialling out process means that relatively little additional predictive power is gained from these two variables. In other words, though a prediction of the respondent's merit score using all three of these variables is somewhat more accurate than a prediction based entirely on the impact on the chronically mentally ill ratings, the improvement gained by the addition of the impact on others and feasibility scores is not as large as might have been expected. The major exception to this pattern concerns community representatives' evaluations of legal responsibility proposals. In this case, impact on others was weighted more heavily than was impact on the chronically mentally ill in the formulation of merit judgments.

8. The two points of view: civil libertarian and service proponents

Panelists were classified as belonging primarily to either a civil liberties perspective or a services perspective. In order to be classified as proponents of the civil liber­ tarian perspective, respondents had to meet two criteria: (1) in Section 1A of the questionnaire, they must have judged autonomy issues as more important than service issues; and (2) in Section 2B of the questionnaire, they must have evaluated civil liberties strategy proposals more favorably than service proposals. Proponents of the service perspective fit the converse pattern, viewing service issues as more important than autonomy issues (in Section 1A) and evaluating service strategy proposals more positively than civil liberties proposals (in Section 2B).

Respondents placed in the mixed category met one of the criteria for membership in the civil libertarian group, but not the other. Using this procedure, 47 respondents (or 15.5% of the sample) were classified as civil libertarians, 181 (59.7%) were identified as service proponents, and 75 (24.8%) reflected a mixed viewpoint.

Table 25 presents these three perspectives as a function of primary stakeholder group identification. TABLE 25 DISTRIBOTION OF PANELISTS BY RIGHTS PERSPECTIVE FDR EACH STAKEHOLDER GROUP

Stakeholder Grouo Riqhts Perscecti ve Service Mixed Civil Proponent Viewpoint libertarian N Recipients 9(24.3%) 10(27.0%) 18(4B.6%> 37 Parents 37(86.0%) 4(9.3%) 2(4.7%) 43 rtental Health 55(67.9%) 21(25.9%) 5(6.2%) 81 Professional Rights Advocates 27(43.5%) 23(37.1%) 12(19.4%) 62 Cormunity Representatives 20(62.5%) 11(34.4%) 1(3.1%) 32 Academics 33(68.8%) 6(12.5%) 9(18.8%) 48

Total Sample 181(59.7%) 75(24.8%) 47(15.5%) 303

Note: Percentages refer to stakeholder groups; e.g.. 24.3t of recipients are service proponents. 121

The minority status of the civil libertarian view is under­ scored by the fact that individuals with this perspective comprised less than one-half of every stakeholder group. Service proponents, on the other hand, represented a majority of four stakeholder groups: parents, service provider/pro­ fessionals, community representatives, and academics. Signif­ icant numbers of civil libertarians have primary group iden­ tification as recipients, rights advocates, and academics. A large percentage of the civil libertarians have secondary stakeholder group affiliation as rights advocates. For instance, 18 civil libertarians have primary stakeholder group affiliation as recipients. Eleven of these individuals also claim secondary group membership as rights advocates.

Table 26 re.veals that placing respondents into these three categories (service proponent, civil libertarian, mixed) uncovers a strong and consistent pattern of opinion differ­ ences. Civil libertarians and service proponents provided equivalent evaluations of only four clusters of items (equity issues, entitlement concerns, degree of optimism/pessimism about the future, and extent of endorsement of general strategic approaches that emphasize political activism). Members of the two perspective groups expressed substantial disagreement in every instance in which the underlying elements of the civil libertarian and service perspectives were presented for evaluation. As is evident from the table, this includes autonomy issues versus service issues, confrontation strategies versus public understanding and support strategies, and specific civil liberties strategy proposals versus specific service proposals.

Before examining the 48 individual strategy proposals, it is important to note that the classification scheme employed here, though clearly a helpful heuristic device, probably overstates differences in the panel. This is true because the civil libertarian viewpoint was a distinctly minority perspective and because there was considerable sentiment among the panelists for both of these perspectives. Many civil libertarians expressed very favorable reactions to service proposals, and many service proponents exhibited civil libertarian leanings.

The responses of parent and recipient panelists represent best the dichotomy between civil libertarians and service proponents. Of the six stakeholder groups, parents had the strongest affiliation with the service proponent position (86%), while recipients were the least supportive of this general orientation (29%). Similarly, with respect to the TABLE 26 SCORES FOR ALL CLUSTERS BY RIGHTS PtKSBBLTIVE GROUPS

Section Rights Perspective Service Mixed Civil Analysis of Cluster Proponent Viewpoint Libertarian Variance Results

1A: Rights Issues Bjuity 6.35(a) 7.16(b) 6.60(a)(b) P=6.69, p<.01 Autonomy 6.39(a) 4.43(b) 3.99(b) F=103.36, p<.01 Services 3.14(a) 5.47(b) 7.17(c) F=175.98, p<.01 Entitlements 4.02(a) 4.82(a) 4.62(a) P=2.61, n.s. IB: Forecasts Optimisnv/Pessimisn 3.16(a) 3.28(a) 3.36(a) F=1.15, n.s.

2A: General Strategic Approaches Public CJnderstanding/SHDport 4.14(a) 5.16(b) 5.79(c) F*44.71, p<.01 Political Activism 3.65(a) 3.20(b) 3.33(a)(b) F=7.81, pC.01 Confrontation 6.31(a) 5.47(b) 4.30(c) F=39.13, p<.01 2B: Strategy Proposals Civil Liberties Proposals 2.72(a) 2.27(b) 1.85(c) P*44.47, p<.01 Service Proposals 1.84(a) 2.04(b) 2.63(c) F=32.00, p<.01 Legal Responsibility Proposals 3.26(a) 3.52(a) 2.51(b) P=7.25, pC.Ol

Note: Entries are group means. For rights issues and general strategic approaches, entries represent mean rankings, i.e. the smaller the number, the more highly ranked the rights issue (or the general strategic approach). For forecasts, the smaller the number, the more optimistic were the forecasts. For strategy proposals, the smaller the number, the more positive the impact rating of the strategies within the clusters. ANOVA results refer to overall test of group differences. Postscripts refer to post hoc comparisons with Scheffe's test— for each cluster (each row of the table) groups that share at least one postscript are not significantly different at the .05 level. 123

civil libertarian perspective, recipients were the most supportive of the six stakeholder groups, with almost half of them endorsing this view, while less than five percent of the parents could be said to align themselves with this position.

9. The strategies and the stakeholder groups

In general, it seems that stakeholder groups do tend to associate themselves with one of these two more general positions. The most important determinant of a stakeholder group's opinions is its composition by perspective, that is, the relative numbers of service proponents and civil libertarians that identify themselves as stakeholder group members. There are several ways to demonstrate this. First, Table 27 lists the five highest ranked strategies for each stakeholder group, along with the relative judgment of each strategy by service proponents and civil libertarians. (The scores for each item for each stakeholder group are presented in Appendix F - 2 . )

The two stakeholder groups of special interest to this study occupy unique and interesting positions. Those strategies most preferred by recipients reflect a strong support for the principles of self-help and, in general, greater control and representation in decision-making concerning their treatment. By contrast, parents show a clear preference for strategies designed to enhance the provision of more traditional professional services and expand the scope of such a system. The contrast between these two groups is perhaps best displayed by looking at those strategies receiving overall mean merit ratings which differed by more than one full scale point. The single strategy receiving the most divergent returns from these two groups was item 36 ("Develop the legal right of mental patients to refuse unwanted psychiatric treatment"). Recipients rated this strategy the most favorably (mean rating 1.8), while parents rated it the lowest in overall merit (3.6) of the six groups. Another strategy which separated parents and recipients by more than one full scale point was the proposal to abolish involuntary hospitalization. Recipients supported this idea (mean merit rating 2.52), while it was the most strongly rejected strategy by parents (mean merit rating 4.00). Additionally, these two stakeholder groups differed strongly in their support/rejection of the proposals to increase funds for the chronically mentally ill and to raise money by public education events such as telethons. These two proposals were supported by parents, but rejected by recipients. Further evidence of the divergence of viewpoints represented by these two groups can be found in the fact that, of the forty-eight TABLE 27 RIGHTS PERSPECTIVE RANKS OF THE TOP FIVE STRATEGIES FOR EACH STAKEHOLDER GROUP

Stakeholder Group Rights Perspective Rank

Item Service Civil RECIPIENTS PrProponent Libertarian 34. Increase enphasis on self-help 21 4 22. Increase recipient involvement in public education efforts 18 6 1. Develop patient-oontrolled alternatives to hospitalization 34 1 2. Increase recipient training in self-help and self- advocacy 11 5 3. Representation of recipients on advisory boards 37 9 PARENTS 17. Develop a continuum of ccnmunity residences 1 19 11. Partnership between business and mental health system 3 33 40. Research in the biological bases of mental illness 8 47 25. More case or resource management 2 43 14. Develop advocacy coalitions of all stakeholder groups 4 16 MENTAL HEALTH PROFESSIONALS 17. Develop a continuum of oonmunity residences 1 19 11. Partnership between business and mental health system 3 33 25. More case or resource management 2 43 14. Develop advocacy coalitions of all stakeholder groups 4 16 7. Treatment emphasis an rehabilitation rather than medical approaches 10 11 RIGHTS ADVOCATES 17. Develop a continuum of conmunity residences I 19 7. Treatment emphasis on rehabilitation rather than medical approaches 10 11 19. Develop legislative action oaimittees in advocacy groups 12 13 46. Grievance procedures for boarding heme residents 20 7 14. Develop advocacy coalitions of all stakeholder groups 4 16 COMJNITY RESIDENTS 23. Make greater use of naturally occurring resources 5 27 17. Develop a continuum of community residences 1 19 2. Increase recipient training in self-help and self- advocacy 11 5 14. Develop advocacy coalitions of all stakeholder groups 4 16 7. Treatment anphasis on rehabilitation rather than medical approaches 10 11 ACADEMICS 17. Develop a continuum of ocrmunity residences 1 19 25. Mare case or resource management 2 43 2. Increase recipient training in self-help and self- advocacy II 5 46. Grievance procedures for boarding heme residents 20 7 14. Develop advocacy coalitions of all stakeholder groups 4 16 125

strategies, only one could be placed in the top ten listing of both groups (e.g., item 29, "Develop job banks to provide flexible employment opportunities to the chronically mentally ill").

Table 28 records the correlation between the rank order strategy preferences of each stakeholder group and each perspective group. Each of these tables and the group composition information support the same general conclusion. Recipients were the most civil libertarian stakeholder group. Parents, service providers, community representatives and academics were basically service proponents. Rights advocates seemed to occupy a strategically central position. They were clearly more inclined to endorse the civil libertarian viewpoint than were members of the four service proponent dominated stakeholder groups, yet they were much less civil libertarian, and much more favorable toward service proponent strategies, than were recipients. TABLE 28 STRATEGY PROPOSALS: CORRELATION BETWEEN PERSPECTIVE RANK ORDERS AND STAKEHOLDER GROUP RANK ORDERS

Rights Perspective Stakeholder Group Service Proponent Civil Libertarian Recipients 19 .83 Parents 89 -.09

Mental Health Professionals 96 -.04 Rights Advocates 73 .38 Caimunity Representatives 84 .18 Academics 85 .15

Note: Entries are Spearman rank correlation coefficients. 127

V. Discussion

A. Review of Major Study Findings

PHASE ONE

In Phase One of this study, panelists, representing six major stakeholder groups, were asked to provide (a) forecasts regarding developments of the next 20 years likely to affect the fundamental rights of the chronically mentally ill in the community and (b) strategy proposals designed to protect and enhance such rights in light of those forecasts.

1. Forecast Themes

There was reasonably wide variation both within and between stakeholder classes regarding the subject areas they perceived to be of most importance as well as the degree and even the direction of change from present circumstances reflected in their forecasts. Nevertheless, several major forecast themes emerged. These themes have been organized into the following scenario outline:

a. Resource Crisis

Many factors will combine (and have already begun to do so) to reduce dramatically the resources available to meet the needs of the chronically mentally ill in the community over the balance of the century. Among others, these include economic factors (such as a depressed economy; inflation; soaring costs of health/mental health care; monetary policy; unemployment), political factors (such as the New Federalism proposed by the Reagan Administration); a government philosophy of social Darwinism; reduced national focus on social programs and mental health, to support an increased emphasis on national defense), and public attitudes (including antipathy toward the chronically mentally ill as a function of such factors as deinstitutionalization, increasing crime rates, and the traditional stigma of 128

mental illness). Escalating the resource crisis will be an increased need for services as a function of a growing prevalence of serious mental disability (in turn due to increased stress induced by technological complexity and to the declining adequacy of services for the chronically mentally ill) and intensified competition among disadvantaged groups for limited resources. b. Decline in Adequacy of Services

The overall thrust of the resource crisis (particularly the political factors) was seen as a major regression in national policy vis-a-vis the mentally ill. It was asserted by respondents, for example, that there will be a loss of federal leadership, reduction in standards and equity, and ultimately greater fragmentation, deterioration and confusion in the support system for the disabled.

The resource crisis will result in a major decline in the adequacy of the mental health care and treatment system, allied services, public entitlements and advocacy programs. Severely curtailed will be mental health services (in quality, quantity and scope), community support programs, SSI, SSDI, Food Stamps, Rental Assistance, Medicaid, Medicare, Vocational Rehabilitation, etc.

In addition to an absolute decline in human services, there will be continued (and probably intensified) differential discrimination against the mentally ill, both as individual human service workers try to avoid dealing with them and as laws and policies discriminate against them in favor of more politically powerful groups such as the elderly and the physically disabled.

Finally, it may be that the more non-professional, less costly self-help oriented programs will suffer disproportionately in relation to the more traditional and politically entrenched medically-oriented programs. c . Impact of Declining Services on the Mentally 111

As a consequence of declining services, a growing number of the chronically mentally ill will live on the edge of existence in the community. Many more will live in substandard boarding homes or the equivalent in segregated areas, receiving increasingly powerful psychotropic medication and little or no other services 129

or assistance. A growing number will become part of an emerging new community population group composed of "bag ladies," street people and, in general, the homeless. Greater numbers will become involved with the criminal justice system as current laws, which under certain circumstances "protect" the mentally ill from criminal prosecution, are abolished.

These dire developments will add fuel to public antipathy to the chronically mentally ill. This in turn will result in a further decline in equity with respect to community living opportunities, e.g., mainstream housing and employment opportunities. It will also precipitate a general retrenchment of civil liberties, promoting, for example, increased "criminalization" of deviant behavior, a trend toward broadening of involuntary commitment criteria and, in general, presuure to reinstitutionalize the "chronically mentally ill" either in state hospitals or nursing homes.

The forecast of reinstitutionalization was second only to the prediction of a "resource crisis" in frequency of mention.

2. Strategy Themes

Even in the best of times the cause of patient rights has received little popular endorsement. Given the backdrop of this highly complex and pessimistic scenario, it is clear that no simple or ready-made solutions present themselves. Nevertheless, several important strategic considerations or directions appeared with some frequency in the proposals submitted by the panelists in Phase One.

a. Political Activism

The most popular antidote to this bleak future was political activism— to develop a more sophisticated political consciousness, to promote a stronger political organization on behalf of the mentally ill, and to take direct and effective political action. The main thrust of this political strategy is the formation of coalitions both with traditional mental health concerns (mental health professionals, legal advocates, family members, and mental health consumers),with other minority/handicapped groups, and also possibly with broader social movements such as the peace and environmental movements. Respondents suggested that these coalitions will have to work together around issues 130

of mutual concern to elect sympathetic political representatives and fashion legislative agendas supportive of their interests.

While the courtroom has, in recent years, been the major focus of patient rights efforts, our respondents suggest that future battles are more likely to take place in the halls and chambers of Congress, and increasingly in state and local legislatures and councils. (Legislation was mentioned as a strategy of choice by a margin of five to one over litigation by members of the panelists in Phase One). Additionally, a variety of nonlegal strategies were proposed. b. Public Education Campaigns

Many panelists, particularly those representing the "community" and "parent/family member" stakeholder categories suggested the need for greater emphasis on public education. Proposals in this area typically outlined a mass media approach such as a national telethon with the objectives of eliminating myths and stereotypes regarding mental illness and raising money to provide needed treatment, advocacy and research. In addition to providing education to the general public, many proposals also pointed out the need to improve educational efforts directed at elected political representatives for the purpose of enlisting their support. Several panelists also suggested improving educational efforts in the public school system to provide children with information about mental health/illness and contribute to the prevention of serious mental disability. c . Enhancement of Relationships with Existing Private Sector Resources

In order to rectify possible reductions in public mental health services and patient rights advocacy programs, a number of panelists suggested the need to develop alternative resource providers. Examples included churches, civic organizations, business and industry, and private foundations. These organizations may need to help subsidize mental health care and, in some instances, directly provide goods and services, such as food, clothing and shelter, to the chronically mentally ill in the community. 131

d. Alternative Service Arrangements

Many panelists, particularly recipients, outlined alternative mental health service arrangements. Such models were often seen as especially cost-effective as well as protective of individual rights. Mutual self-help and self-advocacy strategies by both mental health care recipients and parent/family members were often proposed. Some support was demonstrated, particularly within the "mental health care recipient" group, for the establishment of patient-controlled community residential alternatives to hospitalization. There also was considerable support across stakeholder groups for increased emphasis on psycho-social rehabilitation approaches to community, treatment and concurrently less emphasis on more medically oriented treatments that often rely largely on chemotherapy. e. Fiscal Strategies

Some panelists attempted to deal directly with the projected cutback of public resources by suggesting strategies designed to generate financial resources for the chronically mentally ill. Several of these proposals took the form of tax incentives either to individuals or businesses, to provide housing and employment possibilities for the mentally disabled. More ambitious schemes suggested the implementation of a national mental health insurance program or a guaranteed annual income for all citizens. Examples of other fiscal strategies included patient-owned and operated businesses, private foundation and business donations, and the increased use of legislation providing for attorney's fees to support litigation on behalf of the disadvantaged. f. Consumer Participation

One strategic approach particularly endorsed by former mental health care recipients was an increase in the role played by mental health consumers in mental health treatment decisions and policymaking. For example, many recipients strangly supported the representation of mental health care recipients and their families on decisionmaking, advisory and funding bodies. 132

PHASE TWO

The Phase Two survey distilled the results of the initial study phase into a series of fixed-answer-option questions calling for a variety of ratings and rankings from panelists. The results of this task are presented below.

