“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
Athena McLean, Ph.D.
Central Michigan University
Department of Sociology, Anthropology, and Social Work
Mount Pleasant, MI 48859 USA
home office: 517-333-3703
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.
International Journal of Psychosocial Rehabilitation. 8, 47-68
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.
Since its antipsychiatry 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 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. It describes how professionals came to embrace consumer/survivor perspectives, actions of opposing forces, and losses and gains enabled by managed care. It also examines 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.
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 article 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. It pulls 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. After briefly discussing the development of the consumer movement and the notions of recovery and community support, I first 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 Commission’s recommendations. Second, l examine two phases in the development of 13 consumer run demonstration projects and political interference from the same oppositional forces that are at play again today. Third, I discuss service restructuring under managed care and both the losses and consumer gains it ironically enabled. I fourth identify re-emergent ideological, political and economic forces behind recent efforts to erode consumer gains. In light of ongoing ideological and political battles, and with recent consumer gains countered by coercive treatment models and laws, I conclude by discussing the implications of the Freedom Commission report for the continuing social production of mental health services.
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.
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 attention 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.
The Community Support Program
I. RELATIONSHIPS OF CONSUMERS/ SURVIVORS WITH GOVERNMENT OFFICIALS AND MENTAL HEALTH PROFESSIONALS
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 attend (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.
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.
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.
II. EXTERNAL OBSTACLES TO DEVELOPING CONSUMER RUN SERVICES
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.
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.
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.
Restructuring Public Behavioral Health Services Under Managed Care.
III. RESTRUCTURING PUBLIC SECTOR BEHAVIORAL HEALTH SERVICES UNDER MANAGED CARE: EMERGENT CONSUMER-DRIVEN PLANS
Since 1965, Medicaid has been a joint program between the federal and state governments to provide fee-for-service health care to the indigent. As states faced rising Medicaid (59 and mental health costs (60), shrinking budgets and increasingly fragmented services (61), they began turning to private sector capitated payments (62, p. 17) and managed care models to contain Medicaid expenditures for their behavioral health services. By the mid-1990s, as they were shifting from fee-for-service, many privatized their services by turning to a for-profit managed behavioral care organization. Instead of reimbursing providers directly, the states contract out services to the private managed care organization that arranges service coverage. To use Medicaid in this innovative way, states needed to obtain Medicaid waivers in order not to violate the federal government’s requirement for fee-for-service arrangements (60). By now, most states have arrangements with managed behavioral care companies (51), although some have chosen either at the state or local level to manage the care themselves through a non-profit managed care vehicle.
The Lesser of Two Evils?: Consumer Hopes for Managed Care. For many consumers from Phase Two of my study, the potential limitations of a managed care approach paled when contrasted with the problems of a mental health system they viewed as invasive, coercive and intransigent. Under managed care, they anticipated more consumer choice and provider accountability, and hoped this would shift the power balance from provider to consumer. Also, as control shifts from providers to those interested in the bottom line, consumers expected reforms might lead to reductions in involuntary commitments and less intrusive services that one activist called, "less expensive and less offensive to us." The biggest advantage many saw to managed care, however, was its absence of the "ideological baggage" of the traditional health system.
Because the potential for mental health reform is financially driven, consumers saw in managed care restructuring an opportunity to radically revise the system through their own input (65, p. 210). Many believed that the shift in power away from providers would force the system to change its standard practices. They felt that managed care provided a means of dismantling and radically transforming a mental health system that, despite their years of advocacy, has been recalcitrant to change. With the bottom line -- a different evil -- now dictating delivery of service, consumers overall felt cautious, but more hopeful than they had in the past.
Contrasts Between Managed Care and Consumer Philosophies. Nonetheless, there are fundamental differences between managed care and consumer ideologies and approaches. The emphasis of consumer organizations on ongoing mutual support as central to recovery contrasts sharply with for-profit managed care organizations’ emphasis on measurable symptom decline (63, p. 14). Managed care organizations favor time-limited standardized models that target concrete behavioral symptoms rather than ongoing community services or programs that address global subjective and interpersonal needs (64). They prefer ‘technologies’ (65, p. 228), which like a pill, help manage concrete behavioral symptoms as "natural" objects, alienated from their social and historical circumstances. Like reductive biomedical approaches, they try to eliminate the sign (the symptom or behavior) rather than improving the subjective experience associated with that sign or the social conditions productive of it (66, pp. 61-74; 67, p. 75). These technologies are consistent with the alienated and discrete service unit approach of managed care. While some technologies engage consumers in behavioral "self-change" assignments under the directions of a therapist, (65, pp. 224, 228-229), their demand for "client compliance" (65, p. 227) contradicts consumer ideals of self-determination and empowerment (68, pp. 341). Ongoing social support to help the person recover, may be too ambitious and unprofitable for managed care to consider.
