The International Journal of Psychosocial Rehabilitation

 

“Recovering” Consumers and a Broken Mental Health System in the United States:
 Ongoing Challenges for Consumers / Survivors and the New Freedom Commission on Mental Health
 

Part I (of a two-part series):

Legitimization of the Consumer Movement and Obstacles to It

 

by

Athena McLean, Ph.D.
Central
Michigan University
Department of Sociology, Anthropology, and Social Work
Anspach 128
Mount Pleasant, MI 48859 USA

athena.mclean@cmich.edu
home office:  517-333-3703

Citation:
McLean, A. (2003). Recovering Consumers and a Broken Mental Health System in the
United States:
Ongoing Challenges for Consumers/ Survivors and the New Freedom Commission on Mental Health.
Part I: Legitimization of the Consumer Movement and Obstacles to It.

 International Journal of Psychosocial Rehabilitation. 8, 47-57


 Acknowledgments.  Part of the research was conducted under NIMH Contract #92MF03814201D.  I wish to thank the many consumers, mental health officers and evaluators who participated in this study.

1.  The centers targeted for cuts include the National Empowerment Center (NEC) in Lawrence, MA;  the National Mental Health Consumers’ Self-Help Clearinghouse, Philadelphia;  the Consumer Organization and Networking technical Assistance Center (CONTAC) in Charleston, W VA; The National Consumer Supporter Technical Assistance Center at NAMI, Arlington, VA;  and the National Consumer Support Technical Assistance Center of the National Mental Health Association (NMHA) in Alexandria, VA.


Abstract

Since its anti-psychiatry beginnings, the consumer/survivor movement has succeeded in promoting its self-help recovery perspectives and gaining legal rights for patients.  On July 22, 2003, the U. S. President’s Freedom Commission on Mental Health advocated a consumer-driven and recovery-oriented mental health system -- a  major coup for consumers/survivors.  At the same time countervailing forces began blocking their efforts, challenging their accomplishments and promoting opposing agendas.   This article is the first of a two-article series that examines how multiple counteracting forces have situated the psychiatric consumer movement today, either propelling it or trying to reverse its achievements in shaping the production of mental health services.  This part of the series describes how professionals came to embrace consumer/ survivor perspectives as well as attempts of oppositional forces to de-legitimize its gains early in federally funded initiatives of consumer run demonstration projects.

 
The next article (Part II of the series) will review the losses and gains to consumer initiatives resulting from a restructuring of behavioral health services in the
United States under managed care.  It will also examine recommendations of the Freedom Commission, and considers their implications for the social production of mental health services in a political environment where consumers/ survivors have lost legal ground in recent years.    

 


Introduction

In July 2003, forty years after the federal government of the United States mandated release of thousands of institutionalized patients into the community, the President’s New Freedom Commission on Mental Health (hereafter, Commission) declared the mental health system to be in shambles.  The Commission recommended a complete revamping of the national mental health system to create access and integration of services oriented to recovery and consumer and family preferences  (1).  This is a major coup for the psychiatric consumer and ex-patient movement where the recovery concept was born.  During the past three decades consumers and ex-patients (now called consumers/ survivors) “recovering” from the debilitating effects of their illness, institutionalization, and lost self esteem have promoted the value of peer support, (2, 3) and consumer run services built on it.  The consumer/survivor movement has gained momentum in recent years, broadening its coalitions and finding vigorous support for its holistic vision of recovery, as evidenced both in the Surgeon General’s 1999 report (4) and the newly released report of the Freedom Commission on Mental Health (1).

Since its anti-psychiatric beginnings, the consumer/ survivor movement has made significant gains both in promoting its recovery vision and in acquiring legal rights against long and unjustified institutionalization.  However at the very point when consumer/survivor philosophies based on recovery are gaining public recognition and inspiring the reconfiguration of mental health services nationwide, countervailing forces began threatening to erode their gains. These forces -- an ideologically extreme wing of psychiatrists and family advocates -- have emerged at various times to oppose those who have questioned rigid biomedical perspectives and to promote easier commitment laws and coercive treatments.  Given their strong backing by the pharmaceutical industry and direct access to the Bush Administration, they are powerful players against the progressive changes supported by the Freedom Commission.  At no other time have contradictory ideologies and agendas been more active in trying to shape the production of mental health services and the treatment of its users.