1. Importance of Rights Issues

Panelists were presented with ten major rights issues for the "chronically mentally ill" in the community and asked to rank them from 1 (high) to 10 (low) in terms of their importance for this population for the next 20 years.

As a group the panel appeared to believe that the most important rights issues for the chronically mentally ill will be those related to the availability and quality of services (mental health, generic, and advocacy) as well as the availability of public entitlements. Issues related to personal autonomy and choice (e.g., freedom to receive mental health treatment in the least restrictive alternative setting, freedom to participate in mental health treatment decisions, and freedom from involuntary hospitalization) received mixed to low support from the panel. The panel seemed, however, to consider equity with regard to community living opportunities (e.g., housing, employment, and education) the least important of the ten issues.

When the results of this task were examined in terms of the responses of each of the six stakeholder groups, there was a high degree of consensus among five of the six groups regarding the primary importance of rights related to the availability and quality of services and public entitlements. Recipients, however, expressed a quite different set of priorities. They ranked freedom from involuntary hospitalization as the most important rights issue, followed in order by the availability and quality of advocacy services and equal employment opportunities. None of the other five groups included any of these three issues among their top three. Furthermore, as a group, recipients ranked the availability and quality of mental health services as the least important of the ten rights issues, whereas it was ranked first for four of the groups and second for the rights advocates. Here the viewpoint of recipients was most strongly in contrast to that of parent and family members, 90% of whom ranked the availability and quality of mental health services among the top three most important rights issues. Also, as a group, parents and family members ranked freedom from involuntary hospitalization as the least important of the ten rights issues. 133

2. Forecasts

In this section of the Phase Two questionnaire panelists were presented with a list of 40 possible future developments and were asked to rate them on the degree of change expected in the next 20 years and the impact that such change would have on the "chronically mentally ill" in the community. Although negative forecasts(i.e., those developments predicted to have a negative impact on the "chronically mentally ill") outnumbered positive forecasts by a ratio of two and one-half to one, the degree of negative impact of most of the developments was generally not judged to be great.

The major negative forecasts seem to reaffirm the concern seen in Phase One for adequate public funding of mental health services. The two major positive trends for the rights of the "chronically mentally ill" were seen as the expanded role to be played by recipients as advocates on behalf of themselves and the increased influence of parent/family groups on mental health policymaking.

One of the most frequently cited negative forecasts seen in Phase One— that of reinstitutionalization— was not confirmed in Phase Two. Panelists, for example, did not predict significant changes regarding the pace of deinstitutionalization, the rate of involuntary hospitalization, or the extent of public pressure to hospitalize the mentally ill.

Few differences were found between the stakeholder groups with respect to the forecasts. Of the six groups, parent/family members were the most optimistic about the future. That is, they tended to predict developments having a positive impact on the "chronically mentally ill" more often than did the other groups. Patients' rights advocates were the most pessimistic of the six groups, most often predicting events that would have a negative impact on the "chronically mentally ill."

3. Merit of Major Strategic Approaches

Panelists were presented with eight general strategic approaches to rights enhancement and asked to rank them in order of their overall merit for protecting and advancing the rights of the "chronically mentally ill" over the next 20 years. As can be seen, legislative strategies were regarded as the most meritorious, followed by self-help/self-advocacy and the formation of coalitions. In general, the results of 134

this task seem to support the Phase One data suggesting the need to increase political activism among mental health advocates in order to influence the legislative process. Panelists were less enthusiastic about the value of litigation as a rights protection approach. As a group, however, panelists viewed confrontational strategies, such as public demonstrations and boycotts, as being the least attractive of the eight strategic options.

The general strategy preferences for each of the six stakeholder groups indicated that there was a reasonably strong consensus among the six groups concerning the preferred strategic approaches. Legislation, for example, was ranked in the top three by all six groups and there was also widespread support for self-help, coalitions, and public education.

Parent/family members did diverge slightly from the typical pattern of strategy preferences. They ranked research and evaluation strategies as the most meritorious, the only stakeholder group to place this approach among the top three.

4. Strategy Proposals

In the last section of the questionnaire panelists were presented with 48 brief strategy proposals. They were asked to rate each proposal in terms of its impact on the "chronically mentally ill" as well as on others in the community and to assess its feasibility and overall merit. The results showed a consistently high correlation between the ratings of merit and each of the other three measures. That is, those strategies that were rated high in merit were also rated as having a positive impact on both the chronically mentally ill and others in the community, and as being reasonably feasible. Conversely, those strategy proposals that were rated as having low merit were projected to have a negative impact on both the chronically mentally ill and others in the community and were rated "low" with respect to the feasibility of adequate implementation. Because of the high correlations just described, only the more global measure of "overall merit" will be used in reporting the results which follow.

In order to better understand the underlying nature of the strategy preferences of the panel, a factor analysis was performed using the responses from panelists regarding the importance of major rights issues and the ratings of merit for the strategy proposals. This analysis revealed two competing "rights perspectives" or primary orientations 135

toward rights protection and advancement for the chronically mentally ill in the community. One of these orientations has been termed a "service perspective" and the other a "civil liberties perspective."

Those panelists adopting a service perspective placed the highest priority on meeting perceived mental health needs. They emphasized what might be regarded as "clinical rights," i.e., those designed to improve the availability and quality of mental health services. The prototype of such a right might be considered the right to treatment.

For those panelists reflecting a civil liberties perspective the primary concern was with protecting individual liberty and personal autonomy. They placed an emphasis on rights intended to limit involuntary or coercive treatment. The archetypal example of such rights is perhaps the right to refuse treatment.

The service perspective was clearly the dominant viewpoint of the panel with 60% of those completing the survey favoring this orientation. Only 15% of the panel held a civil liberties perspective, while 25% of the total panel did not clearly prefer either viewpoint.

Although some support for the civil liberties perspective was seen among the rights advocates and academic panelists, recipients were the only stakeholder group significantly endorsing this viewpoint. The service perspective was more prevalent in each of the other five stakeholder groups. Of those five groups, the parent/family panelists were the most strongly service oriented, with 86% of this group favoring the service perspective.

To illustrate the differences between these two perspectives, those strategies preferred by panelists holding a service perspective seem to reflect a concern for developing and managing resources to assist in the rehabilitation of the chronically mentally ill in the community. Again, the objective of such strategies seems to be the enhancement of "clinical rights" or rights to adequate treatment and rehabilitation in the community.

Those strategies favored by panelists supporting a civil liberties perspective clearly represent a difference in values regarding the preferred methods to advance the rights of "chronically mentally ill" persons in the community. The strategies most enthusiastically endorsed by panelists with this viewpoint tend to emphasize the need for recipients to 136

have greater control over the types of services received and the conditions under which those services are administered. Such strategies seem to underscore the values of personal autonomy and self-determination.

To further characterize these two competing viewpoints, the strategy proposals that resulted in the greatest conflict between the alternative rights perspectives. The most contentious proposals were those suggesting the abolition of involuntary civil commitment and the promotion of the right to refuse treatment. These strategies were rejected by panelists sharing a service perspective and endorsed by those favoring the civil liberties orientation. The strategies which most polarize the two rights orientations seem to suggest that some of the sources of conflict between the two viewpoints may originate in their differing outlooks regarding the acceptance of unwanted or involuntary treatment, the nature of mental illness, the degree to which patients' rights advocacy represents part of a broader social and political movement, and the extent to which those regarded as mentally ill should be viewed as responsible citizens, accountable for their behavior, including that which may be criminal.

To this point, the discussion of strategy proposals has attempted to highlight the differences between proponents of the two competing rights perspectives. The vast majority of the strategy proposals presented in the survey were, however, enthusiastically supported by representatives of both viewpoints. Despite the different orientations of the two groups, there appeared to be a sizeable middle ground upon which the representatives of the alternative viewpoints could agree. These "consensus strategies" seem to reflect a shared recognition by the proponents of both perspectives of the importance of political activism, self-help/self-advocacy, and alternative treatment approaches to the conventional medical model.

B. Summarizing the Stakeholder Group Perspectives

One of the initial assumptions of this study was that stakeholder groups would view the various issues and questions posed by this project in different ways. Although much can be learned by contrasting the perspectives of civil libertarians and service advocates, clearly the six stakeholder groups included in the study present unique and important positions to be considered. These positions are 137

summarized below with particular emphasis being given to the recipient and parent/family groups. These two groups were of special interest to the study and their contrasting positions taken in response to the two surveys have reinforced their prominence.

Current or former recipients of mental health services expressed a singularly unique and distinctive viewpoint. They were clearly the most civil libertarian members of the study panel. They ranked "freedom from involuntary hospitalization," "the availability of advocacy services" and "equal employment opportunity" as the most important rights issues for the chronically mentally ill in the community. In particular, the importance they gave to the issue of involuntary hospitalization was in sharp contrast to the other five stakeholder groups. Similarly, their relative lack of concern for the availability of mental health services was unique among the study panel. The message from this collection of recipients seems to be that they are more concerned about being free from unwanted treatment than improving the availability of mental health services. Here they are clearly adherents of the civil libertarian and, perhaps even more strongly, the anti-psychiatry position.

With respect to forecasting future events that might have an effect on the chronically mentally ill in the community, recipients did not take an extreme position. Overall, they tended to be somewhat pessimistic, more often predicting development that would have a negative impact on the chronically mentally ill. This, however, was the general result shared by the other groups as well. Thus, their disagreements with the other panelists on such matters as the most important issues and the preferred strategies do not appear to result from differing views of the future.

Recipient panelists seem to share the panel's conviction that political activism is the preferred strategy to advance patient rights in the future. They were less supportive of public education approaches than parent/family panelists. Their relative lack of enthusiasm for such strategies may be related to the image that can be portrayed by public education campaigns. Parent/family groups would seem to endorse the presentation of recipients as handicapped in much the same way as a person who suffers from a disease such as cancer. Recipient panelists would clearly reject this image, seeing themselves as victims of an oppressive system. They want less help from others and greater opportunities to help themselves. This finding was reinforced by the enthusiasm shown by recipients for patient-controlled alternatives to 138

hospitalization and other self-help and self-advocacy approaches. Further evidence of the political activist approach exemplified by recipient panelistis can be seen in their strong endorsement of abolishing civil commitment, forming coalitions with peace and environmental groups, and the right to refuse treatment. Similarly, they are strongly opposed to increases in research into the biological basis of mental illness and telethons to raise money for mental health.

In general, recipient panelists strongly advocated that they be given greater control over their own lives and, in particular, over their interactions with the mental health system. Recipients were more likely than other respondents to view mental health consumers as responsible citizens, capable of determining their own needs, advocating on their own behalf, and fully participating in their own rehabilitation. In fact, their responses suggest that they would prefer not to be viewed as recipients or consumers, but as participants.

With respect to their ranking of the importance of rights issues and general strategic approaches, parents and family members of mental health care recipients were clearly service proponents as defined by this study. In fact, the parent sub-panel had the greatest percentage of service proponents of any stakeholder group. Thus, they were in sharp contrast to the civil libertarian positions adapted by recipients. Parents, in fact, viewed the availability of mental health services as the most important rights issues. They considered freedom from involuntary hospitalization to be the least important of the ten rights issues.

Further evidence of the role of parents as service proponents can be seen with respect to the general strategy preferences of the six stakeholder groups. Parents were, for example, the most supportive of research and evaluation strategies intended to improve understanding of mental illness and treatment. Their support for such approaches was most in contrast with the views of recipients and community representatives who viewed research and evaluation strategies as relatively less important.

In several important instances, the more specific strategy preferences of parents also served to cast them as service providers. Parents, for example, included among their favored strategies developing community residential programs, investigating the biological basis of mental illness, and expanding case management services. Similarly, as previously 139

noted, parent panelists were strongly opposed to the idea of abolishing civil commitment and the right to refuse treatment — both hallmarks of the civil libertarian view.

A strict typecasting of parents as pure service proponents must, however, be tempored somewhat. In many cases, parent panelists tended to make positive judgments "across the board." Their view of the future was more optimistic than any of the six stakeholder groups included in the study. They were enthusiastic for a number of civil libertarian stategies; indeed the major reason a large majority of parents were classified as service proponents is that their reaction to service strategy proposals were even more favorable. For parents, civil liberties are clearly of secondary importance. They view mental illness as a disease and seek its treatment for their family members. In this way, they hope to reverse the tension and suffering that has been created in their families.

Not surprisingly, mental health or social service providers/professionals were, in some ways, the prototype service proponent group. This was particularly apparent in their evaluations of strategy proposals. Nonetheless, their views of rights issues and general strategic approaches were somewhat more moderate than might be expected; with several notable exceptions, they favorably evaluated many of the more libertarian proposals.

Patients' rights advocates occupied an intermediate position, although they were the least optimistic of the six groups regarding their view of the future. They were, perhaps surprisingly, much more closely aligned with the service proponent perspective than were recipients. At the same time, their views were more similar to those of recipients than were the opinions of any other nonrecipient stakeholder group.

Community representatives and academics or researchers were, on the whole, mainstream service proponent groups. Academics provided decidedly moderate responses throughout the questionnaire. Particularly in their evaluations of the strategy proposal items, academics were notable for their rather temperate enthusiasm. The responses of community representatives did not reflect the conventional thinking that persons living in the community are opposed to the integration of mental health care recipients. 140

C. Conclusions and Implications

1. Future trends

Panelists in this study suggest that without additional intervention there is likely to be a further deterioration of the rights of the chronically mentally ill over the balance of this century. Considering the present scope of neglect, discrimination and abuse suffered by this population, it would seem that even a moderate retrenchment of rights would significantly intensify the deprivation that they now experience. Much of the pessimism associated with predictions of the future seemed to reflect concern about the adverse effects of our nation's general economic climate. Panelists seemed to assume that the rights accorded this vulnerable population are largely a function of the benevolence of society and that as times become tougher, the good will of the general populace, or at least its leaders, tends to decline. This relationship has been noted by Friedman (1981) who wrote:

In relatively prosperous times, we as a society have the luxury of being generous. Knowing that the concerns of potentially powerless and under-represented persons are likely to be slighted, we help to insure that their basic needs are being met by accepting the equation of those needs with basic rights. However, when times are rough and everyone feels needy, the mentally handicapped, like other minority groups, may see their basic rights shrivel and even the value of their lives put at issue. (p. 46)

Faced with reductions in public entitlements, mental health, and supportive services, the chronically mentally ill will be forced to compete with other minority and handicapped groups for ever-shrinking resources. This competition was seen by panelists as having the most dire consequences for the mentally ill of all projected developments. Clearly, this population would not fare well in a contest with other more politically powerful and socially acceptable constituencies. As one indication of the relative vulnerability of this group, Tringo (1970) found the mentally ill to be the least preferred by the general public of 21 disability groups.

In many cases, the panel's prediction about the future seemed to reflect projections of current issues and trends rather 141

than fundamental departures from present practice. In partic­ ular, many panelists expressed concern about the effects of proposed government policies such as decreased federal spending for social programs, block grants to the states, and the abolition of various federal regulations. A number of panelists, for example, stated that they expected conditions for the chronically mentally ill to become much worse in the near future and then to improve over the balance of the century as such policies are reversed.

One important issue — that regarding the policy and standards used for involuntary civil commitment — drew mixed forecasts in the study. Wexler (1983) has discussed the concepts of "tight" and "loose" commitment criteria. When the criteria for involuntary hospitalization are tightened, few people are subject to civil commitment. In turn, when such criteria are loosened, more people are involuntarily hospitalized. He has suggested that the current trend is to loosen or broaden civil commitment criteria and has proposed that in addition to mental health professionals, "legislators too may find the costs of overcommitment more palatable than those of undercommitment" (p. 7). Although the responses to Phase One of this study appear to forecast the loosening of civil commitment standards, this conclusion was not supported by the results of Phase Two.

Another issue seemed to result in differing opinions in the two study phases. While in Phase One many panelists seemed to predict a criminalization of the mentally ill, the forecast was not strongly supported in Phase Two. This may, however, be a trend that has already begun. Teplin (1984) reported a recent study which showed that, for similar offenses, mentally disordered persons have a significantly greater chance of being arrested than those who are not mentally ill.

Of the six stakeholder groups, it was interesting to find that the parent/family representatives were the most opti­ mistic about the future as it pertains to the rights of the chronically mentally ill in the community. Their relative optimism may be a result of their initial success in organizing parent/family groups across the country. They clearly view themselves as an important force in future decisionmaking in this area.

