Consumer/Survivor-Operated Self-Help Programs

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CONSUMER/SURVIVOR-OPERATED SELF-HELP PROGRAMS: A Technical Report A Retrospective Review of the Mental Health Consumer/Survivor Movement and 13 Federally Funded Consumer/Survivor-Operated Service Programs in the 1980s

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Substance Abuse and Mental Health Services Administration Center for Mental Health Services www.samhsa.gov CONSUMER/SURVIVOR-OPERATED SELF-HELP PROGRAMS: A Technical Report A Retrospective Review of the Mental Health Consumer/Survivor Movement and 13 Federally Funded Consumer/Survivor-Operated Service Programs in the 1980s

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES Substance Abuse and Mental Health Services Administration Center for Mental Health Services www.samhsa.gov ACKNOWLEDGMENTS

This publication was developed for the Substance Abuse and Mental Health Services Administration (SAMHSA), Center for Mental Health Services (CMHS) by Laura Van Tosh and Paolo del Vecchio under contract number 92MF059138. Significant contributors at CMHS included CMHS Community Support Program Chief Neal Brown and Government Project Officer Jacqueline Parrish. In addition, Patricia Deegan, Deborah Dennis, Mike Finkle, Howard Goldman, Susan Ridgely, and Phyllis Solomon provided contributions. Finally, acknowledgment is granted to the individuals and consumer/survivor organizations that participated in the grant project. Their pio- neering efforts are a testament to consumer/survivor strength and ability.

Disclaimer Access to Publication The content of this publication does not nec- This publication can be accessed electronical- essarily reflect the views or policies of the ly at: http://www.mentalhealth.org. For addi- Center for Mental Health Services (CMHS), tional copies, call: CMHS Knowledge Substance Abuse and Mental Health Services Exchange Network, 1-800-789-2647. Administration (SAMHSA), or the Department of Health and Human Services. Originating Office Office of External Liaison Note on Language Center for Mental Health Services Emerging concepts in mental health require a Substance Abuse and Mental Health vocabulary that accommodates change. The Services Administration goal of this guide is language that is flexible 5600 Fishers Lane and accessible to the general public. Room 15-99 Rockville, MD 20857 Public Domain Notice All material appearing in this report is in the Funding has been provided by the public domain and may be reproduced without Center for Mental Health Services permission from SAMHSA. Citation of the Substance Abuse and Mental Health source is appreciated: Services Administration Van Tosh, L. and del Vecchio, P. Consumer- U.S. Department of Health and Human Operatied Self-Help Programs: A Technical Services Report. U.S. Center for Mental Health February 2001 Serfvcices, Rockville, MD. 2000. DHHS Publication No. (SMA) 01-3510 TABLE OF CONTENTS

Page

Introduction ...... v

Chapter 1: The Consumer/Survivor Self-help Movement: A Literature-Based Review ...... 1

Chapter 2: Description of the 13 Demonstration Grant Projects ...... 21

Chapter 3: Cross-Site Findings and Recommendations ...... 73

Chapter 4: Overall Recommendations ...... 81

References ...... 85

Appendix A: Table of Findings ...... 91

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services iii INTRODUCTION

The mental health consumer/survivor self-help movement has experienced remarkable growth over the last two decades. The impact of this movement on mental health systems nationwide has been dramatic. No longer are people who use these services seen simply as passive recipients but as active participants at all levels in planning, providing, and evaluating services. The Substance Abuse and Mental Health Services Administration (SAMHSA), Center for Mental Health Services (CMHS) has played a key role in supporting these important developments. Beginning in the early 1980s, the Community Support Program (CSP), which is located within CMHS/SAMHSA, initiated various technical assistance activities to promote self-help, peer support, and client-directed approaches. In 1988, CSP issued a new grant program to demonstrate and evaluate services run by and for individuals with psychiatric disabilities. Fourteen projects were awarded funding for over $1.2 million, the first such projects to be supported by a Federal agency. This document is a retrospective review of the mental health consumer/survivor self-help movement and, specifically, the findings and recommendations from these innovative demonstration projects. Consumer/Survivor-Operated Self-help Programs, is the first comprehensive documentation of the experiences of consumers/survivors in designing and operating their own self-help programs. The lessons from these past efforts are invaluable in assisting us to improve mental health services today and in the future.

Joseph Autry III, M.D. Bernard S. Arons, MD Acting Administrator Director Substance Abuse and Mental Health Center for Mental Health Studies Services Administration Substance Abuse and Mental Health Services Administration

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services v Chapter 1 THE CONSUMER/SURVIVOR SELF-HELP MOVEMENT: A LITERATURE-BASED REVIEW

In 1987–1992, the National Institute of Mental Methodology Health’s (and later the Center for Mental This document summarizes an examination Health Services’) Community Support Program of the findings of these innovative grant proj- (CSP) launched a unique program to fund ects focusing on their accomplishments, community-based consumer/survivor demon- implementation, operation, and evaluation. stration grants. Through this effort, grants A cross-project analysis was used to deter- totaling nearly $5 million were awarded to mine similarities, differences, generalizable 14 States to implement and evaluate an array observations, and recommendations for of services to Americans with severe mental implementing, operating, and evaluating illness provided by mental health consumers/ consumer/survivor-run programs. survivors. The goals of this effort were to: This report is unique in that it is based on • Address a critical shortage in the research techniques and has been guided by number and type of self-help services persons with an understanding of consumer/ available to mental health consumers survivor self-help issues. in the community; The initial method implemented was the • Demonstrate the feasibility and effective- identification and summarization of published ness of consumer-operated programs; and unpublished literature on self-help and programs operated by and for consumers/ • Analyze, synthesize, and package find- survivors. Project staff completed a literature ings from these grants so that other con- search with key informants in the consumer/ sumers/survivors could replicate these survivor self-help movement, self-help techni- services in their local communities; cal assistance centers, national consumer/ • Generate a series of recommendations survivor organizations, self-help researchers, useful to policymakers with responsibili- CMHS documents, and other sources. In ties for funding community-based mental addition, notices were placed in national health services; and consumer/survivor newsletters requesting literature on this topic. • Foster support for sustaining existing programs and increasing the number of consumer/survivor self-help initiatives so that effective services will be available to those who need them.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 1 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

As a result, over 80 pieces of literature • Implementation issues and barriers; were located. These materials have been • Successes and evaluation findings; and reviewed while examining such issues as: • Project recommendations. • How is “self-help” generally defined? The final activity centered on conducting What are the essential characteristics analyses across the projects to determine sim- of “self-help”? What is the history and ilarities, differences, generalizable knowledge rationale for its use? How has it been gains, and recommendations for implementing, instituted in different service fields? operating, and evaluating consumer/survivor- run programs. • What is “mental health consumer/ A comparative analysis of the qualitative survivor self-help”? What is its history findings of each project enabled a synthesis of and the rationale for its use? What are information about the projects’ similarities as its major philosophies, goals, values, well as differences in approaches and serv- and outcomes? ices, and it contrasted problems encountered • What are consumer/survivor-operated and results achieved. In so doing, a matrix self-help programs? What are the topolo- analysis was employed to complete this task. gies of services delivered? How do the Generalizable observations were extracted programs differ and how are they similar? from the information in the above domains, • How are consumer/survivor-operated and conclusions and recommendations were self-help programs organized to achieve then drawn from this analysis. their aims? How are these efforts funded? How are they managed and admin- Limitations of Methodology istered? What sort of staffing patterns A number of factors affect the validity and exist? What is the population that is reliability of the methodology employed. An served by these efforts? How are these important issue is the age of the data. Most of efforts governed? What is the extent of the projects reviewed were initiated approxi- program evaluation and research con- mately 6-8 years before the completion of this ducted with these programs? How do report. There are a number of factors which they interact with traditional, profession- contributed to this, including when the grant al-run organizations, each other, and the for the report was awarded and the time nec- external environment? essary to complete data analyses. While this The second major activity focused on may, in fact, impact upon some variables review and analysis of information from each (e.g., environmental changes), the results are of the CSP demonstration grant projects con- likely to be relevant and transferable to the tained in their original proposals, progress present time. reports, evaluation studies, and final reports. In reviewing literature, it is difficult to com- To accomplish this task, a detailed, qual- plete a comprehensive overview of all sources itative, descriptive analysis was conducted in this area in that materials are published at a for each project which examined the follow- rapid pace. In addition, many pieces of con- ing domains: sumer/survivor literature are “fugitive” (e.g., • Project goals and objectives; not published in traditional, peer-reviewed pro- • Services provided; fessional journals). With over 80 citations, • Individuals served; however, this review does approach a signifi- • Organization and administration; cant overview of this field.

2 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

The qualitative analysis of the 13 projects 13 grantees. Chapter 1 continues with an also brings significant limitations. These exploration of the benefits, characteristics, and include the examination of self-reports from values of consumer/survivor self-help; reviews the projects themselves and the incomplete program typologies and services; and con- data which these reports contain. These cludes with a description of how consumer/sur- issues are explored in greater detail at the vivor self-help programs have been organized beginning of Chapter 2. This factor also and administered to achieve their objectives. impacts upon the matrix analysis conducted to Chapter 2 provides a detailed overview of determine cross-site findings and recommen- each demonstration project funded and exam- dations, because this matrix analysis was ines: project goals and objectives; program based on the project findings themselves. description; implementation issues and barriers; While the above do produce limitations in the and successes and evaluation findings. This will methodology, it is believed that this report does include a review of the services provided, offer a valuable—albeit descriptive—analysis of clients served, and issues surrounding project consumer/survivor-operated programs. As organization and implementation. Project out- such, it should be a useful tool as consumer/ comes, recommendations, and continuation survivor-operated programs further develop. efforts are also discussed. Chapter 3 offers overall findings based on a cross-site analysis of the project narratives. Organization of This Report Specifically, this was conducted using a matrix This report presents a snapshot of the experi- analysis of the key outcomes associated with ences of 13 of the 14 National Institute of each project. Generalizable similarities and dif- Mental Health/Community Support Program ferences were extracted and are presented. (NIMH/CSP) Consumer-Operated Services The report concludes with a set of broad Demonstration Projects funded during 1988- policy recommendations for public officials, 1989 (one grant was terminated due to unre- researchers, managed care organizations, solvable implementation problems). State mental health programs, local com- The report opens with a brief overview of the munities, and consumers/survivors for literature on the evolution of the consumer/sur- implementing, operating, and evaluating vivor movement to provide a context within future, community-based consumer/survivor which to understand the achievements of the self-help programs.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 3 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

SELF-HELP: A HISTORY & DESCRIPTION OF THE GENERAL CONCEPT In 1992, an estimated 4 million Americans Background experience “severe mental illness”, a category Consumer/survivor-operated self-help pro- that loosely encompasses people suffering grams are a relatively recent phenomenon, from schizophrenia, major depression, and and the paucity of information in the literature bipolar disorder (Interagency Council on the reflects a field that is still in its infancy. Homeless, 1992). Despite this limitation, a literature review Historically, society has shunned, mis- was undertaken of both published and un- treated, and ignored those with serious mental published sources of information in order to health problems, viewing them as incapable of discover the basic foundations of consumer/ making decisions and thinking for themselves. survivor-operated self-help programs. A com- Not only have the myths and stigmas sur- puterized literature search was completed at rounding mental illness resulted in numerous the University of Maryland at Baltimore; key instances of discrimination in housing, employ- researchers and representatives of the con- ment, and education, but they have also pro- sumer/survivor self-help movement were con- duced a class of people who have been sys- tacted to obtain materials; and notices were tematically disempowered and dependent on placed in national consumer/survivor as well what they perceive as a largely unresponsive as professional mental health journals. An mental health system (Chamberlin, 1978). Editorial Review Committee composed of Recently, however, consumers/survivors* consumers/survivors as well as traditional have begun to change their status both in their mental health researchers provided guidance own eyes and in those of the public. They in interpreting the information contained in the have become increasingly vocal and active as documents identified through the search. participants in planning, delivering, and evaluating mental health services that better meet their needs for appropriate treatment, respect Definition of Self-help Webster’s Dictionary defines self-help as personal dignity, and promote independence “the act or an instance of providing for or help- (Canadian Mental Health Association, 1988; ing oneself without dependence on others” Chamberlin, Rogers, and Sneed, 1989; (Webster’s, 1974). In more general terms, Specht, 1988; Chamberlin and Rogers, 1990). it is the process whereby individuals who As a result of this positive action, there is a share a common condition or interest assist growing acceptance of the role of consumers/ themselves rather than relying on the assis- survivors in the provision of mental health tance of others. services as well as increasing support for con- Over the past 25 years, American society sumer/survivor-operated self-help services (and the world in general) has witnessed a (Interagency Council on the Homeless, 1992). revolution in the way people access and receive help. The self-help movement has grown so dramatically that self-help and support groups now exist for everything from * Although a number of terms identify people who use or dream sharing to women’s health. Self-help have used mental health services (e.g., mental health consumer, psychiatric survivor, ex-patient, client, inmate, has gained such acceptance that the former psychiatrically labeled, user, recipient), for consistency Surgeon General of the United States, Dr. C. throughout this report, the term “consumers/survivors” Everett Koop, observed that “ . . . the benefits will be used.

4 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review of mutual aid are experienced by millions of In A.A., alcoholism creates a profound people who turn to others with a similar prob- bond between members, all of whom are lem to attempt to deal with their isolation, pow- equal. The line between patient and doctor, erlessness, alienation . . .” (Katz, et al., 1992). professional and amateur does not exist in A.A. Anonymity, the primacy of both the common welfare and group unity, and the absence History of Self-help of hierarchical governance are some of the Self-help is not a new idea. People have been other notable hallmarks of Alcoholics organizing to help themselves throughout his- Anonymous (Nace, 1992). tory. Religious institutions have frequently While the A.A. program is deceptively sim- played this role by offering support for com- ple—focusing on the “12 steps” or principles mon values, meeting basic material needs, that members follow to maintain sobriety—it and providing opportunities for socialization has attracted an enormous following: approxi- to their members. In the political arena, the mately 50,000 A.A. groups exist in North National Association for the Advancement America today. of Colored People (NAACP), the National The work and message of Bill W. and other Organization for Women (NOW), Mothers pioneers of A.A. were the impetus for an Against Drunk Driving (MADD), ACT UP, and entirely new philosophy that held that people countless others form self-help coalitions to do not have to rely on “experts” in order to redress civil and social wrongs, change policy improve their condition (Bufe, 1991; W., Bill, in the public/private sectors, and promote 1955). A.A.’s success has prompted, in turn, a education (Gartner and Riessman, 1984; fundamental shift in ideas about the provision Zinman, et al., 1987). of “help” which has resulted in the blossoming Self-help in the traditional human services of self-help that is seen today. arena, however, is a fairly recent development. The contemporary self-help movement For decades, service providers have been a exploded during the late 1960’s and 1970’s as highly educated and elite segment of society people began to question the status quo of tra- (Riessman, 1989). The “professionalization” ditional society and began to explore a wide of social work—whereby practitioners are range of “alternative” ideas and behaviors from educated in university settings and licensure political philosophies, to sexual mores, to is becoming a standard requirement for methods of assisting and empowering one employment—is one example of this practice. another. A.A.’s 12-step model has spawned self-help and peer support groups for virtually every health issue of concern to present-day Alcoholics Anonymous society. These include such offspring as The modern self-help movement traces its Narcotics Anonymous, Fundamentalists roots to Alcoholics Anonymous. Founded in Anonymous, and many non-12-step model 1935 by two recovering alcoholics, Alcoholics programs for people with mental retardation, Anonymous, or “A.A.” as it is commonly called, as well as those with developmental and phys- is a fellowship of men and women (and, more ical disabilities (White and Madera, 1992). recently, adolescents) who share their experiences and strength with each other in a group setting, hoping that together they can solve Benefits of General Self-help their common problems (Alcoholics Millions of individuals have participated in self- Anonymous, 1994; Nace, 1992). help groups of one type or another (Mental Health Policy Resource Center, 1991), and

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 5 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review numerous Statewide, national, and even inter- • Education. Self-help groups serve as a national information clearinghouses on self- valuable forum for not only exchanging help groups have been organized in response information about members’ common (White and Madera, 1992; Gartner and concerns, but also for learning about Riessman, 1984). Clearly, there is something other resources available in the commu- about self-help which attracts adherents and nity. For example, self-help groups often produces positive benefits for its members invite speakers to discuss issues of spe- (Stroul, 1986). cial relevance to their membership such Many tangible benefits are cited by self- as the Social Security Administration’s help group members as promoting their SSI/SSDI benefits (Rogers, J., 1988). continued participation: • Advocacy. Case and systems-change • Peer Support. The ability of group mem- advocacy are other attractive features of bers to be empathic and compassionate self-help programs. Through group advo- based on a common experience assists cacy efforts, many group members are participants in feeling better by helping able to access previously unavailable them to realize that they are not alone. resources. In addition, members gain Self-help actualizes the concept of intrinsic rewards from joining together to “strength in numbers”. The sense of soli- change systems or external environmen- darity, encouragement, and power de- tal conditions that are negatively affecting rived from the group imbues participants the self-help community (Zinman, with the sense that they can persevere. et al., 1987). Being a member of a group or commu- • Non-Stigmatizing. Self-help avoids the nity also instills a sense of belonging and stigma and negative connotations that of being accepted for whom one is are often associated with seeking tradi- (Riessman, 1989). tional, professional support (i.e., those • Coping Strategies. Self-help group mem- who seek professional services are bers share information and insights devel- somehow weak in mind or body). This oped as a result of their own experiences may be related to self-help’s emphasis to help each other “get through tough on rugged individualism and self- times” (Gartner and Riessman, 1984). reliance, traits that the larger society seems to value (Riessman, 1989). • Role Models. Self-help group members serve a positive role models to one • “Helper’s Principle”. Proponents of another. Group members who see that self-help believe that those who are able others are able to overcome problems to provide some support or assistance to and conditions like their own have a others experience a heightened sense of renewed sense of hope and energy self-worth and self-esteem themselves. that “if they can do it, so can I” This belief is known in the consumer/ (Gartner and Riessman, 1984). survivor community as the “helper’s principle”, and, in various forms, is a • Affordability. Self-help is often free or mainstay of the self-help movement inexpensive, which makes it a very (Gartner and Riessman, 1984; Roberts attractive alternative to high-cost and and Rappaport, 1989). frequently time-limited “professional” services (Riessman, 1989; Chamberlin, Rogers, and Sneed, 1989).

6 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

Characteristics and Values “professional” and “patient” do not exist, nor do the cumbersome administrative of General Self-help arrangements frequently associated with In addition to the benefits attributed to self- professional services. help by its members, it also possesses a number of other features that distinguish it from traditional forms of professional services: Use of General Self-help • Non-Reliance on Professionals. While Self-help programs have been instituted in a some self-help groups take on a decided- number of different fields including substance ly anti-professional stance based on neg- abuse treatment, education, housing, correc- ative personal experiences (i.e., one tions, and physical and mental disabilities. group is entitled “Victims of Profes- Alcohol and other drug abuse treatment and sionals”), the emphasis in the majority of recovery services are certainly the most obvi- self-help groups is on the practice of self- ous areas where self-help has prospered. determination and empowerment. In self- Virtually all drug and alcohol treatment pro- help groups, individuals are encouraged grams today include or espouse participation to makethe choices and decisions that in some form of self-help (e.g., Alcoholics affect their lives rather than having these Anonymous, Narcotics Anonymous, Cocaine decisions made for them (Riessman, Anonymous). Recovering individuals are 1989; Stroul, 1986). employed in many treatment settings and have been found to be highly effective counselors. • Voluntary. Traditionally, self-help serv- The experience of having “been there” enables ices are voluntary in nature. There is no recovering substance abusers to establish a coercion or requirements that individuals rapport with clients that other counselors can- participate in the group. Most individuals not. They are also able to serve as both effec- attend the self-help function based on tive role models and educators, transmitting their choice and of their own volition “reality-based” coping strategies, information, (Gartner and Riessman, 1984; Zinman, and relapse prevention techniques that other et al., 1987). treatment personnel either do not know or • Equality. Self-help is egalitarian and cannot convey in quite the same way peer-based. The concept is rooted in a (Riessman, 1989). non-hierarchical principle whereby every In the field of education, peer counselors member has equal status. Leadership is and peer tutors have been successful in often shared, and facilitation of group improving the academic performance and in- discussion is rotated among the school behavior of students at risk for failure members (Zinman, et al., 1987). or dropping out. Informal study groups also are routinely utilized by students at all levels • Non-Judgmental. Self-help is based on as a form of self-help (Riessman, 1989). peer support that is provided in a non- Self-help strategies have been particularly judgmental atmosphere where individu- effective in the area of housing development. als can share their feelings and thoughts Self-help organizations such as the National openly. Respect for a person’s confiden- Union of the Homeless and its local chapters tiality is emphasized, as well. and affiliates (including the Oakland • Informality. Informality is generally the Independence Support Center and the norm with self-help groups (Gartner and Philadelphia-based Committee for Dignity Riessman, 1984). Boundaries between and Fairness for the Homeless) have operated

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 7 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review their own shelters for their members and have deaf or hard-of-hearing, for example, have devised a number of innovative methods for formed self-help support groups such as developing and obtaining permanent housing. SHHH (Self-help for the Hard-of-Hearing) and Additionally, these groups have produced have mobilized to initiate systems change employment opportunities for their members activities (e.g., insisting on the appointment of through such business enterprises as the pub- an educator with a hearing impairment as lication of free community newspapers President of Gallaudet University). As another (National Association of State Mental Health example, during the past 20 years, consumer- Program Directors, 1992; National Resource run Centers for Independent Living have Center on Homelessness and Mental Illness, developed for individuals with an array of 1989; Long with Van Tosh, 1988a). physical and mental disabilities through the Following the lead of the education field, the Independent Living movement. Services pro- correctional system has incorporated the con- vided through these self-help oriented centers cept of peer support into its counseling pro- include information on accessing resources, grams for young offenders. This form of self- locating housing, peer counseling, and advo- help assists its members to improve their life cacy services, among others. Independent skills with the goal of preventing criminal Living Centers also are opening their doors to recidivism and ongoing incarceration mental health consumers/survivors through (Riessman, 1989). such programs as the National Empowerment Physical and mental disabilities are another Center (a Federally funded consumer/survivor major area where principles of self-help have self-help technical assistance effort based at been applied effectively (Riessman, 1989; the Northeast Independent Living Center in White and Madera, 1992). People who are Lawrence, Mass.) (DeJong, 1979).