Consumer Losses Under Managed Care
As for-profit managers took control of financial expenditures in behavioral health care (33, p. 233), drastic cutbacks eliminated services to persons in deep need (113, p. 110). Consistent with the philosophical aspects I outlined above, managed care has limited services only to those deemed “medically necessary” (114) and excluded continuous residential and rehabilitation treatments (77). Persons not committed involuntarily were denied hospitalization, thus enabling access only by force, not choice. Even more alarming, “noncompliant” patients were disenrolled (69, p. 35) and others with heavy service needs were pressured to disenroll by being denied services (52, p. 163). Most plans also failed to meaningfully involve consumers and their families in planning, implementation and oversight (70, p. 18).
A market driven model designed for the private sector compromises government’s responsibility to a vulnerable population in the public sector (69, p. 34). Given their primary obligation to the bottom line, for-profit managed care systems “lack a social commitment” (70, p. 9). Their cost-savings techniques of gate-keeping and utilization review were developed for a private sector where less than 10% of the populations use mental health services. Four to five times as many persons in the public sector than the private sector have psychiatric diagnoses and their problems are more severe (69, p. 165). Applying a model developed to restrict services to the less needy on a seriously needy indigent population is misguided (52, pp.164-5) and raises ethical questions (113, 115).
Backlash and the Turn To Consumerism. A backlash has developed against managed health care out of growing outrage of its failure to deliver on its promises (70, p.7) and its placing its own priorities above the public good (71, p. 2625 ). Under managed care, fragmentation and existing inequities are only reconfigured (116, p. 85) or widened (112). In the public behavioral health sector, where restrictive practices have endangered the very lives of the indigent population, the outrage is apparent among providers (117), family consumer groups (118), and researchers (15) alike.
Consumer Gains: Three Case Studies Of Model Service Plans
Consumers have benefited from the excesses of managed care and the backlash against it. This has led to their heightened involvement in planning and oversight of state behavioral health services (72, p. 292; 73, pp. 883-5), providers’ requests for training in their perspectives (74), and entire service delivery plans based on their idea of recovery.
Case One: Georgia’s Certified Peer Specialists: Rehabilitation Counselors And System Change Agents. Since 1999 the Georgia Division of Mental Health under a managed care reconfiguration has promoted peer support and recovery in its public behavioral health care provisions (75). It developed the certified consumer peer specialist (CPS) role as a core rehabilitation service billable under Medicaid. Georgia placed muscle behind this approach by requiring this service as a prerequisite for reimbursing other community treatments. Peer specialists serve as deliberate change agents to help alter how clinicians and administrators think about mental illness and recovery and help them “’buy in’ to a consumer-centric philosophy” (75).
Case Two: Working the Managed Care System to Promote Recovery in Colorado. In Colorado in 1996 the director of a new partnership between a managed behavioral health care company and eight community mental health centers hoped to integrate the principles of recovery (16) and self help into routine care. She chose psychiatric rehabilitation (17) as the tool (76, pp. 25-6) and brought in a consumer leader to implement these principles. By 2001, eight drop in centers and over 70 self help groups were in service. This was accomplished by drastically cutting costly services -- like outpatient commitment and mandatory partial hospitalization, that consumers deemed infantilizing (76), and using the saved dollars to implement changes.
The shift to a recovery-based system of care faced objections from providers. By providing training in psychiatric rehabilitation that reinforced the principles of self help and recovery, many providers became open to the approach. After seeing their clients improve clinically while gaining confidence, many came to adopt the approach. Staff who refused to accept the new philosophy and treatment approach -- even at upper levels -- were terminated.
Ironically the capitation of services (where a set number of dollars follow a client, independent of particular services delivered) in a managed care model provided incentives to adopt innovative approaches (77). Prior to capitation, centers promoted services that helped maintain their financial base. Capitation and reinvestment of savings from dropped services gave them the freedom to shift dollars to support the recovery-based system. However, even more dollars would have been available with non-profits.