In fact, the panel as a whole predicted increased involvement on the part of both parent/family groups and recipients and regarded their participation as one of the most positive developments of the next 20 years. With diminished financial 142

support for legal and other formal advocacy programs, these less costly alternatives may become increasingly important (Freddolino, 1983 ). Here again there are already indications of the validity of this forecast. In addition to the early success and enthusiasm of parent/family groups just alluded to, recipients have also been effective in organizing numerous self-help groups. Some ex-inmate groups have also shown signs of potential political power and the development of what Anspach (1979) has referred to as "identity politics." As an example of this, the banning of electroconvulsive therapy (ECT) in the city of Berkeley, California was orchestrated largely by ex-inmate activists (see "Summary and Analysis," Mental Disability Law Reporter, November-December, 1982).

Those who suffer from discrimination and neglect may have a unique understanding of its effects and a valuable kinship with others who have endured similar fates. Although they may not be able to secure their rights without help, their involvement may be essential. Frederick Douglass, a black abolitionist, recognized the important role of the oppressed in obtaining social justice. Speaking more than 100 years ago on the need for blacks to take part in their own liberation from slavery, he asserted that:

the man who has suffered the wrong is the man to demand redress...the man STRUCK is the man to CRY OUT....It is evident that we must be our own representatives and advocates, not exclusively, but peculiarly— not distinct from, but in connection with our white friends. [author's emphasis] (as quoted in Bennett, 1966, p. 149)

The increased involvement of primary stakeholders such as recipients and parent/family members may be an important force in countering projected cutbacks in services both through their roles as alternative service providers and as potentially influential advocates on their own behalf. This issue will receive more attention in a later section of this chapter dealing with strategy issues. 143

2. Rights issues

With the exception of recipients, there was consensus among the stakeholder groups regarding the primary importance of the availability of mental health services, public entitle­ ments and generic services. Because of the tremendous concern for these issues, it appears that future rights activity will likely focus heavily on ensuring the provision of these services and entitlements. The recent case of Mental Health Association of Minnesota v. Schweiker (1982) brought to defend the right of chronically mentally ill persons in the community to receive certain public benefits, may well be a harbinger of things to come in this area.

This case blocked an attempt by the Social Security Administration to deny disability benefits to chronically mentally ill persons who did not display overt symptomatology. A recent review of the literature related to vocational capacity supported the finding in this case by showing that psychiatric symptomatology is not a valid indicator of a person's ability to function in the workplace (Anthony & Janson, 1984). Thus, whether or not a person actually displays psychiatric symptoms seems to be irrelevant to decisions about the ability of a person to work or, alternatively, to receive benefits because they are unable to work.

Because of the primary importance attached by most stake­ holders to services and entitlements, it appears that the pendulum may swing away from further expansion of rights related to autonomy and self-determination (i.e., a civil libertarian perspective) to a focus on meeting perceived mental health and community living needs. For example, it would seem that challenges to professional authority and discretion in treatment matters, except in the most egregious of situations, will meet with increasing resistance. Here again there are already signs of this trend in several recent Supreme Court decisions upholding professional judgment in treatment decisions at the expense of patient autonomy (i.e., Addington v. Texas, 1979? Parham v. J. L., 1979). It would not be supnsing, however, to see continued pressure for some key rights highly valued by the more civil libertarian advocates. Perhaps the best example of such a right would be the right to refuse treatment. Because of the enormous value accorded this right by organized ex-patients, it is an issue which is not likely to disappear.

Recipient panelists placed "freedom from involuntary hospital­ ization" at the top of their priority list of rights issues. 144

This is consistent with the goal of many ex-inmate activist groups who seek the abolition of all forced psychiatric treat­ ment, including the practice of involuntary civil commitment. For many such activists their opposition to involuntary hospitalization results from their own hospital experiences which they regard as harmful rather than helpful. However, a recent review of studies assessing patient satisfaction with psychiatric services (Kalman, 1983) concluded that, "a broad variety of psychiatric patients, receiving a broad range of psychiatric treatments, are pleased with their care" (p. 53). Even many persons who were involuntarily committed reported positive attitudes about their hospitalization. In a review of quantitative research related to patient attitudes toward mental hospitalization, Weinstein (1979) found, perhaps not surprisingly, that involuntary patients were less positive in their attitudes toward their hospitalization than voluntary patients. In a related article, Weinstein (1982) concluded that, "The evidence indicates that the defenders of mental hospitals have more accurately portrayed the views of patients than have the critics" (p. 137).

The level of concern expressed by recipient study panelists on the issue of freedom from involuntary hospitalization was in striking contrast to the results of patient satisfaction studies. Clearly, there are significant numbers of ex-patients who feel very strongly about the issue of involuntary hospitalization and who would question the validity of such studies, given the environment of most mental hospitals. They stand in vehement opposition to the views of those who suggest that involuntarily hospitalized patients will later be thankful for the treatment and confinement imposed upon them (e.g., Stone, 1975).

The two stakeholder groups having the most divergent ordering of rights issues were recipients and parent/family members. Although traditionally the tension surrounding the discussion of patients' rights issues has been associated with the conflict of ideologies espoused by civil libertarian attorneys, on the one hand, and mental health professionals on the other, future conflicts may be most heated between ex-inmate activists and parent/family groups. According to this data, both of these groups are likely to become more important in patients' rights activities, and yet their priorities are, in many ways, in opposition. Their ability to co-exist and, perhaps, even work together on some issues may prove to be a significant determinant of the success of future patients' rights advocacy efforts. 145

The viewpoint of recipient panelists tended to be quite distinctive among the six stakeholder groups. Repeatedly, as a group, they were in conflict not only with parent/family panelists and mental health service providers, but with the patients' rights advocates as well. In many instances, the position of those regarding themselves as advocates was closer to the viewpoint of service providers than to the preferences of recipients. Recipient activists have com­ plained loudly and often that those who presume to be advocates for the interests of mental health care recipients, in fact, do not represent their wishes (Chamberlin, 1979; Zinman, 1980). Writing on the future of mental health advocacy, ex-inmate activist Judi Chamberlin (1980) has stated, "The great danger is that advocacy will become a mere catch-phrase more useful for assuring the public that the rights of 'mental patients' are being protected, but mainly serving to assure the continuation of the current mental health system" (p. 53). The results of this study seem to support this concern, and challenge advocates to reconsider their alliances.

3• Strategies

There has been some debate recently concerning the general approach to patients' rights advocacy that might be most successful given the changing social and political climate. Brown (1982), for example, has stated that an activist approach based on a general strategy of confrontation with the mental health system will be required to advance and protect the rights of mental health consumers. One of the predominant tactics of this approach would be the use of class action and test case litigation directed at the mental health system. Paschall and Eichler (1982) have argued that such an approach, while effective in the 60s and 70s, is doomed to failure in the budget-cutting and politically conservative climate of the 80s. They propose that the patients' rights movement must increasingly adhere to a strategy of cooperation and collaboration with traditionally competing and antagonistic forces. They insist, for example, that patients' rights advocates must cultivate a more positive working relationship with mental health service providers. In particular, they propose that "cooperation between staff members in the service system and advocate coalitions is essential if hard-won legal and administrative changes are to continue to be implemented" (p. 120). These advocate coalitions, in turn, must represent the interests, insofar as possible, of all advocates rather than continuing to rely primarily on the work of mental health attorneys. Paschall and Eichler suggest that such coalitions should 146

involve consumers, family members, mental health service providers, and interested citizens, as well as attorneys.

In general, study panelists seemed to endorse the general strategy of seeking increased cooperation among advocate groups and promoting a better working relationship between advocates and mental health care providers. The objective of these new relationships would seem to be the enforcement and protection of past victories and, to a much lesser degree, the establishment of additional rights.

Panelists seemed to suggest that the future success of the patients' rights movement will depend upon the ability of the various stakeholder groups to work collaborativelv on the numerous issues for which they appear to share concern. Particular enthusiasm was seen for the general approach of working together in coalitions to establish a legislative agenda backed up by political activism. This collaborative model, oftentimes utilizing volunteer support, is one which has proven to be effective in dealing with a variety of problems (e.g., Neighborhood Watch, Mothers Against Drunk Driving). In a recent book, Hunt and Paschall (1984) predict that such groups will continue to proliferate on national and local levels and that they will find alternative sources of funding enabling them to influence legislation, policy and administrative regulations.

Mental health coalitions have been formed and utilized with some success in the past and several continue to operate effectively. In Washington, D.C., a coalition of such groups as the National Association of State Mental Health Program Directors, the National Council of Community Mental Health Centers, the National Mental Health Association, and the Mental Health Law Project have worked together on such major legislative efforts as the Mental Health Systems Act (Scallet, 1980a). According to Byrne (1980) this coalition works together not only to influence Congressional staff, but to arrange testimony before committees, develop legislative networks among their constituencies, and organize letter-writing campaigns to members of Congress.

Successful mental health coalition models have also been implemented at the state level. Minnesota appears to be a leader in this area. Patients' rights advocates, parent/ family members, mental health professionals and recipients formed the Mental Health Advocates Coalition of Minnesota (MHAC) in 1976 in response to mutual concerns about the adequacy of mental health services for the chronically mentally ill in the state (Schmidt, 1977). Currently the 147

coalition operates a community-based treatment program for the chronically mentally ill (Sharing Life in the Community), publishes a nationally circulated newsletter, offers a speaker's bureau, conducts an anti-stigma campaign using radio, television and newspaper coverage, offers a variety of self-help support groups, and directs a well organized and aggressive legislative campaign. Because of the relative longevity and success of this coalition and its ability to involve a diversity of stakeholders, MHAC should serve as a model for other states wishing to initiate such coalitions in the future.

Although this study suggests that those groups interested in protecting the rights of mental patients may be most effec­ tive by banding together to defend those rights in the legislative arena, clearly this approach will face many hurdles. One problem to be faced is the complex and shifting governmental system and the seemingly ever-changing cast of characters who occupy governmental posts. While some gains have been made at the federal level in past years (Foley & Sharfstein, 1983), the incumbent Administration has attempted to move mental health policy back to the state level. In the process, attempts to forge a national policy on patient rights and advocacy has been temporarily halted.

The study has also shown that ideological differences, particularly on some issues, continue to run deep between some stakeholder groups and are likely to inhibit the development of strong coalitions. Many of the organized recipients, for example, regard involuntary hospitalization and forced medication as policies to which they are fundamentally and unalterably opposed. While they may find some support for this position within the ranks of legal advocates, their stance on these issues will frequently collide with the perspectives of mental health professionals and members of parent/family groups. If these recipient activists are to be involved in more mainstream coalitions organized around the pivotal issues of service availabililty and entitlements, they may have to moderate their position on such issues. Conversely, more mainstream coalitions may want to consider some of the important issues that are high on the agenda of recipient groups, such as self-help/advocacy and patient-controlled alternatives to hospitalization.

In a recent article discussing the so-called psychiatric will, Szasz (1983) commented on the ideological conflict that this study has characterized as a clash of perspectives between those emphasizing the quality and availability of mental health services and those placing primary importance on individual autonomy. In his opinion: 148

For those who believe in psychiatric illness, psychiatric treatment is a "good." For those who believe in individual liberty, personal responsibility is a "good." Unfortunately, the effort to maximize one of these goods sometimes conflicts with the effort to maxi­ mize the other. It is dishonest to pretend that we can solve this dilemma. But though we cannot solve it, we can resolve it, by making a moral choice and assuming responsibility for its consequences. (p. 346)

As Szasz suggests, those concerned with the rights of mental patients must acknowledge the genuine conflicts that exist. But, given the cost-conscious, budget-cutting environment that exists today and will likely continue for some time, failure to reach some mutually agreeable compromise between adherents of the competing rights perspectives will greatly diminish the interests of both groups and, of course, ultimately the rights of those they seek to assist. Perhaps a relationship between recipients and other stakeholders can be established, based on their shared concerns, which will later permit resolution of such high priority issues for recipients as involuntary hospitalization and the right to refuse treatment.

In addition, it may be necessary to consider aligning with other disability groups in a coalition. Coalitions with other handicapped disability groups, while offering the advantage of greater strength in numbers, will also face the troublesome task of overcoming competitive tendencies. As Soskin (1980) has noted:

Often one disability group accomplishes its self-interest at the expense of another group. Unfortunately, some specialized interest groups fail to understand the need for co­ operation and establishment of national civil rights principles to apply to all fellow handicapped persons. (p. 69)

Although the formation of coalitions consisting of either mental health groups or more broadly of advocates for the handicapped present formidable challenges, the vast majority of the panel suggested that such coalitions will offer rewards large enough to warrant significant effort in the years ahead. 149

Coalitions require a certain degree of shared concern. Those persons concerned about the rights of the chronically mentally ill should be encouraged by the fact that this data suggests many areas of relative agreement among stakeholder groups regarding strategic options. The major points of disagreement (e.g., the abolition of involuntary hospitalization and the right to refuse treatment) seem to reflect a negative evaluation of the more extreme civil libertarian proposals by service proponents. On the other hand, civil libertarians seem to join those stakeholders who were characterized as service proponents in their support of many service and treatment proposals. In particular, such strategy proposals as increasing training in self-help and self-advocacy, emphasizing rehabilitative rather than medical model approaches, and the concepts of coalitions and networking were strongly endorsed by representatives of both viewpoints. Efforts to build bridges between the various stakeholder groups might do well to begin with these strategic options.

The results of this study also suggest that the rights of mental patients are influenced by a host of factors extending well beyond the domains of legislation and litigation. Econ­ omic and social policies, public opinion, and the results of research and evaluation efforts are among the many variables which interact to either advance or inhibit such rights. As such, those who seek to promote the rights of the chronically mentally ill in the community must direct their activities to these many fronts. For example, there was good consensus among the panelists involved in this study that much more needs to be done in the area of public education. Baron (1981) has discussed two general strategies for changing public attitudes toward the mentally ill in the community. Collaborative strategies seek to involve both community care advocates and community residents and businesses in a joint process of education and attitude change. This approach is in contrast to structural strategies in which communities are pressured to change by social, legal, and media approaches employed by community care advocates— a more confrontational style. Both strategies are in use today and little or no research has been done to compare the effectiveness or ulti­ mate impact of these alternative approaches. Until more rigorous research is done, this study would seem to advise the use of more collaborative strategies for improving public attitudes toward the mentally ill. Public forums, for example, offer the advantage of involving the many stakeholders in a cooperative examination of community attitudes and practices regarding the mentally ill and an 150

opportunity to work together toward a mutually agreed upon and lasting solution. The results of this study also suggest that community representatives are not always in opposition to attempts to promote the rights of the mentally ill, nor do they always see such rights as antagonistic to their own interests.

The high levels of support shown by study panelists for self-help and self-advocacy as well as the projected increased involvement of recipients in determining their mental health care seemed to suggest that whatever strategies are employed to defend or advance the rights of mental patients, it is essential that recipients be integrally involved in all phases of planning, implementation and evaluation. As Irving Blumberg, President of the International Committee Against Mental Illness, has observed:

There is little doubt that the failure of the mental health constituencies to "get their act together" and to work more closely with con­ sumer forces accounts in no small measure for the failure to make more significant and rapid progress in meeting the needs of the mentally disabled. (as quoted in Byrne, 1980, p. 620)

Recipients may take on a variety of roles including those of advocate (Willets, 1980), public educator (Lovejoy, 1979), and self-help group leader/facilitator. The value of self- help groups, especially given the resource-poor scenario projected by this study, was underscored by Gartner and Riessman (1982) who wrote:

Few developments in recent years have as far- reaching potential for mental health services as does the self-help phenomenon. The mental health services network is strained by growing and more diverse demands for services at a time of limited fiscal resources.... Self-help becomes a way to expand human services quanti­ tatively by reaching more people, and qualita­ tively by making people more independent and interdependent. (p. 635)

To the extent that these data are amenable to generalization, respondents appear to take the view that the patients' rights movement may be forced to adopt a more defensive posture in the years to come. Increased effort will be necessary just to prevent the loss of past victories. It will be a time of rethinking priorities and, perhaps, of having to make some 151

difficult and painful choices. It will also be a time requiring the establishment of new partnerships, perhaps in some cases between historical enemies and competitors.

Scallet (1980a) has identified three stages of mental health law. The first phase is characterized by the use of litiga­ tion as a major strategy. In the second phase, litigation is recognized as a limited tool and the emphasis is placed on legislative and administrative implementation. The third and final phase of mental health law, according to Scallet, is the "institutionalization" of rights for the mentally dis­ abled— a time when such rights become an accepted reality.

It would seem from this study that the patients' rights move­ ment is now moving into the second phase of mental health law. As such, we are not likely to see major new rights carved out, but rather strategies will be focused on consolidation of past victories. In order to protect rights that have been previously granted it will be important to establish and defend mental health rights protection and advocacy systems. The need for such systems has already been recognized by the President's Commission on Mental Health (1978). In addition, the Department of Health and Human Services (1980), after reviewing the needs of the chronically mentally ill, also proposed the funding and implementation of state level advocacy systems. Several scholars and researchers have proposed the necessary characteristics and design of such programs (Fitzpatrick, 1981; Human Services Research Institute, 1982).

Projected cutbacks may make government-financed legal programs and advocacy programs located within departments of mental health particularly vulnerable. The possible demise of such groups could have the effect of increasing the importance of volunteer groups such as recipients and parent/family advocates (Freddolino, 1983).