8 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

THE MENTAL HEALTH CONSUMER/ SURVIVOR MOVEMENT “Mental health consumer/survivor self-help” to help members access services as well is the process by which mental health con- as to change an often oppressive system sumers/survivors provide assistance to one (Furlong-Norman, 1988). another based, to a large extent, on the tenets Some of these groups published their own, of the self-help paradigm described in the often impressive, newspapers and magazines preceding section of this report. (e.g., Madness Network News, Phoenix Rising) to provide education and information to their members. Others conducted advocacy History of the Consumer/ through such direct actions as protests and Survivor Self-help Movement pickets both at hospitals accused of being The mental health consumer/survivor self-help abusive and at conventions of the American movement began in its modern form approxi- Psychiatric Association (Madness Network mately 25 years ago. Prior to that, a scattering News Reader, 1974). of consumer/survivor self-help efforts were ini- Members of these East and West Coast tiated (Zinman, et al., 1987), including the self-help groups met at the International work of Clifford Beers—a consumer/survivor Conference on Human Rights and Against advocate, author of A Mind That Found Itself, Psychiatric Oppression and later at the and founder of the Mental Health Association. National Institute of Mental Health’s Learning In the late 1960’s and early 1970’s, the Community Conferences where they would increasing popularity of self-help movements informally network to share information on in general, coupled with the greater awareness what they were doing in their local areas. of the abuses that consumers/survivors experi- Over time, the numbers and types of groups enced (partly as a result of media exposés began to grow, and more moderate viewpoints and the film version of the book One Flew came to be represented. Groups such as Over the Cuckoo’s Nest), prompted small Emotions Anonymous; Recovery, Inc.; and groups of consumers/survivors to begin organ- GROW focused more on peer support and far izing in the larger East and West Coast cities less—if at all—on advocacy, while others even (Madness Network News Reader, 1974). welcomed the involvement of professionals in These groups were few in size and number their activities (Kaufmann and Freund, 1988; and took a decidedly militant viewpoint against Emerick, 1990; Roberts and Rappaport, 1989). psychiatry and the established mental health The publication of Judi Chamberlin’s semi- system. Groups with names like the “Alliance nal work, On Our Own, was a milestone in the for the Liberation of Mental Patients” and history of the movement. Consumers/survivors “Project Release” met in homes and churches and others now could read in the “mainstream” and first drew their membership from the ranks press what it was like to have experienced the of those with first-hand knowledge of negative mental health system. On Our Own also pro- experiences with the mental health system vided details about the mental health con- (Madness Network News Reader, 1974). sumer/survivor self-help movement and dis- However, they sustained their membership by cussed the extension of this concept into the providing: peer; education about services in development of consumer/survivor-run serv- the community and about the problems con- ices. For many consumers/survivors, reading sumers/survivors were facing; and advocacy this book was the beginning of their involve-

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 9 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review ment in the consumer/survivor movement consumer/survivor self-help organizations (Chamberlin, 1978). functioning at the local, State, national, and even international levels (O’Hagan, 1991; European Client Unions Network, 1992; External Support for the World Federation of Psychiatric Users, Consumer/Survivor 1992). Consumer/survivor self-help groups Self-help Movement coordinate activities and conduct advocacy In the 1980’s, the National Institute of Mental on a Statewide level in approximately 30 Health (NIMH) began to support technical States. Various national organizations—for assistance to further develop the self-help example, the National Alliance of Psychiatric model. Through its Community Support Survivors and the National Mental Health Program (CSP), NIMH (and later, CMHS) Consumers’ Association—have evolved. In funded a monthly teleconference out of 1992, the World Federation of Psychiatric Boston University’s Center for Psychiatric Users—the first international consumer/ Rehabilitation (Furlong-Norman, 1988). survivor organization—was initiated. During these calls, consumers/survivors The NIMH/CSP also funded two research from around the nation could talk with one centers to examine the phenomenon of con- another about issues of mutual concern as sumer/survivor self-help. These centers, well as discuss what was happening in their located in Michigan and California, have local communities. In addition, funds were undertaken research that is now producing provided for the publication of a technical useful results (Segal, et al., 1991; Boltz, assistance manual by the California Network 1992). In 1992, NIMH/CSP expanded its of Mental Health Clients entitled Reaching support to fund two technical assistance Across (Zinman, 1987). The Mental Health centers in Massachusetts and Pennsylvania. Association of Southeastern Pennsylvania In addition to these Government-sponsored also received NIMH funds to provide infor- initiatives, a number of national publications by mation on consumer/survivor self-help consumers/survivors, including Dendron and (Furlong-Norman, 1988). NAPS News, also have provided information In 1985, again with funding from NIMH/CSP, about the growing consumer/survivor move- the first national conference of consumers/ ment (Oaks, 1992; Unzicker, 1992). survivors was held in Baltimore, Maryland, to provide technical assistance and opportunities for networking and information exchange. This Benefits of Consumer/ meeting, called “Alternatives ‘85”, was at- Survivor Self-help tended by approximately 400 people and People participate in consumer/survivor self- proved so popular that it became an annual help for the same reasons that they participate event. By 1991, the “Alternatives” conference in other self-help groups; namely, for peer- held in Berkeley, California, drew close to based support, assistance in developing coping 2,000 participants from virtually every State in strategies, exposure to relevant role models, the Union and a number of foreign countries affordability, pertinent information about issues (Acker, 1990; Twedt, 1990). Since that time, and services, advocacy for systems change, the conferences have continued to be held the opportunity to interact without stigma, and with similar attendance. the sense of well-being and self-esteem that During this period, the number of con- derives from helping others (Borck, 1983; sumer/survivor self-help groups expanded Fleming, 1983; Van Tosh, 1990; Roberts and rapidly. Today, there are an estimated 3,000 Rappaport, 1989).

10 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

In addition to these factors, consumer/ of self-worth and belief in their capacity to “do survivor self-help enjoys broad support for themselves” (Ridgway, 1988b). because it works. Studies are currently being On the group level, empowerment refers completed that document the value of con- to the capacity to impact the systems that sumer/survivor self-help as a tool in helping affect members’ lives. True representation, people cope with and overcome their individ- as opposed to tokenism on such decision- ual and collective problems as well as the making bodies as county mental health stigma and discrimination encountered in the services boards, is an example of a form of external environment. Recently, CMHS has empowerment that has been put into action begun planning a study examining the types (Ridgway, 1988b). of services provided by consumer/survivor self-help efforts. This “inventory” will begin Independence to document the significant contributions The concept of independence is another that these projects provide. central value of consumer/survivor self-help. Historically, consumers/survivors have been dependent on others (particularly in the mental Value of Consumer/ health system) to meet their basic needs and Survivor Self-help for support. In contrast, the consumer/survivor The values and philosophies that guide con- self-help movement stresses the importance sumer/survivor self-help are the driving forces of striving for independence, self-reliance, behind its development and its success. With and the opportunity to function as productive other self-help movements, it shares the belief citizens (Zinman, 1987). in: peer-based support and assistance; non- reliance on professionals; voluntary member- Responsibility ship; egalitarian, non-bureaucratic, and informal The consumer/survivor self-help movement structure; affordability; confidentiality; and non- emphasizes the responsibility that individuals judgmental support. However, mental health must take for themselves and others (National consumer/survivor self-help also holds specific Mental Health Consumers’ Association, values and beliefs. 1987a). In addition, behaving in a responsible way with respect to one’s community is Empowerment encouraged. For example, when other con- The concept of “empowerment” is central to sumers/survivors are discriminated against the belief system of the consumer/survivor in housing or employment, self-help group self-help. For mental health consumers/ members are expected to respond and take survivors, empowerment means acquiring the action to redress those wrongs. ability to make those decisions that directly affect their lives. Specifically, this translates Choice into the ability to make decisions about hous- Choice in services and opportunities is also a ing, jobs, and services where consumers/ value of consumer/survivor self-help (Stroul, survivors have typically had little input 1986; Van Tosh, 1989a). In the past, con- (Zinman, 1987; Ridgway, 1988b). sumers/survivors had little choice in the kinds Empowerment on an individual level of services and supports they received. In also translates into control over one’s life. some instances, such as involuntary treat- Traditionally, consumers/survivors have been ment, choice was completely eliminated. falsely deemed “incapable” of playing this role. One goal of the self-help movement is to Empowerment infuses individuals with a sense create an environment in which consumers/

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 11 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review survivors can make informed choices about Given the history and structure of the pre- treatment, housing, and other needed vailing mental health system, consumer/ services (Ridgway, 1988a). survivor self-help groups view as crucial the capacity to provide emotional support and counseling on a peer level without the power Respect and Dignity differentials inherent in professional treatment. A key value of this movement is that everyone Developing a peer support network takes on a should be treated with respect and dignity special importance for people who have men- regardless of his or her situation, income, edu- tal health problems and have become socially cation, or status. The consumer/survivor self- isolated due to attendant stigma and discrimi- help movement is committed to the idea that nation (Leete, 1988). all individuals are valuable and have skills and Hope and recovery, likewise, are fervently strengths to offer society. The movement also embraced core values. The consumer/survivor stresses that everyone has rights that should self-help movement promotes and reaffirms be protected at all times (National Mental the fact that people can recover from their Health Consumers’ Association, 1987a). often traumatic experiences. In so doing, the movement also fosters the understanding that Social Action when systems, communities, and individuals Many segments of the consumer/survivor self- dispense with stereotypes, everyone benefits. help movement (although not all), value social As system changes begin to open the doors to action as a mechanism for social change. improving the quality of life for consumers/sur- Advocating for changes in how consumers/ vivors, the movement is increasing its focus on survivors are treated by the mental health sys- the values of hope and recovery and their tem and society at large is a core activity for power to transform attitudes and behavior many in the consumer/survivor movement (Deegan, 1988; Anthony, 1993). (although other segments of the larger self-help movement, particularly Alcoholics Anonymous, take a firm non-advocacy stance). Within Consumer/Survivor consumer/survivor self-help groups, fostering Self-help Classifications change takes various forms from individual While there is considerable agreement on an advocacy (e.g., assisting individuals with acceptance of the majority of values just de- accessing benefits) to direct action and civil scribed, there is a diversity of philosophies in disobedience campaigns (Van Tosh, 1990; the consumer/survivor self-help movement National Mental Health Consumer Self-help relating to the professional mental health Clearinghouse, 1988b; Rogers, 1990; Andre, system. These differences enabled both 1992; Zinman, 1987). Chamberlin and Emerick to distinguish consumer/survivor self-help groups from one another and classify them into three categories Unique Features of according to their position on this issue Consumer/Survivor Self-help (Chamberlin, 1978; Emerick, 1990). Although they share these features in common In the first category are those groups who with other self-help groups, mental health take an exclusively anti-psychiatric stance consumer/survivor organizations place an towards the mental health system (which they extraordinary value on peer support, hope, regard as oppressive) and refuse to work with and recovery. it. Groups in this category rarely include non- consumers/survivors in leadership roles and

12 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review view self-help activities as an alternative system has been a subject of ongoing debate model to the mental health system. For these within the consumer/survivor movement. groups, which some label “radical”, the self- Those opposed to “taking government money” help movement is a liberation struggle fear being co-opted, while those accepting (Chamberlin, 1978; Zinman et al., 1987; funds view it as a pragmatic step that allows Emerick, 1990). their groups to implement needed services The second category consists of those for consumers/survivors. groups that work with the system, despite being critical of it. While these groups may include non-consumers/survivors within their Impact of the Consumer/ general membership, consumers/survivors Survivor Self-help Movement constitute the majority and maintain leadership The two Federally funded research centers positions. These groups, sometimes referred and a cadre of independent researchers are to as “moderate”, see the system as needing in the process of evaluating the impact of the improvement. However, they also see it as mental health consumer/survivor self-help providing some benefits to others (Chamberlin, movement on both individual members and 1978; Emerick, 1990). on the larger mental health system. In the third category are those groups who On an individual level, preliminary research work very closely with the professional system, suggests that the benefits of participation in involve professionals in their activities and consumer/survivor self-help include: increased commonly share leadership between profes- independence and self-reliance; improved self- sionals and consumers/survivors. Self-help esteem; enhanced coping skills and feelings of groups in this category, sometimes referred to personal empowerment; and increased knowl- as the “partnership” model, believe that the edge of services/rights, housing, employment, mental health system is a source of positive and other issues of special concern to mental help for people with mental health problems health consumers/survivors. In addition, as a and see self-help activities as an adjunct—and result of their involvement in the movement, a not an alternative—to the professional system growing number of consumers/survivors are (Chamberlin, 1978; Emerick, 1990). “going public” about their problems and are There is a great mix of beliefs within con- speaking out against societal stigma (Roberts sumer/survivor self-help groups that cross and Rappaport, 1989; Borck, 1983; Leete, the boundaries between categories; neither 1988; Van Tosh, 1990). groups nor individual group members fit neatly On a systems level, the movement has sub- into “little boxes”. Since a major goal of the stantially contributed to the increased involve- consumer/survivor movement is to reduce the ment of consumers/survivors in all aspects of use of “labels” by fostering the recognition that the planning, delivery, and evaluation of men- diversity should be respected, classification tal health services as well as in the protection schemes are only one approach to under- of individual rights. Specific examples of the standing self-help groups and should be positive outcomes achieved as a result of their interpreted cautiously. involvement include: Public Law 102-321 (formerly P.L. 99-660), which established mental health planning councils in every State, and Funding the development of Protection and Advocacy Accepting government funding for alternative agencies for patients’ rights in every State self-help projects as well as participating in (Chamberlin and Rogers, 1990). Both of these collaborative projects with the mental health laws also include a requirement for substan-

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 13 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review tive consumer/survivor involvement in planning (OCAs) in nearly 30 State Mental Health and implementing mandated activities. Authorities. OCAs are generally staffed by consumers/survivors to support consumer/survivor empowerment and self-help in their par- Consumers/Survivors ticular States. In 1995, CMHS hired its first as Colleagues Consumer Affairs Specialist. The consumer/survivor self-help movement With the passage of the Americans with also has had a substantial influence on Disabilities Act (ADA) in 1990, employment in increasing the utilization of consumers/ fields outside the mental health sphere has survivors as employees in the traditional become, for the first time, an achievable goal mental health system as well as in other areas for consumers/survivors. This landmark legis- (Specht, 1988; U.S. Department of Education, lation not only makes it possible for persons 1990; Schlageter, 1990; Interagency Council with disabilities to obtain employment, but also on the Homeless, 1991). Consumers/survivors it may assist people with disabilities to main- are being hired at all levels in the mental health tain a job. In addition, the ADA makes provi- system, ranging from case manager aides sions for training consumers/survivors to use to management positions. As consumers/ the legislation appropriately. In the process, survivors enter into leadership positions, employers who otherwise would not be aware many leaders in the field are also disclosing of this important legislation will also be edu- their own mental health histories (Furlong- cated about the rights of Americans with dis- Norman, 1991 and 1988). abilities and their responsibilities as employers A significant development has been the to accommodate special needs in the work- establishment of Offices of Consumer Affairs place (Furlong-Norman, 1991).

14 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

EVOLUTION OF MENTAL HEALTH CONSUMER/ SURVIVOR-OPERATED SELF-HELP PROGRAMS One of the most significant outcomes of the Association (MPA) of Vancouver, met a consumer/survivor self-help movement has similar fate. MPA began as a drop-in center been the development of mental health where consumers/survivors could socialize, consumer/survivor-operated programs. participate in self-help groups, conduct Consumer/survivor-operated self-help advocacy, and obtain assistance in accessing programs are services that are planned, other services, among other activities delivered, and evaluated by consumers/ (Chamberlin, 1978). In consumer/survivor- survivors themselves, although some pro- operated drop-in centers, the participants plan grams incorporate the use of professionals and administer its programs and serve as certain areas of planning, implementation, staff. Drop-in centers frequently operate during and evaluation (Fleming, 1983; Stroul, 1986). evening, weekend, and holiday hours when The majority of consumer/survivor-operated traditional programs are closed (Long with self-help programs are characterized by the Van Tosh, 1988a). values and goals delineated in the discussion MPA expanded its operations to include a of the consumer/survivor self-help movement housing program for consumers/survivors. and, as such, are quite different from those Originally a decidedly “radical” organization, ascribed to traditional professional mental over time, MPA became increasingly health services. As its name implies, in con- professionalized and hired professionally sumer/survivor-operated programs, the role educated staff. of consumers/survivors is changed from Not all consumer/survivor-operated self-help service recipients to service providers, or programs have followed this path, however. what Frank Riessman terms “prosumers” Some have maintained their original values (Riessman, 1989). and their principles and have thrived in the process. One of the oldest programs of this kind is the Ruby Rogers Advocacy and Drop- History of Consumer/ In Center in Cambridge, Massachusetts. Survivor-Operated Programs Founded in the early 1970’s, it remains a Consumer/survivor-operated services (other consumer/survivor-operated program today. than self-help/support groups) are relatively Another drop-in center, On Our Own, is a fix- new. One of the earliest consumer/survivor- ture among consumers/survivors in Baltimore, operated services is Fountainhouse in New Maryland, where it has been steadily providing York City. Founded by a consumer/survivor alternative services for more than 10 years in the 1950’s, it has become the world- (Stroul, 1986). renowned leader of the “clubhouse” movement that provides psychosocial and vocational rehabilitation. Today, however, Fountainhouse Type of Services Offered is no longer consumer/survivor-operated. The range of services that consumers/ Although consumers/survivors are still survivors are now operating is diverse and involved, professional staff assist the pro- continues to grow (Barry, 1991; Furlong- gram’s “members” (Chamberlin, 1978). Norman, 1988; Ohio Department of Mental Another early consumer/survivor-operated Health, 1990). Brief descriptions of 12 of the self-help program, the Mental Patients most common forms of services follow.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 15 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

Drop-In Centers homeless; Project OATS, a street outreach Programs based on the drop-in center model and advocacy program operating in Phila- now operate in many States in a variety of set- delphia, Pennsylvania; and the Oakland tings ranging from small church basements to Independence Support Center, a multiservice over 5,000 square-foot properties. Some drop- center in Oakland, California (National in centers operated on a “shoe string” budget. Association of State Mental Health Program Consumers/survivors serve as volunteer staff Directors, 1992; Long with Van Tosh, 1988a; and programs operate one night per week. Interagency Council on the Homeless, 1991). Others have budgets of over $150,000, employ fulltime staff, and operate seven days Case Management a week. Some drop-in centers are established Consumers/survivors are now operating their solely to provide opportunities for social inter- own case management programs (Furlong- action, while others offer a wide variety of dif- Norman, 1991). An NIMH CSP-funded ferent activities (Long with Van Tosh, 1988a). research demonstration project in Philadelphia investigated the effectiveness of consumers/ Housing Programs survivors as intensive case managers Housing programs are another service being (Solomon, 1992). It found that consumers/sur- operated increasingly by consumers/survivors. vivors were as effective as non-consumers/ Housing options available under these pro- survivors in providing case management serv- grams range from various kinds of group ices. In New York, the Bronx Psychiatric housing (including a low-demand residential Center has incorporated consumer/survivor program) to supported independent living peer specialists into case management teams, arrangements. Collaborative Support while in Sacramento, California, consumer/ Programs of New Jersey has sponsored the survivor community support services coordi- development of a unique partnership between nators are employed to assist “clients” in ac- a nonprofit housing rehabilitation/development cessing non-traditional case management corporation and a local Mental Health services (Furlong-Norman, 1991). To prepare Association to provide housing alternatives to consumers/survivors to work as case manage- consumers/survivors (National Association of ment aides, Colorado offers a special training State Mental Health Program Directors, 1992). program in case management for Counter Point in Salt Lake City, Utah, is also consumers/survivors. collaborating with the local public housing authority to locate housing for some of its Crisis Response members, while Safe Harbor Housing of Consumers/survivors also are operating Rhode Island is both developing and operating respite programs for those in emotional crisis housing services by and for consumers/ (Stroul, 1986). These programs provide a safe, survivors (National Association of State supportive, and comfortable setting where indi- Mental Health Program Directors, 1992). viduals can obtain some relief from their problems without the stress, coercion, and often Homeless Services public shame associated with traditional, pro- Consumers/survivors are also developing fessional crisis response services. Telephone services geared towards consumers/survivors hotlines, as well as temporary shelter during experiencing homelessness. Examples crises, are key features of these services. include: Project Acceptance, a drop-in center Project Acceptance has begun to provide located in Lawrenceville, Kansas, that pro- these services for its members, as does the vides housing services for persons who are

16 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

Next Step Respite Center in Ohio (Ohio survivor involvement in research, evaluation, Department of Mental Health, 1990). and data issues.

Benefits Acquisition Technical Assistance Consumer/survivor-operated benefits acquisi- The consumer/survivor-operated National tion projects like BACUP in Los Angeles assist Empowerment Center in Massachusetts and their peers in accessing benefits and services the National Mental Health Consumers’ Self- to which they are entitled (e.g., Social Security, help Clearinghouse in Pennsylvania are fund- housing). Consumers/survivors report trusting ed to provide technical assistance to help and feeling comfortable with peers who have other consumers/survivors implement self-help experienced problems similar to their own programs and address other issues. In addi- (Long with Van Tosh, 1988a). Some benefits tion, a number of consumer/survivor-operated acquisition programs also provide assistance organizations sponsor training workshops, with case advocacy in order to protect the conferences, and seminars to transmit rights of consumers/survivors. needed information and techniques to other consumers/survivors. Anti-Stigma Services Consumers/survivors operate many types of Employment anti-stigma services including repertory com- Consumers/survivors have also conducted panies (Project Return Players), speakers employment programs that include job train- bureaus (Project Overcome), slide presenta- ing/placement efforts (the former group ACT tions (PCPL), and video productions (White NOW in Pennsylvania) and job support Light Communications) (Rogers, S., 1988; groups (I CAN in Lancaster, Pennsylvania). Lovejoy, 1988; Schlageter, 1990). In addition, there are a growing number of consumer/survivor-operated businesses, espe- Advocacy cially in Ohio, which include such enterprises Many consumer/survivor-operated self-help as a jewelry cooperative (Jewelry Plus programs also provide advocacy services to Craft Cooperative); a tea house (Shining their members in an effort to provoke funda- Reflections); and a landscaping business mental change. The Alliance of Syracuse, New (Your Personal Landscaping and Cleaning York, for example, has sponsored educational Company) (Ohio Department of Mental training for consumers/survivors across the Health, 1990). country who wish to learn more about advocacy skills. The Alliance has also been an Managed Care ardent supporter of individual patients’ rights With the recent development of Medicaid man- and has provided support to persons in need aged mental health care, consumers/survivors of advocacy (The Alliance, 1993). have begun to respond by organizing and educating themselves on how this will affect their Research services and their lives. A notable effort has Consumer/survivor-operated research been the Consumer Managed Care Network programs are a very new development. which has developed a “Platform for Action”, Currently, Well-Being Programs, Inc., and indicating, from a consumer perspective, quali- the Consumer/Survivor Work Group on Policy ties of a responsive managed care system and Research have pioneered consumer/ (Consumer Managed Care Network, 1996).