Case Three: A Philadelphia Self-Managed Care Plan. In 1997 Philadelphia County created its own non-profit managed care organization, Community Behavioral Health (CBH), which contracted directly with providers. Sensitive to the vicissitudes of political change that could lead to shifts in available services, the new behavioral health system was designed to promote stability and innovation (78, p. 87) to survive shifts in political administrations. The program was guided by an unwavering “people-first” philosophy and vision of managed care to promote access to services in the least restrictive setting. The program encourages consumer choice in services, including consumer-run programs (78, p.88) and accountability by providers and administrators to those served (78, p.90). The service system emphasizes a person’s recovery through full participation in treatment and rehabilitation (78, p. 103).
As the new managed care organization expanded from a team of six to 200 employees, the original team tried to safeguard their vision and promote a sense of community and shared purpose (78, pp. 94-5). They also established a Consumer Satisfaction Team (79) consisting of pairs of consumers and family members to oversee service provision. The team made unannounced visits to treatment sites, conducted over 10,000 interviews with recipients of services. This feedback was used to redesign programs according to stated preferences from consumers.
This new system design, devoted to serving consumers themselves, grew out of fervent beliefs by progressive mental health commissioner and strong consumer and family advocates for a consumer-driven system of integrated care. The managed care approach enabled coordination and continuity of care, albeit in a constrained budget that demanded some difficult choices. With information about consumer wants directing the program, and satisfaction and accountability built into a recovery-oriented system, this design provided a convincing model for programs elsewhere.
IV. THREATS TO CONSUMER GAINS
Such dramatic restructuring of behavioral health systems, sensitive to consumer preferences and built on a philosophy of recovery and self-determination, marked a coup for consumers in the mental health system. By December 1999 the Surgeon General’s report on mental health identified consumers as “the critical stakeholders and valued resources in the policy process” (19; 4). Through the continued labors of consumer/ survivor activists and their advocates, the ideals of recovery, self-reliance and empowerment -- as opposed to chronicity, dependence and disenfranchisement -- appeared accessible. Consumers have been partnering productively with mental health professionals and researchers for two decades to promote their own understandings about the kinds of approaches and services they find most beneficial. The Surgeon General sanctioned the “new recovery approach” as being “supported by evidence on rehabilitation and treatment as well as by the personal experiences of consumers” (4). The recent Consumer Issues Subcommittee report of President Bush’s New Freedom Commission on Mental Health also calls for a National Recovery Initiative for a “recovery-based continuum of community care” (80).
In the midst of these successes however well-positioned forces have been acting to limit the consumer voice, oppose their civil rights, and censor or ridicule their ideas and those of their supporters. These forces are apparent in the activities of psychiatrist E. Fuller Torrey -- an earlier opponent of the original demonstration projects, upcoming conservative psychiatrist Sally Satel, and some extremist leaders at the National Alliance for the Mentally Ill and the NAMI-California.
This section draws on considerable material from consumer websites and related links because they are a primary means for communicating and urging action among consumers and they provide an active and continuously updated source of information.
Efforts to Terminate Funding National Consumer Technical Assistance Centers that provide information on self-help, advocacy, services and policies and promote consumer’s relationships with professionals. This surprise announcement came shortly before the funding date (81) after funding had been allocated and approved (82). Although Congress ultimately funded the centers, their future remain insecure.
Pressure to close the centers came from three sources -- E. Fuller Torrey, Sally Satel, and individuals in NAMI, bolstered by their pharmaceutical supporters. Torrey has been a long-time critic of the Center for Mental Health Services for supporting “anti psychiatric groups and those opposed to assisted treatment” (83) -- a euphemism for “forced treatment” through involuntary outpatient commitment. He specifically objects to funding the National Empowerment Center in Lawrence, MA for supporting “the salaries of anti-psychiatry radicals” who reject the medical model of mental illness and hold out “a false hope” of recovery without medications (18).
Satel, a psychiatrist and fellow at the conservative corporate think tank, the American Enterprise Institute, sees these consumer information centers as promoting the work of anti-psychiatry consumer-survivor groups (84, pp. 48, 61). She argues that governments should stop funding them -- something that can be “reversed overnight” (84, p. 231; 85) -- and has placed herself in positions to make this happen. As a chief mental health policy advisor to the Bush administration, she now sits on the influential CMHS National Advisory Council, which holds decision making power over grants. While admitting that funding to consumer centers is modest, she worries that “it is leveraged fairly effectively” (85) and wants to stop its influence.