On the thirtieth anniversary of the Universal Declaration of Human Rights, then-President Carter stated, "The American people want the actions of their government both to reduce human suffering and to increase human freedom" (as quoted in Laqueur & Rubin, 1979, p. 326). These also are the twin goals of the patients' rights movement. Rights can and will be used to provide needed services and entitlements to the chronically mentally ill— a strategy designed to reduce human suffering. Rights also can and will be used to defend the personal liberty and dignity of the chronically mentally ill— a strategy designed to promote human freedom. To the extent that these two strategies collide, the overall 152

interests of this population will suffer. As Sadoff (1980) has suggested, it may be that the success of this movement:

lies in all groups working together to promote and advocate the best interest of the patient, not particular interests such as medical or legal. Perhaps through mutual understanding and education we can share our concerns and arrive at a more optimal, comprehensive ap­ proach rather than continuing to battle. We must keep in mind that it is the patient we are concerned about and not our own profes­ sional or personal interests. (p. 54)

This study has exemplified the high levels of compassion and commitment shared by those wanting to promote the rights of the mentally ill. In the years ahead the patients' rights movement will face new and perhaps bigger challenges. If all groups can unite behind the importance of the task before them, the future may be a little brighter for those they seek to assist. References

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Members of the Study Panel

Appendix A lists individuals who served as members of the study panel. The list includes only those people who granted permission for their name and organizational af­ filiation, if any, to be acknowledged in this report. Organizational affiliations are provided simply to assist in identifying the individuals. There is no implication that the individuals necessarily reflect the viewpoints of their organizations. The numerals 1 and 2 following an individual's name indi­ cate participation in Phase 1 and/or Phase 2 of the study. Michael C. Abbett (1) Jack Beveridge (1,2) Mental Health Advocates Coalition Arizona Department of Health Services of Minnesota Phoenix, Arizona Minneapolis, Minnesota Joseph J. Bevllacqua, PhD (1) David L. Aden (2) Virginia Department of Mental Health Citizens Commission on Human Rights and Mental Retardation Boston, Massachusetts Richmond, Virginia

Margaret Allen (1) 0. Joy Black (2) Austin, Texas E.A.S.E. Tucson, Arizona Beth Allen (2) Mental Health Advocates Coalition Irving Blumberg (1,2) of Minnesota International Committee Against Mental St. Paul, Minnesota Illness New York, New York Hon. Debra Anderson (2) South Dakota House of Repre­ Elizabeth M. Boggs, PhD (1,2) sentatives Hampton, New Jersey Sioux Falls, South Dakota Terazie S. Bohrer (2) Sally J. Andrade, PhD (1,2) Mental Health Association of Maryland President, Center for Applied Bowls, Maryland Systems Analysis, Inc. Austin, Texas Leslie E. Borck. PhD (1,2) Westchester Self-Help Clearinghouse Eugene Aronowltz, PhD (1) Westchester Community College Commissioner, Westchester County, Valhalla, New York Department of Community Mental Health Martha L. Boston, JD (2) White Plains, New York Austin, Taxes

Judith S. Banes (1,2) Valerie J. Bradley (1,2) Mid-Bergen Community Mental President, Hunan Services Research Health Center Institute Sergenflald, New Jersey Boston, Massachusetts

Richard C. Baron (1,2) Kathleen Brailu (1,2) Matrix Research Institute Long Island Rational Council Philadelphia, Pennsylvania Federation of Organizations for the New York Stats Mentally Disabled Ellen Bassuk, MD (2) Queans Village, Naw York Harvard Medical School Chestnut Hill, Massachusetts Jarry Dridgti (1,2) Concerned Citizens for Mental Kathleen Becker (1,2) Health, Inc. Mental Health Advocates Coalition Oklahoma City, Oklahoma of Minnesota St. Paul, Minnesota 172

Ann H. Britton, JD (1,2) Bess E. Center (1) University of Akron School Alliance for the Mentally 111, Inc. of Law Savannah, Georgia Akron, Ohio Daniel Chandler, PhD (2) Phil Brown, PhD (1,2) Sacramento County Division of Mental Department of Sociology Health Brown University Sacramento, California Providence, Rhode Island Beth Taylor Cieslinski (1) Sheldon Brown (2) Citizens Commission on Human Rights Canoga Park, California Boston, Massachusetts

Terry Brown (2) John Clausen, PhD (2) Governor's Advocacy Council for University of California Persons with Disabilities Berkeley, California Raleigh, North Carolina Zenia Cleigh (2) Albert D. Buford, III, JD (1,2) San Diego Tribune Center for the Public Interest San Diego, California Menlo Park, California I. Douglas Cochran, JD (1,2) Shirley Burghard, RN, OSL (1,2) South Carolina Department of Mental Constructive Action Newsletter Health Syracuse, New York Columbia, South Carolina

Nell C. Bush (1,2) Dorothy Cockrell, LCSW (2) Kalamazoo Citizens for Action Montgomery County Council in Mental Health Rockville, Maryland Kalamazoo, Michigan Rod Coffman, PhD (1) James J. Callahan, Jr., PhD (2) Pittsburgh, Pennsylvania Levinson Policy Institute Brandeis University Albert Colon (1,2) Waltham, Massachusetts Sacramento County Mental Health Advisory Board Frank Carmago, LCSW (2) Marysville, California Mission Mental Health Center San Francisco, California Susan A. Comiskey (1,2) University of Pittsburgh Doug Cameron (1,2) Pittsburgh, Pennsylvania Austin, Texas James H» Cook, Sr. (1,2) Sam R. Carapanella (1) Mental Health Advocates Coalition of Great Falls, Montana Minnesota Red Wing, Minnesota Paul J. Carlin, PhD (1,2) Deputy Commissioner, Vermont Phebe U. Cooke (2) Department of Mental Health National Alliance for the Mentally 111; Waterbury, Vermont Families Unite for Mental Health Haverford, Pennsylvania The Rev. Harry Carlson (1,2) Calvary Lutheran Church Rio Linda, California Thomas F. Cooper (1,2) Elizabeth R. Davey (2) Commissioner, Newaygo County Democratic Research Staff, Michigan Newaygo, Michigan House of Representatives Lansing, Michigan Judith A. Cooperberg (2) Mental Health Association in Clara Davis (2) Los Angeles County Concerned Citizens for Central Islip Van Nuys, California Hauppauge, New York

Katherine Corbett (2) Meredith Davis (2) Disability Rights Education and Western Interstate Commission for Defense Fund, Inc. Higher Education Berkeley, California Boulder, Colorado Jan C. Costello, JD (2) Ellen Colom Deacon (1,2) Youth Law Center PAVE San Francisco, California Howard, Ohio

Dian Cox (1,2) Gloria DeCuir, ACSU (1,2) Mental Health Association in Virginia Department of Mental Health Texas and Mental Retardation Austin, Texas Richmond, Virginia

Janet L. Coye (1) Arlene DeSchepper (1,2) Director, Office of Recipient Care, Action, Share, Support Rights, Michigan Department Edwardsburgh, Michigan of Mental Health Lansing, Michigan Sheryl Dicker, JD (1,2) Developmental Disabilities Law Project Dianne F. Cross (1,2) Arkansas Legal Services Support Center Personal Advocacy Unit, Georgia Little Rock, Arkansas Department of Human Resources Atlanta, Georgia Park Elliott Dietz, MD, MPH (1,2) University of Virginia, School of Law Don H. Culwell (1,2) Charlottesville, Virginia Reclamation, Inc. San Antonio, Texas Jerry Dlncln (1,2) Thresholds David L. Cutler, MD (2) Chicago, Illinois Oregon Health Services University Portland, Oregon Anne Foreman Don (1) Illinois Alliance for the Mentally 111 Mare Czyzewski (2) Skokie, Illinois Division of Mental Health and Mental Retardation Service Paul Dorfner (1,2) Topeka, Kansas Vermont Liberation Organization Johnson, Vermont Marion S. Damick (1,2) United Mental Health Board Nancy Downes (1,2) . Pittsburgh, Pennsylvania Recovery, Inc. Laurel, Maryland Hun. T. Ross Duckett (1) Patricia A. Ferris (2) Chair, House Mental Health Com­ La Frontera mittee Tucson, Arizona Oklahoma State House of Repre­ sentatives Barbara K. Finesmith (1,2) Mustang, Oklahoma Client Advocacy Program, Wisconsin Department of Health & Social Services Patricia A. Duncan (1,2) Madison, Wisconsin Concerned Citizens for the Men­ tally 111 Michael S. Finkle (1,2) Yukon, Ohio Threshold - Alliance for the Mentally 111 Bethesda, Maryland George M. Ebert (1,2) Mental Patients' Alliance of Daniel Billings Fisher, MD, PhD (2) Central New York Cambridge, Massachusetts Sterling, New York Cerard J. Fitzpatrick, PhD (1,2) Mary Ann Ebert (2) Department of Politics and Public Affairs Sterling, New York University of Miami Coral Gables, Florida Carol Eblen (2) Mental Health Association Hon. Jeremy Fogel (1,2) Honolulu, Hiwaii Santa Clara County Municipal Court San Jose, California Donna S. Elbrink (1,2) Mental Health Association Ugo Formigonl, MD (1) Uaycross, Georgia Andrew McFarland Mental Health Center Springfield, Illinois JoAnn Elenbaas (1,2) Psychiatric Alternatives Alliance Linda Frith (1,2) Traverse City, Michigan Austin Texas

Hon. Esther Eskens (2) William Fry (1,2) Wyoming House of Representatives Patients' Rights Office, Riverside Evanston, Wyoming County Mental Health Service Riverside, California Sue E. Estroff, PhD (2) Department of Social and Adminis­ Louis L. Frydman, PhD (1,2) trative Medicine School of Social Welfare, University of University of North Carolina Kansas Medical School Lawrence, Kansas Chapel Hill, North Carolina Sascha Carson (1,2) Margaret Fahrner (2) Alliance for the Mentally 111 of San Division of Mental Health Services Diego Little Ruck, Arkansas San Diego, California

Samuel C. Farrar (1,2) Harold B. Carwin, JD (1,2) Friends and Families of Adult Community Mental Health Law Project Mentally 111 East Orange, New Jersey Fort Collins, Colorado Richard Gentry (2) Jean Gumerson (2) Northside Community Mental Health Oklahoma City, Oklahoma Center Tampa, Florida Trevor R. Hadley, PhD (1,2) Office of Mental Health, Department Linda K. George, PhD (2) of Public Welfare Department of Psychiatry Harrisburg, Pennsylvania Duke University Medical Center Durham, North Carolina Jutta Hagner (2) American Psychological Association Carol Giardina (2) Washington, D.C. Mental Health Board, Mental Health Association Charles P. Hall, Jr. (1,2) Gainesville, Florida School of Business Administration Temple University Ronald Cibson (1,2) Philadelphia, Pennsylvania Pittsburgh, Pennsylvania C. Brent Hall, PhD (1,2) Faye J. Girsh, EdD (1,2) University of Aukland San Diego, California Aukland, New Zealand

Harold H. Goldman, MO, PhD (1,2) Courtenay M. Harding, RN (2) Langley Porter Institute Department of Psychiatry, Yale School San Francisco, California of Medicine New Haven, Connecticut Neal Goldsmith, PhD (2) Mental Health Policy Research Elizabeth Harris (2) Program, School of Urban and Family and Individual Reliance (FAIR) Public Affairs San Antonio, Texas Carnegie-Mellon University Pittsburgh, Pennsylvania Mary Ann Harvey (1,2) Legal Center for Handicapped Citizens William R. Grace (1,2) Denver, Colorado Center for Urban Encounter Minneapolis, Minnesota Maxine Hatcher (1,2) Department of Psychology, University of Green Door, Inc. (1) South Florida Washington, D.C. Tampa, Florida

Dianne Greenley, JD (1,2:) Ann Hathaway (2) Center for Public Representation Oklahoma Health Planning Commission Madison, Wisconsin Oklahoma City, Oklahoma

John H. Grelst, MD (2) Sondra Heilman, RN (2) Department of Psychiatry, Uni­ Massachusetts Mental Health Center versity of Wisconsin Boston, Massachusetts Madison, Wisconsin Jared Hermalln, PhD (1,2) Melanie S. Griffin, JD (2) JFK CMH/MR Center & Hahnemann University . Trenton Psychiatric Hospital Philadelphia, Pennsylvania West Trenton, New Jersey Stanley S. Herr, JD (1,2) Gwen Iding (2) South Orange, New Jersey Mental Health Association of Florida St. Petersburg, Florida Virginia A. Hiday, PhD (2) Department of Sociology, North Mareasa R. Isaacs (2) Carolina State University Alpha Center Raleigh, North Carolina Bethesda, Maryland

Jono Hildner (2) Vivian Isenberg (1,2) Department of Human Resources, Advocates for the Mentally 111 Clackamas County Enclno, California Marylhurst, Oregon Tecla Jaskulskl (1,2) Dorothy Holmes (1,2) National Association of Counties Mental Health Advocates Coalition Washington, D.C. of Minnesota Red Wing, Minnesota Dorothy L. Jefferson (1,2) Friends and Families of the Mentally Elizabeth C. Holmes (1) Disabled; Mental Health Advisory Board Mental Health Association in Riverside, California Oklahoma County Oklahoma City, Oklahoma Iredell Jenkins, PhD (1,2) University of Alabama - Emeritus Penelope Hommel (1,2) Tuscaloosa, Alabama International Center for Social Gerontology Louise Jensen (1,2) Ann Arbor, Michigan Texas Mental Health Association Austin, Texas Joan F. Houghton (1,2) National Institute of Mental Bill Johnson (1,2) Health Advocates Office, Fergus Falls State Rockville, Maryland Hospital Fergus Falls, Minnesota Laurence D. Houlgate, PhD (1) Philosophy Department, California Carmen Acosta Johnson, PhD (2) Polytechnic State University Citizens for Human Development San Luis Obispo, California Houston, Texas

Evelyn Husar (1,2) Charles Johnson, JD (1,2) Friends and Family of Adult Men­ Idaho Legal Aid Services tally 111 Pocatello, Idaho Fort Collins, Colorado Dale L. Johnson, PhD (2) Pamela S. Hyde, JD (2) Department of Psychology, University Ohio Legal Rights Service of Houston Columbus, Ohio Houston, Texas

Joann Hyle (2) James Dorr Johnson, JD (1) Mental Health Association of Montana Legal Services Association Southeastern Pennsylvania Warm Springs, Montana Philadelphia, Pennsylvania James R. Johnson (1,2) Boyd M. Krout, HD (2) Patient Advocacy Program, Univer­ Harbor/UCLA Medical Center, Depart­ sity of San Diego Law Institute ment of Psychiatry San Diego, California Torrance, California

Steven Kane (2) Timothy G. Kuehnel, PhD (2) Wisconsin Mental Health Office UCLA/Neuropsvchlatric Research Center Madison, Wisconsin Camarillo State Hospital Camarillo, California Miriam Karlins (2) University of Minnesota Richard Kushi (1,2) Minneapolis, Minnesota Los Angeles County Department of Mental Health Jonathan Keck, PhD (2) Los Angeles, California Missouri Department of Mental Health H. Richard Lamb, MD (1,2) Jefferson City, Missouri University of Southern California, Department of Psychiatry Joan C. Kennedy (1*2) Los Angeles, California Family and Individual Reliance (FAIR) Jerry Larke, PhD (2) Austin, Texas Oswego Hospital Mental Health Division Oswego, New York Gayla Oldham Keovn (2) Director, Protection & Advocacy Philip Leaf, MD (1) Division, Department of Public Yale University, Department of Psychiatry Advocacy New Haven, Connecticut Frankfort, Kentucky Stephen Leff, PhD (2) Marie Klllilea (2) Harvard Medical School Johns Hopkins University School Somerville, Massachusetts of Hygiene & Public Health Baltimore, Maryland Nadine M. Leiker (2) Texas Department of Mental Health/ Robert Thomson Kinscherff (2) Mental Retardation City College of the City Uni­ Austin, Texas versity of New York New York, New York Alan M. Lester (1,2) Washington, D.C. Martin Kotler (2) Chairman of the Board, Macro Michael Levine, MD (1,2) Systems, Inc. Harter Medical Corporation Silver Spring, Maryland Corona Del Mar, California

Eugene Kowalczuk, JD (1,2) Laura M. LeUinn (1,2) Legal Aid Bureau, Mental Retarda­ New Jersey Division of Mental Health tion Project Advocacy Baltimore, Maryland Trenton, New Jersey

Morton Kramer, ScD (1) James A. Lewis (2) Johns Hopkins University School Mental Health Association of Tennessee of Hygiene & Public Health Franklin, Tennessee Department of Mental Hygiene Baltimore, Maryland James A. Levis, JD (2) Kathleen A. Maloy, JD (2) Helena, Montana Legal Services of South Central Tennessee Tullahoraa, Tennessee Pamela Leyhe (2) Department of Social Services/ Allen Markman (1,2) Medicaid Program Project Release Jefferson City, Missouri Bayside, New York

Robert P. Liberman, MD (2) Richard C. Marsh, PhD (2) Rehabilitation Medicine Service, Kern Regional Center Brentwood VA Medical Center Bakersfield, California Los Angeles, California Harold A. Martin, Jr. (1,2) Paul Litwak, JD (1) Friends of the Psychologically Handi­ New York State Office of Mental capped in Greater New Orleans; National Health Alliance for the Mentally 111 Albany, New York New Orleans, Louisiana

