Site hosted by Angelfire.com: Build your free website today!

DEINSTITUTIONALIZATION

OF THE MENTALLY ILL

img

A BRIEF HISTORY OF DEINSTITUTIONALIZATION

For more than half of this century, the state hospitals fulfilled the function for society of keeping the mentally ill out of sight and thus out of mind. Moreover, the controls and structure provided by the state hospitals, as well as the granting of almost total asylum, may have been necessary for many of the long-term mentally ill before the advent of modern psychoactive medications. Unfortunately, the ways in which state hospitals achieved this structure and asylum led to everyday abuses that have left scars on the mental health professions as well as the patients.

The stage was set for deinstitutionalization by the periodic public outcries about these deplorable conditions, documented by journalists such as Albert Deutsch (1948); mental health professionals and their organizational leaders also expressed growing concern. These concerns led ultimately to the formation of the Joint Commission on Mental Illness and Health in 1955 and its recommendations for community alternatives to state hospitals, published in 1961 as a widely read book, Action for Mental Health.

When the new psychoactive medications appeared, along with a new philosophy of social treatment, the great majority of the chronic psychotic population was left in a state hospital environment that was clearly unnecessary and even inappropriate for them, though, as noted above, it met many needs. Still other factors came into play. First was a conviction that mental patients receive better and more humanitarian treatment in the community than in state hospitals far removed from home. This belief was a philosophical keystone in the origins of the community mental health movement. Another powerful motivating force was concern about the civil rights of psychiatric patients; the system then employed of commitment and institutionalization in many ways deprived them of their civil rights. Not the least of the motivating factors was financial. State governments wished to shift some of the fiscal burden for these patients to federal and local governments--that is, to federal Supplemental Security Income (SSI) and Medicaid and local law enforcement agencies and emergency health and mental health services.

The process of deinstitutionalization was considerably accelerated by two significant federal developments in 1963. First, categorical Aid to the Disabled (ATD) became available to the mentally ill, which made them eligible for the first time for federal financial support in the community. Second, the community mental health centers legislation was passed.

With ATD, psychiatric patients and mental health professionals acting on their behalf now had access to federal grants-in-aid, in some states supplemented by state funds, which enabled patients to support themselves or be supported either at home or in such facilities as board-and-care homes or old hotels at comparatively little cost to the state. Although the amount of money available to patients under ATD was not a princely sum, it was sufficient to maintain a low standard of living in the community. Thus the states, even those that provided generous ATD supplements, found it cost far less to maintain patients in the community than in the hospital. (ATD is now called Supplemental Security Income and is administered by the Social Security Administration.)

The second significant federal development of 1963 was the passage of the Mental Retardation Facilities and Community Mental Health Centers Construction Act, amended in 1965 to provide grants for the initial costs of staffing the newly constructed centers. This legislation was a strong incentive to the development of community programs with the potential to treat people whose main recourse previously had been the state hospital. It is important to note, however, that although rehabilitative services and pre-care and aftercare services were among the services eligible for funding, an agency did not have to offer them in order to qualify for funding as a comprehensive community mental health center.

Also contributing to deinstitutionalization were sweeping changes in the commitment laws of the various states. In California, for instance, the Lanterman-Petris-Short Act of 1968 provided further impetus for the movement of patients out of hospitals. Behind this legislation was a concern for the civil rights of the psychiatric patient, much of it from civil rights groups and individuals outside the mental health profession. The act made the involuntary commitment of psychiatric patients a much more complex process, and it became difficult to hold psychiatric patients indefinitely against their will in mental hospitals. Thus the initial stage of what had formerly been the career of the long-term hospitalized patient--namely, an involuntary, indefinite commitment--became a thing of the past.

Some clearly recognized that while many abuses need to be corrected, this legislation went too far in the other direction and no longer safeguarded the welfare of the patients.But these were voices in the wilderness. We have still not found a way to help some mental health lawyers and patients' rights advocates see that they have contributed heavily to the problem of homelessness--that patients' rights to freedom are not synonymous with releasing them to the streets where they cannot take care of themselves, are too disorganized or fearful to avail themselves of what help is available, and are easy prey for every predator.

The dimensions of the phenomenon of deinstitutionalization are revealed by the numbers. In 1955 there were 559,000 patients in state hospitals in the United States; today at any given time there are approximately 132,000.

img

SO WHAT HAPPENED TO THE PATIENTS???

What happened to the chronically and severely mentally ill as a result of deinstitutionalization? In the initial years approximately two-thirds of discharged mental patients returned to their families.The figure is probably closer to 50 percent in states such as California, which has a high number of persons without families. This discussion is limited to those aged 18 to 65, for those over 65 are a very different population with a very different set of problems.

