“Recovering” Consumers and a Broken Mental Health
System in the
Ongoing Challenges for Consumers / Survivors and the
New Freedom Commission on Mental Health
Part II (of a two-part series):
Impact of Managed Care and Continuing Challenges
Athena McLean, Ph.D.
Department of Sociology, Anthropology, and Social Work
home office: 517-333-3703
Ongoing Challenges for Consumers/ Survivors and the New Freedom Commission on Mental Health.
International Journal of Psychosocial Rehabilitation. 8, 58-70.
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.
This article is the second in a two-part series that examines multiple forces that have situated the psychiatric consumer movement today, either propelling it or trying to reverse its achievements in shaping the production of mental health services. 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
This is the
second of a two-article series that examines various forces that have situated
the psychiatric consumer movement today, supporting and helping to promote its
ideas or working to oppose it and to reverse its achievements in shaping the
direction of mental health services in the United States. Part I of this series examined how
professionals came to embrace consumer/ survivor perspectives as well as the a
PLANS WITH THE RESTRUCTURING OF PUBLIC BEHAVIORAL HEALTH SERVICES UNDER MANAGED
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 (1) and mental health costs (2), shrinking budgets and increasingly fragmented services (3), they began turning to private sector capitated payments (4, 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 (2). By now, most states have arrangements with managed behavioral care companies (5), 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, described in Part I of this two-part series, 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 bo
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 (6, 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 bo
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 (7, 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 (8). They prefer ‘technologies’ (6, 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 (9, pp. 61-74; 10, 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, (6, pp. 224, 228-229), their demand for "client compliance" (6, p. 227) contradicts consumer ideals of self-determination and empowerment (11, pp. 341). Ongoing social support to help the person recover, may be too ambitious and unprofitable for managed care to consider.
Losses Under Managed Care
As for-profit managers took control of financial expenditures in behavioral health care (12, p. 233), drastic cutbacks eliminated services to persons in deep need (13, p. 110). Consistent with the philosophical aspects I outlined above, managed care has limited services only to those deemed “medically necessary” (14) and excluded continuous residential and rehabilitation treatments (15). Persons not commi
A market driven model designed
for the private sector compromises government’s responsibility to a vulnerable
population in the public sector (16, p. 34). Given
their primary obligation to the bo
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 (18, p.7) and its placing its own priorities above the public good (20, p. 2625 ). Under managed care, fragmentation and existing inequities are only reconfigured (21, p. 85) or widened (22). In the public behavioral health sector, where restrictive practices have endangered the very lives of the indigent population, the outrage is apparent among providers (23), family consumer groups (24), and researchers (25) alike.
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 (26, p. 292; 27, pp. 883-5), providers’ requests for training in their perspectives (28) and entire service delivery plans based on their idea of recovery.
Two: Working the Managed Care System to Promote
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 (15). 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.
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 (33, pp. 94-5). They also established a Consumer Satisfaction Team (34) 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.
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” (35; 36). 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” (36). The recent Consumer Issues Subcommi
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-Californi
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 (38) after funding had been allocated and approved (39). 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” (40) -- a euphemism
for “forced treatment” through involuntary outpatient commitment. He
specifically objects to funding the
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 (42,
pp. 48, 61 She argues that governments should stop funding them --
something that can be “reversed overnight” (42, p. 231; 43) - 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.
NAMI’s Public Policy Director, also lobbied against
funding the consumer centers. According to consumer advocacy organization
Support Coalition International, (SCI) (44),
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 (46). These moneys fund NAMI’s Campaign to End Discrimination (47). (See below.)
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) (47). 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
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” (51, p. 337) or risk inpatient commitment. In 1997,
NAMI founded the
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 (52) claiming 1000 homicides are commi
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
The intolerance this group
showed for opposing views can be seen in Torrey and Satel. as well.
In 1991 Torrey wrote an angry le
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” (55). 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 (42, pp. 46-7).
Satel considers the idea of social determination of illness as “one of the most pernicious themes in PC medicine” (42, 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.
DISCUSSION: IMPLICATIONS OF THE FREEDOM COMMISSION REPORT IN LIGHT OF OPPOSING POLITICAL AND IDEOLOGICAL VIEWS
The New Freedom Commission On Mental Health And The
Call For Recovery in Transforming Mental Health Systems
In its Interim Report to the President, the Freedom Commission on Mental Health states, “the mental health delivery system is fragmented and in disarray… (56, Executive Summary, p. 4). The final report (
Variation in Etiology, Treatment and Recovery. The Surgeon General’s 1999 Report on Mental Health (36) 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…” (36, 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 (56, 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 (56). At the same time, the report also includes potentially beneficial (57) 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 (58), was elaborated by others (59, 60, 61, 62), and was
developed by researchers (30, 31). The
possibility of recovery was revisited by researchers whose longitudinal studies
challenged the belief that serious mental disorders were inevitability chronic
(63, 64). While recovery for survivors like psychiatrist Daniel Fisher
(41) means a final cure, for most persons, it means a satisfying, socially
productive life -- with or without symptoms (65, 30). Restoration of
functioning or terminating psychotropic medication are
not needed for recovery (60). It can be achieved without professional
help (30) as it differs from professionally directed rehabilitation (36); the
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 (62).
Others find the loss of self-esteem it imposed so injurious that they totally
reject any kind of force (58). Still others are convinced that forced
treatment saved their life (42, p. 20). Some family members demand forced
treatment, others find it objectionable (67) while
others blame it for having lost their relative’s trust. Not all NAMI
members support its official policies or methods (68). They are split,
e.g., on the issue of forced treatment, as in California where five former presidents
of NAMI-California wrote a public le
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 ba
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 ide
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 a
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