Lorence A. Long (1,2) James Martinez (2) LaGuardia Community College Virginia Department of Mental Health Long Island City, New York and Mental Retardation Richmond, Virginia Ronald K. Lospennato, JD (2) Developmental Disabilities Advo­ Harold E. Mavrltte, MD (1,2) cacy Center Los Angeles County Department of Mental Concord, New Hampshire Health Los Angeles, California Katherine Lower, PhD (2) Bryn Mawr College - Emeritus Alan McCoy (2) Newton Square, Pennsylvania Auatin-Travls County Mental Health/ Mental Retardation Harriet Lowery (1,2) Austin, Texas Pittsburgh, Pennsylvania William J. McCullough, JD (2) Thomas F. Luce (2) Attorney General's Office Holistic Health Center Hartford, Connecticut Montpelier, Vermont Peg McCusker (1,2) Matthew J. Lynch, Jr. (1,2) On Our Own Delaware Department of Justice Baltimore, Maryland Wilmington, Deleware Harold L. McPheeters, MD (1,2) John F. Magoolaghan, DPA (I) Director, Mental Health and Human Ser­ Smithtown. New York vices, Southern Regional Education Board Atlanta, Georgia Lorraine Makl (1) Peninsula Advocates for the Men' Karen Meador, JD (2) tally 111 (PAMI) Legal Aid Society of Cincinnati Nordland, Washington Cincinnati, Ohio

Judy A. Malone (2) Denis Mee-Lee, MD (1) Austin, Texas Department of Health, Mental Health Division Honolulu, Hawaii Martin Meiznec (1,2) Lanny J. Morrison (2) ReLatives and Friends Group, Macro Systems, Inc. Norwalk Silver Spring, Maryland Seal Beach, California David W. Moulder (1,2) Alma Zito Menn (2) Nashville, Tennessee Director, Office of Community Support, Diamond Head Health Carol T. Mowbray, PhD (1,2) Center Department of Mental Health Honolulu, Hiwaii Lansing, Michigan

Vanessa Merton, JD (2) Ronald G. Nathan, MD (1,2) New York University Law School Southern Arizona Mental Health Center Clinic Tucson, Arizona New York, New York Alice K. Nelson, JD (2) Lynda F. Michelson (1,2) Tampa, Florida Fort Lauderdale, Florida Scott H. Nelson, MD (1,2) Barbara A. Mickey (2) Commissioner of Mental Health, State of Mental Health Association In Pennsylvania Maui County Harrisburg, Pennsylvania Ualluku, Hawaii Noel Nesbitt, RN, PhD (1,2) Caroline Miller (2) President, Support Systems Unlimited Public Member, Committee on Pro­ St. Paul, Minnesota fessional Standards, American Psychological Association John G. Nesbo (1,2) Albany, New York Commissioner, Toole County Shelby, Montana Elaine Egolf Miller (1,2) Oasis Fellowship, Inc. D. Ford Nielsen, DDS (1,2) Eagle, Michigan San Antonio, Texas

Jaclyn Miller, PhD (1,2) John H. Noble, Jr., PhD (1,2) Virginia Commonwealth University, Department of Mental Health and Mental School of Social Work Retardation Richmond, Virginia Richmond, Virginia

Tommy Miller (1) Maureen Noonan (1) HELP Legal Aid American Health Care Association Davenport, Iowa Washington, D.C.

Neal Milner, PhD (1,2) Wendy L. Norberg (1,2) Department of Political Science, Mendota Mental Health Institute University of Hawaii Madison, Wisconsin Honolulu, Hiwaii Keith H. Nuechterlein, PhD (2) Kelly Muorse (1,2) Department of Psychiatry, UCLA . Mental Disabilities Board of Los Angeles, California Visitors Helena, Montana Thomas F. O'Hare, JD (2) Alice Pettit (1) McLean Hospital Napa, California Belmont, Massachusetts Daniel T. Piekarski (2) Kim Matthew Olson (1,2) Geriatric Services Branch, Area D Los Altos, California CMHC, St. Elizabeth's Hospital Washington, D.C. Mary Olympia (1,2) Fergus Falls State Hospital Elizabeth PLasick (1,2) Fergus Falls, Minnesota Citizens for Action in Mental Health Portage, Michigan Grady O'Rear (1) Maryland Association of Psycho* Thomas F. A. Plaut, PhD (1,2) social Services National Institute of Mental Health Frederick, Maryland Rockville, Maryland

C. Richard Orndoff (1,2) Rosemary Plesset (2) New York State Office of Mental United Mental Health, Inc. of Allegheny Health County Buffalo, New York Pittsburgh, Pennsylvania

Thomas D. Overcast, JD, PhD (2) David Popiel, JD (1) Battelle Human Affairs Research Community Mental Health Lav Project Centers East Orange, New Jersey Seattle, Washington Robert L. Porter (1) Kay Diane Palacko (2) Association of Mental Health Adrainis* Georgia Community Support Project tracors Atlanta, Georgia Washington, D.C.

Fae Pannor (1,2) Andrew Posner (2) Advocates for the Mentally 111 Los Angeles, California Culver City, California Morton Posner (1) Patty Pederson (2) R.E.S.P.E.C.T., Inc. Family and Individual Reliance Melville, New York (FAIR) Austin, Texas Project Overcome (2) Minneapolis, Minnesota Roland M. Peek, PhD (1,2) Client Protection Office, Depart* Kelli Quinn (1,2) ment of Public Welfare Psychiatric Alternatives Alliance St, Paul, Minnesota Shepherd, Michigan

Roger Peele, MD (1) Stephen Rachlin, MD (1,2) Chairman, Department of Psychia* Nassau County Medical Center try, Sc. Elizabeth's Hospital East Meadow, New York Washington, D.C. Joan Rapp (2) Richard Pena (1) Department of Mental Health ‘Mental Health and Mental Retarda* Boston, Massachusetts tion Public Responsibility Committee Austin, Texas Mr/Mrs. G. W. Ravenscroft (1,2) Jerome Rosenfeld (1,2) Family and Friends of Adult Arkansas Families for the Mentally 111 Mentally 111 Edgemont, Arkansas Estes Park, Colorado Marilyn K. Rosenson (2) Audrey Reberg (1,2) Friends of the Psychologically Handi­ Muskegon County Mental Health Day capped of Greater New Orleans Treatment Program New Orleans, Louisiana Muskegon, Michigan Donna Roth (1,2) William H. Reid, MD (1.2) Recipient Rights Officer, Washtenaw Nebraska Psychiatric Institute County CMHC Omaha, Nebraska Ann Arbor, Michigan

Carleton F. Reo (1,2) Loren H. Roth, MD (1,2) New York State Department of Western Psychiatric Institute and Clinic, Social Services University of Pittsburgh Carle Place, New York Pittsburgh, Pennsylvania

Clyde Reynolds, M.Div. (2) Jeff Rubin, PhD (1,2) San Fernando Valley CMHC Department of Economics, Rutgers University Van Nuys, California Plscataway, New Jersey

Hon. Eleanor L. Richardson (1,2) Darlene Jane Russell (2) Decatur, Georgia Oklahoma City, Oklahoma

Jane Rlnguette/Young, LSW (1,2) Norma Russo (2) Brockton Multi-Service Center Family and Individual Reliance (FAIR) Brockton, Massachusetts Austin, Texas

Hilda H. Robbins (1,2) Robert J. N. Ryan (2) National Mental Health Association St. Paul, Minnesota Ft. Washington, Pennsylvania Robert L. Sadoff, MD (1) Joseph A. Rogers (1,2) Department of Psychiatry, University Mental Patients* Association of of Pennsylvania New Jersey Jenkintown, Pennsylvania Bloomfield, New Jersey Paul Sanzenbach (1) Gus Root, PhD (1,2) School of Social Welfare, Louisiana Morrisville, Vermont State University Baton Rouge, Louisiana Stephen M. Rose, PhD (1,2) School of Social Welfare, SUNY J. T. Sarazin (1,2) Stony Brook, New York Director, Mental Illness Program Division Minnesota Department of Public Welfare Alexander C. Rosen, PhD (1,2) St. Paul, Minnesota Neuropsychiatric Institute, UCLA Los Angeles, California Floyd H. Sarff, LL.B (1,2) Client Advocacy Coordinator, Department Norman S. Rosenberg, JD (1,2) of Mental Health Mental Health Law Project Columbus, Ohio Washington, D.C. Bernard Schapiro (1) Harriet M. Shetier (1,2) People Encouraging People, Inc. National Alliance for the Mentally 111 Baltimore, Maryland Madison, Wisconsin

Beatrice Schelnbaum, PhD (1) Paul Shields (2) Department of the Public Advocate, WAGA-TV Division of Mental Health Advocacy Atlanta, Georgia Newark, New Jersey Becky Simons (1,2) Frank Schiller (1) Parents of Adult Mentally 111 of Santa Maine Department of Mental Health Clara County and Mental Retardation Palo Alto, California Augusta, Maine Kay Slavkin (2) Ulnsor C. Schmidt, Jr., PhD (1,2) Office of Congressman Anthony Beilenson Institute for Social Research, Los Angeles, California Florida State University Tallahassee, Florida Vince Smith (1,2) Department of Health and Rehabilitative Max Schneier (1,2) Services Marina Del Rey, California Tallahassee, Florida

Gary Schoener (2) Winston R. Smith (2) Walk-In Counseling Center Beaumont, Texas Minneapolis, Minnesota Allen Snyder, JD (1,2) Dean Schooler, PhD (1,2) University of San Diego Law School Boulder, Colorado San Diego, California

Annette K. Schreiber (1) Kenneth Solomon, MD (1,2) Office of Recipient Rights, Levlndale Hebrew Geriatric Center and Michigan Department of Hospital Mental Health Baltimore, Maryland Lansing, Michigan Hon. Sam Solon (1,2) Eveline D. Schulman, EdD (1,2) Minnesota Senate President’s Committee on Employ­ St. Paul, Minnesota ment of the Handicapped Washington, D.C. Mary Klos Sowers (1,2) Kalamazoo, Michigan Kenneth J. Sharigan, PhD (2) Division of Mental Hygiene and Tony Speier (1,2) Mental Retardation Office of Mental Health and Substance Carson City, Nevada Abuse, State of Louisiana Baton Rouge, Louisiana Kate Sharp (1,2) Vermont Liberation Organization Douglas R. Spencer (2) Montpelier, Vermont Illinois Department of Mental Health and Developmental Disabilities . Ann Sheehan (1) Springfield, Illinois Alliance for the Mentally 111, St. Louis Glencoe, Missouri Philip J. Spottswood, PhD (1,2) Jerry A. Thuden (1,2) Mental Health Resource Center Superintendent, Madison State Hospital Jacksonville, Florida Madison, Indiana

Craig W. Stafford (1,2) Sally Thomas, RN (2) Family and Individual Reliance Mental Health Association of Southeastern (FAIR) Pennsylvania; Families Unite for Mental Austin, Texas Health Telford, Pennsylvania Bennet Stark, PhD (1,2) NatLonal Committee for Victims Stephen Thomas, Jr. (2) of Human Research Michigan Department of Mental Health Madison, Wisconsin Lansing, Michigan

Jacquelyn Stark, RN (1,2) Jim Tillema (1,2) Muskegon County Mental Health Director of Follow Up, La Frontera Center Day Treatment Program Tucson, Arizona Muskegon, Michigan Ja»es Tracy (1,2) Elaine Stein (1,2) M&nlc Depressive Association Long Island Regional Council Chicago, Illinois Federation of Organisations for the New York State Mentally Disabled Peter Tralnor (1,2) Queens Village, New York New York Office of Mental Health Albany, New York Jonah Steinhaus (1,2) United Community and Housing Judith E. Turner (1) Development Corp. Chief, Community Support and Rehabili­ Los Angeles, California tation Branch, National Institute of Mental Health Thomas W. Stinson (1,2) Rockville, Maryland Family and Individual Reliance (FAIR) Rae Unzicker (1,2) Austin, Texas South Dakota Mental Health Advocacy Project Sioux Falls, South Dakota Peggy M. Straw (1,2) National Alliance for the Men­ Gary R. Vandenbos, PhD (1,2) tally 111 in New Hampshire Director, National Policy Studies Peterborough, New Hampshire American Psychological Association Washington, D.C. John A. Talbott, MD (1,2) Cornell University Medical Cathee Vaughn (2) College Stanislaus County Department of Mental New York, New York Health Modesto, California Carol A. Tamminga (2) Mental Health Committee, Michigan Jean C. Voegell (1) House of Representatives National Alliance for the Mentally 111 Lansing, Michigan Charleston, South Carolina

Don Teter (1,2) John Wade (1,2) Alliance for Mental Recovery Virginia Department of Rehabilitative Baytown, Texas Services Richmond, Virginia John D. Wallace, JO (1,2) Malcolm Wilson (1,2) New Hampshire Division of Mental Alliance for Troubled Families Health & Developmental Services Oakland, Maine Concord, New Hampshire Marjorie Wilson (2) Richard Warsh (1,2) Legal Aid Service of Broward County New York State Office of Mental Fort Lauderdale, Florida Health Delmar, New York Wallace C. Winter, JD (1) Mental Health & Developmental Disabilities Way Station, Inc. (2) Law Project, Legal Assistance Founda­ Frederick*Maryland tion of Chicago Chicago* Illinois Robert H. Weber, JD (1,2) Mental Health Legal Advisors John C. Wolfe, PhD (1,2) Committee National Psychiatric Institutes, Inc. Boston, Massachusetts Washington* D.C.

Raymond Weinstein, PhD (1,2) Beverly Wuntch (1*2) Division of Social and Behavioral National Alliance for the Mentally 111; Sciences, University of South Alliance for Mental Recovery Carolina Houston, Texas Aiken* South Carolina Dorlanne Goetz Zammetti (1) Victor H. Welpert, Jr. (2) New York, New York House Fiscal Agency, Michigan House of Representatives Lansing, Michigan

Hon. Beverly J. White (1*2) Utah House of Representatives Tooele, Utah

Frances S. White (2) Main Line Mental Health Croup; Mental Health Association of Southeastern Pennsylvania Radnor, Pennsylvania

Arthur N. Wiens, PhD (1*2) Department of Medical Psychology, Oregon Health Sciences University Portland, Oregon

Judith M. Wilcox (2) State of Wisconsin Department of Health and Social Service Madiosn, Wisconsin

. Ruth Willetts, DSW (2) Department of Social Work, Uni­ versity of South Florida Tampa, Florida 185

APPENDIX B

PANELIST IDENTIFYING INFORMATION

Name Due

Mailing Address

Phene Number (___)______

Inatitutional/Organizational Affiliation (if any)______

May we use your name and organizational affiliation (if any) in our report to NIMH? □ Yes □ No

"Stakeholder" Group: Check as many of the categories below as you feel applyand tocircle you. the letter of the tingle category that beat describes your viewpoint or position.

A. □ Current or Former Direct Recipient of D. □ Patient Rights Advocate (Niamey, para- Mental Heath Services legal, ombudsperson, “ internal" advocate, etc.) & □ Patent/Relative of Mental Health Care Recipients) E. □ Community Representative (civic leader, business person, etc.) C. □ Mental Health or Social Service Provider or Professional F. □ Academic/Researcher

NQTE: If you would care to nominate any additional Panel members, please provide their name, address, pbione. affiliation (if any), and stakeholder group, and return with the survey in the poatage-paid envelope.

(over) SECTION ONE: FORECAST Instructions

This is a future-oriented study. One of its premises is that a more desirable future can be shaped if we auicipate important developments. We encourage you to be farsighted in your thinking.

Please describe a possible development of the next 20 years that may affect the fundamental rights of the adult "chronically mentally ill" in the community. The development that you describe may concern any of a variety of rights areas, including those related to the civil liberties, mental health needs, or basic human needs of this population, and it may affect such rights either positively or negatively. Your forecast may include either major shifts from current knowledge, attitudes, poiicy. practice, etc.. or extensions of current trends.

Please provide your forecast in the space below. We would, of course, welcome more than one forecast if you are so inclined. If you prepare more than one forecast, please number them. Use additional sheets of paper if necessary. SECTION TWO: STRATEGY

Instruction*

Please prepare astrategy that addresses the development you described in Section One and that you feel will advance or protect the rights at issue in that forecast. If your forecast negativesuggests effects on the rights of the adult "chronically mentally ill" in the community, your strategy proposal should be aimed at preventing and/or compensating for such effects. If your forecast suggests fxMhtv impact on such rights, your proposal should seek to promote and/or capitalize on such a development.

Your strategy proposal may take any of many different forms including, but not limited to. new ideas for public policy, alternative advocacy models, new service programs, fiscal strategies, public education, or any other types of intervention. We encourage you to be as creative and innovative as possible, keeping in mind constraints of feasibility. Finally, we hope that proposals will have maximum positive impact upon the rights of the adult "chronically mentally ill" in the community, while having as limited negative consequences as possible for others.

