American Psychosis (19 page)

1978
: Perhaps the most critical factor contributing to inadequacies in community-based care is fragmentation and confusion of responsibility among the many Federal, State, and local agencies whose programs have an impact on services to the mentally disabled in the community. . . . No one agency at any level has been clearly charged with responsibility for comprehensive assessments of mental health and community support needs of the mentally disabled. . . . What has been particularly lacking, however, is clarity about who should provide the necessary leadership at Federal, State, or local levels to move things forward. The need for such leadership has been a recurring theme.

1978
: Today no agency of government—local, state, or federal—is taking comprehensive responsibility for providing psychiatric and social services for chronically mentally ill patients.

This lack of coordination was evident at the federal as well as the state level, because “no single agency has power or authority to coordinate policies and programs cutting across agency and cabinet lines.” Even for the CMHCs, it had been unclear whether authority over them ultimately resided at the NIMH level or within the DHEW regional offices. When there is no authority, there is also no responsibility, and no one can be blamed.
³²

It should be added that the failure of the federal CMHC program was just one of many failures of Great Society programs initiated by the Johnson administration. As Allen Matusow noted in
The Unraveling of America
, “the War on Poverty was destined to be one of the great failures of twentieth-century liberalism.” Other programs, such as the Mobilization for Youth, produced “little real change” in job training, while the Community Action Program was a fiasco. In the latter, for example, $20 million that went into it in New York City “disappeared without a trace.” This does not excuse the failure of CMHCs or their misuse of federal funds but merely illustrates that the poorly conceived CMHC program had plenty of federal company.
³³

* * *

Thus, in 1981, as the last remnants of the federal mental health centers program were being block-granted to the states, its failure was complete. The life of the program was reflected by Dr. Horace G. Whittington, director of psychiatry for the Denver Department of Health and Hospitals. Whittington had been one of the earliest enthusiasts for CMHCs and in 1969, in congressional testimony, had described them as “the most effective mental health service delivery system that has existed in the United States.” A decade later, bitterly disillusioned, Whittington described the CMHCs as follows:

I was already beginning to feel very much like a parent must feel who has a badly handicapped child. Should I smother it in its sleep, or should I help the poor little deformed bastard grow up to do the best it can in life? The deformed creature that has developed from the original community mental health center movement does not arouse much enthusiasm in any of us, I am sure, who had some more grandiose visions.

Dr. Donald Langsley, who had been the director of the highly regarded Sacramento County CMHC, similarly reflected: “Those of us who were once so enthusiastic now weep a little as we look backwards at what has happened to the promising child of the 1960s and early 1970s.”
³⁴

6
THE PERFECT STORM: 1981–1999

In 1981, as the last vestige of the federal community mental health centers (CMHCs) program was being block-granted to the states, ominous clouds hung over the future. A total of 432,633 beds in state psychiatric hospitals had been closed since 1955, entire hospitals having closed their doors. In the intervening years, the nation’s population had increased by 39%, from 165 to 230 million. Thus, there was an additional cohort of seriously mentally ill individuals, many of whom had been hospitalized briefly or not at all, living in the community. The true number of effectively deinstitutionalized individuals at that time was thus approximately 650,000; 30 years earlier they would have been hospitalized, but in 1981 they were living in the community and dependent on public mental health services for their psychiatric care.

Given the effectiveness of medications that had become available to treat serious psychiatric disorders starting in the 1950s, discharging hundreds of thousands of mentally ill individuals from state mental hospitals was both logical and humane. Thus, deinstitutionalization per se was not the mistake. The mistake, rather, was our failure to provide continuing treatment and rehabilitation for these individuals once they left the hospitals.

In 1981 a coordinated plan for aftercare did not exist. States had essentially been told that they were no longer responsible for mentally ill individuals once they had left the state hospital, a suggestion to which most states had readily acquiesced. Most federal CMHCs, which had been supposed to assume that responsibility, had not done so. What the federal government
had
provided, however, was federal dollars under Medicaid, Medicare, SSI, and SSDI for seriously mentally ill individuals living in the community; this provided enormous incentives for states to continue emptying the state hospitals, thereby shifting most of the costs for mentally ill individuals from states to the federal government. Available psychiatric medications made it possible to get patients well enough for discharge, but for most there were few plans for aftercare, without which many quickly relapsed. Civil rights lawyers further accelerated the outpouring of patients and then defended the patients’ rights to refuse further treatment once in the community. For the most massive movement of medical care in twentieth-century America, there was no master plan, no coordination, no corrective mechanism, no
authority, no one in charge. By aborting the development of the states’ own programs for aftercare, the federal government effectively decapitated the existing public mental health system, leaving a bureaucratic creature with neither eyes nor a brain.

THE GOOD NEWS AND THE “CONSUMER” MOVEMENT

Despite the lack of a coordinated aftercare system, some mentally ill individuals did reasonably well in the earlier years of deinstitutionalization. Such individuals tended to be those with less severe symptoms, an awareness of their own illness and need for medication, and an existing family support system. They were also more likely to have become sick at an older age, after they had completed their education and thus had acquired some vocational and interpersonal skills. Such individuals also did better if they were geographically fortunate enough to live near one of the few good rehabilitation programs. An example of such a program was the Eden Express, a restaurant in Hayward, California, run by Barbara Lawson, a restaurant owner who had a mentally disabled daughter. Using state rehabilitation funds, she created a 15-week training program for mentally disabled individuals to teach them food preparation, catering, cooking, waiting on tables, hosting, and cashiering. Between 1980 and 1990, Ms. Lawson trained 700 individuals, 80% of whom completed the training and 94% of whom then obtained employment.
¹

It was also during the 1980s and 1990s that the organization of mentally ill “consumers” took place. The use of the term “consumer” indicated that such mentally ill individuals no longer viewed themselves as passive recipients of mental health services but, rather, wished to play an active role in determining and selecting such services. They organized self-help groups under such names as Depressive and Manic-Depressive Association (DMDA), Recovery Inc., GROW, Schizophrenics Anonymous, On Our Own, and Psychosis Free. Such groups provided support, education, and a sense of hope as mentally ill individuals sought to put their lives together while living in the community.