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 17 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

Structure and Organization of potential for co-optation. Others view them as funds that consumers/survivors have earned Consumer/Survivor-Operated through paying taxes and to which they are Self-help Programs entitled. The few organizations with large Mental health consumer/survivor-operated budgets (over $500,000/year) have relied pri- self-help programs are organized in a variety marily on governmental funding. It is clear, of ways to achieve their aims. While the type however, that the majority of consumer/sur- of service dictates organizational specifics, the vivor organizations have difficulty raising the literature suggests that there are similarities resources necessary to accomplish their aims among programs. As mentioned earlier, con- due to the current economic health of the sumer/survivor-operated efforts are based on Nation, the lack of focus on human services, the values and guiding principles of the con- and the persistent stigma that is attached to sumer/survivor self-help movement. Thus, “mental illness” and consumers/survivors egalitarianism is fostered as well as a (Furlong-Norman, 1988a). non-hierarchical approach. Peer support, empowerment, and respect for individuals are also promoted (Zinman, et al., 1987; Program Administration Segal, et al., 1991). and Leadership The differences come into play when these Although consumer/survivor self-help organi- values are operationalized. While some pro- zations strive to manage and administer their grams take a firm line in adhering to egalitar- programs in accordance with the values of the ian and non-hierarchical values, others do not. movement, a number of different leadership The question then becomes: does a consumer patterns have developed. Ideally, there would /survivor-operated self-help organization cease be no formal leadership or leadership would to exist when it no longer practices its stated be shared among all the project’s members values (Zinman, et al., 1987; O’Hagan, 1991)? or staff. A few programs adhere to this strate- The CSP Consumer/Survivor-Operated gy and also attempt to use a consensus Services Demonstration Projects described model, whereby everyone must agree on in Chapter 2 provide some preliminary a particular course of action before it is imple- information that will be useful in answering mented. At the other end of the spectrum are this question. organizations that have become hierarchical and bureaucratic as they have grown larger. In these programs, leadership is clearly Funding defined. In the middle, where most projects Funding for consumer/survivor-operated probably lie, there is a mix of leadership and self-help programs originated from a mix of decisionmaking styles. For example, while a sources, including: grants from Federal, State, program may have formally defined leaders, and local Mental Health Authorities, foundation democratic participatory management prac- and corporate grants, membership dues, and tices are also employed (Zinman, et al., 1987; private donations. The majority of programs Emerick, 1989). receive a relatively small amount of money for operations (Zinman, et al., 1987; National Mental Health Consumer Self-help Staffing Clearinghouse, 1991; Yaskin, 1992a). Staffing patterns also vary greatly from organi- Some organizations have objected to the zation to organization. Since most consumer/ use of Government funds because of the survivor self-help programs have insufficient

18 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review funding to support paid staff, volunteers often movement. In most programs, Boards of comprise the majority of the workforce. In Directors are composed entirely of consumers/ some programs, job responsibilities are shared survivors. Those that depart from this practice and staff work part-time (Zinman, et al., 1987; usually have a majority representation of con- Yaskin, 1992a). sumers/survivors. Of these programs, some It appears that the availability of support on deliberately offer a Board position to a high- the job (a feature that appears to be inherent profile community member or attorney in order in consumer/survivor organizations) is very to obtain expertise in a particular area. These important for consumers/survivors to succeed consumer/survivor-operated programs believe in the work place. In keeping with the Ameri- that this practice is permissible, as long as cans with Disabilities Act, consumer/survivor- consumers/survivors constitute the clear operated services provide greater “reasonable majority on the board (Zinman, et al., 1987). accommodations” (e.g., “flextime”, additional breaks, time off for appointments) to their staff members than more traditional organizations Research and Evaluation do and are more sensitive to the issues their Research and evaluation on consumer/ employees face. survivor-operated programs is sparse; the findings presented in this report comprise the most comprehensive examination of its kind Populations Served to date. However, some individual programs Given that research and evaluation have not (e.g., Project OATS in Philadelphia) have com- yet become standard activities for these con- pleted evaluation studies that demonstrate that sumer/survivor-operated programs, it is difficult consumers/survivors are successful in provid- to accurately define the population that they ing services to their peers (Van Tosh, 1990). serve. From the literature, it appears that they The two Federally funded research centers serve people who are hesitant to utilize exist- mentioned earlier are pursuing research into ing traditional professional services for a num- the issue of consumer/survivor self-help and ber of reasons, including: the past treatment a number of independent researchers (e.g., they have received; the cost of traditional Phyllis Solomon, Julian Rappaport, Caroline services; the amount of support provided at Kauffman, and Athena MacLean) are also consumer/survivor programs versus traditional beginning to investigate this phenomenon fur- programs; and the stigma associated with ther. Recently, for example, Solomon released seeking professional services. Depending findings indicating that consumer/survivor case upon their location, some mental health con- managers are as effective as non-consumer/ sumer/survivor-operated self-help programs survivor case managers in providing services may serve only a few individuals a week, while (Solomon, 1992). others in heavily populated urban areas may In addition, consumers/survivors have serve hundreds in the same time period begun conducting research themselves. (Gartner and Riessman, 1984). Among their initiatives are an evaluation project directed by Judi Chamberlin at the Boston University Center for Psychiatric Rehabilitation Program Governance and the newly emerging Consumer/Survivor Governance of consumer/survivor-operated Work Group on Policy and Research. programs tends to follow the values of the

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 19 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 1. The Consumer/Survivor Self-help Movement: A Literature-Based Review

Interaction with While some observers have argued that this is the type of healthy political discourse found in Other Agencies any movement, others have seen these divi- Mental health consumer/survivor-operated sions as destructive to the sense of unity self-help programs interact with the traditional needed to accomplish common goals. State- professional system in a variety of different wide organizations, on the other hand, have ways (Emerick, 1990; Boltz, 1992; National made great strides in bringing various inde- Association of State Mental Health Program pendent consumer/survivor-operated programs Directors, 1989; Kaufmann and Freund., together to work collectively for positive change 1988). Some self-help programs form partner- and for the further development of ships with other agencies, while others retain consumer/survivor services. an independent stance and so do not partici- From this overview of the literature, it is pate in outside collaboration. The Center for clear that there is much more to be learned Self-help Research is investigating this area to about the phenomenon of mental health con- raise the specific issues involved in forging sumer/survivor-operated self-help services. interorganizational relationships (Hasenfeld The following chapters of this report examine and Gidron, 1992). the results of the 13 CSP Consumer/Survivor- Consumer/survivor organizations are Operated Services Demonstration Projects as also increasing their efforts to work with one the first step in enlarging understanding about another. The development of national and, in the consumer/survivor-operated program particular, Statewide organizations have played model. The descriptions of all 13 individual a role in encouraging consumer/survivor- projects presented in Chapter 2 illuminate proj- operated programs to develop linkages with ect similarities and differences. Chapter 3 each other. However, on the national level, offers a cross-site analysis as well as practical, political differences have created divisiveness program-level suggestions and policy recom- among different factions of the movement. mendations based on those findings.

20 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services Chapter 2 DESCRIPTIONS OF THE 13 DEMONSTRATION GRANT PROJECTS

Project materials from each of the CSP There are limitations to this analytic strategy Consumer/Survivor-Operated Services which may affect the objectivity of the findings. Demonstration Projects were examined in The majority of materials reviewed were self- order to provide an in-depth, cross-program reports created by the projects themselves. examination of each individual initiative. Other materials were often prepared by State Documents that were reviewed included: origi- mental health authority personnel, which fur- nal applications, annual continuation applica- ther complicates validity, as it is possible that tions, relevant correspondence from NIMH, such staff were less familiar with a particular final project reports, and evaluation findings. program’s day-to-day operations than a pro- A variety of program elements were explored: gram coordinator or director would be. The project goals and objectives; services and sup- information within these documents was often ports provided; client population served; orga- incomplete, which further limits the usefulness nizational structure; board development; staff of the documents. Other strategies (such as size, characteristics, and training provided; key informant surveys and site visits) may reasonable accommodation practices; pro- have been able to capture a broader spectrum gram materials developed; implementation of information, and perhaps enhanced the issues; inter-organizational coordination; exis- validity of the “information” or “findings” pre- tence of other self-help programs before and sented. However, resource constraints pre- after the demonstration grant; project budget; vented the use of those methodologies. evaluation strategies and findings; and pro- The above limitations notwithstanding, these gram continuation plans. These domains have analyses do offer a valuable, albeit descriptive, been collapsed into four groupings—Project examination of each demonstration site. The Goals and Objectives, Program Description, individual project findings indicate a variety Implementation Issues and Problems, and of project approaches and successful out- Evaluation Findings—which are presented in comes. Although there was variation from this chapter for each of the thirteen programs site to site, an overall conclusion can be which were funded. drawn that these efforts demonstrated efficacy in meeting consumer/survivor needs.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 21 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

CALIFORNIA Alameda County Network of Mental Health Clients

Berkeley Drop-In Center Berkeley, CA

Oakland Independence Support Center Oakland, CA

“...Since I’ve been working here...I have felt worthwhile because I’ve been able to help people. Knowing that I’m contributing to society makes me feel like I’m worth something. I also feel safe and confident to be me and work to help people in an environment of people who are like me.” —Project staffer (OISC)

PROJECT GOALS PROGRAM AND OBJECTIVES DESCRIPTION The grant funded the Alameda County Network of Mental Health Clients (ACNMHC) Services Provided to expand the Oakland Independence Support The BDIC offered direct services (a drop-in Center (OISC) and the Berkeley Drop-In center, support groups, case advocacy, gener- Center (BDIC). Grant funds were used to alized advocacy, information and referral, enable these programs to expand client serv- instructional groups, free food, phone, books, ices to better meet their service recipients’ magazines, transportation assistance, and demonstrated need. This was to be accom- clothing) and recreational activities (social- plished via a “Coordinated Self-help System” ization and art activities). (CSHS), which was designed to centralize The OISC offered a community drop-in shared resources, including administrative center (free coffee, food, support groups, services, storage space, bookkeeping, statis- and peer counseling), independent living tics, insurance costs, and medical coverage. services and independent living skills CSHS was also designed to enable the hiring training mailing address, bathroom and and assignment of additional staff, develop a shower facilities), and information and volunteer resource bank, and conduct coordi- referral (advocacy, housing search assis- nated outreach, evaluation, and fundraising. tance, money management assistance, CSHS was conceptualized as a self-help/ and outreach to other programs). mutual support approach to peers helping one As a result of this funding effort, the pro- another—a “self-help program for self-help grams were able to increase their operating programs.” It was hoped that the expanded hours, increase the number of instructional activities resulting from the grant would lead to groups and support groups offered, and offer the development of a model which could be additional advocacy, socialization, and sub- replicated elsewhere. stance abuse counseling services. Guidelines

22 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects for volunteer recruitment were developed, and Program Coordinator/Director of each. Over a brochure and mailing list were created to time, a decision was made to eliminate the assist in project outreach. Successful fundrais- Coordinating Committee, as its function was ing enabled the ACNMHC to obtain a contract duplicative of the ACNMHC Board. Both proj- with the Alameda County Mental Health ects had a shared staff and administration. Department to provide tenant support services Shared paid staff consisted of an Adminis- to consumers/survivors living in the Aztec trator; an Administrative Assistant; a Field Hotel, a large, nonprofit, consumer/survivor- Advocate who advocated for entitlements, operated, single-room occupancy hotel. housing, and rights protection; an Independent Living Specialist who conducted skills workshops, assisted service recipients in obtaining Individuals Served housing, and provided benefits counseling, Service recipients were defined as individuals information and referral, and case advocacy; who had a history of psychiatric disability. The an Activities Coordinator; and a Substance Final Report indicated that BDIC estimated Abuse Peer Counselor. Paid consultants were the total unduplicated number of individuals utilized for program evaluation, fundraising, served for the entire project was 1,600, while bookkeeping, and graphics. Unpaid staff OISC served approximately 1,900 different consisted of a Program Coordinator and an individuals. Service recipients had the follow- Activities Coordinator at BDIC, and a Program ing characteristics: 95% were homeless or at Developer, a Program Services Coordinator, risk of being so; over 98% were very low- an Administrative Assistant, and Information income; the majority were African American and Referral Specialist, a Housing Counselor, males; most were between the ages of 22 and an Independent Living Skills Trainer, an Intake 44; 26% had no high school diploma, 53% Worker, and a Peer Counselor at OISC. graduated high school, 16% had some col- Volunteers averaged 225 hours per month lege, and 5% were college graduates; and at each center to assist with structured social- nearly 30% were veterans. ization activities, food preparation, facilitating support groups, and site maintenance. The Final Report estimated that over 350 con- Organization and sumers/survivors volunteered during the Administration grant period in a wide variety of tasks. The grant was provided to the California Most staff were African American men; Department of Mental Health (DMH), which all were disabled, all were low-income when initially passed the funds through Berkeley- hired; all had experienced homelessness; Oakland Support Services (BOSS). BOSS, in and all were consumers/survivors. The turn, provided the funding to the Alameda ACNMHC has an affirmative action plan that County Network of Mental Health Clients emphasizes ethnic minorities, women, and (ACNMHC), which then funded the separate disabled individuals in all roles within their BDIC and OISC projects. Later in the grant, programming: as participants, as staff, and both centers as well as the ACNMHC attained serving on governing bodies. nonprofit status and were able to directly Employee orientation and as-needed, on- receive the grant funds. the-job training were provided. Group training A Coordinating Committee reported to the was also provided for the staff, volunteers, and ACNMHC Board and was composed of three service users on such topics as peer counsel- at-large members of the ACNMHC Board and ing, benefits advocacy, community resources, three members from each center, including the substance abuse, HIV/AIDS, TB and other

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 23 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects public health issues, civic involvement, defus- Heavy Workload and Staff Turnover ing potentially violent situations, performing During the early phase of the grant, there was intakes, and chairing meetings. some staff turnover. In addition to the staff A number of administrative and program turnover, it was reported in Year 2 that the materials were developed, including person- individual projects believed that the CSHS nel policies, financial/accounting forms, administrative office and staff were unable to and client forms. ACNMHC, BDIC, and carry out both the functions of ACNMHC and OISC coordinated their activities with a wide the functions of the two centers. Eventually, num-ber of other organizations and entities, some shared administrative support, such as including community service agencies, advo- bookkeeping and statistics, was dropped. cacy agencies, State consumer/survivor organizations, local mental health and homelessness committees, providers of services to SUCCESSES AND the homeless, mental health providers, State EVALUATION FINDINGS and local mental health authorities, churches, Evaluation data were collected from a variety foundations, researchers, legal centers, and of sources, including observations, interviews, neighborhood associations. discussions, and the use of program docu- A total of $390,742 was spent on this ments, records, and quantitative data. effort over the three years of project funding. The Final Report noted that the demonstra- Of this amount, $376,238 came from Federal tion project essentially looked as planned. funds and $14,504 came from miscella- ACNMHC became an effective “umbrella” neous sources. organization with shared resources, staffing, and administrative assistance. It was agreed that some of the administrative functions for IMPLEMENTATION the two centers were not needed and would ISSUES AND BARRIERS have been logistically difficult to provide. Grant Startup Delays and Overall, it was noted that both centers suc- Cashflow Problems ceeded in further developing their programs The project startup was delayed for nine (focusing on social and survival needs), months, which affected hiring, procurement of improving administration and operations (shar- office space, equipment, furnishings and prop- ing of information), and improving recordkeep- erty insurance. This delay was due, in part, to ing and computer capacity. The local centers the 1989 San Francisco Bay Area earthquake. were successful in gaining their own founda- State and Federal officials agreed to roll over tion grants. In Year 3, a funding consultant the first-year funds. This delay, however, was hired, resulting in successful grants caused cashflow problems, and ACNMHC was and loans. initially forced to borrow funds to cover payroll. Boston University conducted an outcome Cashflow problems also prevented the project evaluation that examined program partici- from conducting outreach in the South County pants’ self-esteem, quality of life, satisfaction area, but full caseloads made outreach less with the self-help program, service use, of a priority. and demographics.

24 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

Approximately 18% of the individuals served assistance and training be provided on the were screened and intaked by CSHS staff at topics of board development, fundraising, both sites, with interviewers recording various recordkeeping, computer technology, and per- data. The services used by the most people sonnel policies and procedures (including laws were: hot meals (100%), transportation assis- and regulations governing employment prac- tance (100%), social/recreational activities tices). It was also recommended that when (93%), telephone services (88%), food referrals Federal funding is temporary, there should be (84%), peer counseling (76%), independent liv- formal and concrete agreements with State ing skills training (60%), and peer support and local mental health funding agencies to groups (60%). continue funds past the grant period. Lastly, it A correlational analysis revealed was recommended that funds should not be the following: channeled through the State mental health system, as this causes additional delays in • Individuals who participated at a higher project startup. Funds should be provided, level in the program had higher levels of instead, directly to the recipient organizations. program satisfaction and had increased The Final Report suggested several inter- self-esteem and quality of life. esting hypotheses for further evaluation: • Findings suggested that persons with long • Outreach to ethnic minorities is best psychiatric histories (including frequent accomplished when a program is and long hospitalizations) benefited at the situated in that community. same levels as other participants in terms of the program’s impact on self-esteem. • Both services and social activities are needed for a viable program. • There was no difference between members of different races or individuals with • Programs such as these attract people homeless status in terms of self-help pro- who are distrustful and resistant to gram impact on self-esteem, satisfaction, traditional mental health services. or quality of life. • An umbrella organization is essential • No significant correlation was found be- for cooperation, communication, and tween taking or not taking medications coordination for client-run programs and self-esteem, satisfaction, or quality in the same geographic area. of life. However, there was a relationship BDIC and OISC both obtained city funds approaching significance between sat- to continue two positions until ACNMHC isfaction with the program and taking could obtain ongoing funds. Eventually, medications (those who do not take ACNMHC obtained county mental health medications reported being more satis- funds to continue operations. fied with the program). The Final Report recommended that additional and more comprehensive technical

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 25 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

COLORADO The Phoenix Project Denver, CO

“I feel [it] was a success and made a success by empowered consumers...I can honestly say I learned to use my brain, my knowledge, instincts, wisdom, courage, personal beliefs, education and experience in life...I learned the real meaning of team work...” —Project staffer

that these efforts would employ 50 consumers/ PROJECT GOALS survivors serving 500 consumers/survivors in AND OBJECTIVES the community. The overall goal of The Phoenix Project was to The parent corporation provided initial sup- develop a consumer/survivor-controlled and port (startup funding), administrative and man- -operated “superstructure” for the develop- agement services as needed (e.g., training, ment, creation, and sustenance of nonprofit accounting, marketing, and data processing), and forprofit consumer/survivor-managed affili- and access to, and coordination of, community ate business enterprises. These affiliate enter- resources on a cooperative model. The super- prises would employ consumers/survivors and structure of the corporation provided a com- would provide various direct services and mon job center for all affiliates, public rela- alternatives to traditionally based mental tions, technical assistance, and fundraising. health services to other consumers/survivors. There were also plans to disseminate project It was hoped that the grant would provide ini- results throughout the State and nationally. tial funds for startup costs and that later each The Final Report indicated that over time, it affiliate and the “superstructure” would be self- became clear that the objectives were too sufficient from sales and funding support from ambitious, so they were revised, with NIMH other agencies and foundations. approval, as follows: to develop seven busi- Specific objectives included developing nesses, of which at least three would provide at least seven affiliate businesses (of which alternative mental health services. These busi- five would provide mental health services, nesses would provide alternative services to such as case management, drop-in centers, 200 consumers/survivors. respite programs, job coaches, companion programs, housing support staff, and vocational case management). Other suggested PROGRAM business ideas included: property manage- DESCRIPTION ment and maintenance, bulletin board services, car detailing, photo finishing, messenger Services Provided service, phone marketing, wholesale handi- After a lengthy RFP process, seven craft and art, catering/box lunches, and consumer/survivor-managed businesses temporary employee services. It was hoped were selected for startup funding, with six

26 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects being successfully established. These included nally intended that each affiliate business an auto repair service, Leopard Automotive; a would have its own Board and staff, although telephone help line, The Helping Ear; a desk- further information was not reported. top publishing firm, Phoenix Publishing; an Initially, a Board of Directors was to be auto repair referral service, AutoMedic; a composed of both consumers/survivors and rental management project, Phoenix Property non-consumers/survivors, as well as minority Management; and a benefits assistance proj- representation proportional to the State’s ect, Professional Benefits Assistance. makeup. After a lengthy process (which in- The Helping Ear provided information and cluded nominations, written evaluations, and advocacy, peer counseling, benefits acquisi- in-person interviews), seven consumers/ tion assistance, and crisis intervention. Grant survivors and four non-consumers/survivors funding also enabled The Phoenix Project to were chosen for the Board in late 1989. The provide technical assistance to consumers/ Final Report indicated that a total of 31 con- survivors. This technical assistance was sumers/survivors and 6 non-consumers/ focused on specific skills such as cash register survivors had participated on the Board operation; interpersonal skills such as conflict over the length of the project. management; and business development, Paid staff consisted of an Executive management, and other administrative skills Director, an Assistant Director, a Consumer such as bookkeeping, purchasing, payroll, Project Coordinator, an Administrative board development, and fundraising. Lastly, Assistant, and a Bookkeeper. The State also the funding enabled The Phoenix Project to provided inkind staff support through a disseminate project results through presenta- Community Support Program Director and a tions at international, national, Statewide, Human Resources Development Assistant. and local conferences, as well as through The Final Report indicated that other part-time providing information to over 300 contacts staff and consultants were hired to assist with and through coverage in newspaper articles administrative tasks including help from a and newsletters. Business Manager and an Operations Manager. The Report also indicated that 100 consumers/survivors over the entire project Individuals Served period participated as staff, consultants, board The project focused on serving individuals members, or volunteers. Nearly all paid staff designated as having a psychiatric disability. were consumers/survivors; consultants were The Final Report indicated that a total of 500 generally non-consumers/survivors. individuals received services from the affiliated Staff were provided with training on non- telephone information service, The Helping profit organization development, business Ear. Characteristics on the clients served by management, specific employment-related the other affiliate businesses are unavailable. skills, and interpersonal skills. In Year 2, the project determined that it would encourage its affiliate businesses to offer low-stress, flexible, Organization and supportive above-minimum-wage jobs (with Administration time off for doctors’ appointments, if needed), The grant was provided to the Colorado career advancement, and assistance to staff Division of Mental Health, which provided the in achieving financial independence. It also funds to The Phoenix Project. The Phoenix decided to offer case management to those Project’s structure consisted of a Board of who were transitioning back to work and Directors and a central office staff. It was origi-

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 27 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects regular support groups for employees to see technical assistance, priority setting, and over- if their needs were being met. all direction, which was ultimately detrimental. A number of pertinent materials were devel- The affiliate businesses were initiated in an oped as a result of this effort, including a per- artificial environment. The Board and staff had sonnel handbook, a Request for Proposals, to train others on how to develop a Board and and Board application forms. The project was organization at the same time they were learn- coordinated with a number of organizations ing to do it themselves, and this contributed to and entities, including retired business execu- the difficulties. It was recommended that more tives, training centers, mental health providers, time should have been allocated to these and colleges. In terms of the project’s impact organizational development tasks. Additional on the region, prior to the grant, there was a problems mentioned were expediency of deci- consumer case management program in sion making (too many decisions were made Denver and a few self-help groups in the area. in times of crisis), and the isolation of Board After the effort, The Helping Ear and the members from one another. Statewide consumer/survivor organization Survivors and Consumers of Colorado Organized for Rights and Empowerment SUCCESSES AND (SCCORE) had been developed. EVALUATION FINDINGS The Final Report indicated that the total The project evaluation was originally con- Federal funding for the project was $450,000. ducted by an independent consultant; this was later contracted to the Center for Technical Assistance and Training at the University of IMPLEMENTATION Northern Colorado. Project document analyses ISSUES AND BARRIERS and key informant surveys were the principal Several issues were encountered in the imple- sources of data. mentation of this initiative. Delays in startup The Final Report stated that Board mem- occurred, due to some State-level staff bers experienced positive impacts, including: turnover; as a result, a project extension was more knowledge of services available, knowl- granted. Turnover in the Executive Director edge of consumer/survivor needs, knowledge position and Board members also contributed of business and legal issues, and a growing some difficulties. Tensions over control de- sense of empowerment. veloped on the Board between consumers/ Overall, it was found that the number survivors and those who were not consumers/ of consumers/survivors employed was survivors. Eventually, at the end of the project, considerably lower than that expected and the Board was composed of all consumers/ that self-supporting businesses are a difficult survivors, except for one member. The amount undertaking under even the best circum- of resources needed to accomplish the original stances. The project did appear to enable goals was underestimated, and limited finan- people to develop skills to seek employment cial resources hindered the program’s suc- elsewhere. Some comments provided by the cess. Superstructure delays in providing sub- Board and the staff: “. . . Consumers were grants to the affiliate businesses resulted in motivated to consider themselves as positive the State threatening to withhold funds for members of society . . .”, and “. . . It was the entire project. highly successful in empowering the consumer Board and staff members both felt that there participants and in providing them with a was a lack of expertise in marketing ap- variety of interpersonal, leadership, and proaches, financial management knowledge, employment-related skills.”