Please provide your strategy proposal in the space below. If you included morn than one forecast in Section One. please indicate which forecast your strategy addresses. If you prepare mom than one strategy, please mimber them and indicate which forecast is addressed by each strategy. Continue on the back of this page and use additional sheets of paper if necessary. APPENDIX C

Evaluation of Forecasts and Strategies

Nana______Date Institutional/Organizational Affiliation (if any)______Hailing Mdress_

Pirns Suiter ( )______Professional Degree (if any)_ Hay we use your name and organizational affiliation (if any) in our report to NXHH? ’ Yes No___

’Stakeholder* Group: Check aa many of the categories below as you feel apply to you, and circle the letter of the single category that beat describes your view­ point or position. A. Current or Former Direct Rscip- D.__ Patient Rights Advocate (attor- ient of Mental Health Services ney, paralegal, aabudsperson, •internal* advocate, etc.) B. Parent/Relative of Mental Health Care Recipient (s) E. Canmnity Representative (civic leader, business person, etc.) C. Mental Health or Social Service Provider or Professional P. Academic/Researcher

(3NERAL INSTRUCTIONS This survey is concerned with the rights of those adult persons residing in the ccnmunity who are regarded as 'chronically mentally ill* (Oil), and is addressed to the time period of the next 20 years. (By 'rights* we mean those just, fair, or equitable entitlements accruing to persons either as a result of their special status or sinply as basic h m a n rights properly belonging to all persons.) The questionnaire is divided into two major sections. Section One asks for your as­ sessment of several issues and forecasts that may affect the rights of the 'chron­ ically mentally ill* in the ocnmunity during the next 20 years. In Section Ttoo we ask you to evaluate a matter of strategies that have been proposed for protect­ ing and advancing the rights of this population during that time period. Space has been provided at the end of the questionnaire for any clarification or oas- ment that you care to make regarding your responses. ncnON CUE: ISSUES M O PCRKASTS Part A: a»T»H«e importance of Rights Issuae for the “Chronically Man tally 111* M e Reside In the CaBBunitv below ere ton major rights issues (or the adult ’chronically aentally ill* who reside in the oaanunity. Please rank these issues according to their importance for this population during the next 20 years. Place a *1* in the blank next to the issue you consider to be most important (or this grotp, a *2* (or the issue you regard as second in iqjortance, and so on until you have ranked all tan issues. ISSUES RANKING OP MPCBnNCE a. Freedom (ran involuitery hospitalization b. Availability and quality of advocacy services (legal, rights notification, complaint resolution, etc.) c. Equal employment opportunities d. Preedcm to participate in mental health treatment decisions e. Availability and quality of amntal health services (. Equal housing opportunities g. Availability and quality of generic services (medical, vocational rehabilitation, etc.) h. Equal educational cpportisiities i. Freedom to receive mental health treatment in the least restrictive alternative setting j. Availability of public antitlenenta (SSI, food steeps, etc.)

After having ranked the ten issues above, please add any other rights Issues that you regard as particularly important (or the *chroniaally mentally ill* in the oonmnlty during the next 20 years. For each issue that you add, assign a ntntoer to indicate what rank it would have occupied in the above list. Part Bi Fbraoaeta

In tart B we h a w listed a ntober of lanoa or develapaenta that Bay effect the rights of the “chronically Ben tally ill* (CM) in the amounity during the next 20 years, tar each issue, m would like you to sake two judgaants. (king the *Vbraoast* scale, please enter a nuober f r a 1 to 5 in the first blank to the right of the Issue to Indicate your aatiaate at the general direction and degree at change that you aspect to occur during the nast 20 years with respect to that issue (e.g., greatly increase, decrease, etc.). Than, using the *&pact on Rights of O G " scale, please enter a Maher froa 1 to 5 in the second blank to indicate your eetieeta at the probable iRpact of your prediction on the rights at the *chronianlly nan tally ill* in the ccnsunity, aaswing your forecast does coee to peas. tar aaoqile] In Itan 1, suppose you believe that the *pecs of deinstitutionalitaticn* will greatly decrease during the next 20 years; you would than Miter *5* in the forecast blank. Suppose, further, that you think such a greatly decreased pace of deinatitutional lxstion would have a negative iapect an the rights of the O G in the oaanunity during the nact 20 years; you would than enter *4* in the iapect blank. tar each rating, plaaae use the *wable to judge* cption (X) only if you have no basis for asking a rating. SE9£t of Your Forecast Ftaracaat on Rights of the O G 1 • Greatly increase 1 “ Very positive ispact 2 “ Increase 2 “ Positive ispact 3 - Hans in the a n a 3 “ Balanced or no iapect 4 “ Decrease 4 ” Negative inpact 5 “ Graatly decrease 5 “ Vary negative inpact X “ Unable to judge X « Unable to judge FORECAST IMPACT 1. In general, the pace at deinatitutionalisetion will ______2. Federal funding far social progress, including those providing aantal health sendees, will ______3. The availability of free or low-coat legal represen­ tation far the ‘chronically non tally ill* (OG) in the ocnnuiity will ______4. The degree to tdiich private insurance OCTpsnias will provide coverage for the coat of aantal health care will ______5. The quality of eental health services available to the O Q in the ocxanmity will ______191

ngact of Your Ibrecast Barecast on Right* of the O P 1 - Graatly increase 1 ” Vary positive lapact 2 ” Increase 2 “ Positive Inpact 3 - Rasa in the a n e 3 “ Balanced or no ispact 4 “ Decrease 4 ” Negative inpact 5 “ Graatly decrease 5 “ Vary negative iapect X - Unable to judge X “ Unable to judge

FORECAST IMPACT

6. The iaportanoe of the judicial process in protecting the rights of the CMC in the oaanunity will 7. The opportunity for mental health cere recipients to participate in the development of policies and pro- grans affecting the O G in the ocununity will 8. Public tolerance far the CMI in the oaanmity will 9. The actent to which nsntal health treatment is provided in the least restrictive setting will. 10. Financial sipport by the business sector for the aare and treatment of the O Q in the oomuiity will 11. The proportion of mental health service dollars allocated to state hospitals will 12. The availability of patients' rights advocacy and rights protection sendees for the Q O in the ocxn- ■unity will 13. The extent of enforcement of legal decisions supporting the rights of the CMI in the oatmunity will 14. The degree to which the CMI are segregated into "mental health ghettos" will 15. The degree to which quality assurance standards are required of programs providing mental health services to the CMI in the oaanunity will 16. The scope and availability of mental health services far the CMI in the caununity will 17. The extent to which advocacy is conducted by current and former mental health care recipients on behalf of the CMI in the oaummity will 192

of Your Ibrecaat ferecaat on Rights of tha O P X " Graatly increase X > Very positive iapect 2 • Increase 2 a Positive impact 3 “ M a i n tha s o * 3 a Balanced or no Iapect 4 " Decrease 4 a Negative ispact 5 “ Graatly dacraaaa 5 a vary negative iapect X ■ UBable to judge X a Onahle to judge PORBCAST MPJCT XI. The degree to which families of the O C will be held financially responsible for the care and treatment of their relatives will ______19. The degree to «4iich tha O H in tha ocnanity are apprehended by lew enforcement agencies for ^deviant* behavior will______20. The octant to which ootaanity service organisations such as churches, civic groups, etc. provide care and ecpportive services for the o n in the oasmmity will ______21. The actant of support for the O C in tha oosnnity through public antitlanent programs (such as SSI, housing assistance. Medicare, etc.) will ______

22. The likelihood that persons pre a r n e d to be mentally ill will be hospitalized without their acnaent will______23. The degree of authority or autcncny accorded to mental health professionals in defining proper care end treatment will ______24. The rate of uneiplcyment in the general population will ______25. The opportunities for mental health cere recipients to influence or determine the course of their care and treatment will ______26. Resistance by neighborhoods and oosnunitias to the Integration of Q O persons into their areas (for eeunple, through groqp homes) will ______27. The general public's understanding of leant ml illness and its treatment will ______28. The prevalence of chronic aortal illness will______193

ttcact of Your Ptarecsst Ibrscast cn Rights of the O C 1 - Graatly increase 1 m very positive impact 2 “ Increase 2 » Positive impoct 3 - Ramin the same 3 « Balanced or no ispact 4 - Decrease 4 " Negative ispact 5 “ Greatly decrease 5 ” Very negative ispact X “ Unable to judge X “ Unable to judge

w b b c a s t IMPACT 29. Assuming that fiscal responsibility for mental health care is transferred fran federal to state and local governments, the level of mental health resources devoted to the o n will _____ 30. lhs ssctent to which parent/family groups are involved in determining mental health policy and practice will ^ 31. Adherence to the doctrine of informed consent in re­ gard to mental health treatment decisions will 32. Public opinion supporting the rights of the G€C in the oanmnity will 33. The degree to which fiscal considerations determine mental health policy and practioe will 34. The freedom of the CMI to refuse inwanted treatment will 35. The amount of time that the 0 0 spend in jails, prisons, or other correctional facilities will 36. variability among states in the adequacy of mental health care far the O H in the oaramnity will 37. Public pressure to hospitalize many of the Oil in the oamanity will 38. Assuming that mental'health funds decline, the viability of the more innovative, less-restrictive mental health programs (as aaipared to more tradi­ tional, restrictive programs) will 39. Biployment opportunities for the O H in the oaanunity will 40. The competition among disadvantaged groipe for public resources will o r i c n w o : ro w m a proposals Part A: 0»aral Strategic Accroaches to Protecting and Advancing the Rights of the "Chronically Mentally 111* Mho Reside In the Cagtunity

Listed talcw a n eight gnaral strategic approaches to rights protaction and advancesent. Please rank these approaches according to your astinats of their overall anrit for protecting and advancing the rights of the "chronically aan- tally ill" in the aaasunlty during tha next 20 years. Place a "1" in the blank next to tha approach you aonsidar to have the greatest overall Barit, a "2" for tha approach you regprd as second in overall aerit, and so an until you havs ranked all eight approachaa. RANKING OP aiBATWCTC APPBOATHBS OVERALL MERIT a. legislation strategies designed to praote rights of osntal health cere recipients through federal and state statutes and regulations _ _ _ b. Strategies designed to presets private sector support of santal health aare and allied services _____ c. Public education strategies designed to increase public isiderstanding and support Tor the rights of anntal health care recipients d. Self-help strategies designed to proaote autual swport and eall^advocacy a. litigation strategies designed to proaote legal rights through the court system f . Confrontation strategies designed to advance rights through such saans as public demonstrations, oonsuner boycotts, etc. g. coalition strategies designed to increase the priority of santal health through alliances with other constituencies h. Research and evaluation strategies intended to mcpand knowledge regarding aantal illness and treatment

After having ranked the eight strategic approaches above, please add any other approaches that you r a ^ r d as having particular serit for rights protection and advancement, for each approach that you add, assign a mnber to indicate what rank it would have occupied in the above list. Part Bi Strategy Proposals

On the following pages we have listed brief descriptions of a number of possible strategies intended to protect and advance the rights'of the 'chronically Dental­ ly ill* in the oanmmity during the next 20 years. Pbr each strategy, we would like you to make four ratings. Please enter your ratings in the blanks below each strategy, after referring to the rating codes that appear at the top of the page (and which are illustrated below). POr each rating, please use the 'imable to juige’ option only if you have no basis for making a rating. Follow­ ing are more specific instructions far each task. Scale to be used for ratings Scale to be used for ratings of impact (a and b) of feasibility (c) and merit (d) 1 “ Very positive impact 1 » Bctremely high 2 - Positive ispact 2 « High 3 “ Balanced or no ispact 3 • Moderate 4 « Negative ispact 4 “ Low 5 “ Very negative ispact 5 “ Bctremely lor X “ Unable to judge X ” Unable to juige Use the 'Inpact Seale* (above left) for the following ratings: a) Inpact (CHI); Biter a nixaber from 1 to 5 in the blank to indicate your estimate of the probable ispact, if any, of each strategy an the rights of the ’chronically mentally ill* in the ocmuiity during the next 20 years, assuming the strategy is adequately isplemented. b) Inpact (others): Using the same inpact scale, enter a number fran 1 to 5 in the blank to indi­ cate your eetisiate of the probable ispact, if any, of each strategy on the rights of otter mem­ bers of the ccmnuiity, assuring the strategy is adequately inplonented. Use the *Faasibility and ferit Scale* (above right) for the following ratings:

c) Feasibility: Enter a number fran 1 to 5 in the blank to indicate your estimate of the feasibility of adequately isplementing each strategy during the next 20 years. d) Merit: Taking into consideration your ratings of Ispact on the o n and ispact on otters as well as your rating of the feasibility of lapTamentinq the strategy and any otter factors you may consider to be isportant, please enter a number fros 1 to 5 in the blank to indicate your judgment of the over­ all merit of each strategy. 196

Scale to be used for rating* Bral» *n be uaad for ratings r* (a and bF of feasibility (c) and Merit (d) 1 • Wary positive ispact 1 ■ Brtranely high 2 “ Rsitlve impact 2 “ High 3 » Balanced or no Uqpect 3 ■ Moderate 4 ■ Native inct 4 m ho* 5 “ Vary negative impact S “ Bctraaely lot X “ unahle to judge X •> Unable to judge BBUOtGt PROPOSALS 1. Develop patient-aon trolled alternatives to hospitalisation, including housing and employment aaaiatance. a) impact ( 0 0 ) b) B^act (othara)____ c) feasibility d> Merit__ 2. Increase the training of mental health care recipients in self-help and aalf-advocecy skills, a) impact (OO) b) Dgpaot (others)____ c) feasibility d) Marit__ 3. Increase the representation of mental health aere recipients on the advisory and governing bodies of santal health programs. a) impact ( O O ) b) Dqpact (others) c)Feasibility d) Merit__ 4. ftrm coalitions of patient rights advocates and those involved in major social/political m e m n t a , such as the peace movsaant and the environ­ mental acwuent. a) impact (OO) b) Ispact (others) c) Feasibility____ d) Merit__ 5. Provide the public with more accurate information regarding the actual incidence of dangerous behavior ty emntal patients. a) ispact (OO) b) Xqpect (others)___ c) feasibility____ d) Merit__ 6. Pass legislation establishing a National Msital Qselth Insurance program to provide frae or loe-oost mental health aere. a) Ispact (O O ) b) X^act (others)___ c) Feasibility d) Merit__ 7. Place treatment siphasls for the O O in the caamsiity on rehabilitation approaches rather than on more amrtIrally-oriantad progress. a) impact (OO) b) impact (others)___ c) Feasibility d) Merit__ S. Pass state legislation to provide statewide mental health advocacy progranm in those states currently without such legislation. a) impact (OO) b) impact (others)___ c) Feasibility d> Merit__ 197

Beale to be uaad for ratings Scale to be ueed for rating* of l m c t (a and b) of feasibility (c> and merit (d) 1 “ Very positive ispact 1 " Bitrenely high 2 “ Positive bqmct 2 " High 3 “ Balanced or no ispact 3 • Moderate 4 - Negative ispact 4 - Low 5 “ Vary negative ispact 5 » Bctraaely lev X - unable to judge X » Unable to judge 9. Make greater use of legislation that provides for attorney's fees to support legal advocacy. a) Iapect (o a > b) Dapect (others) c) feasibility_ d) Merit__ 10. Devote a greater share of the santal health budget to the problems of the O C and decrease emphasis an less severe psychological problsns. a) iapect IO C ) b) Upset (others) c) feasibility_d) Merit__ 11. Develop a partnership between the business aoasunity sod the mental health system that would offer otploynent opportunities for the O d and also meet aployers' needs. a) ispact (OH) b) Inpact (others) c> feasibility_ d) Merit__ 12. Utilize the experience of other social movmaents (civil rights, fmsinist, etc.) that say be applicable to rights advancement for the CMI. a) Ispact (CMI) b) Ispact (others) c) feasibility __ _ d) Merit__ 13. Provide more adequate coverage of mental health/illness in public school curricula. a) Inpact (OH) b) Ispact (others) c) Fsasihllity_ d) Merit__ 14. Develop coalitions including former patients, parents and family matters, advocates, service providers and concerned citizens to advocate for the rights of the CKI in the oaanunity. a) Iapact (OO) b) Ispact (others)____ c) Feasibility_d) Merit__ 15. Iaprcrvi networking among mental health self-help groqps. a) Ispact (O O ) b) Ispact (others) c) feasibility _ _ d) Merit__ 16. Bmble mental health care recipients to have access to all of their mental health records. a) Impact (CMI) b) Ispact (others)____ c) feasibility____ d) Merit__ 198

Beale to be used for ratings srala tn be used for ratings of iacact (a and b) of feasibility (c) and merit id) 1 - Vary positive impact 1 - B ct.riamly high 2 - Positive iapect 2 - High 3 « Balanced or no iapect 3 “ Moderate 4 “ Negative jjpmct 4 “ Low 5 « Vary negative iapect 5 - Bctrmaly law X e Unable to judge X “ Unable to judge 17. Develop a aontiman of oaanunity reaidenoaa that offer varying levels of support for the O O . a) Dpact ( O O ) ____ b) Iapect (others) c) Feasibility d) Merit___ IB. Dae public education approaches, such as telethons, to raise funds for needed research and treatment program for the O O in the aosanity. a) Ifcpect ( O O ) ____ b) Upact (others) c) Feasibility____ d) Merit___ 19. Develop legislative action csarnittaas within santal health advocacy groups, a) XSpect ( O O ) b) Iapect (others) c) Flexibility____ d) Merit___ 20. Increase tax incentives for business and industry contributions to santal health program serving the O O in the ocmuiity. a) Dpact (O O ) b) Ispact (othera)____ c) Feasibility____ d> Merit___ 21. Bqpand research designed to identify and/or develop successful oaanunity- hasad residential alternatives to hospitalisation. a) I^act (O O ) b) ISpact (others)____ c) Feasibility____ d) Merit ___ 22. Increase the participation of former santal health care recipients in public education efforts. a) ispact (O O ) b) Dapoct (others)____ c) Feasibility d) Merit___ 23. Make greater use (by the mental health system) of naturally occurring re- ' sources (e.g., diurches, civic groqps, businesses) to assist with re­ habilitation of the O H . a) Upset (CMC) b) Iapect (others) c) Feasibility d) Merit___ 24. Require private insurance aonpanies to provide santal health insurance to cover costs of treatment for sental illness. a) Dpact (CHI) b) Upset (others) c) Feasibility d) Merit___ 199

bn uaaa for ratings Scale to be used for ratings nf imfrt (e end b) of (feasibility (c) end aerTt (d) 1 • Very positive ispact 1 m Bctreoely high 2 ■ Faaitiw ispact 2 “ High 3 - Balanced or no iapect 3 “ Moderate 4 - Negative iapect 4 “ Low 5 * Very negative ispact 5 - Bctrenely low X - (table to judge X - Unable to judge 25. Provide aore case or resource aanagsasnt services for the CMI in the acnmnity to ensure that they do not “fall through tha cradca.* a) Ispact ( O O ) b) Ispact (others) c) Feasibility d) Merit _ 26. Direct an education canpaign toward elected public officials reminding rights of the O O . a) Dapact ( O O ) b) Ispact (others) c) Feasibility d) Merit . 27. Item coalitions that link patient rights groups with other disability and handicapped grape. a) Dpact ( O O ) ___ b) Ispact (others) c)Feasibility d) Merit _ 28. Increase the participation of mental health aere recipients in the training of santal health staff. a) Dqpact ( O O ) ___ b) Ispact (others)___ c> Feasibility _ _ d> Merit _ 29. Develop job banks to provide flexible «ploynent opportunities for the O O . a) Ispact ( O O ) ___ b) Ispact (others)___ c) Feasibility____ d> Merit 30. Increase the percentage of the santal health budget allocated to the prevention of chronic siental illness. a) ispact (OO) b) Inpact (others)___ c) Feasibility____ d> Merit 31. Provide tax incentives to enable family svnbers to assist in the a r e of the O O . a) Ispact ( O O ) b) Ispact (others) c) Feasibility____ d> Merit 32. Expand training in patient rights for santal health program staff. a) fryact (OO) b) Ispact (others) c) Feasibility____ d) Merit 200