This is the first of a two-article series that examines how multiple counteracting forces have situated the psychiatric consumer movement today, either propelling it or trying to reverse its achievements in shaping the production of mental health services.  The articles pull from a number of different elements in the history of this movement, examining relationships its leaders developed with the mental health community, efforts and effects of oppositional forces at different times in its history, the impact of managed care, and the implications of the Commission report.  This first article will briefly discuss the development of the consumer movement and the notions of recovery and community support. It will then trace the development of allegiances between consumers/survivors and professionals who learned of their perspectives, programs, and notions about recovery, promoted the production of innovative mental health plans, and enabled the eventual construction of the Commission’s recommendations.  l then examine two phases in the development of 13 consumer run demonstration projects and offer evidence of  political interference from some of the same oppositional forces that are at play again today. 

BACKGROUND TO CONSUMER/ SURVIVOR MOVEMENT AND THE COMMUNITY SUPPORT PROGRAM (CSP)

Ex-Patients/Survivors, Consumers, and Consumer Empowerment
The consumer/ survivor movement began in the late 1960s as a human rights movement (5 - 7) by anti-psychiatric ex-patients who objected to institutionalization and treatments that deprived them of hope, independence and control over their lives (1).  As they began to communicate with each other, many came to question biomedical assessments of the biological irreversible chronic nature of their disorder and need for lifelong reliance on psychotropic medication; others implicated iatrogenic effects of expert treatment and assessments (1).  They lobbied against coercive treatment and institutionalization, respect from providers, and self-determination over treatment goals and outcomes.  Today, as “survivors,” they continue to reject a biomedical explanation of mental illness, forced treatment and involuntary commitments, and lobby for increased material and social supports as a deterrent to mental illness.  By the 1980s survivors were joined by “consumers,” who accepted the medical model of mental illness but advocated for community support.  Both groups regard “consumer empowerment”--  based on self-determination and control -- as a corrective (9) to the indignity of forced treatment and involuntary commitment (8) and value mutual support for promoting personal recovery (10, 11). beyond measurable reductions in symptoms. Together they advocate consumer run services as self help alternatives or supplements to traditional mental health services.

Recovery
Judi Chamberlain, a pioneer of the anti-psychiatry movement had referred to elements of consumer empowerment and recovery in her classic story about the Consumer Movement  (1).   Recovery referred to proactively taking charge of one’s life and illness, in moving beyond chronicity.  It related to changes in the self through empowering efforts to become self-reliant and satisfied in personal relationships and productive activities (12, 13, 14).  Chamberlain has worked with researchers (16) whose technologies and workshops for professionals (17) have extended legitimacy to recovery as a guide for a successful rehabilitative model (18).

There are multiple models of recovery, however.  Recovery in structured rehabilitation models (16) compares to looser notions of a process needing continual nurturing (19); both offer a learning perspective to cope with an ever present disease.  These processual views contrast with recovery as an endpoint of completely terminated symptoms (18), a view backed by  research showing complete remission of symptoms in deinstitutionalized patients (20, 21).   However, it raises the ire of critics such as Torrey (18, 22) who consider it “dangerous” for raising false hopes.

Initiating the Community Support Program
The Community Support Program (CSP) was initiated in 1977 as an antidote to the deinstitutionalization of patents into the community without adequate support for them.   It aimed to provide national leadership to integrate services at the state level and to help clarify lines of responsibility and funding at various levels of government.  The leaders of the CSP sought a comprehensive model of community support based on a rehabilitative approach sensitive to client needs rather than to a strictly medical model of care  (23) -- controversial for its time.  The consonance of community support with the goal of consumer empowerment caught the a
ttention of the administrators of the new Community Support Program  (6, 24) and in 1984 the CSP identified self-determination (9) as a guiding principle of its Community Support Systems (25, p. 11).  Depending on how far it deviates from the medical model, CSP continues to raise criticism from extremist wings of psychiatry and the family advocacy movement.