28 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

Some overall recommendations were • Longer-term funding should be secured offered by the evaluation: (e.g., a five-year grant, which would allow for greater success, given that • Ongoing training should be provided most startup businesses take three to for staff on mission, policy and proce- five years to establish themselves); dures, orientation, team building, communication, best business practices, • The necessity of being proactive and tak- and management issues, and for the ing a planned, systematic approach to Board on such areas as communication, completing the project should be empha- problem solving, decision making, and sized; and leadership development; • There is a need for effective team • Effective communication needs to be decision making, values clarification, improved between the Board and staff; community linkages, and sound management philosophy. • Minority representation needs to be increased throughout the program; Additional recommendations were made regarding rewards and incentives. The • A business advisory committee should project should: be established to direct and advise the businesses proposed; • Find ways to concretely celebrate each success, no matter how small (thank- • The search for additional funding to you notes, extra break times, congrat- maintain the project’s financial viability ulation phone calls); should be continued; • Recognize work done well (employee- • Career planning for consumers/survivors of-the-month, newsletter mention, letters for long-term employment goals should of recognition); be implemented; • Develop incentive programs based • Ongoing outreach to consumers/ upon employee choice and personal survivors who might not be a part of values; and he formal mental health system should be continued; • Treat people with unconditional respect and use rewards strategically but often. • Realistic expectations regarding the project should have been established so that After the grant, attempts were made to participating consumers/survivors were locate ongoing funding, but these were ulti- not set up for disappointment; mately unsuccessful. The Phoenix Project ceased operation in April, 1993.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 29 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

INDIANA Knowledge Empowers You Indianapolis, IN

“KEY has helped me to be more motivated and more independent and also it has made me think of myself as a useful person for a change, and not just someone with an illness...” —Project participant

tion, assisting in developing a coalition of con- PROJECT GOALS sumers, family members, and providers, pro- AND OBJECTIVES moting consumer/survivor representation on The overall mission of this effort, as stated in boards, and organizing an improvisational the- the original application, was to empower con- ater group and a media anti-stigma campaign. sumers/survivors by creating opportunities to increase self-esteem, self-reliance, and independence through strengthening support net- PROGRAM works and advocacy efforts. Specifically, this DESCRIPTION was to be accomplished by developing and setting up an Office of Consumer Affairs Services Provided (OCA) within the Indiana Department of Grant funding enabled the project to provide Mental Health, via the Mental Health Assoc- the following services: iation of Indiana. The OCA would establish • Organizational Development. The proj- links with consumers/survivors, family mem- ect established the KEY Consumer bers, providers, and others. It was proposed Organization, a Statewide consumer/ that this effort would develop a telephone tree survivor organization. A Statewide for legislative alerts, distribute monthly bul- Consumer Advisory Council and two letins, publish a quarterly newsletter, and regional Councils were also developed. sponsor quarterly meetings of State and A development professional was hired to regional councils. initiate fundraising activities, and prepa- Additionally, the project would work towards rations were made for writing several developing a structure for the consumer/sur- grant proposals. vivor movement and provide training on starting self-help projects. One component of this • Technical Assistance. Onsite technical training was to develop a model for self-help assistance was provided throughout the groups known as KEY (Knowledge Empowers State. Eight KEY self-help groups were You) groups. The project also hoped to de- developed, and a leadership training velop a mailing list of consumers/survivors. retreat was held. Training was organized A training package for use in public speak- on serving on boards and committees, ing was to be developed as part of a speakers peer support group leadership and facili- bureau. Other plans included organizing a tation, and communication skills. A peer Statewide conference, information dissemina- counseling training program was started,

30 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

which provided 28 hours of initial training ranged from 15 to 80; more women were for those interested in being case aides. served than men; service recipients were The Statewide network was expanded to mostly low-income; and there was an increase over 750 consumers/survivors. Two in minority service recipients being served, Statewide conferences for consumers/ over time. survivors were held. Scholarships were provided to over 80 consumers/survivors to attend conferences and meetings. Organization and • Advocacy. Various advocacy efforts Administration The grant was provided to the Indiana were conducted around the State, includ- Department of Mental Health, which provided ing obtaining consumer/survivor repre- the funding to the Mental Health Association sentation on patients’ rights committees, (MHA) of Indiana. Initially, a Consumer Advis- holding sessions for the purpose of ory Council (CAC) was established and com- meeting legislators, and holding meet- posed of representatives from across the ings to discuss consumer/survivor rights. State. During the second year of the project, • Information Dissemination. an all-consumer/survivor Board of Directors KEYNOTES, a newsletter, was published was formed, formal bylaws were established, and disseminated to over 1,000 individu- and the project was formally incorporated. By als. A speakers bureau was organized the project’s end, the KEY Consumer Organ- and provided over 125 educational pre- ization was directly receiving the grant from sentations and workshops. A toll-free the State. hotline was established and provided Paid staff consisted of a Consumer Affairs information and referral services to Director, an Assistant Director, an Adminis- consumers/survivors. Improvisational trative Assistant, an Evaluator Assistant, and theater groups were established, and a Newsletter and Filing Assistant. Paid staff these conducted a number of educa- were primarily Caucasian, middle-aged women. tional performances. Over 100 volunteers assisted in many different areas. Staff training was provided on computer technology, sign language, and newsletter Individuals Served development. “Flextime” was provided to staff. The following criteria were designated A large number of service-related program for individuals who were to be served by and administrative materials were developed the program: during the course of the project, including leg- • Persons with a psychiatric disability; islative training information and a support group model description. This project inter- • Former or current patients or service acted with a number of public and private recipients of the mental health treatment groups, including family groups, other con- system; or sumer/survivor groups, mental health pro- • “Concerned others” who want help or viders, vocational rehabilitation offices, and referrals for mental health or consumer/ protection and advocacy agencies. survivor services. The reported total costs for this effort were No specific client characteristics were $166,198, with approximately $161,000 in reported, but the following general characteris- Federal funding. tics were observed: service recipients? ages

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 31 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

Other Issues IMPLEMENTATION Staff noted that the most critical problem, by ISSUES AND BARRIERS far, has been the lack of money. Other prob- Reorganization of Fiscal Agent lems included limited staff resources and In Year 2, the KEY Consumer Organization interpersonal conflicts among staff. was established as a nonprofit with bylaws, etc. It was felt that some of the problems experienced by the project were related to the SUCCESSES AND original fiscal agent’s lack of understanding EVALUATION FINDINGS regarding the autonomy of KEY. KEY subse- Although formal program evaluations were not quently moved out of the agent’s offices and completed (according to the Final Report), an opened an independent office that was pro- informal evaluation was conducted with recipi- vided by the State at no cost. ents of KEY services. Results were generally positive. Some of the comments Regional Councils Were included: “KEY has created a greater aware- Not Developed ness of consumer needs and issues especially It was originally planned that regional advisory in the provider community...the main success councils would be developed throughout the of KEY has been the empowerment of the con- State. These councils were ultimately not sumers . . . ,” “. . . The KEY Consumer Organi- developed due to support groups not being zation has been a blessing to many people stable and geographic distance. who suffer from mental illness. People who have been empowered by KEY have gone on Obtaining Representation on to live very productive lives.”; “Thanks to KEY I Patient Advocacy Committees can stand up for my rights and do many other in State Hospitals things I never could before I came to be Delays were experienced in realizing this involved with them . . . I now have confidence objective due to the lengthy processes State and can do much better than I ever have hospitals used in appointing representatives to before.”; and “It’s made a difference in my life.” these committees. During the project period, a new Depart- ment of Mental Health Commissioner was Lack of Involvement of People appointed. He was considered progressive of Color and supportive of consumer/survivor initiatives Staff reported that “. . . members of KEY feel and mandated more consumer/survivor they have tried and failed at attracting the involvement. It was reported that KEY re- minority populations and they are unsure ceived a portion of an NIMH/CMHS Services of what else to do . . .”. System Improvement Grant to provide continued services to consumers/survivors.

32 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

MAINE Portland Coalition for the Psychiatrically Labeled Portland, ME

“...We are on the cutting edge of the mental health system— being a consumer organization. We’re working together to make it fly. We have something we can prove. We can make a difference.” —Project staffer

• Drop-In Center. The Drop-In Center pro- PROJECT GOALS vided social and informational activities AND OBJECTIVES to benefit members, developed a mem- The goals of this effort were “...to empower bership list, held monthly membership and enable persons who are psychiatrically meetings, and distributed a monthly labeled to help themselves and other psychi- update of activities. atrically labeled persons [and] to enable con- • Peer Support. The project held frequent sumers to assume and maintain equal status and regular peer support meetings, con- as partners in the mental health system.” ducted outreach and peer support for Specific objectives included funding the individuals in nursing homes and Portland Coalition for the Psychiatrically schools, offered informal support to Labeled (PCPL) to: develop the necessary those discharged after long-term institu- infrastructure and breadth of competency to tionalization, provided one-on-one coun- operate effectively; refocus PCPL on in-house seling for support on independent living member activities; turn volunteer service into skills, and conducted specialized peer paid employment; and create a model for con- support groups for alcoholism, homeless- sumer/survivor-operated peer support, advo- ness, and posttraumatic stress disorder. cacy, education, and training services. • Respite/Crisis Assistance. PCPL provided assistance on a limited basis by PROGRAM referring individuals to other services DESCRIPTION and working with staff of a crisis stabilization project to monitor and evaluate Services Provided their program. Grant funding enabled PCPL to provide the • Empowerment. The project empowered following services: consumers/survivors through greatly • Administration. The project developed increasing the membership and enabling an in-house financial system, conducted PCPL to conduct special outreach to fundraising, developed a Board, and minority groups. wrote bylaws and personnel policies.

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• Independent Living Programs. The The PCPL administrative structure was project established a stipend program composed of a Board of Directors, staff, and which assisted individuals in developing members. The PCPL Board existed prior to job skills and provided information and the grant and was composed entirely of con- referral services. sumers/survivors. The Board was elected annually and was provided with training. Paid • Public Education. PCPL published a staff included an Executive Director, an newsletter three times per year and Assistant Executive Director, a Consultant/ distributed it to over 1,500 people and Planner, an Office/Work Skills Manager, a produced a slide show on stigma. Peer Support Program Coordinator, a House • Advocacy. The project conducted regu- Advocate, a Clerical Supervisor, and Stipend lar monitoring visits to institutions, testi- Workers. The State also provided three inkind fied to State legislators, and filed a class positions, serving in the roles of Community action lawsuit against the Augusta Men- Support Program Director, Mental Health tal Health Institute regarding patient Program Coordinator, and Management deaths. PCPL members participated on Analyst II. PCPL staff characteristics were not various mental health committees and provided in detail, but it was noted that all task forces Statewide. were consumers/survivors. It was reported that staff attended training sessions in management skills and desktop Individuals Served publishing. In addition, stipend workers All individuals who were psychiatrically labeled received group and individual training, and or psychiatrically disabled were eligible to advocacy training was provided to members receive project services. It was reported that and staff. “Flextime” was available to staff by PCPL experienced a fourfold increase in the prior agreement with the Executive Director. number of individuals served during the grant Leaves of absence due to illness could be period. Little data were provided on character- granted for up to six months. istics of service recipients who used services. A number of materials were developed over A drop-in center evaluation found: a slight the course of the project, including newslet- majority of the participants were male; their ters, a poetry book, a Board training notebook, ages ranged from 32 to 55; all were psychi- a monthly update, bylaws, personnel policies, atrically labeled; all were living in the com- and job descriptions. It was noted that the use munity, and a slight majority lived alone; of documentation (e.g., memos, bimonthly the vast majority were currently receiving update reports) helped to alleviate personnel mental health services; and all had been issues and stabilized the organization. previously hospitalized. PCPL collaborated with a wide array of other organizations in achieving its goals and Organization and objectives, including: other disability groups, the State protection and advocacy agency, Administration mental health providers, nonprofit manage- The grant was awarded to the Maine ment consultants, advocacy groups, and Department of Mental Health, Office of family groups, and universities. Community Support Systems. The State then provided the funding to the Portland Coalition for the Psychiatrically Labeled (PCPL).

34 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

During the grant period, a total of $540,500 Personal Conflicts and Tension was expended for this effort. Of this amount, The reports indicated that interpersonal con- approximately $469,500 was Federal funding, flicts developed between staff and members. $66,000 was State funding and $5,000 was This was a major problem encountered during local funding. the project. It affected the entire staff and membership. This resulted because some members obtained employment, while IMPLEMENTATION others did not. ISSUES AND BARRIERS Listed below are the issues which developed Unclear Priorities during the project’s implementation. A retreat This resulted in problems of resource alloca- at the start of Year 3 developed a strategic tion and staff burnout, and was due to a lack plan for improving internal communication in of organizational planning. order to solicit input from all members, staff, and Board regarding these issues and other internal and external affairs of PCPL. SUCCESSES AND EVALUATION FINDINGS Delay in Project Startup A descriptive, summary evaluation of PCPL’s It was reported that this was due to the drop-in center was completed and was based Executive Director resigning and the time on interviews with members who used the needed to hire a replacement. A reorganiza- drop-in center and observation of drop-in cen- tion occurred after the change in Executive ter activities. This evaluation found that a Director, including other personnel changes majority of participants reported that the center and a revision of the bylaws, personnel poli- has helped them stay out of the hospital; a cies, and job descriptions. The hiring process majority felt more confident since coming to for several staffers took longer than anticipa- the center; almost all would recommend the ted, and there was ongoing staff turnover. center to others; and a majority said that coming to the center has helped them cope better Cancellation of Statewide Expansion with their problems. A decision was made not to attempt to expand The overall evaluation focused on the need within Maine (as originally planned) and for continued development of PCPL organiza- instead to focus programming locally on the tional features, and the following recommen- Portland area. dations were offered by the evaluators:

Lack of Equipment • PCPL should do planning with an expert A lack of typewriters, word processors, and facilitator to clarify priorities, specify other equipment hampered the job training objectives, create an action plan, and stipend program. build cohesiveness. • Training on conflict resolution should be provided to Board, staff, and membership to defuse the tensions that developed during organizational change and growth and employment of certain members.

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• Experts in group process and team build- staff turnover as well as on strengthening ing should be used to provide training to interpersonal relations. staff and Board and serve as facilitators • PCPL should clarify and enforce policies during Board meetings. and procedures, including preparing up- • Board training should be provided to-date policy manuals and offering train- annually, along with a packet of ing to groups and individuals on policy written materials. implementation. • Board terms should be overlapping, and A final comment within the evaluation provisions should be made for alternates. indicated the overall success of this effort: “. . . the project has demonstrated, without a • Leadership training should be provided doubt, that consumers can plan and run to members. their own organization . . .” • Training and technical assistance should PCPL was successful in obtaining funding be provided to the Board and Executive for continued operations. Director on hiring practices to address

36 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

MISSOURI The Self-help Center Kirkwood, MO

“Overall, The Self-help Center stands out as a quite successful program.” —Project participant

ences, published newsletters, distributed PROJECT GOALS 1,000 pamphlets, and developed a clear- AND OBJECTIVES inghouse library. This project developed The Self-help Center, a • Drop-In Center. The center operated 30 drop-in center in Kirkwood, MO, for self-help hours per week, with 20 people served and advocacy services. Specifically, the per day. Weekly membership meetings, Center was set up to offer self-help group exercise classes, and biweekly volunteer meetings, peer case management, a drop-in training meetings were held. center (offering recreational activities, socialization, respite care for families, a game room, • Support Groups. The center sponsored and a reading room), and a self-help and support group meetings of national advocacy clearinghouse (providing hotline model self-help programs such as services, information on advocacy, legislature Recovery, Inc., Project SHARE, visits, position paper development, and publi- Overeaters Anonymous, and the cation of a rights information pamphlet). Missouri Mental Health Consumer Network, among others. PROGRAM Individuals Served DESCRIPTION All individuals with a psychiatric disability were Services Provided eligible for services. A total of 220 members were served, of whom 125 had frequent con- Grant funding enabled The Self-help Center to tact. The average attendance was 16 persons offer the following services: per day. Most of those served were Caucasian • Advocacy. The center assisted in filing a and under age 50. lawsuit on patients’ rights, obtained representation on various boards and committees, collected information on consumer/ Organization and survivor grievances, and advocated that Administration all publicly contracted agencies be re- Initially, the grant was provided to the Missouri quired to have consumers/survivors Department of Mental Health, which then on their Boards of Directors. provided the funding to the Mental Health • Dissemination and Public Education. Association (MHA) of St. Louis. The MHA The center presented at various confer- served as the fiduciary agent for The Self-

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 37 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects help Center. The Center’s members elected A variety of program and administrative representatives to a Board of Directors, as materials were developed, including: drop-in well as officers who functioned in a member/ center rules and regulations, weekly drop-in staff role in running the center. The day-to- center attendance summary, monthly financial day decisions were made by a majority vote reports, and financial procedures. The project of the participants at weekly membership interacted with a number of organizations and meetings. The project eventually received its entities, including advocacy groups, family incorporation and no longer worked through groups, mental health providers, State and the MHA, as it was able to provide its own local mental health authorities, and other accounting services. consumer/survivor self-help projects. The Board consisted of six consumers/ The project documents reported that a total survivors, a family member, and one additional of $490,239 was spent on this effort, of which interested individual. Factionalism within the $461,116 was Federal funding and $29,123 Board presented some obstacles, as did was from other sources. ongoing struggles between the Board and the Director. Paid staff included an Executive Director, an IMPLEMENTATION Assistant Director, a Drop-In Center Manager, ISSUES AND BARRIERS two Clerical Workers, a Homeless Coordinator, The following issues were encountered during a Benefits Acquisition Specialist, a Case the implementation of this project: Management Supervisor, a Clearinghouse • Staff Turnover and Other Personnel Manager/Director of Advocacy, a Maintenance Matters. A major problem was staff Worker, and a Technical Advisor (from the instability, as four employees left. MHA). These positions were primarily part- Another problem was the lack of afford- time positions. All staff were current or former able health insurance coverage. Staff consumers/survivors, with the exception of the were provided with $100 per month for Technical Advisor. Attempts were made to use this purpose, but it did not cover this a Transitional Employment worker from a cost. Another problem identified was the nearby psychosocial program to fill some of difficulty that members had in setting the clerical positions. Some members were boundaries in staff and member relation- also provided with stipends ($75 per month) to ships. The two way nature of these rela- work approximately one day per week per- tionships (sharing problems as well as forming various tasks (outreach, recreation, listening to service recipients and being food services). These workers were elected “advice givers”) made this difficult. A by the membership to fulfill these roles. great deal of time was spent in staff The staff were mostly Caucasian; there was meetings on these issues. an equal balance between men and women; and there was one physically disabled individ- • Heavy Paperwork Load. The Executive ual and five former SSI/SSDI recipients. A Director reported being overwhelmed number of volunteers assisted, including five with paperwork and accounting. parents. Training was provided to staff on • Site Selection/Renovations. A site counseling skills and orientation to case man- was selected, renovations were com- agement. Staff were initially permitted to pleted four months later, and donated attend self-help group meetings during paid office equipment was received. How- time for their own mental health. ever, delays occurred when the Fire

38 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

Marshal required extensive modifica- and a place to talk about hopes and dreams; tions, and during a long negotiation a majority stated that “it’s true that it’s a with the State regarding day program place to share feelings without being put licensure requirements. down”. A large majority said that they felt accepted at the center and that they now • Community Resistance. have more friends. Implementation was difficult because Respondents’ impressions regarding what of the “NIMBY” (“Not In My Back Yard”) contributes to the longevity and success of a phenomenon during site selection self-help program such as this one were also and development. reported, including: • Operational effectiveness; SUCCESSES AND EVALUATION FINDINGS • Member satisfaction; Overall evaluation findings indicated that the • The attractiveness of the self-help philo- project met most of its stated objectives. A sophy, with its emphasis on empower- large majority of participants reported that ment and experiential knowledge; “People who come here are learning to • Strong organizational leadership; depend on themselves more,” and “People are • Strong administrative backing from encouraged to make their own decisions.” A the Department of Mental Health majority of participants felt more confident and NIMH; and about making their own decisions, and many agreed with the statement “everyone pitches • Interpersonal interaction and in.” An impressive 90% said that people are social support. proud of the drop-in center. All staff and Board Despite repeated and varied attempts, said their work has made them more confident the project was unsuccessful in obtaining to help others. continuation funding and ultimately had to Other findings included: a majority consid- cease operations. ered the center a good place to “be yourself”

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 39 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

NEW HAMPSHIRE A Way to Better Living Manchester, NH

Do Drop-In Center Concord, NH

“I would like to add that I am grateful for these services, for without them, I would no longer live.” —Project participant

PROJECT GOALS PROGRAM AND OBJECTIVES DESCRIPTION The overall project goal was to enhance consumer/survivor involvement in service Services Provided planning, service provision, and evaluation in AWBL provided the following services: order to overcome obstacles presented by • Outreach. Friendly Companions, an out- geographic isolation and to address the need reach program, used peer volunteers to for more opportunities for consumers/survivors help facilitate delivery of community- to actively participate in providing peer self- based services. help, social and educational opportunities, education and information dissemination • Information Dissemination. A Speakers activities, and community support services. Bureau provided monthly talks to increase Two projects were proposed and are consumer/survivor knowledge and skills. described below. A special effort was made A newsletter was created and distributed to increase minority participation and to monthly, and a manual of information on emphasize services for individuals experi- community services, laws, regulations, encing homelessness, substance abuse rights and responsibilities was developed. problems, and developmental disabilities. • Financial Assistance and Food A Way to Better Living, Inc. (AWBL) of Services. A revolving se curity deposit Manchester, NH, sought to provide peer sup- loan fund provided limited loans for port for consumers/survivors released from peers to acquire independent, private NH State Hospital and others in re-integrating housing and a food bank assisted in into mainstream society. The program would providing food supplies. accomplish this by demonstrating how peers might reach their best potential and helping The Do Drop-In Center provided a to lessen stigma. drop-in center in the lower level of a clubhouse The Merrimack County Drop-In Center in program which operated 5:00 p.m.–9:30 p.m. Concord, NH (later named the Do Drop-In weekdays and 10:00 a.m.–9:30 p.m on week- Center), developed a drop-in center and a ends. The program offered an organized telephone support line to address socialization activity each night, support groups two nights and support.