Andrew Sperling, NAMI’s Public Policy Director, also lobbied against funding the consumer centers. According to consumer advocacy organization Support Coalition International, (SCI) (86), Sterling admitted to “inadvertently” issuing a statement on the organization’s public website that he was lobbying the Bush administration to “terminate federal funding” for certain “psychiatric survivor organizations“ (87). Groups that were viewed as actively challenging the “scientific basis for mental illness and its treatment” were selected. (Interestingly, The National Consumer Supporter Technical Assistance Center at NAMI was among them.) In a letter to the SCI, Sperling clarified that the policy did not come from the NAMI board, but “reflects long-standing concern regarding the activities of several “consumer/ survivor” organizations that are funded by the federal CMHS to serve as National Technical Assistance Centers” (86).
The statement was released during a four month interim period between executive directors when Eli Lilly executive Jerry Radke was placed in charge. Radke had also been on loan from Lilly earlier, as part of NAMI’s “strategic planning,” according to Laurie Flynn, NAMI’s outgoing executive director. Eli Lilly paid his salary and also contributed $2.87 million to the organization between 1996 and 1999 - about ¼ of the income it was receiving from the pharmaceutical industry (88). These moneys fund NAMI’s Campaign to End Discrimination (89). (See below.)
Pushing for Forced Treatment (PACT and Involuntary Outpatient Commitment)
Consumers assert that the $11+ million dollars from this Campaign to End Discrimination funded NAMI’s Program of Assertive Community Treatment (PACT) (89). PACT is an outreach program that provides 24 hours/ day, 7 days/ week mobile treatment and support in the community. When PACT was first introduced in Wisconsin over twenty years ago, some consumers and their families appreciated the caring oversight of familiar staff (90); other consumers were so oppressed by it that their only refuge was to cross the state border to “escape.” For many consumers today, it conjures up “a kind of mental health police force” (8). Members of a treatment team visit consumers in their home to secure their “medication compliance” by injection or watching them swallow their pills (89). The potential for abuse in shifting from “aggressive” to “coercive” treatment has concerned some mental health professionals (91), as do the profits to pharmaceutical companies that promote coercive models.
Moreover, as a treatment modality, PACT is enforceable by outpatient commitment laws. These laws order court mandated treatment requiring a person “to take the medication needed to control the symptoms” (92, p. 337) or risk inpatient commitment. In 1997, NAMI founded the Treatment Advocacy Center to promote coercive treatment and involuntary commitment; it has succeeded in implementing outpatient commitment laws in at least forty states. Under E. Fuller Torrey, its president, has won many tough battles, most recently in California.
Censoring or Ridiculing Opposing Ideas
Torrey and his advocacy group have gained success by sensationalizing and exaggerating the incidence of violence that occurs among unmedicated persons with psychiatric symptoms. Torrey has publicly disseminated an unsubstantiated statistic from a Justice Department study (93) claiming 1000 homicides are committed yearly by mentally ill people. He used the statistic again in a special issue on “Mental Illness and the Law” of The Journal of the NAMI California (94). Dan Weisburd, former editor and publisher of The Journal, investigated and questioned Torrey’s statistic in his “Publisher’s Note,” adding that Torrey admitted it was a “guesstimate” (95). Torrey has been quoted in The New York Times, the Wall Street Journal, The Washington Post, Sixty Minutes, and in the Congressional Record, all of which depended on his expertise. Weisburd objected to Torrey’s falsely raising public fears ostensibly for political reasons.
Members of the NAMI California Board of Directors, some of whom were close allies of Torrey, were outraged at Weisburd’s comments and paid to have pages of The Journal containing his Publisher’s Note glued shut before reaching the readership. They then terminated The Journal, ending its eleven years of operation. Weisburd was censored because he threatened their ultimately successful political fear campaign to enact an outpatient commitment law in California.
The intolerance this group showed for opposing views can be seen in Torrey and Satel. as well. In 1991 Torrey wrote an angry letter to Alan Lesher, the Acting Director of NIMH, denigrating it for “fuzzy thinking” and its “absurd” support of consumer projects that questioned the medical model. More recently, he excoriated CMHS as an agency that “pursues its hippie philosophy and obstructs reform efforts” (83) adding, “among most professionals, it is ridiculed … and widely regarded as more dysfunctional than the individuals it is supposed to serve.”