1« tn be uaad for rating* Beals to be uaad for ratings ' (a and b) of feasibility (c) and merit (d) 1 «■ Vary poaitive impact 1 » Bctrmaaly hl^i 2 “ Poaitive ispact 2 " High 3 “ Balanced or no l^act 3 “ Moderate 4 " Negative ispact 4 “ lot 5 • Vary ne^tive ispact 5 ■ Bctrmeely lev X - Ohahle to judge X “ Unahle to jidge 33. Prcnota the davelossaant of foatar care programs to provide houaing oppor­ tunities for the O O . a) ISpact ( O O ) b) Sqiact (others) c) Feasibility d) M r i t 34. Incraaae anphasie or. eelf-hslp agoroachaa to mntel illness. a) lapact (CMI) b) Ispact (others) c)Feasibility d) Merit__ 35. Bold mentally ill parsons as accountable/responsible for criminal behavior as is true of other citizens. a) ispact ( O O ) ___ b) n^iact (others)___ c)Feasibility d> Merit__ 36. Develop the legal right of cental patients to refuse unwanted psychiatric treatment, incluling psychotropic swdiajtion. a) dpact (CMI) b> lapact (others)___ c) Feasibility___ d) Merit__ 37. d o s e neat mental hospitals in order to provide more funding for oonmnity- based programs. a) lapact (CMI) b) lapact (otters) c) Feasibility___ d) Merit__ 30. Increase government regulation of boarding hones for the mentally disabled, a) Inpact (oa) b) XBpact (otters) c)Feasibility d) Merit _ 39. Help the O d in the aaamsiity to participate in oonsmer cooperatives whose msnbers trade among thsnaelves for goods and services. a) lapact (CXI) b) Iapect (otters) c) Feasibility d) Merit _ 40. Increase research in the area of tha biological bases of mantal illness. a) Inpact ((XI) b) Dapact (otters) c) Feasibility d) Merit _ 2 0 1

Soals to be used for ratings Seale tobe used for ratings ~r imrtr-t (a and bf at fa— lbllltv (c) end merit (d) 1 “ Vhry poaitive iB(iact 1 “ Bctranely high 2 “ Poaitive ispact 2 “ High 3 - Balanced or no lapact 3 “ Moderate 4 “ Nogative iapect 4 “ lot 5 “ Vary negative ispact 5 “ Bctronely lew X - Ohahle to judge X » Dnable to judge 41. Conduct patient rights advocacy through grass roots political organizing centered around coalitions of interested grotpa. a) iapect (QB> b) Ispact (others) c) Feasibility d) Merit__ 42. Abolish involuntary civil ocn&itaent. a) lapact (OU) b) Ispact (others) c) Feasibility____ d> Merit__ 43. Cvpaign to elect political representatives who are supportive of the rights of the CMI in the oaanunity. a) ispact (OB) b) Dpact (others) c) Feasibility d> Merit___ 44. Provide greater tax incentives to aqployers who hire the OO. a) Inpact (O H ) b) ISpect (others) c) Feasibility d) Merit___ 45. Provide free legal aid to the Q E in the ctxnmnity. a) Bipact (CMI) b) Inpact (others) c)Feasibility d) Merit___ 46. Provide reasonable grievance procedures for mentally disabled residents of boarding hones. a) Inpact (OB) b) Inpact (others)____ c)Feasibility d) Merit___ 47. Abolish the insanity defense. a) Ispact (O B ) b) Upect (others)____ c)Feasibility d) Merit___ 48. Increase the osphasis on coot/benefit analysis of treatment programs and procedures. a) Ispact (OB) b) lapact (others)____ c) Feasibility d) Merit___ Bill — ctlon 1» antlraly optional.

D m tha tela* if you would Ilka to clarify or onanwnt an any of your rating* or ranking* of Individual itma. Plaaaa ldaitify tha l t m in quMtian by Hating tha page nuabar and itaa nunbar (for ratings) or lattar (for raidcinga) aaaociatad with each raapmaw for which you wiah to provide ocaawnt or clarification. Dm additional ahaata of paper if nacaaaary.

ZtM Ms. Pag* Wo. or Lattar Ot— nt

flank you vary auch for your cooperation and participation. APPENDIX D

Phase One Forecast Codes

1. Availability and quality of mental health services.

2. Availability and quality of generic services.

3. Availability and quality of advocacy services.

4. Availability of public entitlements.

5. Reinstitutionalization.

6. Deinstitutionalization.

7. Treatment choice.

8. Equity regarding employment.

9. Equity regarding housing.

10. Equity regarding education.

11. Public attitudes toward the chronically mentally ill.

12. Characteristics of the chronically mentally ill.

13. Competition for resources.

14. Legal issues.

15. The general economy.

16. The political climate.

17. Other global factors. 204

APPENDIX E

Phase One Strategy Codes

1. Advocacy

2. Anti-psychiatry

3. Consumer participation

4. Coalitions

5. Criminal justice

6. Deinstitutionalization

7. Employment

8. Family intervention

9. Fiscal

10. Housing

11. Legislation

12. Litigation

13. Monitoring

14. Private sector

15. Public education

16. Professional training

17. Research

18. Self-help

19. Technical assistance

20. Treatment

21. Volunteerism

22. Other APPENDIX Fs Tables TABLE P-l FORECAST ITEM SCORES BY STAKHPIDER GROUP AND THE FORECAST-IMPACT CORRFT aTTflN FOR EACH ITEM

Itan Stakeholder Group

Ttatal Sample Recipients Parents m/SS Profs. Rts.Advocs. Can. Reps. Acadanics

I ta n 1 Forecast 3.14 2.97 ' 2.68 3.46 2.87 3.31 3.33 Inpact 3.13 3.16 2.79 3.16 3.24 3.10 3.25 Fbrecast-Inpact Correlation .37

Ite m 2 Forecast 3.83 4.21 3.50 3.91 3.90 3.78 3.61 Inpact 4.07 4.06 3.43 4.24 4.32 4.00 4.02 Forecast-Inpact Correlation .68 I tan 3 Forecast 3.55 3.71 3.10 3.62 3.74 3.53 3.41 Inpact 3.61 3.79 3.03 3.57 4.02 3.68 3.46 Forecast-Inpact Correlation .75 I tan 4 Forecast 2.91 3.16 2.78 2.97 2.88 2.80 2.86 Inpact 3.10 2.78 3 . U 3.23 3.16 2.87 3.16 Forecast-Inpact Correlation .70 Item 5 Forecast 2.87 2.88 2.61 2.86 2.95 2.90 2.95 Inpact 3.07 2.91 2.63 3.08 3.35 3.10 3.18 Forecast-Inpact Correlation .84

Note: Farecast-inpact correlation values are Pearson correlation coefficients. Other entries are group means,

(continued next page) 206 TABLE F- i (continued)

Total Sample Recipients Parents m/SS Profs. Rts.Advocs. Can. Reps. Academics

Ite m 6 Forecast 2.68 2.46 2.70 2.73 2.63 2.75 2.77 Inpact 2.69 2.48 2.67 2.79 2.69 2.68 2.69 Forecast-Inpact Correlation .57

Ite m 7 Forecast 2.64 2.62 2.40 2.63 2.82 2.63 2.70 Inpact 2.73 2.91 2.44 2.65 2.98 2.78 2.64 Forecast-Inpact Correlation .79

I ta n 8 Forecast 2.93 2.79 2.63 2.95 3.17 2.81 3.02 Inpact 3.21 3.26 2.81 3.25 3.46 3.03 3.28 Forecast-Inpact Correlation .86

Ite m 9 Forecast 2.68 2.59 2.35 2.70 2.76 2.74 2.89 Inpact 2.81 2.79 2.42 2.88 2.82 2.87 3.00 Forecast-Inpact Correlation .84

Item 10 Forecast 2.99 2.97 2.88 2.97 3.11 2.93 3.00 Inpact 3.16 3.09 3.00 3.14 3.31 3.17 3.21 Forecast-Inpact Correlation .70

Ite m 11 Forecast 3.50 3.50 3.79 3.38 3.52 3.43 3.43 In p a c t 3.16 3.a 3.16 3.08 3.23 3.20 3.13 Forecast-Inpact Correlation -.37

(continued next page) 207 TABU) F-l (continued)

Total Sanple Recipients Parents W/SS Profs. Rts.Advocs. Cam. Reps. Academics

Item 12 Forecast 2.80 2.61 2.26 2.81 3.25 2.69 2.91 Inpact 2.96 2.94 2.44 2.90 3.46 2.75 3.02 Forecast-Inpact Correlation .81 Item 13 Forecast 2.88 2.66 2.58 3.00 3.00 2.67 2.93 Inpact 3.01 3.00 2.71 3.06 3.22 2.90 2.98 Forecast-Inpact Correlation .78 Item 14 Forecast 2.91 2.68 3.37 2.92 2.73 3.09 2.76 Inpact 3.48 3.68 2.90 3.49 3.64 3.23 3.80 Forecast-Inpact Correlation -.74 Item 15 Forecast 2.61 2.64 2.24 2.60 2.85 2.45 2.75 Inpact 2.84 3.00 2.24 2.96 3.05 2.65 2.95 Forecast-Inpact Correlation .76 Item 16 Forecast 2.83 2.75 2.56 2.83 3.00 2.75 3.00 Inpact 3.01 3.11 2.63 3.01 3.16 2.94 3.13 Forecast-Inpact Correlation .85 Item 17 Ebrecast 2.26 1.94 2.10 2.31 2.48 2.29 2.23 Inpact 2.24 1.80 2.00 2.35 2.55 2.26 2.17 Forecast-Inpact Correlation .72

(continued next page) 208 TABLE F-l (continued)

Total Sample Recipients Parents ffl/SS Profs. Rts.Advocs. Can. Reps. Academics

Item 18 ~ F Q ? iS a s t 2.52 2.53 2.88 2.37 2.45 2.65 2.45 In p a c t 3.36 3.29 3.15 3.35 3.57 3.33 3.36 Forecast-Inpact Correlation -.45

Item 19 ~ 15r a a s t 2.67 2.71 3.05 2.60 2.57 2.70 2.50 Inpact 3.52 3.52 3.05 3.63 3.67 3.53 3.58 Forecast-Inpact Correlation -.60

Item 20 Forecast 2.33 2.17 2.28 2.31 2.41 2.35 2.39 Inpact 2.38 2.33 2.40 2.32 2.39 2.45 2.47 Forecast-Inpact Correlation .76

Item 21 Forecast 3.49 3.77 3.14 3.51 3.64 3.28 3.48 Inpact 3.73 3.89 3.10 3.81 4.00 3.62 3.79 Forecast-Inpact Correlation .84

Itsn 22 — FbP^ast 3.17 3.17 3.56 3.14 3.00 3.19 3.09 Inpact 3.09 3.03 2.95 2.96 3.52 2.90 3.07 Forecast-Inpact Correlation -.59

Item 23 • „ Forecast 3.13 2.86 3.38 3.19 2.92 3.14 3.28 Inpact 3.00 3.06 2.76 3.01 3.25 2.74 3.00 Forecast-Inpact Correlation -.23

(continued next page) 209 TABLE F-i (continued)

Total Sanple Recipients Parents Hj/SS Profs. Rts.Advocs. Com. Reps. Academics

Item 24 Forecast 2.80 2.65 2.79 2.88 2.65 2.93 2.91 Inpact 3.60 3.82 3.38 3.48 3.86 3.74 3.40 Forecast-Inpact Correlation -.65 I tan 25 Forecast 2.57 2.53 2.40 2.63 2.68 2.66 2.49 Inpact 2.71 2.69 2.46 2.71 2.92 2.90 2.53 Forecast-Inpact Correlation .80 Item 26 Forecast 2.89 2.97 2.93 2.81 2.84 3.10 2.85 Inpact 3.45 3.35 3.07 3.53 3.64 3.42 3.49 Forecast-Inpact Correlation -.59 I tan 27 Forecast 2.45 2.44 2.28 2.50 2.60 2.26 2.47 Inpact 2.74 2.74 2.37 2.79 2.97 2.61 2.79 Forecast-Inpact Correlation .75 Item 28 Forecast 2.70 2.81 2.63 2.63 2.75 2.93 2.59 Inpact 3.43 3.50 3.05 3.52 3.46 3.41 3.53 Forecast-Inpact Correlation -.70 Item 29 Forecast 3.70 3.85 3.76 3.43 3.85 3.48 3.98 Inpact 3.85 3.85 3.67 3.60 4.13 3.65 4.20 Forecast-Inpact Correlation .77

(continued next page) TABUS F-l (continued)

Total Sanple Recipients Parents m/SS Profs. Rts.Advocs. Can. Reps. Academics

I ton 30 Forecast 2 23 2.06 1.79 2.33 2.25 2.34 2.50 Inpact 2.36 2.63 1.67 2.26 2.59 2.48 2.63 Forecast-Inpact Correlation .68

Item 31 —Forecast 2.61 2.78 2.53 2.63 2.56 2.61 2.58 Inpact 2.70 2.79 2.59 2.64 2.69 2.89 2.75 Forecast-Inpact Correlation .74

I tan 32 ForecasttuleuBt 2.95 2.76 2.58 3.10 3.12 2.84 3.02 Inpact 3.19 3.06 2.73 • 3.29 3.45 3.10 3.24 Forecast-Inpact Correlation .83

^ ^ t o e L s t 2.11 2.25 2.54 2.06 1.94 2.09 1.96 Inpact 3.95 3.71 3.53 4.00 4.34 3.72 4.02 Forecast-Inpact Correlation -. 35

^fSrecast 2.80 2.78 2.60 2.88 2.97 2.90 2.57 Inpact 3*11 2.94 3.29 3.00 3.26 3.45 2.86 Forecast-Inpact Correlation .51

Ite m 35 Forecast 2.63 2.88 3.21 2.40 2.46 2.71 2.47 Inpact 3.55 3.50 2.81 3.65 3.78 3.68 3.69 Forecast-Inpact Correlation -. 63

(continued next page) TABI£ F- 1 (continued)

Total Sanple Recipients Parents HH/SS Profs. Rts.Advpcs. Com. Reps. Academics

I tan 36 Forecast 2.43 2.66 2.88 2.20 2.26 2.42 2.51 Inpact 3.66 3.34 3.22 3.84 3.87 3.46 3.84 Forecast-Inpact Correlation -.61

Item 37 Forecast 2.54 2.74 2.72 2.51 2.35 2.77 2.40 Inpact 3.56 3.52 3.08 3.59 3.91 3.45 3.57 Forecast-Inpact Correlation -.57

Item 3B Forecast 3.28 3.15 2.88 3.31 3.47 3.31 3.40 Inpact 3.52 3.25 3.17 3.50 3.86 3.52 3.69 Forecast-Inpact Correlation .83 Item 39 Forecast 3.26 3.24 3.02 3.30 3.38 3.23 3.30 Inpact 3.58 3.76 3.14 3.70 3.72 3.55 3.51 Forecast-Inpact Correlation .84 Item 40 Forecast 1.81 1.81 2.21 1.78 1.66 1.81 1.72 Inpact 4.16 4.26 3.77 .4.15 4.34 4.03 4.33 Forecast-Inpact Correlation -.33 TABLE f -2 STRATEGY ITEM SCORES BY STAKEHOLDER GROUP

Item Stakeholder Group Ttatal Sanple Recipients Parents ffl/SS Profs. Rts.Advocs. Ccro. Reps, teademies

Item 1 Inpact - CMI 1.70 1.17 1.70 1.90 1.57 1.73 1.87 Inpact - Others 2.40 1.71 2.35 2.53 2.39 2.47 2.75 Feasibility 3.06 2.23 2.80 3.19 3.26 3.19 3.32 Merit 2.17 1.38 2.15 2.37 2.05 2.39 2.43

Item 2 Inpact - O O 1.55 1.28 1.71 1.54 1.58 1.45 1.67 Inpact - Others 2.08 1.83 1.93 2.22 2.16 1.83 2.24 Feasibility 2.34 1.75 2.34 2.36 2.52 2.31 2.52 Merit 1.82 1.47 1.93 1.84 1.84 1.69 2.00 Item 3 Inpact - O O 1.93 1.42 1.93 2.10 1.90 1.88 2.08 Inpact - Others 2.39 1.97 2.30 2.58 2.26 2.34 2.66 Feasibility 2.46 1.89 2.68 2.61 2.40 2.31 2.60 Merit 2.26 1.57 2.35 2.54 2.06 2.03 2.63 Item 4 Inpact - O O 2.30 2.03 2.45 2.48 1.97 2.32 2.52 Inpact - Others 2.52 2.26 2.72 2.62 2.28 2.61 2.68 Feasibility 3.05 2.63 3.31 3.20 2.79 3.19 3.15 Merit 2.87 2.43 3.13 3.00 2.50 2.94 3.19

Item 5 Inpact - O O 1.93 1.78 1.71 2.01 1.90 1.66 2.29 Inpact - Others 1.99 1.77 1.67 2.15 1.97 1.81 2.31 Feasibility 2.14 2.14 2.05 2.15 2.11 2.09 2.27 Merit 2.09 2.00 1.71 2.21 1.95 1.78 2.65 Note: Entries are groqp means.