40 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects per week, and a telephone support line staffed Program Manager, an Operation Supervisor, by volunteers. and Administrative Assistants. Most of the positions at the Do Drop-In Center were part- time, in order to allow flexibility in hiring (based Individuals Served on differing project needs and skills of individ- A total of 230 individuals were served by the uals) and to allow for flexible accommodation two programs, 140 at AWBL and 90 at the Do of the needs of consumers/survivors. The Drop-In Center. The largest proportion of serv- State provided additional inkind staff support. ice recipients lived in group homes, subsidized AWBL reported that all paid staff were housing, and supervised apartments. A minor- female consumers/survivors, and most were ity lived in individual homes or with family. ages 50-60. The Do Drop-In Center reported At AWBL, the majority of service recipients that all staff were consumers/survivors from were female, Caucasian, and age 30-40. the local county. Unemployment and psychiatric history data The Friendly Companions at AWBL were were not reported. given specialized training. At the Do Drop-In At the Do Drop-In Center, the majority of Center, training was provided to service recipients were male, Caucasian, and telephone support line volunteers in listening age 36-45. Sixty-one percent were unem- skills, dealing with threats of harm to self or ployed, and only seven percent had full-time others, and accessing available resources. employment. Project Directors provided additional training to staff depending upon need, and State Division of Mental Health staff provided Organization and ongoing consultation. Administration Program materials developed by the two Funds were provided to the NH Division of projects included newsletters, organizational Mental Health, which then provided funds to bylaws, job descriptions, and an information the two programs. AWBL eventually obtained sheet for Food Bank recipients at AWBL, and independent, nonprofit status. Each project a telephone log sheet to record hotline infor- had its own Board of Directors, Project mation at the Do Drop-In Center. Directors, and staff. The overall project had The two projects coordinated their activities a Statewide Advisory Council of consumers/ with several other groups, including: communi- survivors and family members which met regu- ty service agencies, mental health providers, larly with the Director of the NH Division of family groups, hospitals, churches, and mental Mental Health. AWBL requested a local church health providers. to act as its Board of Directors and provided Prior to this project, at least three self-help its services through the church, prior to gain- projects were known to exist in New Hamp- ing independent nonprofit status. The Do shire. After the initiative, it was reported that at Drop-In Center elected its own Board of least 12 new self-help efforts had been devel- consumers/survivors. oped, including: a satellite program out of the Paid staff at AWBL included a Project Do Drop-In Center, a social club established at Director, a Project Manager, a Secretary, and AWBL, a Statewide consumer/survivor council, a Treasurer. Volunteers at AWBL, called a Statewide network of regional councils, and “Friendly Companions” provided peer support consumer/survivor-operated services in six services. Paid staff at the Do Drop-In Center regions of the State. Two of the services which included a Program Director, an Activities were developed were a consumer/survivor- Coordinator, an Outreach Coordinator, a operated discount retail store and the Wyman

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 41 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

Way Co-op (a consumer/survivor-run consor- economic conditions in New Hampshire. The tium of businesses). evaluator stated: “Many consumers told us The total budget for the three years of the that they depended on the food supplies to demonstration project was $254,666, of which make it through the month, that without this $229,250 was Federal funding and $25,416 service, they would go hungry.” was State funding. The Evaluator also found that AWBL was “...blessed with an incredibly devoted staff, with a very low rate of turnover . . . [The] pro- IMPLEMENTATION gram offers a comprehensive, varied approach ISSUES AND BARRIERS to consumer needs . . . which work together to The following issues were encountered during provide consumers with economic, educa- the implementation of this project: tional, and emotional support when they need it most.” • Startup Delays. Delays in passing funds The Evaluator found the Do Drop-In Center to the projects (which were caused, in was most successful, as it had “. . . grown part, by State funding regulations and from a rather small, underutilized social club to grantee inexperience) caused some a popular, well attended social center for area service delivery delays at AWBL and consumers . . . [it] provides a safe place...[and] resulted in an initial lowering of con- fulfills an important role. ...Social bonds are sumer/survivor interest in the project at created, maintained and strengthened. As the Do Drop-In Center. consumers’ social networks expand, demand • Transportation. AWBL was unable to on emergency services and mental health sup- provide transportation services to service ports [drops]. . . . [Participants] had a place to recipients due to insurance constraints. call their own.” For those employed by the Do Drop-In Center, it provided an “. . . important • Lack of Organized Activities. A lack of stepping stone to further employment opportu- organized activities in the first year at the nities [and] provided consumers with an oppor- Do Drop-In Center was later addressed, tunity to prove that they can handle the and the Center began to offer food, responsibilities of a job.” dances, bowling trips, field trips and a Recommendations, based upon the pool table. evaluation, included: • All key persons and organizations should SUCCESSES AND be involved from the beginning to build a EVALUATION FINDINGS constituency, generate support, clarify A limited process evaluation was conducted expectations, and enhance the capacity on both programs, using questionnaires to of the system to support these projects. collect data on participant demographics and • Future projects should focus on assisting ratings of services. consumers/survivors in developing natural AWBL’s “Friendly Visitor” outreach program support systems. This will require a suffi- served five to ten service recipients per month; cient level of funding for adequate service the Speakers Bureau conducted approximately and meaningful evaluation research. 10 engagements per month; and 400 copies of the newsletter were distributed each month. • Future evaluations should focus on the The food service was the most popular serv- most effective methods of increasing ice, particularly at the end of the month, due to rates of employment for consumers/ survivors and assisting them in obtaining

42 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

high school diplomas or GED’s. This will cial viability of continuation with general also require a sufficient level of funding. fund dollars [at a] time of financial uncer- tainty in New Hampshire; nonetheless, • While the continuation status of these the Division is committed to continuing programs was not reported, the following the funding of these projects.” quote was taken from the Final Report: “...[the] Division [is] exploring [the] finan-

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 43 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

NEW YORK Share Your Bounty/Friends of the Homeless New York, NY

“...There is also a tremendous increase in self-esteem that comes with going from being a hospital patient who is dependent to working independently and doing something important.” —Project staffer

replicating the project, including holding a PROJECT GOALS Statewide conference and providing technical AND OBJECTIVES assistance to those interested. The project The overall goal of this effort, which was titled also hoped to develop additional funding Friends of the Homeless and later renamed resources by creating relationships with the Share Your Bounty/Friends of the Homeless New York State Office of Mental Health, (SYB), was to expand the activities of a con- municipal agencies serving homeless sumer/survivor-operated food bank and out- individuals, and corporate donors. reach program which had been in operation since 1984, serving people who were experiencing homelessness, primarily in the Bronx PROGRAM and Manhattan. The project’s activities in- DESCRIPTION cluded raising food donations from local suppliers and distributing them directly to Services/Supports Provided homeless persons on the streets, in shelters, Funding enabled Share Your Bounty/ or through other community agencies. Friends of the Homeless to provide the Specific objectives for this initiative were: following services: establishing an independent organizational • Sandwich Delivery and Basic Food base in order to assure consumer/survivor Supplies. Until new policies forced control (by obtaining office space and nonprofit homeless individuals out of the building, status); expanding and diversifying the proj- SYB provided sandwich delivery to this ect’s workforce; and increasing the project’s population at Grand Central Station. SYB efficiency, number of shelters reached, and also provided basic food supply to shel- number of clients served (by purchasing a van ters and other delivery points in the city. and driver to pick up and deliver food). The project also planned to offer job placement • Technical Assistance and Training. assistance through a vocational rehabilitation SYB conducted workshops throughout counselor; to disseminate results through pre- the State, which contributed to the devel- sentations at conferences and at meetings of opment of four other consumer/survivor- national consumer/survivor organizations; and run projects, including a consumer/ to meet with consumer/survivor groups at all survivor-operated food bank called adult State hospitals to develop interest in “Harlem Dollar Stretchers,” an outreach

44 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

effort to homebound elderly persons in ing food at Grand Central Station, during the the Bronx, an “adopt-a-family” donation period when the project provided street food effort at a hospital, an “adopt-a-shelter” distribution. Most of these individuals were program, and a consumer/survivor-run African American and Latino males, ages coffee stand at several mental health 18 to 40. residences. Consumer/survivor staff input also directly stimulated the development of a consumer/survivor-run case Organization and management program. Administration Initially, the grant was provided to the New • Committee Work and Housing York State Office of Mental Health, which pro- Advocacy. Staff served on various task vided the funds to the Bronx Psychiatric forces, committees, and workshops. Staff Center. Bronx Psychiatric Center acted as the assisted the New York City Department of fiscal agent for SYB until the project attained Mental Health in initiating an Integrated independent nonprofit status. It was proposed Neighborhood Housing Project (INHP). that if a conflict developed between the project INHP was an effort to promote community workers and the hospital, the issue would be acceptance of people with mental illness sent to an outside committee composed of two living in the community in various New consumer/survivor consultants, a provider, and York City neighborhoods. staff of the State Office of Mental Health. • Information Dissemination. A video- During its first year of operation, SYB tape of SYB was developed and distrib- became a separate organization. SYB devel- uted widely and shown on White Light oped a management team composed of the Communications (a consumer/survivor- Executive Director, Treasurer/Secretary, run video production project in Vermont, Resource Manager, Outreach Manager, and discussed elsewhere in this chapter), Operations Manager. A bookkeeper, business and several articles were accepted for accountant, project evaluator, and a con- publication in Hospital & Community sumer/survivor evaluator were later added to Psychiatry and the monthly bulletin of the the team. Three employees served as the New York State Office of Mental Health. Board of Directors. An Advisory Council of • Other Services. SYB acted as fiduciary providers was also developed. This organiza- for a Consumer/Survivor Resource and tional model was described as a “supportive to Information Center at Bronx Psychiatric separatist” self-help project (see description of Center. In the last year of the project, as Chamberlin’s and Emerick’s typologies in the an increasingly larger number of people literature review in Chapter 1). Professional in need of help came to the project’s involvement diminished as the program han- offices, SYB began to offer crisis inter- dled its own financial matters and retained its vention, referral to social services, and own lawyer. peer support. Paid staff consisted of: an Executive Director, a Treasurer/Secretary, an Outreach Manager, a Resource Manager, an Operations Manager, Individuals Served Food Distributors, Drivers, an Office Manager, a Little specific information was reported on the Senior Research Assistant/Field Trainer, consumers/survivors who were served by the Consumer Consultants, a Consumer Evaluator, project. It was estimated that approximately and a Business Accountant. In-kind staff, 100 homeless individuals per day were receiv- funded elsewhere, included: an Assistant

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Director, Project Workers, a Custodian, a Bookkeeper, a Secretary, a Research IMPLEMENTATION Supervisor, Bronx Psychiatric Center ISSUES AND BARRIERS Consultants, a Principal Consultant, and The following issues were encountered during a Senior Research Advisor. the implementation of this effort: The Project Workers were all • Office Space. Originally, the project consumers/survivors from the Bronx was established at a temporary space Psychiatric Center. One-half were formerly at the Bronx Psychiatric Center. The homeless, 72% were African American or project later obtained its own space, Latino, 18% were Caucasian. Some were still which greatly facilitated a sense hospitalized, and some had extensive work of independence. histories. Education levels ranged from ninth grade to law school graduate; the majority had • Delay in Receiving Project Funding. a high school diploma. Two of the staff had It was reported that this was due to previous self-help movement experience. A delays in achieving nonprofit status. total of 46 people participated as paid staff • New Homeless Policy at Grand during the life of the project. Central Station. SYB was forced to Staff attended and presented at various stop food distribution at Grand Central conferences and trainings. Some staff re- Station, due to a new policy against food ceived training on organizational management distribution and against homeless people and fiscal accounting. The Office Manager and congregating at the station. the Bookkeeper obtained training in computer- ized bookkeeping. • Leadership Gaps. The resignation of At the start of the project, it was determined the Executive Director and the unex- that there would be no staff stratification based pected death of a board member left on level of disability. Staff could decide to a gap in leadership. reduce work activities or take temporary leave, • Provider vs. Consumer/Survivor if needed. By Year 2, the Office Manager had Issues. Differing perceptions by con- been providing peer counseling to staff, and sumers/survivors and professionals there was interest in developing a drop-in cen- regarding what direction the organization ter at the SYB offices. In the following year, all should be taking created friction and staff including the Executive and Assistant distrust. These problems were exacer- Directors rotated jobs so that all staffers would bated at the end of the grant, when have familiarity with all positions and so that non-consumer/survivor outsiders’ ideas staff could trade jobs if they disliked what regarding how SYB could be continued they were doing. resulted in tense communications. The project collaborated with a number of • Decisionmaking Hierarchy. The Final organizations, including: hospitals, research Report indicated that the board and the organizations, homeless service providers, management team were often the sole advocacy organizations, food banks, universi- individuals involved in decision making. ties, supermarkets, churches, soup kitchens, This hierarchical structure prevented and State and local mental health authorities. some participants from learning to take Total Federal funding for the project responsibility and learning how the was $378,420. organization functioned.

46 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

• Drug Abuse Among the Homeless. birthdays were celebrated . . . [it] took on the This contributed to the decision to stop aspect of a ‘home’ . . . members referred to street food distribution, as some SYB each other as ‘family’. Members provided members felt at-risk as a result of their crisis management for one another. At own substance abuse histories. least five members were hospitalized briefly; members would visit and phone regularly, and sometimes people got day passes to SUCCESSES AND come to work. All returned to work after EVALUATION FINDINGS their hospitalizations.” The evaluation consisted of a qualitative According to the evaluation, one of the study, using participant-observation, individual principal benefits of the project was that it interviews, focus groups, and documentation “. . . demonstrated that consumers can form of activities. an autonomous organization which aided them Overall findings indicated that the project, in transition from [a] long-term, institutionalized by becoming consumer/survivor-run, had “self- [setting] to successful community integration; deinstitutionalized” itself and its members. [it] demonstrated that such an organization SYB members felt they had learned much can provide its members with a number of about the work world from their positions, essential functions (i.e., socialization) without learned work skills transferrable to other professional service providers; [and it] demon- jobs, took great pride in helping others, and strated that SYB members remained commit- found their work to be flexible, enjoyable, ted to [the task] for the duration of the grant, and meaningful. despite occasional setbacks.” Statements from the staff included: The impact was also felt on the community, where “former mental patients were seen as • “Now I’ve realized how we need people, capable and motivated to provide much-needed others need me and I need others.” outreach and goods to those who are even • “[At SYB],...no one judges you.” more destitute. SYB contributed to a destig- matization of formerly institutionalized people, • “. . . [The] program has contributed to the [and] a considerable number of empowerment emotional, spiritual and financial transi- efforts across the State were begun in the tion from the hospital.” wake of SYB.” Members stated that they learned to get Many professionals, administrators, and along with one another, problem solve to- State officials, in informal conversation, gether, air out their feelings, and encourage expressed positive changes in attitudes one another. Members supported one another towards consumers as a result of their contact to be drug-free and to act responsibly. They with SYB. It should also be noted that SYB developed a sense of independence, auton- received Honorable Mention for the 1989 omy, and self-confidence that many said they Hospital & Community Psychiatry Achieve- had not felt before. One participant stated: ment Award, presented by the American “What’s empowering for us is to do our Psychiatric Association. own thing now.” Some concerns were raised that the grant’s It was noted that staff provided peer sup- implementation imposed “structural and port/self-help to one another and to other bureaucratic constraints” on SYB. The quick peers. SYB had become a “. . . family center and large growth of the organization was a where members socialized, played music, and positive in terms of the organization’s ability to discussed their problems with one another . . . disseminate information, but it also produced

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 47 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects self-management growing pains, along with opment of consumer/survivor initiatives, a lack of appropriate technical assistance and this policy should be linked to and education. The “use of outside profes- longer-term planning for financing con- sionals [rather than consumers] made SYB sumer/survivor initiatives. They should members wary and uncomfortable with the identify staff points of contact and fund- ‘outside’ world of non-consumers.” This ing sources and mechanisms. highlighted some differences between par- • Staff should include at least one ticipating members and professionals and bilingual individual. contributed to tensions. A series of recommendations were offered, • Consumer/survivor organizations based on the evaluation: may want to develop a “Friends of . . .” group, consisting of non-consumers/ • The State Office of Mental Health survivors or consumers/survivors who should develop technical assistance are not members, for the purpose of programs to help consumer/survivor-run networking and fundraising. programs develop or expand in the areas of incorporation, bylaw development, Attempts were made to secure continued organizational structure, legal consul- State funding, city homeless funding, and cor- tation, budgeting, grants management, porate support, but these efforts to continue the reporting requirements, and payroll. program’s funding were ultimately unsuccessful. Wherever possible, this assistance should be provided by other consumers/survivors. • The New York State Office of Mental Health and the New York City Depart- ment of Mental Health should develop a policy concerning the support and devel-

48 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

OREGON Mind Empowered, Inc./Spreading Empowerment, Enlightenment, and Dignity Portland, OR

“MEI [Mind Empowered, Inc.] has made a big difference in my life . . . I don’t know what would have happened to me without these people . . .” —Project participant

PROJECT GOALS PROGRAM AND OBJECTIVES DESCRIPTION The purpose of this effort was to establish, via Mind Empowered, Incorporated (MEI), in Services Provided Portland, Oregon, outreach services to help Funding enabled MEI to provide the consumers/survivors achieve coping and com- following services: munity living skills and a better quality of life • Training. Core trainings were organized and to provide an array of services which and held weekly on topics such as: men- assist, support, and empower psychiatrically tal illness, medication and side effects, disabled persons. Activities were organized accessing community resources, psy- around three main program elements: training, chosocial rehabilitation, dual diagnosis which focused on developing a cadre of peer assessment and referral, personality dis- outreach counselors, support services which orders, suicide intervention, and violence. utilized peer counselors and volunteers, and public education/advocacy, which worked to • Public Education, Advocacy, and combat stigma through public education and Information Dissemination. A clearing- policy advocacy efforts. Specific goals in- house was developed, numerous public cluded: developing an existing nonprofit con- information and interagency presentations sumer/survivor-operated corporation into a were made by project staff, and members well-organized entity based on sound operat- participated on a variety of committees. ing principles; establishing a curriculum and • Drop-In Center and Support Groups. A training peer outreach counselors on a quar- drop-in center, open Monday–Saturday, terly basis; providing stipend-supported and 10 a.m.–7 p.m., was started. Holiday volunteer placements; establishing effective dinners were prepared and served on peer support and advocacy services; and pur- Thanksgiving and Christmas, and suing public education and advocacy efforts monthly dances and cookouts were held. to combat the stigma of mental illness. Three time-limited peer support groups The Final Report indicated that the project met weekly on a variety of issues. had been renamed SEEDS (Spreading Empowerment, Enlightenment, and Dignity). • Outreach Services. Outreach was conducted at a homeless shelter and a State hospital.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 49 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