It was at the time that some mentally ill individuals also began to be employed as ancillary mental health workers. One of the first programs began in Denver in 1986, when mentally ill individuals were enrolled in a 6-month training program to become consumer case management aides in mental health centers. Within 5 years, similar programs had been started in Texas, Massachusetts, and Washington, with such individuals being employed in a variety of roles. In San Mateo County in California, for example, consumer “peer counselors” were employed to assist other mentally ill individuals who were being moved from psychiatric hospitals to community living facilities and also to do AIDS education for mentally ill individuals. The employment of stable mentally ill individuals to help deliver mental health services has become much more widespread in recent years, as will be described in the following chapter.

TRANSINSTITUTIONALIZATION

The number of seriously mentally ill individuals who did reasonably well in the community during the 1980s and 1990s was a minority. The majority of lives were little different than they had had while hospitalized, and a significant number were considerably worse off. Many of these individuals had more severe psychiatric symptoms, often exacerbated by substance abuse problems, and had little or no family support. Many had also become sick at a younger age and thus had limited vocational and interpersonal skills. Most important, many of them had no awareness of their own illness or need to take medication. This condition, called anosognosia by neurologists, occurs when specific areas of the brain are damaged, as also occurs in Alzheimer’s disease and some individuals with strokes. Individuals with serious mental illnesses who are unaware of their own illness usually do not take medication voluntarily and thus have a high relapse rate when living in the community.

One group of mentally ill patients who were no better off in the 1980s than they had been in the 1960s were elderly mentally ill individuals who were transferred directly from state mental hospitals to nursing homes. Medicare and Medicaid had come into existence in 1965, just as the exodus of patients from state hospitals was increasing. Nursing homes had traditionally been used for demented and physically disabled elderly patients who required 24-hour care; such homes were called skilled nursing facilities (SNFs). In 1967 Congress, led by Senator Frank Moss, with strong support from Senator Ted Kennedy, passed amendments to the Social Security Act, creating a second type of nursing home called an Intermediate care facility (ICF). Intermediate care facilities were intended for elderly disabled individuals who did not need full-time care yet were not capable of living on their own.

Intermediate care facilities had not been created for individuals with psychiatric disorders but were immediately appropriated for them. The attraction for states was irresistible; an elderly patient in a state hospital in 1977 cost the state approximately $1,000 per month, but if the patient was transferred to an ICF, the state paid only approximately $120 per month in Medicaid matching funds. Without intention or planning, the federal government rapidly became the primary funding source for elderly mental patients. By 1968 a New York nursing home survey found that “about 36 per cent” of patients were seriously mentally ill. A federal survey reported that “between 1969 and 1974 there was a 44% decline in the state hospital population [of elderly patients] and a 48% increase in the number of nursing home residents with mental disorders.” Some states were very aggressive in transferring their elderly mentally ill patients to nursing homes during this period; California (86%), Massachusetts (87%), and Wisconsin (98%) were the leaders. Thus, in Wisconsin in 1969 there were 4,616 patients aged 65 years and older in the state hospitals, and in 1974 only 96 of them remained.
²

The massive transfer of elderly mentally ill individuals from state hospitals to nursing homes was a fiscal win for the states and a fiscal win for the owners of the nursing homes. The proliferation of Medicaid-funded ICFs was a major impetus to the subsequent incorporation of for-profit nursing home chains, followed by intermittent exposés of Medicaid fraud, kickbacks from pharmacies, and allegations of gross profiteering. Everyone appeared to win except the patients themselves, who, according to a 1977 report, had “fewer opportunities for socialization and recreation, less sophisticated use of medication, [and] a possible increase in mortality.” The last was confirmed by a California study that reported a nine-fold increase in deaths among patients who had been transferred from a state hospital to a nursing home, compared to a matched group of patients who remained at the state hospital. Many of the nursing home patients were, in fact, worse off than they had been in the state hospitals. They had not been deinstitutionalized, merely transinstitutionalized.
³

A CANARY IN THE COAL MINE

California has traditionally been on the cutting edge of American cultural developments, with Anaheim and Modesto experiencing changes before Atlanta and Moline. This was also true in the exodus of patients from state psychiatric hospitals. Beginning in the late 1950s, California became the national leader in aggressively moving patients from state hospitals to nursing homes and board-and-care homes, known in other states by names such as group homes, boarding homes, adult care homes, family care homes, assisted living facilities, community residential facilities, adult foster homes, transitional living facilities, and residential care facilities. Hospital wards closed as the patients left. By the time Ronald Reagan assumed the governorship in 1967, California had already deinstitutionalized more than half of its state hospital patients. That same year, California passed the landmark Lanterman-Petris-Short (LPS) Act, which virtually abolished involuntary hospitalization except in extreme cases. Thus, by the early 1970s California had moved most mentally ill patients out of its state hospitals and, by passing LPS, had made it very difficult to get them back into a hospital if they relapsed and needed additional care. California thus became a canary in the coal mine of deinstitutionalization.