Satel, on her first day on the CMHS Advisory Council, complained that too much time had been devoted to listening to the views of a consumer -- “ ‘Patient’ is the term I prefer. Maybe that’s what the Council wants, but it’s not what I want” (96). She minimized the value of the person’s comments as a user of psychiatric services. Satel then changed the label of “consumer” to “patient,” reaffirming both disease and dependence, and challenging the power reversals consumers had worked for over decades of advocacy (84, pp. 46-7).
Satel considers the idea of social determination of illness as “one of the most pernicious themes in PC medicine” (84, p. 14), claiming preference instead for “personal responsibility and self-care.” This is ironic given her hostility to a consumer movement which is based on these very principles. Satel confines personal responsibility, however, to a person’s accepting the biomedical model of disease and complying with the doctor’s orders. Her notion does not address the complex social, political, and economic environment to in which power inequalities and their denial contribute to the production of illness, nor allows for critical self-reflection and action to address social determinants.
The New Freedom Commission On Mental Health And The Call For Recovery in Transforming Mental Health Systems
DISCUSSION: IMPLICATIONS OF THE FREEDOM COMMISSION REPORT IN LIGHT OF OPPOSING POLITICAL AND IDEOLOGICAL VIEWS
In its Interim Report to the President, the Freedom Commission on Mental Health states, “the mental health delivery system is fragmented and in disarray… (1, Executive Summary, p. 4). The final report (July 22, 2003) recommends, “fundamentally transforming how mental health care is delivered in America…” (1, Executive Summary, p. 5). Based on testimony from consumers, mental health professionals and family members, the Commission concludes that “recovery from mental illness is now a real possibility” and recommends switching from a system which “simply manages symptoms and accepts long-term disability” (1, Cover Letter) to a “consumer-centered, recovery-oriented” one (1, Executive Summary, p. 11). The Commission declares that consumers be significantly involved in everything from planning to choosing providers to delivering services (1, Executive Summary, p. 13). Further, following the 1999 Olmstead v. L.C. decision of the United States Supreme Court, the report encourages that services be made available in “communities rather than in institutions” (1, Executive Summary, p. 12).
Variation in Etiology, Treatment and Recovery. The Surgeon General’s 1999 Report on Mental Health (4) identifies the immensely varied etiologies of behavioral disturbance such that “one single factor in isolation -- biological, psychological, or social -- weighs heavily or hardly at all…” (4, Chapter 2). Similarly, the Commission report acknowledges the great variation that occurs in the most promising blends of services and supports for different persons over the life course (1, Executive Summary). Thus the Commission did not provide any singular “model plan,” like the Assertive Community Treatment (ACT) which NAMI considers “the answer” for everyone, but individualized plans built on identified needs and wants of each person. ACT is just one of many possible evidence-based practices (EBP) currently available (1). At the same time, the report also includes potentially beneficial (104) emerging best practices, which, like the consumer demonstration projects, did not have the advantage of adequate research study.
Like etiology and treatment, recovery and variation in consumers’ experiences of it gained high profile in the Surgeon General and Commission reports. The concept of recovery originated with ex-patients (2), was elaborated by others (101, 11, 102, 103), and was developed by researchers (16, 17). The possibility of recovery was revisited by researchers whose longitudinal studies challenged the belief that serious mental disorders were inevitability chronic (97, 98). While recovery for survivors like psychiatrist Daniel Fisher (18) means a final cure, for most persons, it means a satisfying, socially productive life -- with or without symptoms (99, 16). Restoration of functioning or terminating psychotropic medication are not needed for recovery (11). It can be achieved without professional help (16) as it differs from professionally directed rehabilitation (4); the latter, though may help to promote it. And since recovery restores a person’s dignity and self-worth, it appeals to consumers and families advocates alike (100).
Contradictory Forces: Forced Treatment or Recovery?