I. RELATIONSHIPS OF CONSUMERS/ SURVIVORS WITH GOVERNMENT OFFICIALS AND MENTAL HEALTH PROFESSIONALS

The Community Support Program
From its earliest days, the Community Support Program (CSP) enlisted consumer input, initially from families, but later from consumers and ex-patients as well.  Consumers insisted that the interests of families as “consumers” did not necessarily represent their own (26, p. 35), since ex-patients objected to forced treatment and involuntary commitment while many families favored both.  These differences in ideology between families and consumer/ survivors sharpened after families organized the National Alliance for the Mentally Ill (NAMI) (27, pp. 970-971), a powerful advocacy organization, in 1979 (6, p. 828).

Neil Brown and Jacqueline Parrish, chief officers of the CSP at the Center for Mental Health Services (CMHS) (2) were drawn to consumer self help and its compatibility with CSP’s rehabilitative philosophy (24, p. 6).  In 1988 they began funding consumer run demonstration services projects developed with state mental health program staff.  These collaborations allowed consumers to share their ideas about service needs and their empowerment philosophy.  It also led to the development of state-level Offices of Consumer Affairs which helped shape mental health policies and initiatives.

CSP also wrote federal laws mandating state mental health plans to include consumer alternatives (28) and to involve consumers in constructing their state’s making mental health policy (6, p. 827).  CSP arranged conferences between consumers and directors of mental health associations and other professionals on recovery.  These meetings facilitated communication between potentially adversarial groups and allowed clarification, comparison of views, and possible collaboration.

 In 2000 the CMHS established a Consumer/ Survivor Subcommittee to help guide the CMHS’s powerful National Advisory Council on mental health policies.  CMHS, however, has remained a controversial and marginalized government body, symbolically relocated from the more prestigious National Institute of Mental Health (NIMH) to the Substance Abuse and Mental Health Systems Administration (SAMHSA).  It has been subject to particular pressure from lobbyists who disprove of its programs, and to the vagaries of changes in political administration.
The Mental Health Statistics Improvement Program (MHSIP) of SAMHSA

 Through contacts at SAMSHA consumer researchers worked on developing consumer defined outcome measures, treatment goals, and a mental health research agenda (29; 30, p. 12).  A task force convened in 1993 to develop the MHSIP Consumer-Oriented Mental Health Report Card, similar to one constructed by NAMI.  With support from MHSIP, the Survey and Analysis branch of CMHS, and the National Association of State Mental Health Program Directors (below) consumer researchers and mental health professionals organized the Consumer/ Survivor Research and Policy Workgroup in 1992.  The group has aimed for greater control over mental health research by reviewing grants and defining the content of proposal requests and review criteria.

National Association of State Mental Health Program Directors (NASMHPD)
Through contacts at the CMHS and mutual writing of CSP grant applications, consumer leaders came to know mental health program directors of their states.  By the end of 1989, every director or commissioner signed the NASMHPD Position Paper on Consumer Contributions to Mental Health Service Delivery, which affirmed consumers’ unique contributions to program formation and evaluation and in educating mental health professionals in their perspectives (31).

In 1993 NASMHPD established the National Association of Consumer/Survivor Mental Health Administrators to help state officers of Consumer Affairs deal with the competing demands of consumers/ survivors and bureaucracies.  NASMHPD has also held annual conferences that have engaged consumer and non-consumer mental health professionals in dialogue.  The organization has elicited consumer input and sponsored consumer-oriented research projects concerned with defining service outcomes (32).

Through increasing opportunities to meet with mental health policy administrators, program directors and other researchers, consumers entered a position gained earlier by the National Alliance for the Mentally Ill (NAMI), in guiding the national mental health agenda.

Support and Collaboration with the Research Community

Since the early 1980s psychiatry has become increasingly biomedicalized as environmental explanations for serious mental illness have gained disfavor (28).  As a result, many ex-patients felt even more alienated from psychiatric ideologies and limited psychopharmacological interventions.  At the same time, some mental health research questioned the assumption of unremitting chronic mental illness (21), while others embraced social treatments rather than conventional views emphasizing medication (34) or questioned the effects of antipsychotic medication (35, 36).  Mosher and Strauss (37, 38) were interested with the suffering person and recovery from debilitating episodes while others worked directly with consumers to study the value of self help (39).