Individuals Served be screened carefully to insure compatible values and a commitment and understanding of Services were open to individuals, 18 years consumer/survivor empowerment. Efforts were of age and older, who had a psychiatric dis- also made to recruit minority individuals. The ability. The program further targeted: people Final Report stated that all paid staff were who were in hospitals preparing for discharge, consumers/survivors, and the total number who cannot access mental health services due employed throughout the project was 22. to long waiting lists; those homeless or at-risk The project’s personnel policies specifically of becoming so; those labeled “hard-to-treat”, addressed the issue of providing reasonable who don’t want to be identified with the formal accommodations. This included paid time off, system; and those who wished to supplement at the discretion of the Executive Director, to their involvement with professional mental permit stabilization of acute illness and reallo- health service providers. Recipients of cation of duties when necessary. services were primarily male, age 30–50, A number of materials were developed over and Caucasian. the course of the project, including: a program flyer; job descriptions; a client intake form; a Organization and daily contact log; member’s weekly contacts; a Administration daily time record for staff; an expense summary form; an employment application; an evaluation The grant was provided to the Oregon Mental intake form; progress notes; a goal setting form; Health Division (MHD), which provided the an informed consent form; and policies regard- funding to MEI. Initially, MEI used the Mental ing personnel, the drop-in center, outreach, and Health Association of Oregon as its fiscal information and referral services. agent until it attained nonprofit status and The project coordinated its efforts with a became sufficiently established to do its own number of other organizations, including: men- fiscal books and payroll. tal health providers, hospitals, the National The Board of Directors already existed at Association for Rights, Protection, and the time of the grant application. It required a Advocacy, universities, County Commissioners, majority of its membership to be consumers/ Social Security offices, homeless service survivors. Paid staff included an Executive providers, Parks Department special programs, Director, an Outreach Manager, a Socialization churches, and Oregon Public Radio. Team Leader/Coffee House Manager, a Skill Trainer, an Information and Referral Team A total of $480,353 was spent on this effort, Leader, a Volunteer Team Leader, a of which $399,196 were Federal funds and Secretarial Team Leader, and several Stipend $81,157 were State funds. Positions. The State provided several inkind positions, including: a Manager of Community Programs, a Coordinator of Community IMPLEMENTATION Programs, and several Consultants. MEI policy required that a majority of staff ISSUES AND BARRIERS have a history of serious mental illness as well The following issues were encountered during as the capability to perform duties. Where the implementation of this project: qualified consumers/survivors could not be • Systems Change. Oregon’s mental found for positions requiring an essential type health system experienced broad opera- of expertise, non consumers/survivors could tional and philosophical changes which be employed, but in such cases they were to impacted upon this project, including the

50 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

implementation of Public Law 99-660. A process evaluation noted that the greatest This legislation mandated consumer/ strengths and successes of the effort were survivor involvement in State mental that consumers/survivors can develop an health planning councils. As a result, con- organization, overcome difficulties, make sumers/survivors were more accepted contact with other consumers/survivors, and and included as valued participants. deliver needed services. MEI maintained a continuity of vision and philosophy and devel- • Staff Turnover. There were reports oped extraordinarily helpful and beneficial rela- that staff turnover created some tions with other grassroots and consumer/ delays in the implementation of survivor empowerment interests. MEI demon- certain project activities. strated that consumers/survivors can move • Funding. A ten percent reduction in through the stages of interest, opportunity, funding by NIMH across all projects learning, and service to others. resulted in the project needing to cancel Some unanticipated benefits were reported, publication of the MEI newsletter. as well. The project provided a training and proving ground for consumers/survivors’ efforts in mental health work, as a number are SUCCESSES AND now working with other agencies. The relation- EVALUATION FINDINGS ship between the State and the project was A member satisfaction survey revealed that a especially important during the application majority felt that the center was a major factor and preparation process. in providing them with socialization opportuni- Several recommendations resulted from ties and money management skills. Partici- this evaluation: pants valued it as a place to learn about men- • Training sessions should offer a mix of tal illness, low-cost housing, and employment exploration and problem solving. opportunities and many stated the project played a central role in their social lives. Other • The evaluation would have been more findings included: a majority felt they had successful if a State/project cooperative found help for their problems at the center (pri- system of recordkeeping that reported marily housing, Social Security, or other practi- more useful program information had cal information); and that the center was a been created. With appropriate opportu- place where hopes and dreams could be dis- nities for incorporating feedback, such cussed. Most said they were encouraged to information would have contributed make their own decisions and that a lot of day- greatly to decision making, clarifying to-day problems were solved through involve- focus, and documenting changes. ment with the center. Overall conclusions • The theory and practice of self-help and found that: members value MEI in the commu- its impact on staff learning, development, nity; many would feel an extreme loss if the and self-esteem should be examined. center were to close; and MEI assists individu- There is a need for further examination als in linking with community services which of the model of “becoming interested, enable them to live independently. volunteering, learning, and moving into An analysis of staff contact logs revealed staff positions.” that housing was the most requested service, followed by money management assistance It was noted that in 1991, MEI received the and interagency referrals. Small Employer (of handicapped individuals) of the Year Award by the Oregon Disabilities

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Commission and the Excellence Award by committed to ongoing funding of this project. the Oregon Division of Mental Health and Continued State funding for SEEDS and for a Developmental Disability Services. new program entitled CSP, the Community The State Division of Mental Health and Survival Program, was awarded. Developmental Disability Services remained

52 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

TENNESSEE Friends Helping Friends Nashville, TN

“Through participating in Friends Helping Friends, members achieve greater confidence in decision making, are better able to cope with their problems, have more friends, participate in healthier activities, and are better able to avoid psychiatric hospitalization.” —Project evaluator

• Drop-In Center. The center offered PROJECT GOALS crisis intervention, peer counseling, AND OBJECTIVES hospital visits, an information bureau, The overall objective of this project was to referral services, recreation and social- develop and operate a drop-in center and ization activities, meals, and holiday related services, called Friends Helping gatherings. The center was open seven Friends, to meet the socialization and support days per week, including holidays and needs of consumers/survivors in Nashville, evening hours. Tennessee. The goals of the project were: to • Speakers Bureau. Ten consumers/sur- empower consumers/survivors by helping vivors were trained and then sent out to them to gain control over their lives and the speak to groups on a variety of topics, services they receive (by developing self- ranging from housing to advocacy to confidence and self-esteem and by rotating blood pressure to first aid. Consumers/ leadership positions and responsibilities); to survivors gave an average of four pre- provide emotional support to consumers/ sentations per month. survivors (through a support group, friendship networks, and drop-in activities); to combat • Job Placement Service. Staff located stigma (through a speakers bureau); and to employers who had temporary jobs and promote consumer/survivor independence matched consumers/survivors with avail- through consumer/survivor-run services (a able jobs. Park Center (a psychosocial housing loan program, a crisis intervention/ program which served as this project’s respite care program, job placement services, fiscal agent) provided an onsite Job and roommate matching services). Coach daily. • Roommate Matching Service. The project provided assistance with locating PROGRAM apartments, moving, and followup visits. DESCRIPTION • Crisis Intervention/Housing Respite. Services Provided This service was created to offer an Grant funding enabled the project to provide alternative to hospitalization, when the following services and supports: appropriate. The service was coordi-

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nated by Park Center, which placed an Organization and onsite Housing Specialist at Friends Helping Friends. Administration The grant was awarded to the Tennessee • Newsletter. The project published a Department of Mental Health/Mental bimonthly newsletter, which included a Retardation, which provided the funds to a schedule of events, creative submis- psychosocial program, House of Friendship/ sions, information on pending legislation, Park Center Association. Park Center acted as drop-in center statistics, and consumer/ the project’s fiscal agent. Initially, a Planning survivor concerns. The newsletter was Group composed of consumers/survivors and distributed to over 400 people. providers was formed to help direct the pro- • Self-help Group. The project sponsored gram. This Planning Group later became more a weekly group which focused on sup- formalized, and members held elections for a port, education, and advocacy regarding President, Vice President, and Secretary. By physical abuse, overmedication, and Year Two, this Board had hired a Director, boarding home abuses. who, in turn, hired staff. Paid staff included the Director, two Peer Counselors, a Secretary, • Loan Fund. A fund which made small, and an additional On-Call Peer Counselor. interest-free loans for housing and A total of $237,000 was spent on this effort, employment needs was set up. The max- of which $234,000 were Federal funds and imum loan was $25, and a committee $3,000 were individual donations. reviewed all requests, which included security deposits, furniture, eyeglasses, and car repairs. IMPLEMENTATION ISSUES AND BARRIERS Individuals Served The following issues were encountered during Criteria for membership stated that individuals the implementation of this effort: served must have a major “mental illness”, be • Project Development. Initially, it was able to travel independently, and abuse no planned that two support groups would substances at the drop-in center. The defini- form the Nashville Consumer tion was later broadened to include former Consortium, which would then become consumers/survivors and homeless con- incorporated and develop a board. This sumers/survivors. The definition was broad- would enable them to contract directly for ened in order to respond to concerns that services. This apparently never hap- people in need would be denied services. pened, although the reasons are unclear A total of 300 individuals were served by the from project materials. project. Fifty individuals, mostly homeless, were referred to other programs. A majority of • Project Location. The drop-in center service recipients were Caucasian males; the was ultimately located within Park average age was 52. Thirty-six percent were Center, as three other independent sites African American, 60% had a high school edu- which were explored were deemed cation, 93% had been previously hospitalized, unsuitable due to high rent or crime. and 98% had previously used community • Project Autonomy. There were indica- mental health services. tions that the project did not have a sense of being consumer-run, due to its close affiliation with the Park Center.

54 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

Sharing space and staff with this pro- feelings without being put down. During the gram contributed to this concern. In grant period, a Statewide consumer/survivor addition, with Park Center being the fis- group, the Tennessee Mental Health cal agent, this furthered the impression Consumers’ Association, was formed. of excessive professional involvement The evaluation found that a sizeable num- with this project. ber of people thought that the center was owned by Park Center, and as a result, an interim recommendation was made that the SUCCESSES AND drop-in center try to obtain its own space. The EVALUATION FINDINGS evaluators also recommended more social The project evaluation was conducted by activities, more outreach to mental health cen- the State Department of Mental Health and ters, staff training and recognition within the |Mental Retardation. Program aspects to be mental health community, a new location for examined included the number served in the drop-in center, and efforts to increase various project activities vs. projections minority participation and enhance the cohe- and member satisfaction. sion of consumers/survivors, family members, Respondents reported that they were proud and professionals. of the center, and reported that they felt that The Final Report indicated that the project the center: encouraged people to make their received $90,000 per year in continuation own decisions, helped people learn about funding from the Tennessee Department of resources, and encouraged people to share Mental Health/Mental Retardation.

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VERMONT White Light Communications Burlington, VT

“. . . [It has] opened up a whole new avenue for communication, for building support networks for fostering empowerment, and for developing a sense of belonging among consumers.” —Project staffer

ductions; and worked on co-producing, direct- PROJECT GOALS ing, and staffing two interactive, live, national AND OBJECTIVES satellite broadcasts of consumer/survivor pan- The original objective of this effort, called White els discussing major issues. Light Communications, was to use a portable satellite uplink vehicle for transmission of live public education productions to remote regions PROGRAM of Vermont. The project was originally set up to DESCRIPTION be financially self-sufficient by making its portable uplink available for rental fees to com- Services Provided mercial users. Productions were distributed The following services were provided: live, via satellite, on a weekly basis to 60,000 • Weekly Productions. Half-hour weekly cable television subscribers in VT, and included productions were distributed via cable public affairs items, public-interest stories, and networks in VT’s three largest cities and entertainment produced by, and featuring, con- in Syracuse, NY. Throughout the project, sumers/survivors. This effort provided opportu- nearly 80 half-hour productions on a vari- nities for consumers/survivors to communicate ety of consumer/survivor issues were directly to the public about their experience of made for a monthly cable show. being a psychiatric patient. Project goals consisted of: public education • Broadcast-Quality Productions. Three to change attitudes and misinformation about documentaries on consumer/survivor mental illness; outreach to organize consumers/ activities and perspectives were pro- survivors by conducting State, regional, and duced for national distribution during national networking; and development of the project. professional employment opportunities for • Consumer/Survivor Involvement. consumers/survivors, including technical Representation was obtained on several and managerial roles not usually available mental health boards and committees at to such individuals. the State and local levels. The project focus was later changed from satellite uplink to direct video production, due • Networking. A relationship was estab- to the price of purchasing equipment. The lished with a major video production and project developed several broadcast-quality distribution company, and contacts were productions for distribution on national cable begun with national cable channels for systems; duplicated and sold videos of its pro- broadcasting a production on Alternatives

56 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

‘90, the fifth annual national mental health and two mental health professionals. The consumer/survivor conference, spon- Board expanded to include business and com- sored by NIMH and held in Pittsburgh. munications experts, and periodically other constituent group representatives (i.e., other • Interactive Satellite Conferencing. A consumer/survivor groups, family groups, etc.) concept for a national, interactive, live were asked to attend meetings to provide sug- satellite television network production gestions and feedback. was developed and implemented, and The staff of the project consisted of an the first broadcast of “Self-help Live” took Executive Director, an Office Manager, a place in 1991. This broadcast focused Production Coordinator, and 30 part-time pro- on highlighting a number of consumer/ duction assistants over the life of the project. survivor leaders. Several communications professionals and • Videotape Marketing. A list of 35 avail- business consultants assisted the project in able educational videotapes, all produced creating a business plan, bookkeeping, project by the project, was compiled. The project evaluation, and technical aspects of television distributed copies of these tapes. The production. All staff received two months of videotapes were used to promote con- training at Adelphia Cable in Burlington. sumer/survivor education and provide pro- All staff were consumers/survivors. The staff fessionals with education and training was all Caucasian, mostly New Englanders, regarding consumers/survivors and their 2/3 were female, and their ages ranged from issues. The best productions were dupli- 30–43. All staff were college graduates, and cated and a marketing brochure was the mean income was $21,250. developed and mailed to 15,000 potential Materials that were developed during the customers. Sales of videos accounted for project included job descriptions, a brochure, a percentage of the project’s 1992 budget. videotapes and television productions, and a listing of videotapes available. The project interacted with several other entities, including Individuals Served local, state, and national cable and video pro- It was estimated that the project reached an duction organizations, mental health technical estimated 1.6 million homes in the Boston, assistance agencies, state mental health Seattle, New York City, upstate New York, and authorities, and universities. Vermont areas via public access cable televi- A total of $529,475 was spent on this effort, sion stations. A total of 38 states participated of which $517,475 came from Federal funding. in the broadcast of “Self-help Live”, with nearly 200 viewing sites. IMPLEMENTATION Organization and ISSUES AND BARRIERS Administration The following issues were encountered during the implementation of this project: The grant was awarded to the Vermont Department of Mental Health, which provided • Purchase of Equipment Not Feasible. the funds to the Vermont Liberation The original plan to purchase a portable Organization to operate the project. satellite uplink and to lease it in order to Initially, the Vermont Liberation Organization generate revenues was not feasible due (VLO) had an existing board which included to cost. The project instead decided to eight consumers/survivors, one family member establish a television production busi-

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ness and to distribute productions those who viewed the show had more positive through existing networks. attitudes about the mentally disabled on each dimension as compared to non-viewers. • Struggles Regarding Commercial vs. The telephone survey studying the impact Nonprofit Status. Originally, the project of the marketing of video productions revealed was set up to evolve into a viable com- that videotape customers represented a broad mercial enterprise. The advisory commit- range of audience groups, with the largest per- tee urged it to maintain its nonprofit status centage consisting of mental health profes- and to maintain its focus on promoting the sionals in private practice and individuals consumer/survivor movement. associated with self-help agencies. A survey of “Self-help Live”, the satellite tele- SUCCESSES AND conference broadcast, collected data from a total of 977 respondents. Findings included: EVALUATION FINDINGS 85% of respondents were satisfied with the A staff survey was conducted, which found production; 89% learned something new; that all staff had high job satisfaction through- participants were 72% Caucasian, 13% Native out the three years of the project. This survey American, 12% African American, 2% Asian, also found that a wide array of employment and 1% Latino. Topics suggested for future activities were offered for participants, there broadcasts were: employment (42%), housing/ was a high level of acquisition of job skills, homelessness (35%), and abuse of consumers/ staff communication/relationship satisfaction survivors (27%). was good, and employees felt high levels of The content analysis of the productions social competence. revealed that 86% of the interviewees on the Four focus groups were organized, and a tapes were consumers/survivors, and 63% of process evaluation of two television produc- the tapes examined involuntary treatment and tions was completed. Findings indicated that hospitalization as a major informational focus. the issues and problems portrayed in the pro- The evaluation report stated: “Clearly, the ductions were important and relevant, but they results indicate that involuntary treatment and found that the informational content of the pro- hospitalization appear to be important issues gram could be enhanced by through the use of from the perspective of ex-patients, consumers greater visual stimulation and narrative expla- and mental health consumer advocates.” A total nation of the content and background of peo- of 83% of the tapes had information on public ple presented in the show. education, and 7% had information on women’s Other evaluation activities included a survey issues in the mental health system. The report of the cable audience, a telephone survey to went on to indicate that, with respect to the lat- study the impact and effectiveness of market- ter finding, women’s issues were not explored ing the videotapes, an evaluation of the satel- in a significant way. lite teleconference broadcast, and a content Overall conclusions, based on the above analysis of the videotapes. results, were as follows: The telephone survey of the cable production audience revealed that, of those who • Broadcast of the weekly program watched the program, they liked it and found should be continued. The evaluation it easy to understand and informative about report stated: “It is evident that the mental health issues. It also revealed that pub- availability of free public access cable lic attitudes towards individuals who are men- channels provides an excellent medium tally disabled were not very positive; however, that consumer groups . . . can utilize to

58 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

promote consumer education and • Preventive measures should be taken to support networks.” foster personal and professional growth in the workplace (i.e., building a human • There is a strong market for materials environment in the workplace that is sup- produced by consumer/survivor-operated portive and enhances communication, video production organizations. If the trust, self-esteem, and empowerment production quality and visual content are among the employees). able to be improved, then the market is likely to grow. • Live video teleconference broadcasts should be continued by asking for State • Employees were able to attain a wide subscriptions. Participation in live tele- range of job experiences and skills. conferences should be studied, including However, turnover and other satisfaction differences (if any) between levels of par- ratings suggest the need to provide train- ticipation by consumers/survivors and ing, orientation, and job enrichment non-consumers/survivors and the rea- experiences for all employees, in order to sons people choose to participate or foster personal and professional growth. not participate. The final report also stated that the project’s • Research is needed to investigate the greatest strengths were its “ability to stay impact of teleconference broadcast focused and maintain its clear vision as a programs such as “Self-help Live” on communication source for the movement. the consumer/survivor movement, net- Using many of the principles of the consumer working, and State consumer/survivor and ex-patient movement, in the workplace, services in subscribing vs. non-subscrib- the staff was able to work [out] its difficulties, ing States. support one another, and work toward a common goal...The opportunity of having a non- • There is a critical need to conduct stigmatized image in the business world process and outcome research on the played a major role in providing true com- use and application of communication munity integration for mental health con- technology in promoting public educa- sumers and former patients...It affords a tion, consumer/survivor networking, bridge across which people from both sides and prevention. can work together as equals.” Though it had initially been hoped that the Overall recommendations based on this project could continue via the rental of uplink project included: equipment, purchase costs prevented this from • Support for consumer/survivor public being a viable option. The project found that it education efforts should be continued at was able to generate significant revenues the State and Federal levels. It is impor- through sales of tapes, and with a successful tant for funding support to be provided marketing campaign, it planned to generate a for consumer-run business demonstra- significant part of its future funding through tape tion projects in order to promote commu- sales and national commercial broadcasts. nity integration. There were plans to continue the project after Federal funds expired; a number of contracts • Participation of State agencies and for production of public education materials consumer/survivor service organizations were bid upon, and grant support was applied in using the potential of satellite-interac- for from the van Ameringen Foundation and tive telecasts should be encouraged |the John D. and Catherine T. MacArthur and increased.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 59 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

Foundation. The project also reported that it Light was unable to generate confirmed funding had obtained subscriptions from 18 states for and was forced to cease operations. “Self-help Live”. Ultimately, however, White

60 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

WASHINGTON Capital Clubhouse Olympia, WA

“. . . [It was] unique, enjoyable and effective.” —Project participant

about the project via speaking engagements PROJECT GOALS and news and video releases. AND OBJECTIVES The overall goal of this effort was to develop a consumer/survivor designed, managed, and Individuals Served operated clubhouse program with a majority of The original eligibility requirements for service consumers/survivors on the Board of Directors. recipients were restricted to those deemed as The Clubhouse, named Capital Clubhouse, having a serious mental illness. This was was situated in Olympia, Washington, and relaxed somewhat in later years, with an served a two-county area, with transportation emphasis on those not receiving other services. provided to members. The project designated three categories of Objectives included: starting three pre- membership: “Regular Participation” (periodic vocational day programs; publishing a news- attendance); “Daily Attendance”; and letter; providing social and recreational activi- “Applications for Membership on File” (partici- ties for participants; and starting a transitional pant initiated contact and completed member- employment program (TEP). ship form, but participated very infrequently or not at all). The process for becoming a member included attending an initial meeting, PROGRAM participating in orientation, engaging in an DESCRIPTION interview with advocacy staff, and submitting a completed application form. Services/Supports Provided The Final Report indicated that the project The following services were provided by the served 101 participants. Characteristics in- project: two slots in the Transitional Employ- cluded: 64% were female; almost all were ment Program; a clerical unit, including produc- Caucasian; and the average age was 40. Fifty- tion of a newsletter; a kitchen unit, called Cap- seven percent were single, 11% were married, ital Cafe; and an outreach unit. Other activities and 32% were divorced; 57% lived alone, and included transportation, advocacy, drop-in cen- 40% lived with a roommate or family. Eighty-two ter functions, and social/recreational activities. percent were unemployed and 14% had part- The Final Report indicated that other indirect time work; 22% had less than a high school services were offered, including information/ education, 21% had a high school diploma, referral, conference coordination, meal cater- 21% were college graduates, and 11% had ing, provision of meeting space, anti-stigma completed postgraduate work. Ninety-three programs, and dissemination of information percent had prior hospitalizations and had a wide variety of diagnoses.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 61 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