(continued next page) 213 TABI£ F-2 (continued)

Total Sample Recipients Parents Mi/SS Profs. Rts.Advocs Ccm. Reps. Academics

I ten 6 Inpact - C M i.es 2.15 1.41 1.75 1.43 1.69 1.77 Inpact -Others 2.35 2.65 1.92 2.33 2.10 2.88 2.49 3.72 3.49 2.87 4.00 3.77 3.69 4.09 Fusibility 2.47 Merit 2.22 2.55 1.73 2.31 1.78 2.69 I ten 7 Inpact - ( M 1.63 1.58 1.78 1.60 1.38 1.37 2.04 Inpact - Others 2.08 1.94 2.10 2.05 2.08 1.90 2.33 2.53 2.24 2.54 2.51 2.67 2.23 2.79 Feasibility 2.17 Merit 1.77 1.67 1.88 1.75 1.49 1.71 I ten 8 Inpact - C M 1.73 1.53 1.62 1.86 1.58 1.68 1.98 Inpact - Others 2.26 2.00 1.97 2.39 2.26 2.23 2.47 Fusibility 2.76 2.36 2.42 2.90 3.05 2.71 2.73 Merit 2.06 1.94 1.77 2.29 1.85 1.97 2.33 I ten 9 Inpact - C M 2.04 1.67 2.18 2.15 1.93 1.93 Inpact - Others 2.69 2.35 2.61 2.92 2.45 2.63 Fusibility 3.09 2.67 3.00 3.29 3.02 3.10 Merit 2.52 2.21 2.33 2.80 2.10 2.61 Item 10 Inpact - C M 1.93 2.46 1.95 1.85 1.88 1.97 Inpact - Others 3.40 3.42 2.51 3.53 3.47 3.63 Feasibility 2.93 3.34 2.54 2.78 3.03 3.00 Merit 2.81 3.35 2.33 2.75 2.66 3.14

(continued next page) TABU! p-2 (continued)

Total Sample Recipients Parents m/SS Profs. Rts.Mvocs. Con. Reps. Academics

Item 11 Inpact - C M 1.48 1.76 1.31 1.41 1.49 1.47 1.57 Inpact - Others 2.22 2.15 1.83 2.23 2.34 2.22 2.43 Feasibility 2.89 2.76 2.33 2.86 3.08 2.84 3.32 Merit 1.82 2.15 1.38 1.70 1.84 1.75 2.22 I tan 12 Inpact - Q O 2.08 1.79 2.05 2.16 1.95 2.19 2.26 Inpact - Others 2.47 2.09 2.44 2.64 2.41 2.42 2.64 Feasibility 2.81 2.27 2.56 3.01 2.85 3.06 2.87 Merit 2.57 2.06 2.25 2.82 2.33 2./5 2.98 Item 13 Inpact - C M 1.94 1.86 1.98 2.06 1.84 1.59 2.11 Inpact - Others 1.94 1.80 2.07 1.95 1.90 1.66 2.17 Feasibility 2.42 2.36 2.59 2.36 2.33 2.31 2.62 Merit 2.03 1.91 2.00 1.95 2.02 1.81 2.45 Item 14 Inpact - O O 1.56 1.62 1.37 1.60 1.48 1.56 1.70 Impact - Others 1.90 1.66 1.71 2.04 1.84 1.81 2.17 Feasibility 2.23 2.21 2.05 2.30 2.30 2.16 2.25 Merit 1.74 1.88 1.46 1.74 1.66 1.69 2.04 Item 15 Inpact - O O 1.63 1.46 1.48 1.69 1.62 1.53 1.89 Inpact - Others 2.15 2.12 1.90 2.21 2.02 2.06 2.58 Fusibility 2.12 1.94 1.95 2.24 2.11 2.13 2.20 Merit 1.82 1.69 1.67 1.88 1.72 1.78 2.13

(continued next page) TABI£ F-2 (continued)

Total Sanple Recipients Parents HH/SS Profs. Rts.ftdvocs. Con. Reps. Acadanics

Item 16 Impact - C W 2.33 1.53 2.08 2.83 2.05 2.28 2.60 Inpact - Others 2.81 2.39 2.23 3.08 2.71 2.79 3.28 Feasibility 2.79 2.55 2.38 2.90 2.78 3.00 2.98 Merit 2.55 1.57 2.08 3.13 2.15 2.58 3.04

Item 17 1.28 Inpact - Oil 1.31 1.65 1.24 1.25 1.25 1.41 Inpact - Others 2.14 2.31 1.93 2.20 2.02 2.13 2.30 Feasibility 2.70 2.62 2.00 2.80 2.97 2.72 2.85 Merit 1.57 2.00 1.32 1.46 1.48 1.66 1.70 Item 18 Inpact - Oil 2.05 2.58 1.62 1.91 2.15 1.91 2.28 Inpact - Others 2.31 2.82 1.93 2.30 2.31 2.09 2.51 Feasibility 2.76 2.66 2.44 2.77 2.95 2.66 2.90 Merit 2.46 3.06 1.81 2.24 2.64 2.19 2.94 I tan 19 Inpact - 0 0 1.69 1.67 1.55 1.76 1.60 1.63 1.8S Inpact - Others 2.14 2.10 1.88 2.16 2.14 2.06 2.42 Feasibility 2.08 2.06 1.90 2.15 1.93 2.19 2.21 2.27 Merit 1.83 1.75 1.52 1.92 1.64 1.78 Item 20 Inpact - 0 0 1.65 1.84 1.57 1.55 1.62 1.63 1.85 Inpact - Others 2.24 2.07 2.14 2.27 2.15 2.33 2.47 Feasibility 2.90 2.46 2.54 3.00 2.93 3.03 3.20 Merit 2.06 1.97 1.79 1.91 2.00 2.32 2.52

(continued next page) 216 TABLE F-2 (continued)

Total Sanple Recipients Parents m/SS Profs. Rts.Advocs COn. Reps. Acadanics

Item 21 Inpact - CHI 1.67 1.68 1.45 1.74 1.74 1.50 1.75 Inpact - Others 2.06 1.93 1.80 2.29 2.07 1.75 2.23 Fusibility 2.42 2.20 2.10 2.63 2.48 2.41 2.42 Merit 1.89 1.87 1.50 1.99 1.90 1.81 2.10 I tan 22 Inpact - C M 1.71 1.25 1.67 1.83 1.67 1.59 Inpact - Others 1.91 1.48 1.93 2.04 1.85 1.72 Feasibility 2.21 1.85 2.29 2.29 2.21 2.09 Merit 1.89 1.34 1.86 1.96 1.82 1.72 I tan 23 Inpact - c m 1.68 1.88 1.52 1.66 1.67 1.47 1.87 Inpact - Others 1.97 2.16 1.80 1.94 1.95 1.75 2.20 Feasibility 2.26 2.35 2.02 2.26 2.34 2.09 2.38 Merit 1.85 2.03 1.57 1.83 1.84 1.53 2.28 I tan 24 Inpact - O O 1.67 1.97 1.38 1.71 1.58 1.59 1.85 Inpact - Others 2.41 2.72 2.26 2.23 2.35 2.47 2.70 Fusibility 3.23 3.07 2.92 3.36 3.23 3.03 3.52 Merit 2.04 2.30 1.50 1.90 2.02 2.03 2.64 I tan 25 Inpact - Cm 1.56 2.13 1.34 1.51 1.55 1.45 1.55 Inpact - Others 2.19 2.52 1.93 2.23 2.14 2.10 2.28 Feasibility 2.52 2.74 2.10 2.46 2.65 2.71 2.51 Merit 1.80 2.45 1.41 1.72 1.80 1.71 1.87

(continued next page) TABU; F-2 (continued)

Total Sanple Recipients Parents m / S S Profs. Rts.Advocs. Com. Reps. Acadanic

Item 26 Inpact - C M 1.85 1.78 1.54 1.96 1.90 1.63 2.11 Inpact - Others 2.19 2.09 1.95 2.31 2.16 2.00 2.47 Feasibility 2.39 2.19 2.13 2.50 2.51 2.34 2.48 Merit 2.10 1.97 1.76 2.20 2.16 1.81 2.48 Item 27 Inpact - C M 1.99 1.94 1.95 2.03 1.84 1.97 2.24 Inpact - Others 2.29 2.16 2.32 2.32 2.10 2.38 2.52 Feasibility 2.51 2.10 2.26 2.64 2.55 2.59 2.65 Merit 2.26 2.03 2.08 2.27 2.08 2.28 2.73 I tan 26 Inpact - C M 1.79 1.42 1.72 1.96 1.59 1.83 2.06 Inpact - Others 2.07 1.78 1.92 2.23 1.88 2.23 2.28 Feasibility 2.69 2.47 2.38 2.71 2.86 2.50 2.94 Merit 2.09 1.77 1.85 2.30 1.86 1.90 2.60 Item 29 Inpact - C M 1.58 1.44 1.39 1.70 1.50 1.59 1.74 Inpact - Others 2.27 2.00 2.00 2.32 2.24 2.43 2.58 Feasibility 2.75 2.33 2.26 2.81 2.93 2.84 3.09 Merit 1.86 1.61 1.49 1.86 1.98 1.84 2.26 I tan 30 Inpact - C M 2.22 2.16 1.92 2.47 2.04 1.97 2.51 Inpact - Others 2.26 2.03 2.05 2.44 2.21 2.03 2.48 Fusibility 3.07 2.79 2.78 3.30 2.93 3.19 3.18 Merit 2.43 2.27 2.19 2.61 2.30 2.13 2.86

(continued next page) TABI£ F- 2 (continued) ratal Sanple Recipients Parents m / S S Profs. Rts.Advocs. Can. Reps. Academics

Item 31 Inpact - C W 1.85 2.16 1.77 1.88 1.92 1.66 1.73 Inpact - Others 2.14 2.13 2.38 2.25 2.10 1.84 2.02 Feasibility 2.83 2.67 2.68 2.97 2.86 2.59 2.96 Merit 2.13 2.38 1.98 2.19 2.31 1.72 2.09 I tan 32 Inpact - O H 1.88 1.71 1.90 2.04 1.70 1.69 2.04 Inpact - Others 2.19 2.12 2.22 2.30 2.10 2.03 2.23 Feasibility 2.21 2.06 2.32 2.20 2.20 2.19 2.29 Merit 2.08 1.91 1.95 2.35 1.77 2.03 2.27 Item 33 Inpact - C M 1.83 2.16 1.54 1.76 1.78 1.91 2.00 Inpact - Others 2.32 2.37 2.03 2.33 2.26 2.61 2.38 Feasibility 2.64 2.61 2.41 2.62 2.76 2.84 2.60 Merit 2.09 2.26 1.87 1.99 2.07 2.16 2.32 Itan 34 Inpact - C M 1.78 1.41 1.70 1.82 1.81 1.61 2.13 Inpact - Others 2.09 1.69 1.94 2.25 1.97 2.13 2.36 Feasibility 2.31 1.67 2.35 2.40 2.43 2.21 2.50 Merit 1.96 1.33 1.84 2.13 2.00 1.83 2.27 Item 35 Inpact - C M 3.04 2.53 3.58 2.68 3.30 3.00 3.28 Inpact - Others 2.37 1.97 2.76 2.11 2.62 2.36 2.49 Feasibility 2.58 2.53 2.82 2.48 2.56 2.48 2.68 Merit 3.04 2.50 3.47 2.64 3.42 2.79 3.41 Item 36 Inpact - C M 2.63 1.50 3.42 2.99 1.98 2.74 2.93 Inpact - Others 3.23 2.53 3.59 3.53 2.85 3.23 3.41 Feasibility 2.86 2.58 2.86 3.00 2". 75 2.97 2.91 Merit 2.93 1.81 3.60 3.28 2.24 3.10 3.35

(continued next page) 219 TABLE F- 2(continued) Total Sanple Recipients Parents m/SS Profs. Rts.Advocs. Con. Reps. Academics

Item 37 Inpact - CMI 2.78 2.03 3.18 3.01 2.20 3.00 3.13 Inpact - Others 3.28 2.56 3.26 3.41 2.92 3.52 3.85 Feasibility 3.61 3.13 3.19 3.85 3.75 3.56 3.73 Merit 3.06 2.27 3.24 3.26 2.54 3.29 3.56 I tan 38 Inpact - (JO 2.04 1.77 2.10 2.36 1.76 2.19 1.89 Inpact - Others 2.41 2.29 2.38 2.66 2.28 2.33 2.33 Feasibility 2.60 2.22 2.67 2.73 2.46 2.77 2.64 Merit 2.20 1.94 2.18 2.51 1.97 2.35 2.09 Item 39 Inpact - O O 2.01 1.77 1.84 2.21 1.98 1.74 2.23 Inpact - Others 2.38 2.00 2.21 2.49 2.41 2.26 2.63 Feasibility 2.79 2.37 2.49 2.94 2.88 2.72 3.00 Merit 2.43 2.00 2.11 2.63 2.47 2.13 2.80 Item <0 Inpact - (JO 1.99 2.68 1.33 2.00 2.00 2.06 2.02 Inpact - Others 2.16 2.86 1.40 2.24 2.18 2.13 2.23 Feasibility 2.33 2.60 1.93 2.45 2.40 2.42 2.13 Merit 2.12 2.84 1.40 2.13 2.18 2.03 2.26 Item 41 Inpact - O O 1.93 1.48 1.78 2.12 1.80 1.91 2.26 Inpact - Others 2.27 2.00 2.03 2.44 2.13 2.34 2.53 Feasibility 2.60 2.19 2.43 2.69 2.68 2.66 2.76 Merit 2.30 1.74 1.93 2.54 2.27 2.29 2.67 Item 42 Inpact - O Q 3.32 2.21 3.66 3.69 2.80 3.30 3.83 Inpact - Others 3.83 2.81 3.97 4.12 3.59 3.83 4.17 Feasibility 3.92 2.94 3.58 4.04 4.25 4.03 4.15 Merit 3.70 2.52 4.00 4.04 3.26 3.90 4.15

(continued next page) 220 TABLE F- 2 (continued) Total Sanple Recipients Parents m/SS Profs. Rts.Advocs. Can. Reps. Academics

Item 43 Inpact - CMt 1.79 1.43 1.63 1.87 1.75 1.88 2.04 Inpact - Others 2.17 1.61 2.00 2.29 2.15 2.32 2.30 Fusibility 2.75 2.57 2.51 2.72 2.76 2.77 3.11 Merit 2.14 1.74 1.95 2.09 2.07 2.20 2.74 Item 44 Inpact - O H 1.74 1.58 1.51 1.81 1.73 1.71 1.96 Inpact - Others 2.35 2.21 2.05 2.36 2.36 2.48 2.57 Feasibility 2.86 2.73 2.65 2.80 2.93 2.91 3.09 Merit 2.08 1.88 1.80 2.03 2.12 2.13 2.49 I tan 45 Inpact - O O 1.77 1.43 1.58 1.91 1.69 1.77 1.96 Inpact - Others 2.64 2.50 2.19 2.81 2.53 3.00 2.73 Feasibility 3.13 2.80 2.59 3.27 3.12 3.38 3.40 Merit 2.23 1.79 1.95 2.32 2.02 2.66 2.63 Item 46 Inpact - O O 1.63 1.31 1.59 1.78 1.48 1.75 1.72 Inpact - Others 2.31 2.39 2.05 2.42 2.17 2.42 2.43 Feasibility 2.49 2.12 2.34 2.73 2.41 2.47 2.62 Merit 1.91 1.71 1.82 2.15 1.64 1.97 2.02 Item 47 Inpact - O O 3.28 2.67 3.50 3.01 3.73 3.11 3.53 Inpact - Others 2.87 2.28 3.10 2.61 3.33 2.77 3.07 Feasibility 2.86 2.35 2.91 2.99 2.85 I.'} 3.00 Merit 3.39 2.52 3.66 3.16 3.91 3.07 3.72 I tan 48 Inpact - O O 2.42 2.56 1.75 2.30 2.93 2.20 2.63 Inpact - Others 2.28 2.39 2.00 2.26 2.49 2.00 2.43 Feasibility 2.42 2.75 2.26 2.49 2.18 2.37 2.56 Merit • 2.37 2.70 1.93 2.09 2.84 2.07 2.65