Alliance with the Mental Health Law Project/ the Bazelon Center
Perhaps the most continuous and philosophically compatible relation between consumers/ survivors and professionals has been with  Protection and Advocacy lawyers at the Mental Health Law Project (renamed in 1993 The Bazelon Center for Mental Health Law) in Washington, D. C. This project was founded in 1972  to promote the rights of persons with psychiatric disabilities and to take on individual and class action suits for historic impact.   Its lawyers not only promoted the right to receive treatment, but—in  keeping with ex-patients’ demands—the right to refuse it (40).  In 1980, many of its lawyers with consumer advocates founded the National Association for Rights Protection and Advocacy.  It convenes yearly at meetings many consumer/survivor activists consider to be the most vital to a
ttend (41).

Relations with Mental Health Associations (MHA)

The national Mental Health Association has also advocated for the rights of psychiatric patients.  In the past, it sought accountability from providers and access to, rather than protection from, psychiatric services (42).  Some associations have developed productive relationships with major consumers groups and the MHA National Consumer Supporter Technical Assistance Center was one of five centers targeted for termination by the Bush Administration in 2002.

Comment
The breadth of relationships that consumer/ survivors have established with various mental health professionals has extended their ideologies and influence in a number of research, service and policy arenas.  They have gained both the ear of  researchers, agency directors, and clinicians and have received funding to support some of their initiatives.  It remains to be seen whether and how much these contacts and influences can help them oppose competing political pressures.

II.  EXTERNAL OBSTACLES TO DEVELOPING CONSUMER RUN SERVICES

Late in 1987 the CSP, out of interest in exploring the rehabilitative potential of self help, by and for primary consumers requested state applications for 3-year Mental Health Services Demonstration projects run by and for consumers (43).  The projects were intended to “implement and evaluate local services” and to demonstrate their effectiveness, which was very loosely defined.  The drafters of the proposal viewed the project as ambitious and “risky” with a cost of $3.5 million (43, p.7) , but hoped it would encourage state and  local mental health agencies to keep funding self help programs as an essential component of  their community support systems.

This section reports findings from two phases of study based on these projects. Phase One, conducted in 1993, concerns the period of federal CSP funding from 1988-1991 and ways in which external interferences compromised the quality of the projects and their evaluations.   Phase two, conducted in 1996, concerns the demonstration projects during the subsequent four years.

Phase One:  the 13 CSP Demonstration Services Research Projects, 1988- 1992
Seven of the thirteen funded projects proposed to develop drop in centers -- consumer-run programs that offered places where consumers could go to socialize, gain information and participate in advocacy or self-help activities.  Two intended to start businesses; two, a state consumer office; one, a clubhouse; another, a volunteer food distribution service for the homeless.

Methodology.
In 1992, I conducted a study for CSP examining the ways in which consumers were involved in evaluating their demonstration projects (30).  To learn  about these processes, I conducted extensive ethnographic (44 - 46) telephone interviews with 56 people.  These included 3 federal mental health officers and at least one each consumer, state officer and evaluator at every site; we also discussed the extent, nature and changes in consumer involvement on the projects.  I also relied on government and related documents and archival materials.

Findings.
After the projects began, and increasingly throughout, CSP increased its expectations for the evaluations (30, pp. 29-30) without increasing budgets to accomplish them. This compromised consumers’ involvements in evaluating the projects and the quality of the evaluations themselves.  It also limited the staff’s ability to successfully conduct both the project and evaluation, making it difficult to judge the effectiveness of the projects.

The changes were brought on by Congressional pressure on NIMH staff by lobbyists who demanded that NIMH justify its spending by requiring more rigorous evaluations.  CSP staff in turn pressured the projects to include strong outcome evaluations, preferably within a standardized protocol.  This change in expectations occurred despite the fact that the projects had not been funded as research demonstration grants, which traditionally demand stronger evaluations, but as demonstration services grants, where rigorous evaluations have been less important (47); indeed the very grant guidelines from NIMH considered the evaluations as secondary to demonstrating the ability to develop new services (48).