Where a person lies on the protection (forced treatment)/ freedom (voluntary recovery) continuum depends in large part on that person’s experiences with both mental illness and the mental health system. Some consumers retain the feeling of indignity from forced treatment even if they acknowledge that it benefited them (103). Others find the loss of self-esteem it imposed so injurious that they totally reject any kind of force (2). Still others are convinced that forced treatment saved their life (84, p. 71). Some family members demand forced treatment, others find it objectionable (106), while others blame it for having lost their relative’s trust. Not all NAMI members support its official policies or methods (107). They are split, e.g., on the issue of forced treatment, as in California where five former presidents of NAMI-California wrote a public letter urging members to not join extremists who were using violence to push for forced treatment (105). The danger of extremists like Torrey, Satel, and some NAMI leaders is that they use the public’s fear of a misrepresented violence, and present their own views as those of a unified membership and the most advanced state of knowledge, when they are neither. The Commission in fact recommends an educational campaign to challenge the incorrect perception that mentally ill persons are more violent than the general population (1,
Consumer Issues Subcommittee Report).
The Freedom Commission holds out hope that consumers can rebuild the mental health system so it can work for them; this far exceeds expectations of those I interviewed in my studies. In the coming months Charles Currie, a member of the Commission and the Administrator of SAMHSA, will be reviewing the final Commission report and offering an action plan. It is here where political pressures will be applied. The progressive minded Commissioners who drafted the report will face the test of reality as concrete measures to enact it are developed. Contradictory forces have never been greater. Although consumers have gained ideological ground with their recovery vision, opposing forces have made strides in gaining coercive treatment programs and outpatient commitment laws. These same forces tried to end federal funding of major consumer centers, censored corrective reporting that threatened their agenda, and earlier interfered with the demonstration projects. These forces are backed by drug and corporate money, have well-funded lobbyists and gain easy access to the President.
In contrast, consumer organizations have always been economically disadvantaged. Without the ability to draw dues from a poor consumer base and the lack of (and disinterest in) support from drug companies, they must depend on government funding and remain vulnerable to political whim, as was seen with the five technical assistance centers. Still, their leaders have developed relationships with government and mental health professionals and have convinced them of the fundamental value of the recovery perspective.
But the battle is not over. The Commission’s report -- and recovery vision -- will not appeal to everyone. Many, however, like the current NAMI President, support a recovery-oriented approach (108). As a continuous process, recovery will not be achieved through the time-limited interventions that managed care organizations find profitable. It is also not likely to be achieved through the timely taking of medication in the absence of a meaningful and productive life. It is even less likely to be gained through forcing treatment on someone. Recovery is a holistic, if elusive, concept that incorporates multiple physical, social, economic, political, and even spiritual dimensions (109) that may vary from person to person and over time. To the extent that recovery might impede the interests of some groups (e.g., managed care organizations, the pharmacological industry, psychiatry even families) they are likely to challenge it as a principle for restructuring mental health services. Already Marcia Goin, president of the American Psychiatric Association, reserves comment on it, citing instead a biomedically based model (110). Torrey called it harmful for sending a “cruel message” to very impaired people (111); still he asserts that as a distant goal, it is “laudable.” And Satel -- whose appointment to the CMHS Advisory Council was approved by Currie -- will be in a position to pass judgment on action plans based on it.
The Commission’s report was crafted by some progressive individuals, including Dan Fisher, whose Technical Assistance center was one of five targeted for closure. Sally Satel’s power to pass judgment on recommendations Fisher helped construct may seem defeating. However, it may be that recovery, because of its focus on individual transformation, will be a palatable idea. For as Littlewood argues, America is a “psychologized society,” which interprets “social power as personal performance, argues for autonomy and self-scrutiny, for consumer choice and therapeutic transformation” (112, pp. 174-5). Thus as long as recovery is focused on transforming the self rather than the system, and as long as it does not directly threaten the biomedical/ pharmaceutical industries, it is likely to be viewed as innocuous, if not desirable. Recovery and the community support on which it depends may also seem compatible with the Bush Administration’s engagement of voluntary organizations. Indeed the psychiatric consumer self-help movement started precisely this way.
Thus recovery may be a timely idea around which both the left and right may rally. As a seemingly innocent, non-threatening concept, it may gain adequate political support despite some protests from Torrey, Satel and like-minded groups. Moreover, with outpatient commitment laws now in place in most states, any lingering concerns extremists may hold about recovery are likely to be attenuated. Still, recovery and self-help may be less innocent than they seem. By forcing people to examine their lives, their illnesses, and their possible etiologies, a recovery-based system will demand that they closely confront the societal conditions of their existence. To achieve genuine recovery, they will have to address not only their biological vulnerabilities, but also present and past sources of possible oppression -- social (e.g., sexual, gender, racial, familial), political, and economic -- and eventually confront these. Herein lies its transformative potential.
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