Organization and tation. Staff participated in Alternatives conferences, the Western Regional Club- Administration house conference, and other consumer/ The grant was awarded to the Washington survivor conferences. Division of Mental Health, which provided the The total reported expenditures for this proj- funds to the Thurston-Mason County Regional ect were $316,074, of which $277,073 were Support Network. The Network then provided Federal funds. the funds to the Capital Clubhouse, which obtained its nonprofit status and began receiving funding directly from the State during the IMPLEMENTATION course of the project. ISSUES AND BARRIERS A Mental Health Consumers’ Coalition The following issues were encountered during (MHCC), composed of different area con- the implementation of this effort: sumers/survivors, helped to develop a Board. The MHCC Board hired the Clubhouse staff • Delay in Receiving Funds. Some and developed job descriptions for Board delays in the distribution of grant funds member duties and expectations. During Year were experienced, due to changes in the Two, the Clubhouse developed its own ten- State Community Support Programs member Board. Eighty percent of the mem- Director and because the county wanted bers were consumers/survivors. The Board the State to contract directly with the met monthly, and had five committees: Clubhouse rather than through the finance, fundraising/public relations, program, county. Eventually, the State did accept personnel, and nominations. Over time, an ad this change. hoc Advisory Group was formed to assist the • Lack of Advance Planning. It was Clubhouse Director. This group was composed reported that the decision to open the of the State Community Support Programs Clubhouse immediately was detrimental Director, the MHCC Board Chair, a local men- in the short run, as policies and proce- tal health center manager, and the County dures were not yet in place. Mental Health Coordinator. Paid staff included an Executive Director, • Peer/Member/Staff Tensions and a Clubhouse Manager, two Consumer Internal Conflicts. It was reported that Clubhouse Staff Workers, and a Social/ there was a period of time during which Recreational Program Staffer. staff and members experienced pro- The Final Report indicated that there was longed conflict. Staff development grew some staff turnover experienced, including the into a priority, with a wide range of issues Executive Director’s position. Staff characteris- being discussed, including: role clarifica- tics were not provided in detail, although it was tion (peer vs. paid staff); how does a noted that all were consumers/survivors. member complete the transition into Training occurred “on the job”, and staff met becoming a staffer; how does the pro- together weekly for peer support and training. gram justify paying some members who Training was also provided for volunteer are staffers, when all members in the recruitment, food handling, the Transitional program volunteer; staff training on being Employment Program, and general organiza- proactive vs. responding to immediate tional development topics, including: marketing needs; what kind of “special accommo- a nonprofit, applying for nonprofit status, team dations” can be made for consumers/sur- building, board training, and Clubhouse orien- vivors; the risks and benefits of getting

62 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

off of SSI/SSDI; operating in an equal, friend or family; 64% liked the friendship, peo- non-hierarchical fashion; how can the ple, support, and good atmosphere of the club; program integrate into the current mental and 43% liked the lack of stigma and accept- health system as an alternative to tradi- ance. While 30% said they would like the tional modes of treatment; and how can Clubhouse to conduct more community staffers justify gaining expertise and involvement/outreach activities, 93% were training when so few consumers/ generally very satisfied with the Clubhouse; survivors have had the opportunity to 68% said they had more friends since coming do so. It was reported that some of the to the Club; 93% said they would recommend struggles and tensions arising from it to their friends; and 88% of the respondents these issues resulted in resignations said that coming to the Clubhouse helped and terminations of staff. them cope better with their problems. Recommendations based on this demonstration project were as follows: SUCCESSES AND • The purpose of the Clubhouse should be EVALUATION FINDINGS clearly defined (e.g., work-ordered day A process evaluation, which was conducted by participation vs. drop-in, etc.); an outside evaluator, focused on membership characteristics, demographics, changes in • The service population should be clearly status with respect to membership and com- defined, and policy should state who is munity adjustment, and quality of life. Data and is not a candidate for membership; were collected through surveys of staff and • Objectives should be stated in measura- members, participant observation, and group ble terms and reviewed periodically; and individual interviews. The interviews • A local project steering/oversight commit- focused on who were the members, what did tee should be developed for startup they like or not like about the program, and in activities, composed of members: who what other mental health services did they are willing to make a three-year commit- participate. Interviews had 189 questions and ment; who understand consumer/survivor each respondent was paid for participating. empowerment and psychosocial rehabili- Interviews revealed the following findings: tation (PSR); and who understand the 39% reported being hospitalized since joining; personal contribution necessary to partic- 85% were involved in more than two other ipate in one’s own recovery. mental heath services; more than 67% said that they had insufficient funds for social activi- • The Board should be in place prior to ties and transportation; and 30% had been vic- hiring an Executive Director, Board tims of nonviolent crimes over the past year. members should have expertise in Other findings indicated that: nearly half many areas, and the majority should reported moderate or serious problems in be consumers/survivors; maintaining an adequate diet; 54% said they • Clubhouse activities should include food, stayed at home prior to going to club; 54% clerical, advocacy and outreach services; said they stayed at home when not at the Clubhouse; and time spent in day treatment • Funding should be sought from addition- fell from 25% to 7% after participants began al sources by the Board and the Director; going to the Clubhouse. Still other findings • Clear personnel policies should be devel- indicated that: 57% heard about the oped, including job descriptions, hiring Clubhouse from a professional; 25% from

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 63 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

procedures, reasonable accommodations, sity issues, crisis intervention, emergency performance evaluation procedures, ter- management, sexual harassment and mination policies, and ethical standards safe sex, conducting meetings, public regarding staff/member relationships; speaking, Board membership, continuous quality improvement and accountability • Staff should create functional job practices, working with “difficult” people, descriptions, be paid the same as stress management, and setting per- non-consumers for the same work, sonal limits; possess the ability to work with peers and other professionals, and model • The Clubhouse Program Manager desired behaviors; should be onsite at all times, should be conversant with all units, and should be • Staff grievance procedures need to able to work with many different types be developed with specific time frames of people; and for responses; • Ethnic/cultural minority outreach and • The Clubhouse Director should be the involvement should continue to be sole staff supervisor, staff should be told a goal. of expectations upon hiring, and should be placed upon probationary status fol- The Final Report indicated that the Capital lowed by an evaluation; Clubhouse received continued grant funding from the Thurston-Mason County Regional • Staff should be trained on the Clubhouse Support Network. model, meeting facilitation, food handling, the Americans with Disabilities Act, diver-

64 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

WEST VIRGINIA West Virginia Office of Consumer Affairs Huntington, WV

“Now for the first time, consumers have a forum in which to voice their opinions, and an organization to provide the support to make that voice heard.” —Project participant

• Reducing stigma by developing a speak- PROJECT GOALS ers bureau, developing and distributing AND OBJECTIVES informational brochures, and implement- The overall objective of this project was to ing an advertising campaign; and establish a Consumer/Survivor Affairs Office • Demonstrating that mental health pro- within the West Virginia Department of Health, grams can be run effectively and effi- Office of Behavioral Health Services. ciently by and for consumers/survivors, Specific goals included: by employing and training consumers/ • Empowering consumers/survivors so that survivors to conduct peer counseling they may have an impact on mental focused on crisis stabilization and by health services development, by develop- establishing three locally based peer ing an Office of Consumer Affairs, working counseling/support services. with the West Virginia Mental Health Other planned activities included monitoring Consumers’ Association (WVMHCA), and disseminating information about State and becoming involved in policy and planning, Federal legislation; facilitating communication developing a consumer/survivor review of and coordinated efforts between all organiza- mental health services, training staff, tions and individuals involved in mental health reviewing and responding to service griev- planning and service; disseminating project ances and complaints, and developing a information via articles and papers in newslet- consumer/survivor-oriented plan for sup- ters, in journals, and at conferences, publishing portive residential services; a consumer/survivor peer counseling resource • Improving the communications and inter- directory and handbook, and coordinating train- active networks of consumers/survivors ing opportunities for Board members. throughout the State by providing assistance to WVMHCA and other consumer/ survivor groups, developing Statewide PROGRAM teleconferencing and/or bulletin board DESCRIPTION services to facilitate communication, and assisting WVMHCA in production Services Provided of a newsletter; Grant funding enabled the following services to be provided:

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 65 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

• Education and Training. Twenty con- • WVMHCA Support. The project worked sumers/survivors attended Alternatives to expand membership in WVMHCA and ‘89 and thirteen attended Alternatives to strengthen relationships between ‘90; two issues of a newsletter were pub- WVMHCA and community mental health lished and distributed Statewide to over center boards of directors and profes- 500 individuals; the project started oper- sional associations. During the course of ation of an electronic bulletin board; the project, membership in WVMHCA planning and operation of the speakers tripled and ten chapters were organized. bureau began; project staff participated • Advocacy. Consumers/survivors were in staff orientations for the State Depart- active in various advocacy efforts (includ- ment of Health; a training curriculum ing mental health boards and commit- was developed for use with Community tees), and the Executive Director Coordinating Councils; and consumers/ addressed the State Legislature. survivors received training on public speaking from Department staff. • Information and Referral Helpline. A helpline was established and received • Support Groups. A training and organiz- an average of 19 calls per month. ing curriculum for peer counseling group development was created. Eight Pre- • Information Dissemination. Staff spoke scriptive Peer Counseling (PPC) groups at three Alternatives conferences, pre- were active on a weekly basis, with an sented at the International Association average of 50 consumers/survivors partic- of Psycho-Social Rehabilitation Services ipating weekly, and a PPC Handbook was (IAPSRS) conference, trained the Milwau- published. A Community Coordinating kee Planning Council on conducting a Council was developed in each local area housing preference survey, presented (consisting of a Peer Counseling Coor- at the Statewide consumer/survivor dinator, a representative of a local Com- conference in South Carolina, conducted munity Behavioral Health Center, a a six-hour consumer empowerment train- Consumer Affairs Board member, and ing workshop for the South Carolina a local consumer/survivor) to address Mental Health Association, and wrote issues of support group site location, an article for Community Support Net- transportation, child care, and referral. A work News on grassroots organization trained volunteer at each site served as of consumers/survivors. advisor and attended meetings. Groups • Fighting Stigma. The project partici- elected a chairperson, who submitted pated twice yearly in mental health fairs, monthly reports on attendance and activi- and utilized 13 hours of free airtime on ties to the State Consumer Affairs Office public television during May—Mental and maintained contact at least once a Health Month. month with the Peer Counselor Coor- dinator. The Peer Counselor Coordinator conducted monitoring and periodic Individuals Served visits. Two hundred copies of the Peer The project originally planned to serve adults Counseling Resource Directory and with severe mental illness. It was estimated Handbook were published and given to that there were 29,000 people in West Virginia each member of the groups as well as who met this criterion. The criteria were later to mental health staff, as requested.

66 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects revised to include all persons who have A number of materials were developed dur- received any form of mental health treatment. ing the course of the project, including newslet- The “Prescriptive Peer Counseling” groups ters, the PPC Handbook, a housing preference had members with the following characteristics: survey, and a training curriculum. The project each had a severe mental illness; the average interacted with a number of other organizations age was 40 years; 68% were female; 19% were including local mental health providers, family married, 23% were divorced, 41% were single, groups, advocacy organizations, hospitals, and and 17% were widowed; 87% were Caucasian, other consumer/survivor organizations. 5% were Native American, and 9% were The total expenditure of Federal funds for African American; all were living in the commu- this effort was $214,057. nity; 18% were meaningfully employed; 67% received governmental assistance; and the average annual income was $5,000. IMPLEMENTATION ISSUES AND BARRIERS The following issues were encountered during Organization and the implementation of this effort: Administration • Autonomy. The office was moved The grant was awarded to the West Virginia during the second year from the State Department of Health, Office of Behavioral to rented office space elsewhere, as Health Services. The project funds were pro- staff wanted this for privacy, autonomy, vided to WVMHCA, which administered the and self-empowerment. grant activities. No Board information was reported for this effort. • Bulletin Board System. This was never Paid staff included the Project Coordinator/ fully realized due to the inability of con- Executive Director, a Clerical Staffer, a Con- sumers/survivors across the State to sultant, and a Peer Counseling Program access this technology. Coordinator. The State provided, inkind, the Mental Health/Community Support Program Director, the Behavioral Health Coordinator, SUCCESSES AND and a Project Evaluator/Consultant. EVALUATION FINDINGS All staff were required to be consumers/ The evaluation focused on objectives achieved survivors. Staff were interviewed by a commit- and recipient characteristics and empower- tee of State behavioral health services staff ment. It was reported that staff contributed to and consumers/survivors from WVMHCA. the development of data collection instru- Attempts were also made to recruit minority ments. Data on empowerment were collected candidates and individuals who knew on four sets of empowerment descriptors (per- American Sign Language. sonal, emotional, social, and political). The Staff were primarily female and Caucasian. process evaluation was conducted by the Volunteers provided over 150 hours per month WVMHCA Board by reviewing project results of service, including leading peer counseling on an objective-by-objective basis. groups and newsletter production. Volunteer Findings revealed that the project engaged contributions were estimated at $20,000 per in a wide variety of activities including: recipi- year. Staff were provided with training on imple- ent involvement on local mental health boards; menting a housing preference survey, on public advocacy for expanded residential services via speaking, and on creating a speakers bureau. the housing preference survey; establishment of 10 new chapters of WVMHCA; and increas-

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 67 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects ing membership from 45 to 200 individuals. It change comes slowly with knowledge, training was found that Community Behavioral Health and support. Center staff were aware of WVMHCA chap- Recommendations as a result of the ters, but were slow to make referrals. project included: The outcome evaluation surveyed 50 con- • It was suggested that training on self- sumers/survivors (who were members of four help and empowerment should be con- peer counseling groups) twice over a two year ducted first, and then training on the period. The following findings were revealed: organization of the Peer Counseling 85% of respondents had been hospitalized, and Groups at selected locales, rather than 40% had voluntary admissions. Attendance on the reverse (which had been the case). boards of community programs showed an increase. The number of consumers/survivors • Grassroots organization is the most cost- who openly voiced opinions on mental health effective method of effecting change. issues showed the greatest increase. • Mental health consumers/survivors’ natu- Conclusions indicated that project members ral support systems are each other. were more empowered by becoming more involved; the majority of project members had The Final Report stated that the project did been in the system all of their adult lives; and continue with West Virginia State funding.

68 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

WISCONSIN Wisconsin Network of Mental Health Consumers Madison, WI

“. . . Both State and local groups have benefitted from the struggle and learning, and both have flourished.” —Project participant

assistance was also provided in State PROJECT GOALS consumer/survivor conference organizing. AND OBJECTIVES • Newsletter. The project published and The objective of this project was to strengthen distributed the WINMHC newsletter to and formalize the State’s fledgling consumer/ over 1,000 individuals. survivor movement by hiring a consumer specialist within the State Office of Mental Health, • Advocacy. The project obtained con- establishing a Statewide consumer/survivor sumer/survivor representation on approx- Steering Committee to link and support local imately ten committees. Staff spoke at groups, developing and supporting local con- Alternatives conferences, the National sumer/survivor-run programs, and developing Association for Rights, Protection, and the Wisconsin Network of Mental Health Advocacy (NARPA) conference, and Consumers (WINMHC). The Specialist identi- various State conferences. fied and helped communities organize local • Training. Training was provided to staff self-help groups, provided technical assistance, on mental health issues, advocacy, lead- and helped to fight stigma through public edu- ership training, psychotropic medications, cation. In addition, the project provided funding and fundraising strategies. Scholarships for ongoing evaluation which compared differ- were provided to 27 consumers/survivors ent self-help models and for obtaining training to attend State and national conferences. and technical assistance via consultation with other States and consumer/survivor attendance • Mini-Grant Funding. Sixteen groups at State and national conferences. received a total of $65,000 for self-help groups, drop-in centers, peer counseling, and video production in eleven counties. PROGRAM Technical assistance meetings were held DESCRIPTION with all grantees, and grants ranged from $500 to $6,000. Services Provided Grant funding enabled this project to provide: Individuals Served • Technical Assistance. Thirteen self-help Recipients of services were all current con- groups, as well as a telephone network of sumers/survivors or those with a history of groups throughout the State, were estab- severe and persistent mental illness or emo- lished, and the project maintained a col- tional disorders. No information was provided lection of resource materials. Technical regarding client characteristics.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 69 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

Organization and project through the Wisconsin Coalition for Advocacy (WCA), as it was claimed Administration that they had the administrative capabil- In Year 1, grant funds were awarded to the ity and the flexibility necessary to com- Wisconsin Department of Mental Health. In plete tasks more quickly than a State Year 2, this was changed and funds were agency. It was also stated that this was awarded from the State to the Wisconsin done to reduce perceptions of disem- Coalition for Advocacy (a protection and advo- powerment. However, this new project cacy agency), which acted as an umbrella for plan unfortunately resulted in fewer funds funding and project administration. In Year 3, being available for local initiatives, due to the grant was directly awarded from the State new operational costs that were previ- to WINMHC, which administered and coordi- ously provided on an inkind basis by nated the grant activities directly. the State. Initially, a Steering Committee was developed with representatives from six regions of • WINMHC Development. The grant was the State. Meetings were held on a periodic transferred in order to increase con- basis. In 1991, the Steering Committee sumer/survivor control over operations merged with the WINMHC Board. and expenditures. During Year 3, it was Paid project staff included an Administrative proposed to transfer the grant to WIN- Project Specialist and a Technical Assistance MHC in order to increase the autonomy Project Specialist. In-kind staff provided by the and decisionmaking power of the con- State included the Office of Mental Health sumer/survivor staff. Major problems Director and the State Community Support were experienced in this transition as Program Director. a result of the lack of infrastructure at A number of program materials were WINMHC and poor communication developed over the course of the project, between OMH and WINMHC. including job descriptions, a technical assis- • Delay in Mini-Grant Payments. This tance request form, written roles and respon- was a significant problem, and it was felt sibilities of committee members and staff, that it was caused by bureaucracy and and a Request for Proposals. The project overregulation. Local projects felt that collaborated with a number of organizations their efforts were put in serious jeopardy. and entities, including advocacy organizations, the media, family groups, national consumer/ survivor groups, NARPA, and the local Mental SUCCESSES AND Health Association. EVALUATION FINDINGS A total of $364,359 was expended The Final Report highlighted the following ben- during the grant period, with $327,882 efits of the mini-grants that were distributed: in Federal funding. • The consumer/survivor movement was strengthened on the local and IMPLEMENTATION State levels; ISSUES AND BARRIERS • Education and information The following issues were being experienced were provided; during the implementation of the grant: • New self-help groups and projects • Initial Administrative Change. During were initiated; Year 2, the State decided to operate the

70 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 2. Descriptions of the 13 Demonstration Grant Projects

• People became motivated; difficulties resulted from an externally imposed bureaucratic structure.” • There was a reduction of stigma because The evaluator’s major recommenda- people “came out” of the closet regarding tions were: their diagnosis; • Organizations funded with State or fed- • Administrative tasks were learned; and eral dollars should have a clear mission, • The importance of communication, nego- philosophy, and organizational structure tiation, and democratic decision making in place; and were learned. • Levels of financial, policy, and adminis- The Final Report indicated that the administrative structure should be minimized, tration of the project had problems in terms of perhaps through a direct RFP process, growing pains, structure, administration, and rather than through State governments. accountability: “WINMHC [experienced] growing WINMHC received continued support from a pains . . . [WINMHC and the] consumer move- CMHS Service Systems Improvement Grant. ment [were] not mature enough to carry a uni- Many local groups continued with the support fied agenda and consequently [were] too ambi- of county mental health funds, Mental Health tious given the time frame of the grant . . . [they Association funds, United Way agencies, and also] needed more grassroots support . . .” private grants. An increase in the CMHS men- An outside evaluator added the following tal health block grant allocation for Wisconsin comments: “Many local projects were remark- provided additional funds for ongoing con- ably successful in assisting people towards sumer and family initiatives at the State and empowerment . . . much of the administrative local levels.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 71 Chapter 3 CROSS-SITE FINDINGS AND RECOMMENDATIONS

An overall cross-site analysis was conducted vastly different environments, there is the with the findings from the qualitative analysis potential for many extraneous variables which of the thirteen demonstration projects. In com- could impact upon the site—and, therefore, pleting this task, a matrix was developed to cross-site—findings. Also, as discussed previ- compare and contrast the significant findings ously, the data are limited in their comprehen- between each site in each of the seven siveness and validity. Nonetheless, given that domains examined (see Appendix A). The this is a “natural” laboratory, these findings do significant similarities and differences in the offer impressions and indications associated following domains are presented below: with and across these sites. The last section consists of overall sugges- • Project Goals and Objectives; tions and recommendations based on the • Services Provided; cross-site findings. It is hoped that these will • Individuals Served; offer guidance for consumers/survivors, State • Organization and Administration; and local mental health authorities, policy • Implementation Issues and Barriers; makers, managed care organizations, and oth- • Successes and Evaluation Findings; and ers involved in the planning, policy develop- • Recommendations. ment, operation, and evaluation of consumer/ It is important to note that there are method- survivor-operated services. ological weaknesses with this approach. As different service models were developed in

PROJECT GOALS AND OBJECTIVES “[It] appears that these efforts focus Mutual Support on priority needs as identified by con- In keeping with a major tenet of the consumers/survivors which are often not sumer/survivor self-help movement, over 75% addressed by traditional mental health of the sites indicated that the provision of service providers.” mutual or peer support was a major goal. This ranged from drop-in center programs in In examining the findings from the individual New Hampshire to the shared resource sys- projects, a number of similar themes, goals, tem in California. An array of needs was and objectives were apparent and are dis- addressed through the provision of mutual cussed below. Please note that goals stated in support, including socialization, limited project materials may differ from the opera- resources, employment, and peer counseling. tional goals that actually existed.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 73 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 3. Cross-Site Findings and Recommendations

Basic Human Needs Summary The provision of direct services to meet critical Approximately 70% of the sites indicated simi- human needs was also cited by 85% of the lar goals. Four of the sites indicated—in one projects. The needs included housing, employ- form or another—all of the above five goals ment, food, independent living skills, protection within their stated goals or objectives, with five against discrimination, access to services, additional sites indicating four of the goals. socialization, crisis respite care, and outreach. Three sites that were unique in their ap- Research has shown that these needs are proach were California (with a focus on shared often cited as priorities by consumers/survivors administration and resources among different across the Nation (Ridgeway, 1988b). self-help initiatives), Colorado (developing a “superstructure” to develop businesses), and Vermont (focusing on video production and Empowerment distribution). While their approaches may have Over 50% of the projects noted the general differed from the other alternative service pro- goal of empowering consumers/survivors viders, they did share a number of similar goals as a major focus. Again, this is a major (e.g., public education, basic needs) with the philosophical tenet of the consumer/survivor other sites. self-help movement. This took the form of In reviewing the five significant goals/objec- increasing both personal as well as collective tives (mutual support, basic human needs, empowerment via leadership development empowerment, public education, and rights pro- training, community organizing, technical tection), it does seem apparent that the philoso- assistance, and obtaining representation phy and values of the consumer/survivor self- on boards and committees. help movement have a significant impact upon the focus of these projects. In addition, it appears that these efforts focus on priority Public Education needs (as identified by consumers/survivors) The most frequently cited goal (over 90% of the which are often not addressed by traditional sites) was public education and information mental health service providers with a focus on dissemination. This ranged from speakers professionally driven mental health treatment. bureaus, to publishing newsletters, to present- Consumer/survivor-operated services are ing at conferences. Two major foci seemed to addressing and striving to meet the critical, self- be addressing stigma/discrimination and dis- identified concerns of consumers/survivors that seminating information about the projects. are often overlooked in other models.