Difficulties resulting from changed evaluation expectations.  The new demands created difficulties in implementing and interpreting the evaluations.  Most of the projects had neither designed nor budgeted for a rigorous evaluation and had trouble securing evaluators for the new project on brief notice and limited funding.  This compromised the quality of both the programs and the evaluations, and delayed starting the evaluations.  It also resulted in losing the formative data that most evaluators considered more valuable and relevant than outcome evaluations at this stage of studying self help (31). Several project directors were forced to use program staff to help evaluators collect data, diverting them from working on the project.

The changed demands created several theoretical and methodological problems.  Using standard evaluations to assess outcomes seemed premature in projects still trying to determine meaningful outcomes.   It also did not make sense to evaluate the projects as if they were already established programs.  Such standardized approaches make it impossible to detect particular characteristics that distinguish developing programs from well established ones.  Several evaluators questioned using standard evaluations to compare widely varying projects.  Evaluators felt that comparing formative process evaluation data among projects would have been particularly valuable to learn how organizational and managerial difficulties were resolved and whether and how state program officers were productively involved after projects were funded. Evaluators also regretted not examining the project’s plans for continuity after CSP funding ended.

Suspicion Of Orchestrated Failure.
One evaluator observed how using standardized evaluations for nonstandard projects assured failure:  “…so long as demonstration program evaluations are conceived as scaled down versions of ‘real’ research efforts and predetermined client or member outcome measures are taken as indicators of success, they cannot be” (49).

The directors of the consumer projects were concerned that the evaluations would seem weak given their late start, inadequate budgeting, and the premature mandated standard evaluation format. They also feared that the weak evaluations that would likely result would make it difficult to secure continued future funding . They were right on both counts.  Passages from a report from the Inspector General’s Office (DHHS 1993) corroborated their fear: “...many respondents agree that, notwithstanding NIMH efforts to strengthen it, evaluation has been weak” (50, p.9).

This led to a premature perception of failure which diverted attention from the strengths of the projects.  One state officer commented that his state’s project,  “was not successful in terms of the goals identified at the beginning, but from the viewpoint of empowering people, there is no doubt it was successful;  I’ve never seen such success.”  Success was evident in the confidence that enabled participants to return to school, to gain significant employment, and to move on with their lives. The standardized evaluations imposed on the projects were simply unable to capture these accomplishments. If the criteria for rigorous evaluative designs had been requested from the start, the more seasoned researchers and project directors would have budgeted for them.  They suspected that the changes were imposed deliberately to ensure poor results and end future funding of consumer projects.  An outside evaluator observed, “It wasn’t set up to succeed” (31, p. 30).

The Source of Pressure for Rigorous Evaluations.  The CSP officials who pressured for more rigorous evaluations were not trained researchers and most likely did not recognize the implications of their demands.  It is unlikely that they, as champions of self help, would have tried to sabotage their own efforts.  Indeed, years later, they lauded the projects for having demonstrated “increased social supports, decreased use of inpatient care, and improved self confidence and decision making skills” (24, p.6).

The pressure on the projects did not come from within NIMH, but from powerful actors who were lobbying Congress.  CSP staff suggested that NAMI, with its powerful lobby and strict agenda on funding biomedical research (31), was agitating for rigor.  E. Fuller Torrey, a psychiatrist whose strict biomedical perspectives NAMI embraced, had also been lobbying against consumer projects that promoted social and experiential healing. After the demonstration projects ended, he wrote an angry letter to the director of  NIMH stating his intention to inform Congress and the public of the way NIMH had been wasting taxpayers’ money on such “fatuous” projects.

Phase II:  The Fate Of The Demonstration Projects After Managed Care
 In 1996, 4 years after the termination of the demonstration services projects, I investigated how they had fared since federal funding had ended.  Since this was a period of restructuring of behavioral health services under managed care (51, p.4), I also wanted to learn about consumers’ experiences with managed care and their expectations of how it might promote their interests.
 Method:  Working from my original contact list, I succeed in contacting roughly half of the original consumer leaders and state officers, and added new persons who had joined the projects or state offices. I interviewed thirty-three people: two CSP officers; six previous and three new state mental health officers; seven consumers involved with the original projects plus twelve additional consumers; one evaluator; and two non-consumer board members. Again I conducted open-ended phone interviews, this time exploring funding issues, continuity and changes in the projects, the natural course of earlier difficulties, and experiences and expectations about managed care.

