American Psychosis (31 page)

The importance of continuity of care and caregivers for individuals with serious mental illnesses has long been recognized. As early as 1964 Jack Ewalt, the director of the Joint Commission on Mental Illness and Health, noted:

At the Massachusetts Mental Health Center we have found that we can greatly reduce the relapse rate by providing continuity of care. . . . We do not allow patients to be transferred among wards or services—the only way he can lose his doctor is if the doctor dies or goes elsewhere.

This principle was operationalized in the early 1970s by Leonard Stein and Mary Ann Test in Madison, Wisconsin, when they established the first Assertive Community Treatment
(ACT) team for patients being discharged from the state hospital. ACT teams consist of 100 to 120 patients assigned to a team of approximately 10 mental health workers, usually including a psychiatrist, psychologist, psychiatric nurses, social workers, and others. The team takes total responsibility for the patients, visiting them in their board-and-care homes or wherever they are living, making sure they continue taking their medications, and responding to crises before they lead to rehospitalizations. If patients have to be hospitalized, then team members visit the hospital. If the patients end up in jail, then team members visit the jail. Team members have a regular night and weekend call schedule, so someone is always available 24 hours a day, 365 days a year, for the patients assigned to that team. The patients thus get to know their ACT team members just as the ACT team gets to know the patients and their families. The clinical, housing, vocational, and social needs of the patients are all coordinated by the ACT team. As Mary Ann Test described it:

The team members do not necessarily meet all the client’s needs themselves (they may involve other persons or agencies). However they never transfer this obligation to someone else. The buck stops with the team. . . . The team remains responsible for the client no matter what his or her behavior is.
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ACT teams have been extensively studied over the years and have been reported to dramatically reduce rehospitalizations and the amount of time ACT patients spend in jail. They also increase the vocational success of the patients, and both patients and families have expressed great satisfaction with the ACT model. Much of the success of ACT teams comes from maintaining patients on their medication, and they do this, according to one summary, by using “access to resources such as housing and money as leverage to promote patients’ adherence to treatment recommendations.”
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Because they have been proven to be highly effective, ACT teams have been adopted in 38 states as the best model for treating people with serious mental illnesses. One study estimated that 50% of individuals with serious mental illnesses would be helped by ACT teams, as such teams are useful for individuals who do not take their medications regularly or have trouble accessing the available treatment and rehabilitation services. Because NIMH estimates that approximately 12.3 million adults have schizophrenia, severe bipolar disorder, or severe depression in a given year, that means that 6.1 million of them would benefit by ACT teams. According to a 2011 estimate, “about 60,000 persons nationwide . . . were being served by ACT” teams; this is about 1% of those who need it. The reason ACT teams are not used more widely 40 years after being introduced is the system of funding mental health services, as described in the next section. ACT teams do not fit well with the traditional categories of funding created for Medicare reimbursement, and because they produce less federal Medicaid revenue for the states, they are markedly underutilized.
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Most patients, therefore, continue to receive uncoordinated and disjointed mental illness services. They are randomly rehospitalized in whatever hospital happens to have a bed available despite the fact that the staff of that hospital may have little or no information regarding that patient’s extensive and complicated medical and psychiatric history. The patients experience a high turnover of underpaid workers in their psychiatric clinics, board-and-care homes, and nursing homes. The annual staff turnover in some nursing homes, for example, is 75%. Five different psychiatrists may oversee a patient’s medication on successive visits to an outpatient clinic. In 1982 Susan Sheehan created a stir when she published a book about a woman with schizophrenia who, over an 18-year period, experienced 27 separate admissions to 8 different hospitals and a total of 45 different treatment settings. Such discontinuous treatment, regarded as aberrant in 1982, is now regarded as the norm.
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4. Continuity of care, especially continuity of caregivers, is essential for good psychiatric care of individuals with serious mental illnesses.

Just as we have learned that continuity of care and caregivers is important, so too we have learned that medication alone is a necessary, but not sufficient, treatment for most individuals with serious mental illnesses. They also need access to decent housing, vocational opportunities, and opportunities for socialization. The best model that combines all three is the clubhouse model, based on Fountain House in New York City, which was started by six patients being discharged from a state hospital in 1948.

Clubhouses are just what they sound like—houses where mentally ill people come to hang out. A true clubhouse is open 7 days a week from morning until late evening. People do not sleep there, but most clubhouses have an associated housing program where many of the members do live. Clubhouses also have vocational programs with job training and job placement opportunities. Within the clubhouse, the members share the tasks of cooking lunch, answering phones, and keeping the clubhouse running.

Clubhouses have been widely praised for more than half a century. Studies have shown that they markedly decrease hospitalizations and incarcerations and lead to employment for many members. They are also cost-effective. Despite this apparent success, clubhouses have spread slowly across the United States. Sixty years after they began, there are still only about 200 of them, and only some of these incorporate the full clubhouse model. A few are outstanding, such as Fountain House in New York, Genesis Club in Worcester, Thresholds in Chicago, Grand Avenue Club in Milwaukee, Independence House in St. Louis, Alliance House in Salt Lake City, and Gateway House
in Greenville, South Carolina. However, clubhouses provide services for, at most, 1% of those seriously mentally ill individuals who could potentially benefit from them.
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The major reason clubhouses have not spread more widely is the same reason ACT teams have not proliferated—the disjointed funding system. Medicaid and other federal and state funding sources are rigidly set up to support specific activities such as housing or case management, not to cover a clubhouse that is doing many useful activities simultaneously. It is thus very difficult to fund clubhouses, and as Medicaid regulations become tighter it is becoming more difficult. This became clear in 2010 when the Green Door, an excellent clubhouse that had served mentally ill individuals in the nation’s capital for 30 years, was forced to close because of funding cuts. Sixty years after clubhouses began, there should be 2,000 of them, not 200, and states should be opening additional ones, not closing them down.
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5. In addition to medication, individuals with serious mental illnesses need access to decent housing, vocational opportunities, and opportunities for socialization. The clubhouse is the best model for meeting those needs.