Rights Protection Services Provided Over 75% of the sites noted that rights protec- “It is clear that consumers/survivors tion was a project goal. This included both indi- can provide a broad and diverse range vidual case advocacy and systems advocacy of services.” and ranged from helping people to access services, to coalition building, to effect needed A range of services were provided via the change. Sites participated in legal and legisla- projects. Documented below are the major tive advocacy, as well as hospital monitoring categories of services that were provided and developing policy and planning initiatives. by these efforts.

74 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 3. Cross-Site Findings and Recommendations

Drop-In Centers Advocacy More than half of the projects operated drop- As mentioned above, advocacy for rights in center programs that provided socialization/ protection and service access was a signifi- recreation and other services. This is a model cant activity by over 75% of the sites. While a that has gained great popularity as an effec- variety of advocacy strategies were employed, tive consumer/survivor-operated program. the facilitation of consumer/survivor represen- Since the implementation of these projects, tation on boards and committees was a major drop-in centers have continued to flourish with accomplishment of many of the projects. the development of this model in most States across the Nation. Outreach Outreach activities were conducted by Support Groups approximately 40% of the sites. This included Over 75% of the projects organized support outreach to individuals in hospitals, in-home groups or peer counseling efforts for con- outreach to provide support services to people sumers/survivors. This is indicative of the released from such settings, and street and origins and basis for the consumer/survivor shelter outreach to consumers/survivors expe- self-help movement—grass-roots self-help riencing homelessness. groups. A few of the projects were specifically designed to assist in the organizing of local Technical Assistance and Training support groups in their region or State. These Nearly half of the sites provided technical models help to address the needs for peer assistance and training activities to other support, socialization, and recovery-based consumers/survivors. This ranged from provid- approaches that emphasize self-determination, ing training on medication issues to providing consumer/survivor strengths, encouragement, technical assistance in other communities to and hope. help them replicate these projects.

Information and Referral Independent Living About 40% of the sites provided information Direct services to assist persons in inde- and referral services to consumers/survivors pendent living were offered by almost 50% of to address human and social service needs. the projects. This ranged from shower facilities, These services help consumers/survivors to to roommate matching services, to small loan understand and access services and benefits funds for housing or employment expenses. which may be available to them. Employment Information Dissemination A complementary, yet significant, finding All of the sites indicated that they provided was that all of the projects employed information and education to the public consumers/survivors in various capacities about their projects, mental health issues, etc. in their activities. This employment provided A number indicated that they focused on valuable experience for the individuals in- addressing the topic of stigma. One project volved. Often, it enabled individuals to cease (Vermont), focused exclusively on public infor- receiving Social Security and other benefits mation/education and communications through and become fully employed, tax-paying citi- video production and dissemination. zens. It was noted that some of the staff used these positions as “stepping stones” to obtain other employment. Many other individuals participated in non-paid, volunteer employment

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 75 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 3. Cross-Site Findings and Recommendations positions. While the data were incomplete, was found to be cumbersome and broader cri- sites that reported findings indicated that over teria were employed. As a whole, all of the proj- 260 consumers/survivors participated in ects indicated that they served persons with employment capacities within these projects. serious mental health problems including persons in hospitals or recently discharged. Summary All of the projects offered multiple services. Impoverished Five of the sites offered seven of the service Projects that reported the income of partici- categories mentioned above. An additional pants served (over 30%) indicated that they four sites provided services in six of the cate- served persons who were in poverty, including gories. Therefore, approximately 70% of the individuals experiencing homelessness. One projects provided a minimum of six different site indicated that 82% of those served were services. It is clear that consumers/survivors unemployed, and another reported that the can provide a broad and diverse range of average annual income of service recipients services. Two of the projects were unique in was $5,000 per year. their focus on select activities: the development of consumer-run businesses and a video Gender Balance production enterprise (Colorado and Vermont). It seems that both genders were attracted to this service model. Four (4) sites reported the majority of members served were men, while Individuals Served three (3) sites reported a higher percentage of “Consumer/survivor-operated projects can members were women. serve large numbers of low- income individuals with significant mental health con- Cultural Diversity cerns who have diverse backgrounds.” The reported racial characteristics of members were diverse—however, of those reporting, The total number of service recipients reported 70% indicated that a majority of service recipi- was 5,701 individuals. This does not include ents was Caucasian. Two sites which indi- the projected 1.6 million homes that were cated that a majority of people of color were reached via cable television broadcasts by one served were also in highly urbanized areas: of the sites. The number of persons served the California Bay Area and New York City. was probably higher as some of the sites did A number of projects specifically targeted not provide detailed information on the number outreach to people of color communities or characteristics of those persons who were with varying results. served. Excluding the video project, the number of reported persons served by individual Young- to Middle-Aged Adults sites ranged from 101 to 3,500. The range of ages served was from 15 to 80 Demographic findings across the sites are years old. The average age range seemed to discussed below. be between 18 and 55 years old, with over 80% of the sites indicating this range. Persons With Psychiatric Disabilities All of the projects indicated that they served individuals with psychiatric disabilities. Interest- ingly, some had initially developed fairly detailed criteria of who was to be served. Over time, this

76 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 3. Cross-Site Findings and Recommendations

Veterans Training and Technical Assistance The one site that reported on this characteris- It was reported that over 60% of the sites tic (CA) indicated that approximately 30% of received some training and technical assis- its recipients were military veterans. tance in organizational and staff development. This ranged from training on marketing, to peer counseling skills, to bookkeeping. There Summary was, however, a lack of a coordinated The above data indicate that consumer/ approach to training and technical assistance survivor-operated projects can serve large as is now generally provided in CMHS-funded numbers of low-income individuals with multisite evaluation demonstration projects. significant mental health concerns who have diverse backgrounds. Project Materials Over 75% of the sites reported that they developed project materials to assist with the ORGANIZATION AND administration of their organization. This ADMINISTRATION included personnel policies, financial account- “Consumers/survivors can develop service ing forms, job descriptions, informed consent organizations with moderate costs that forms, intake materials, and others. The devel- are autonomous and, yet, collaborate opment of these materials depicts the growth with a myriad of different sectors to meet of these organizations. consumer/survivor needs.” Increased Collaboration Project organization and administration were Approximately 85% of the sites reported significant factors that impacted upon the devel- increased collaboration with other organ- opment, operation, and ultimately, outcomes of izations in the course of their activities. these initiatives. Only two of the projects oper- Collaboration to address consumer/survivor ated as bona fide non-profit organizations upon needs occurred with many different entities, receipt of their funding. Many of the projects including: mental health providers, advocates, learned (and at times struggled) to successfully social services, churches, businesses, manage such a structure. Some of the findings universities, and governmental entities. in this area are discussed below. Funding Autonomy The total costs for all thirteen projects for Over the life of the projects, over 90% of the their grant years totaled $4.81 million. The initiatives obtained autonomous non-profit amount of funding for project activities (as status with Boards of Directors. Initially, most $167,000 to $540,000 in total costs, with a of the sites operated via a “pass-through” non- mean of $370,000 per site for the average profit organization for administrative supports three-year period of these efforts. This large and services, such as financial management. variation significantly impacts upon the com- By the end of these grants, almost all had parability of these projects. In general, how- developed the capacity to conduct these ever, each project had a very modest average functions on their own. budget of approximately $124,000 per year. As will be noted later, access to adequate resources was reported as a crucial element in project success.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 77 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 3. Cross-Site Findings and Recommendations

Summary Limited Resources In reviewing the above, it is apparent that con- Almost 50% of the sites reported that a lack of sumers/survivors can develop service organiza- resources impeded their ability to adequately tions with moderate costs that are autonomous carry out their activities. In a number of the proj- and yet collaborate with a myriad of different ects, consumer/survivor need outpaced the sectors to meet consumer/survivor needs. In available funds to address them. This resulted addition, training and technical assistance, in fewer personnel, as well as a lack of neces- along with adequate resources, appear to be sary equipment for some sites (e.g., typewrit- key factors in the successful organization and ers, computers, and video equipment). Many administration of these efforts. projects believed that more could have been accomplished, given adequate resources.

IMPLEMENTATION Staff Turnover Changes in personnel were reported by ISSUES AND BARRIERS almost half of the sites. This was due to a number of factors, including individuals seek- “To avoid these pitfalls, consumers/ ing other employment, lack of training, inter- survivors need adequate resources, personal conflicts, and health reasons. A num- training, and development as well as ber of sites actively pursued staff development mutually respectful collaborations training, formal personnel policies, and rea- with public and private sectors.” sonable accommodation practices to address these issues. Some of the best lessons are realized by the problems we encounter. These demonstration projects experienced implementation Lack of Organizational Expertise Approximately one-third of the sites indicated issues and barriers which offer useful learning that a lack of necessary training on organi- experiences for those who are replicating zational issues (e.g., financial management) such models. was a significant barrier. As indicated elsewhere, most of the organizations undertaking Startup Delays these ventures were new themselves and More than half of the projects reported experienced rapid growth. The vast majority of delays in project implementation which staff had limited knowledge or expertise in were primarily due to the length of time it nonprofit organizational management issues. took funding to move from the Federal The training that was offered on management Government to State Governments and, skills was reported to be helpful, but compre- finally, to the projects. As mentioned earlier, hensive and coordinated training was missing. in the early phase of most of these efforts, there were additional organizations which acted as fiduciary agents for the consumer/ Working with Bureaucracies Approximately 30% of the projects reported survivor projects which created another layer difficulties working with State bureaucra- of bureaucracy affecting funds transfer. In cies due primarily to value differences some cases, the startup delays resulted in between consumer/survivor efforts and State lowered consumer/survivor interest and partici- systems. This resulted in issues surrounding pation as well as increased potential for alien- paperwork, evaluation requirements, etc. ation from State and Federal bureaucracies.

78 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 3. Cross-Site Findings and Recommendations

Interpersonal Conflict It is also interesting to note that a few of the Conflicts between consumer staff and/or sites had unique issues which they confronted. board members were reported as barriers by This included State geographic distances, about one-third of the sites. These took the community resistance to program location, nature of political and philosophical differ- transportation issues, and philosophical ences, personality and ego clashes, jeal- debates over having a commercial enterprise ousies, and power struggles. These conflicts orientation versus maintaining an advocacy- are not unique to these specific projects, nor based, non-profit status. are they unique to consumers/survivors. One confounding factor may be the principle of egalitarianism in the consumer/survivor move- SUCCESSES AND ment, which can be compromised with the EVALUATION FINDINGS introduction of paid staff into such projects. “Consumer/survivor-operated services are successful in increasing the overall Unclear Focus quality of life, independence, employ- In several of the sites, it was noted that the ment, social supports, and education project lacked a clearly articulated series of of consumers/survivors.” priorities or foci. This was due, in part, to a lack of experience in strategic planning and There were wide and varied successes is related to the organizational expertise documented within the evaluations of these mentioned above. projects. Overall, the hypothesis that consumers/survivors can successfully develop Autonomy and operate autonomous service organi- Approximately one-third of the sites also indi- zation was validated. cated that consumers operating their own pro- Perhaps the greatest measure of success is grams created tensions with professionals. that over 70% of these initiatives were contin- In a few projects, this took the form of issues ued with the assistance of other funding of control, paternalism, and “turfism”, as pro- sources. These projects demonstrated that fessionals were uncertain in their dealings or they were successful in capturing ongoing responded in traditional fashion with these financial support. Other significant, cross-site new models, and, at the same time, con- findings, with a focus on person-centered out- sumers/survivors, in pursuit of empowerment come measures, are discussed below. and self-determination, resisted these responses. Increased Recipient Self-Efficacy All of the projects reported that as a result of these initiatives, consumers/survivors had Summary achieved greater levels of independence, While the above issues will be explored in empowerment, and self-esteem. Individuals greater detail in the final part of this chapter, it had an improved sense that they could make can be stated in summary that in order to their own decisions, solve problems, and help avoid these pitfalls, consumers/survivors need others. This helped people to become more adequate resources, training and develop- confident and to cope better. ment, and mutually respectful collaborations with public and private sectors.

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 79 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 3. Cross-Site Findings and Recommendations

All of the projects reported that consumer/ Expanded Education and Knowledge survivor quality of life was increased in More than half of the projects reported suc- various aspects. This included better income, cess in increasing the knowledge of con- housing, and friendships. For some individu- sumers/survivors in various areas such as als, it meant better knowledge of rights and rights, available services, communication, services. These efforts helped people to stay negotiations, working in a team, and organi- out of hospital settings and contribute pos- zational operations. These efforts also played itively to their communities. an important role in educating the community about the positive abilities of consumers/ Increased Social Supports survivors, to counter the often negative, The development of social supports was a stigmatizing portrayals. key success reported by over 60% of the proj- Based on these results, it can be said that ects. People felt more accepted and had consumer/survivor-operated services are suc- greater numbers of friends. For some individu- cessful in increasing the overall quality of life, als, these efforts played a central role in their independence, employment, social supports, social lives. These social supports and accept- and education of consumers/survivors. ance helped people to combat the social Other successes cited include that ostracism and loneliness which often accom- consumers/survivors can be extremely panies mental health problems. devoted staff members to assist their peers, and that consumers/survivors can overcome Enhanced Employment difficulties to deliver needed services. As mentioned elsewhere, all of the projects recorded an increase in employment skills and experience among those consumers/survivors participating in these efforts. As poverty and unemployment are other major factors in the lives of consumers/survivors, this success cannot be overlooked.

80 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services Chapter 4 OVERALL RECOMMENDATIONS

“Efforts to develop consumer/survivor- the latter, this was a source of substantial operated services should include adequate distress for a number of the projects in their technical assistance, strategic planning, last grant years, resulting in distractions funding, and cooperation with a need to from project activities. increase people of color participation.” Enhanced Cooperation Many of the individual projects offered recom- Approximately one-third of the projects re- mendations on how to improve these efforts. ported the need for improved cooperation The following represents overall recommenda- with governmental entities, providers, family tions that were mentioned by the greatest members, and advocates. In addition, there number of sites. was a need for increased cooperation amongst consumers as well.

Increased Technical Assistance Expanded People of Color and Training Representation Approximately 70% of the sites indicated that Approximately one-third of the projects re- more training and technical assistance ported the need for expanded representation would have contributed to increased succes- of people of color in consumer/survivor self- ses. This training was needed in organization- help activities. Greater outreach to these com- al development as well as staff development. munities was cited as a need. Participants revealed that they felt hindered by this lack of knowledge and that coordinated, More Research comprehensive approaches to meeting Approximately 40% also indicated the need technical assistance needs would have for more research into consumer/survivor- been of benefit. operated services. This included enhanced research into who is attracted to self-help, as Better Planning well as rigorous process and outcome evalua- More than one-third of the projects reported tions of these ventures. that they needed better preparation and planning prior to starting these initiatives. This Fund Projects Directly includes the development of a clear mission, As a result of the startup delays mentioned philosophy, and operational structure before earlier, about 20% of the sites suggested that implementation. There was a need for a more future funding for these initiatives be pro- “proactive” strategic approach to planning. vided directly to the recipient organization, rather than via State Mental Health Authorities. Adequate Funding and Continuation About 40% of the sites indicated a need for increased resources to adequately accom- Summary plish project activities, as well as firm assur- The above findings indicate that efforts to ances of continuation funding. Regarding develop consumer/survivor-operated services

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 81 CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 4. Overall Recommendations should include adequate technical assistance, • Independence (including eliminating strategic planning, funding, and cooperation, people’s need for Social Security and with a need to increase participation by people welfare benefits); of color. Future research is needed to examine • The impact of self-help on specific sub- the process as well as the outcomes associ- populations (e.g., racial and ethnic ated with this model. minorities and women); It is important to note that since the implementation of these projects, a large number of • Recipient satisfaction with services; additional consumer/survivor-operated services • Empowerment; and have been developed, including: case management, housing, employment assistance, “hi- • Examining whether these programs tech” computer networks, a pharmacy, higher serve those whose needs would not education assistance, commercial enterprises, otherwise be met. and many others. Also, these and other initiatives have demonstrated similar findings, Training and Technical Assistance including the ability to reach large numbers of There is an ongoing need for targeted training diverse individuals. One example is an organi- and technical assistance in the development of zation in a southeastern State that provides consumer/survivor-operated services. This leadership training and development at annual should be focused on all areas of non-profit conferences with over 1,500 consumers/ organization management, including board survivors at each gathering. development, fiscal management, staff super- Finally, in addition to the above project- vision, conflict resolution, strategic planning, based recommendations, the following fundraising, managed care, and cultural diver- overall recommendations are offered: sity/competency. Training and technical assistance also needs to be given to States and • Research. There is a clearly defined providers to demonstrate how they can sup- need for more rigorous research of port consumers/survivors developing their own consumer/survivor-operated services. service programs. Efforts to provide training Suggested research designs include a and technical assistance should use continu- multisite, multiyear effort with common ous quality improvement strategies to adapt data collection and measures. A coordi- the training to the needs of consumer/survivor- nation center should be established to operated services. assist with data collection and related technical assistance matters. The deter- Funding mination of the research design and spe- Financial support for the operation of con- cific measures and methodology to be sumer/survivor-run services should expand and employed should be directed by con- originate from a variety of sources: State gov- sumers/survivors. Consumers/survivors ernments (possibly through a setaside of block should be meaningfully involved in every grant funds), managed care organizations, pri- stage of this process from conceptualiza- vate foundations, and other Federal entities tion to data analysis to publication. (e.g., HCFA, HRSA, NIMH, RSA, SAMHSA). Specific outcomes and other measures that Also, other financing mechanisms, such as fee- could be examined include: for-service and capitation within managed care arrangements, should be explored. • Cost/benefit analyses;

82 U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services CONSUMER/SURVIVOR-OPERATED SELF HELP PROGRAMS: A TECHNICAL REPORT Chapter 4. Overall Recommendations

Public Education • Practice guidelines; The benefits of consumer/survivor-operated • Best practices; services also need to be marketed. This should be targeted to specific audiences— • Staff competency evaluation and including funding entities and other policy- credentialing; and determining bodies. This could entail the use • Staff training curricula. of traditional dissemination strategies (e.g., These should be developed with the direct journal articles, conference presentations) as and meaningful involvement of consumers/sur- well as other marketing tools (e.g., direct mail, vivors. In addition, draft “boilerplate” language print ads, Internet, and other technologies). needs to be developed for States to insert in bidding and contracting processes which man- Managed Care date consumer/survivor services in benefit The development of managed care for publicly plans and service system designs. financed mental health services may drastically The future of consumer/survivor self-help alter the landscape for consumer/survivor- services appears to be bright. As the benefits operated services. Managed care organizations of this model—both on individual and systems need to become better educated on these mod- levels—become better known throughout the els. There also is the need to integrate con- Nation, the growth of self-help efforts will sumer/survivor-operated services within man- hopefully continue, unabated. aged care settings, through the development of:

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U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 89 APPENDIX A: TABLE OF FINDINGS

Recommendations nacdCooperation Enhanced

• • • • • • • • • • • • • 36 dqaeFnigadContinuation and Funding Adequate

• • • • • • • • • • • • • 36 etrPlanning Better

• • • • • • • • • • • • • 36 xaddPol fClrRepresentation Color of People Expanded

• • • • • • • • • • • • • 36 udPorm Directly Programs Fund 2 • • • • • • • • • • • • • 15

Findings oeResearch More

• • • • • • • • • • • • • 41 nrae ehia sitneadTraining and Assistance Technical Increased

• • • • • • • • • • • • • 69 Successes and Evaluation nacdEmployment Enhanced

• • • • • • • • • • • • • 62 nrae oilSupports Social Increased

• • • • • • • • • • • • • 54 xaddKoldeadEducation and Knowledge Expanded • • • • • • • • • • • • •

100 nacdQaiyo Life of Quality Enhanced

• • • • • • • • • • • • • 69 rjc Continuation Project • • • • • • • • • • • • •

100 nrae Self-efficacy Increased

• • • • • • • • • • • • • 31 okn it Bureaucracies th wi Working

• • • • • • • • • • • • • 31 Autonomy Implementation Issues and Barriers

• • • • • • • • • • • • • 48 tf Turnover Staff

• • • • • • • • • • • • • 31 nla Focus Unclear

• • • • • • • • • • • • • 31 ako raiaiolExpertise Organizatinoal of Lack

• • • • • • • • • • • • • 31 neproa Conflicts Interpersonal

4 Organization/

• • • • • • • • • • • • • 31 Administration iie Resources Limited

6 • • • • • • • • • • • • •

46- tr-pDelays Start-up

7 • • • • • • • • • • • • •

54- nrae Collaboration Increased

• • • • • • • • • • • • • 11 85 rjc Materials Project

• • • • • • • • • • • • • 10 77 Training 8 • • • • • • • • • • • • •

Who Was Served Autonomy

• • • • • • • • • • • • • 12 92 Veterans

1 8 • • • • • • • • • • • • • g ag 1855 Range Age

• • • • • • • • • • • • • 69 aoiyo Women of Majority

• • • • • • • • • • • • • 23 infcn ubro epeo Color of People of Number Significant

• • • • • • • • • • • • • 15 rmrl moeihdPersons Impoverished Primarily

• • • • • • • • • • • • • 31 rmrl esn ihPyharcDisabilities Psychiatric with Persons Primarily • • • • • • • • • • • • • 13

100

Services Provided Employment • • • • • • • • • • • • •

100 ehia sitneadTraining and Assistance Technical

• • • • • • • • • • • • • 46 Outreach

• • • • • • • • • • • • • 38 Advocacy

• • • • • • • • • • • • • 10 77 nomto Dissemination Information • • • • • • • • • • • • •

100 nomto n Referral and Information 5 • •

• • • • • • • • • • • 38

Objectives upr Groups Support Project Goals and

• • • • • • • • • • • • • 10 77 rpi Centers Drop-in

• • • • • • • • • • • • • 54 ulcEducation Public

• • • • • • • • • • • • • 12 92 ai Needs Basic

• • • • • • • • • • • • • 11 77 ihsProtection Rights

• • • • • • • • • • • • • 10 77 efhl rMta Support Mutual or Self-help

• • • • • • • • • • • • • 10 77 Empowerment 7 • • • • • • • • • • • • • 54

% IN WI VT TN

NY CA NH CO ME OR WA WV MO Total States

U.S. Department of Health and Human Services, Substance Abuse and Mental Health Service Administration, Center for Mental Health Services 91 Consumer Information Series Volume 1 SMA 01-3510 www.samhsa.gov Printed 2001