Findings:  As it turned out, projects could have benefited from process evaluations.  Projects that had experienced organizational and managerial difficulties continued to struggle in Phase 2 and were more vulnerable to demise. Five projects lost funding and two more were on the brink of losing it. Three that lost funding reemerged with different missions, but they were still run by consumers; the other two had come under non-consumer control.  Because of  NIMH’s interference, most of the projects lacked the formative data needed to help them move beyond their organizational and managerial difficulties, evaluate the way in which state mental health authorities should be involved, and determine their future goals or funding plans.

Funding Difficulties.  Over half (7 out of 13) of the original projects could not secure funding to carry out their missions.  Of the remaining six, one other came under non-consumer control.  The other five have all struggled to remain economically viable.  Many consumer program directors felt they were expected to work longer and harder than those in the traditional service sectors without equivalent pay or benefits.  Many projects depended on volunteers to keep going, and part time staff were paid low wages so they could retain government disability benefits.  Long hours and low pay have forced even some of the most dedicated veterans to leave consumer positions.  Others have transferred to jobs in the traditional mental health sector so they could receive health care benefits. Economic threats to consumer projects have varied with political administration and climate, substantiating early concerns of activists (6) and raising questions about the further impact of managed care.

Organizational and Managerial Difficulties.   As novel entities, the original demonstration projects were run by consumer staff with varying levels of managerial experience, exposure to the ideology of the consumer movement, and experiences with the mental health system.  These shaped their particular understandings of the meaning of consumer empowerment and control.  Consumer directors with more hierarchical management styles (53, 54, 2) often pleased the local mental health officer, but annoyed consumers with strong democratic governance values (27).  The interpretation of consumer empowerment and control by others, such as board members and mental health officers, also led to philosophical and organizational conflicts.  In the best cases, these were worked out by the time of Phase II; in the worst cases, they compounded fiscal difficulties and impeded project success.  Boards who over-managed created ongoing conflict with the staff.  Other boards neglected legitimate complaints from users and tolerated managerial abuses.  Both proved fatal to two projects.  The insights offered by formative evaluation data might have deterred this outcome.

Involvement of  State Mental Health Officers. The application for the original demonstration grants clearly specified that “responsibility, control and decision-making” be carried out by consumers (55, p. 6), but that states must provide staff to implement proposed activities (55, p. 15).   How this was to be accomplished was left up to the state.  Differences in the capabilities and experiences of consumer directors created varying needs for support from the state mental health office, from only filtering funding to the project to offering considerable oversight.

Inexperienced consumers, inadequate state oversight and mentoring, and the consumer and CSP “hands off” policy were fatal to some projects. Overburdened state officials found it easier to assume control rather than spend the time to mentor project staff.   A "hands off" approach worked well with competent directors, but failed with novice staff who mismanaged finances, abused their power  (56, 57) or didn’t request needed help (58, p. 33).  One state mental health official admitted "…creating opportunities for people .......but not mentoring them (emphasis, mine) -- it's blown up in our face."   He noted that they would hire inexperienced people, but then not hold them accountable.  The lack of oversight led to lowered expectations of accountability for consumer projects, which unfairly tainted well managed consumer programs in subsequent competitions for funding.  Formative evaluation data could have informed these projects, and possibly saved them.

Despite these difficulties, by the year of this study, over 35 states directly funded at least one consumer project (52, p. 160). Perceptions of unique gains from consumer programs, as noted by one state officer, outweighed obstacles, stimulated in part by external political interference. Nevertheless, the political interference from outside opponents has continued.

The next article (Part II) in this two article series will examine the impact on consumer gains in the United States of the restructuring of behavioral health under managed care. It will also consider more fully the oppositional forces attempting to erode those gains as well as the implications of the New Freedom Commission on Mental Health for the future of consumer services. 


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