Everyday Ethics. Paul Brodwin
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Deinstitutionalization quickly and dramatically lowered the total number of psychiatric inpatients from the high point of 559,000 in 1955 to 193,000 in 1978, 110,00 in 1985, and 80,000 in 2002.2 Over the same period, the average inpatient stay also shortened considerably. Before 1965, people would often spend years, if not decades, in institutions. In 2006, the average length of stay in U.S. psychiatric hospitals was seven days (U.S. Dept. of Health and Human Services 2008), and that figure has remained constant ever since. However, a snapshot of before and after statistics hides the long-term effects of deinstitutionalization and hence the background of practice in today’s community psychiatry. By the late 1960s, the rising cohort of young people with severe psychiatric disorders—which usually begin in people’s late teens to early thirties—entered into a new array of treatment options. For the first time in nearly a century, people now experienced the onset of severe disorder while remaining outside of long-term institutional control. These young adults established a new pattern in their use of psychiatric services that continues until today: a “revolving door” of inpatient stays, stabilization via medication, discharge to the community, resumption of isolated and disorganized lives, and subsequent rehospitalization. Many members of this group live in marginal, often dangerous surroundings, and they depend on an uncoordinated and underfunded collection of outpatient medical and social services. The severity of the illness, the fragmentation of services, and the realities of urban poverty (including easy access to alcohol and street drugs) make it enormously difficult for people to recover fully or to establish independent lives outside the welfare, medical, and criminal justice systems.3
What these young adults faced in the 1970s fundamentally drove the development of new forms of public mental health services. For the first half of the twentieth century, housing, food, daily occupations, medical and psychiatric treatment, and even social identity came bundled together for patients, who lived in self-contained state hospitals with populations as large as 11,000. As states scaled back these custodial institutions and shifted the costs to federal programs, the de facto responsibility for ex-patients fell onto a fragmented network of psychiatrists, police, judges, and social workers. In the current landscape, many different authorities target the needs of people with severe mental illness, but in an uncoordinated fashion. Separate agencies do not communicate well, and each has its own discrete mandate (housing, medications, employment training, addiction treatment, access to public subsidies, social rehabilitation, and criminal justice). They have little knowledge of each others’ rules and operating procedures, and they enforce different expectations and eligibility criteria on clients. Although state and county mental hospitals continue to exist, they now offer short-term stabilization or serve as the last resort for the most treatment-resistant and difficult-to-place individuals. In stark contrast to the earlier era of total institutions, people with severe mental illness are scattered throughout society, and no single organization or profession accepts responsibility for their lives (Mechanic 1989, Grob 1994).
The failures of deinstitutionalization became clear by the mid-1970s. Broad public dismay was fueled by media reports about the homeless mentally ill and what was widely labeled the “dumping” of ex-patients into dilapidated single-room occupancy hotels. Expert opinion in psychiatry and health policy was just as scathing. A new consensus arose that “the rhetoric of deinstitutionalization seems to mask a brutal political and economic reality—the general abandonment of mentally disabled people” (Rose 1979: 440). In earlier decades, professional discourse had celebrated community care as a therapeutic revolution and an end to the dark ages of institutional confinement. During the 1970s, this discourse evaporated almost without a trace. Psychiatrists and social scientists instead characterized deinstitutionalization as programmatic chaos, a disaster, and a continual failure in which bureaucratic needs trumped patient care (the terms used by Scherl and Macht 1979, Talbott 1979, Brown 1985 and Talbott 1984).
The failure had many causes. Policy makers justified deinstitutionalization in undefined or generic terms—community, reintegration, and rehabilitation—that inevitably got used in contradictory ways. The terms gave the appearance of a progressive, coherent system that bore no resemblance to the reality on the ground. The forces arrayed in favor of depopulating state hospitals were unstoppable, but they lacked an overarching blueprint. The ultimate fragmentation and substandard care were thus the unintended consequences of a largely unplanned process (see Bachrach 1990, Mechanic 1989). In particular, reformers overlooked how housing, income support, and social connections affect the well-being of people with disabling symptoms. The stepwise process by which the state abandoned people with serious mental illness thus produced an entirely new cluster of clinical needs and social dilemmas.
For example, ex-patients and younger people who had never been hospitalized started to receive monthly federal subsidies, and they became a lucrative commodity for entrepreneurs operating nursing homes, group homes, board-and-care facilities, and single-room occupancy hotels. The economics of this business are simple: the less money spent per capita on tenants, the higher the profits. Consequently, people with serious mental illness began to spend part of their lives ghettoized in custodial settings that were smaller but just as untherapeutic as the old state hospitals. A similar logic operated in the private nonprofit agencies that specialized in community psychiatric services. Such agencies captured more federal reimbursements if they treated more individuals, and too often the result was higher caseloads, the hiring of under-qualified providers, and a declining quality of care (Mollica 1983). Because of economic contingencies, the isolation and neglect that characterized the early twentieth century asylum reemerged 70 years later as fundamental aspects of public sector mental health.
COMMUNITY SUPPORT PROGRAMS: ASSEMBLING THE NEW NORM
The undeniable neglect of people with severe mental illness and the reversion to custodial care led to a shift in the policy landscape of the late 1970s. The Community Support Program (CSP) was the major federal response. It rejected the naïve assumption that discharging hospital patients would naturally lead to “community integration” and that facilities like board-and-care homes actually rehabilitate their residents. The program instead began with a cold appraisal of the results of deinstitutionalization (Turner and TenHoor 1978). People with severe mental illness faced enormous obstacles in getting services from general hospitals, social welfare agencies, legal clinics, public housing bureaus, and employment training centers. These institutions simply had no experience with the mentally ill and no specific mandate to serve them. Their staff tried to avoid serving people with the most disabling and chronic symptoms. Federal programs were evaluated on the basis of their efficiency—that is, how cheaply and quickly they could find jobs and independent housing for their clients. As a result, providers preferred to cherry-pick the high-functioning individuals, and they left those with severe disabilities to fend for themselves (see Tessler and Goldman 1982).
The CSP was an ambitious, top-down effort at systemic reform aimed precisely at such problems. It grew out of a series of working conferences at the National Institute of Mental Health, held from 1975 to 1977, that conceptualized the ideal “community support system” needed by mentally disabled adults (see Turner and TenHoor 1978). Participants debated which elements of the current system to keep, the base-line responsibility of the government for individual welfare, and the legitimacy of demands that the mentally ill be productive and independent. Without reaching consensus on any of these issues, the assembled experts nonetheless identified 10 essential functions for community services (Turner 1977):
1 Identification of and outreach to mentally disabled adults, whether in hospitals or the community
2 Assistance in applying for public entitlements
3 Crisis stabilization services in the least restrictive setting possible
4 Psychosocial rehabilitation, including evaluation of strengths and weaknesses, in vivo training in community living skills, and improving employability
5 Supportive