The majority of seriously mentally ill individuals live in nursing homes and board-and-care homes. Some of these homes are managed by owners who provide residents with decent and humane living conditions. Many others, however, are managed by owners whose primary interest is in increasing profits, with consequent abysmal living conditions and victimization of residents, as described in previous chapters. This occurs because in most states there is little oversight of these homes; the state departments of mental health do not want to know about problems, because they would then have to close substandard facilities and find alternative living arrangements for the residents. The first rule of government is to not ask questions to which you do not want to know the answers.

Leaving nursing homes and board-and-care homes without adequate oversight has been a tragic mistake. These homes fall into the category of what are known as total institutions, which also include jails, prisons, mental hospitals, institutions for individuals with mental retardation, and orphanages. In such facilities, the staff has virtually complete power and authority over a captive and often vulnerable population. What usually happens in such total institutions was described by Philip Zimbardo in his well-known 1971 experiment with Stanford University students in which he had some students pretend to be prisoners and other students pretend to be prison guards. To the surprise of everyone, including Zimbardo, the pretend prison guards immediately began to devalue, depersonalize, dehumanize, and mistreat the pretend prisoners. Zimbardo summarized what is known about the phenomenon of total institutions in his book
The Lucifer
Effect: Understanding How Good People Turn Evil
. “Dehumanization,” he noted, “is one of the central processes in the transformation of ordinary, normal people into indifferent or even wanton perpetrators of evil. Dehumanization is like a cortical cataract that clouds one’s thinking and fosters the perception that other people are less than human.”
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The most effective way to counteract the natural tendency for staff to dehumanize mentally ill residents in total institutions such as nursing homes and board-and-care homes is through aggressive oversight and inspections. Such inspections are only effective if they are random and unannounced. Staff should be aware that inspectors may enter their facility at any time, day or night, and hold the staff accountable for conditions there. The original model for such oversight was the Lunacy Commission that operated in England from 1845 to 1890. Commissioners, including physicians, lawyers, and lay persons, carried out unannounced inspections of all public and private mental hospitals and had the authority to order the immediate closure of a facility.
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In the United States, almost no unannounced inspections of nursing homes or board-and-care homes take place. The few inspections that do occur are announced well before the event, giving owners of the facility time to clean up everything. One of the few systems of unannounced inspections was implemented in 1977 in New York State as the Commission on Quality of Care for the Mentally Disabled. For two decades, members of this commission carried out unannounced inspections, publicly releasing reports resulting in headlines such as “Adult Home Abuse Found,” “Report Says Home Operators Misused Funds Meant to Feed Mentally Ill,” and “For Adult Homes This One Ranks among the Worst.” The commission reported directly to the governor, not to the state Office of Mental Health, thus shielding it in part from the agency that was not interested in finding anything wrong.
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New York’s brief experiment with effective oversight and unannounced inspections was terminated by Governor George Pataki when he took office in 1995. Not coincidentally, nursing home and board-and-care home operators had been major contributors to the Pataki campaign. New York thus became like most states in preferring to hear no evil and see no evil in its nursing homes and board-and-care homes. Probably more typical than New York State is Pennsylvania, which, according to Andrew Scull, “repealed its provisions for inspecting boarding homes the same year (1967) it began ‘a massive deinstitutionalization program aimed at moving patients out of mental hospitals into community programs.’ ” The absence of such oversight virtually guaranteed that residents of those homes would be abused and victimized, and this is what has happened.
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6. To protect vulnerable mentally ill individuals living in nursing homes and board-and-care homes, there must be periodic, unannounced inspections by an independent state agency. Evaluations and corrective actions must be made public.

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Federal Financing of Mental Health Care

The third fundamental error of deinstitutionalization was in many ways the most egregious. For more than a century, mental health services had been the fiscal responsibility of state governments except in a few states, such as Iowa and Wisconsin, where some of the responsibility was assigned to the counties. The state department of mental health, the governor, and the legislature were ultimately responsible, and when things went wrong, as they sometimes did, they could be held accountable.

In 1963, with the passage of the community mental health centers legislation, the federal government assumed a significant role in funding mental health services for the first time in American history. With the subsequent passage of Medicare, Medicaid, SSI, and amendments to SSDI, the federal government effectively assumed responsibility for the majority of mental health funding, even if this development was mostly unplanned and unintended. In fact, the most striking aspect of the history of this massive shift in fiscal responsibility from the states to the federal government is the lack of any planning.

What has emerged is a chaotic system for funding mental health services, a system that is more thought-disordered than most of the seriously mentally ill persons it is intended to serve. As early as 1978, it was observed that “eleven major Federal departments and agencies share the task of administering 135 programs for the mentally disabled,” and it has grown even worse over the years. The bewildering complexity of the system defies logical thought processes. Directors of mental health services for cities, counties, and states must be equal parts accountant, corporate executive, and mental health professional to understand what services to charge to which funding source. Providing clinical services is the easy part of such jobs compared to figuring out how to pay for the services.
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