In more recent years, there has been a growing number of mentally disabled persons in the community who have never been or have only briefly been in hospitals...Problems in identifying and locating them make it difficult to generalize about them. But we do know they of course tend to be younger and often manifest less institutional passivity than the previous generation, who had spent many years in state hospitals. A large proportion of the chronically mentally ill--in some communities as many as a third or more of those aged 18 to 65--live in facilities such as board-and-care homes.These products of the private sector are not the result of careful planning and well-conceived social policy. On the contrary, they sprang up to fill the vacuum created by the rapid and usually haphazard depopulation of our state hospitals. Suddenly many thousands of former state hospital patients needed a place to live, and private entrepreneurs, both large and small, rushed in to provide it.

"Board-and-care home" is used in California to describe a variety of facilities, many of which house large numbers of psychiatric patients. These patients include both the deinstitutionalized and the new generations of chronically mentally ill. The number of residents ranges from one to more than a hundred. Board-and-care homes are unlocked and provide a shared room, three meals a day, dispensing of medications, and minimal staff supervision; for a large proportion of long-term psychiatric patients, the board-and-care home has taken over the functions of the state hospitals of providing asylum, support, structure, and medications. And for many, the alternative to the board-and-care home would be homelessness.

These is a great deal of variability in facilities such as board-and-care homes. Generally, they could and should provide a higher quality of life than they do, and services should be made more available to their residents. Services should include social and vocational rehabilitation, recreational activities, and mental health treatment. But considering the funding available, these facilities are for the most part not bad in the sense that there is no life-threatening physical neglect or other gross abuses .

What does stand out is the significantly higher funding for similar resources for the developmentally disabled, and the resulting increased quality in terms of location of the facility, condition of repair, general atmosphere, and staffing. For instance, as of 1984 the rate paid to operators of board-and-care facilities for the developmentally disabled in California varies from a minimum of $525 a month for easily manageable residents to $840 a month for "intensive treatment." For the mentally ill there is only one rate of $476 per month, regardless of the severity of the problem and the need for intensive supervision and care; many of the better board-and-care home operators have stopped serving the mentally ill in order to take advantage of the higher rates for the developmentally disabled. Clearly this is a gross inequity.

But facilities such as board-and-care homes and single-room-occupancy (SRO) hotels, even when adequate, often do not attract and keep the homeless .If they do enter one of these facilities, their stay may be brief--they drift in and out, to and from the streets. Further, these facilities are not prepared to provide the structure needed by some of the chronically mentally ill, as discussed below.

This chapter is, of course, concerned with those chronically mentally ill persons who live neither with family nor in board-and-care homes nor in SRO hotels nor in nursing homes nor in their own homes and apartments. Some are homeless continuously, and some intermittently. While estimates of the extent of the problem are highly variable, and there are no reliable data,...it seems reasonable to conclude that nationwide the homeless mentally ill number in the tens of thousands, and perhaps the many tens of thousands. They live on the streets, the beaches, under bridges, in doorways. So many frequent the shelters of our cities that there is concern that the shelters are becoming mini-institutions for the chronically mentally ill, as ironic alternative to the state mental hospitals.

img

THE DRIFTERS

Drifter is a word that strikes a chord in all those who have contact with the chronically mentally ill--mental health professionals, families, and the patients themselves. It is especially important to examine the phenomenon of drifting in the homeless mentally ill. The tendency is probably more pronounced in the young (aged 18 to 35), though it is by no means uncommon in the older age groups. Some drifters wander from community to community seeking a geographic solution to their problems; hoping to leave their problems behind, they find they have simply brought them to a new location. Others, who drift in the same community from one living situation to another, can best be described as drifting through life: they lead lives without goals, direction, or ties other than perhaps an intermittent hostile-dependent relationship with relatives or other caretakers.

Why do the chronically mentally ill drift? Apart from their desire to outrun their problems, their symptoms and their failures, many have great difficulty achieving closeness and intimacy. A fantasy of finding closeness elsewhere encourages them to move on. Yet all too often, if they do stumble into an intimate relationship or find themselves in a residence where there is caring and closeness and sharing, the increased anxiety they experience creates a need to run.

They drift also in search of autonomy, as a way of denying their dependency, and out of a desire for an isolated life-style. Lack of money often makes them unwelcome, and they may be evicted by family and friends. And they drift because of a reluctance to become involved in a mental health treatment program or a supportive out-of-home environment, such as a halfway house or board-and-care home, that would give them a mental patient identity and make them part of a mental health system: they do not want to see themselves as ill.

Those who move out of board-and-care homes tend to be young; they may be trying to escape the pull of dependency and may not be ready to come to terms with living in a sheltered, segregated, low-pressure environment. If they still have goals, they may find life there extremely depressing. Or they may want more freedom to drink or to use street drugs. Those who move on are more apt to have been hospitalized during the preceding year. Some may regard leaving their comparatively static milieu as a necessary part of the process of realizing their goals--but a process that exacts its price in terms of homelessness, crises, decompensation, and hospitalizations. Once out on their own, they will more than likely stop taking their medications and after a while lose touch with Social Security and no longer be able to receive their SSI checks. They may now be too disorganized to extricate themselves from living on the streets--except by exhibiting blatantly bizarre or disruptive behavior that leads to their being taken to a hospital or to jail.

img

SO WHAT DOES IT ALL MEAN???

The majority of chronically mentally ill persons live with their families or in sheltered living situations such as board-and-care homes. Some live in situations such as single-room-occupancy hotels or otherwise alone. Many are in and out of hospitals. Some are continuously homeless, and some intermittently so. While a minority of the total population of chronically mentally ill are homeless at any given time, very substantial numbers of persons are involved, and homelessness of the chronically mentally ill is a critical nationwide problem.

What have we learned from our experiences with more than two decades of deinstitutionalization? First of all, it has become clear that what is needed is a vast expansion of community housing and other services and a whole revamping of the mental health system to meet the needs of the chronically mentally ill. Markedly increased funding is needed to increase the quality, quantity and range of housing and other services, improve the quality of life for this population, and meet their needs for support and stability. The availability of suitable services should make it possible to attract many of the homeless to stable living arrangements and retain them there.

Many of the chronically mentally ill are not able to find or retain such community resources such as housing, a stable source of income, and treatment and rehabilitation services. The need for monitoring and treating these patients by means of aggressive case management has become increasingly apparent. Aggressive case management for all of the chronically mentally ill, given the availability of adequate housing and other resources, would probably minimize homelessness.

It is one of the injustices of deinstitutionalization that, compared to the developmentally disabled, the chronically mentally ill in the community do not fare well in terms of funding, housing and services. Surely the mentally ill should be given equal priority. The success of deinstitutionalization for the developmentally disabled, however, does demonstrate what can be accomplished when there is determined advocacy and adequate funding and community resources.

We have learned in this era of deinstitutionalization that many of the homeless mentally ill feel alienated from both society and the mental health system, that they are fearful and suspicious, and that they do not want to give up what they see as their autonomy, living on the streets where they have to answer to no one. They may be too acutely and chronically mentally ill and disorganized to respond to our offers of help. Their tolerance for closeness and intimacy is very low, and they fear they will be forced into relationships they cannot handle. They may not want a mentally ill identity, may not wish to or are not able to give up their isolated life-style and their anonymity, and may not wish to acknowledge their dependency. Thus we are dealing with an extremely difficult and challenging population.

As with most problems, we have learned that there are no simple and universal solutions to the problems of homelessness. Let us take the shelter approach as an example. Some of the chronically mentally ill will accept food and shelter, but nothing else, and sooner or later return to the streets, despite the efforts of our most sensitive clinicians. A few will not accept simple shelter, even with no conditions attached. We have also learned that some of the chronically mentally ill, because of their personality problems, their lack of internal controls, and their resort to drugs and alcohol, will not be manageable, or welcome, in open settings, such as with family or in board-and-care homes, or even in shelters. Some will need more structure and control; they may need involuntary treatment in a secure intermediate or long-term residential setting or in the community, facilitated by mechanisms such as conservatorship or mandatory aftercare. Such intervention should not be limited to those who can be proven to be "dangerous," but should be extended to gravely disabled individuals who do not respond to aggressive case management and are too mentally incompetent to make a rational judgment about their needs for care and treatment. In this way we can help those homeless mentally ill who are unwilling to accept our assistance and whose self-destructive tendencies, personality disorganization, and inability to care for themselves result in lives lived alternately in jails, in hospitals, and on the streets. In some cases such intervention is the only act of mercy left open to us.

We have learned that we must accept patients' dependency when dealing with the chronically mentally ill. And we must accept the total extent of patients' dependency needs, not simply the extent to which WE wish to gratify these needs. We have learned, or should have learned, to abandon our unrealistic expectations and redefine our notions of what constitutes success with these patients. Sometimes it is returning them to the mainstream of life; sometimes it is raising their level of functioning just a little so they can work in a sheltered workshop. But oftentimes success is simply engaging patients, stabilizing their living situations, and helping them lead more satisfying, more dignified, and less oppressive lives.

The reluctance of mental health professionals and society to fully accept the dependency of this vulnerable group, inadequate case management systems, the preference of many mental health professionals to work with more "healthy" and "savory" patients, and an ideology that "coercive" measures should be used only in cases of "extreme danger" leave the homeless mentally ill in extreme jeopardy. If deinstitutionalization has taught us anything, it is that flexibility is all important. We must look objectively at the clinical and survival needs of the patients and meet those needs without being hindered by rigid ideology or a distaste for dependency.

img

img