COMMUNITY

RESIDENCES

A DILEMMA: BLOCKING FOR THE CHRONICALLY MENTALLY DISABLED Alvin M. Mesnikoff, M.D.

The discharge of thousands of chronic mental patients from New York State hospitals presented a dilemma and a conflict to the new state psychiatric center serving West Brooklyn and Staten Island. New York, with its large state hospital populations, was among the leaders in a national movement of "deinstitutionalization." This movement was viewed as a response to the effectiveness of new drugs, but involved, as well, a concern for civil liberties and humanitarian issues; it had become the "popular" thing to do. In early 1974, the issue became a critical concern of the South Beach Psychiatric Center, and raised several key questions. Should the Center support, or at least not block, the development of thousands of adult home beds on Staten Island? These facilities were in the planning stage and aimed at housing former patients. Should we thus go along with the thrust and spirit of deinstitutionalization? Or should we consider the long range effects of this policy on the South Beach catchment areas: Staten Island where South Beach was located, a population of 325,000, and West Brooklyn, with a population of 800,000? The effects of the congregation of large numbers of chronically mentally disabled people were evident in the well-publicized cases of the U p p e r West Side of Manhattan, Long Beach in Nassau County, and Far Rockaway in Queens. Staten Island was on its way to becoming similarly overburdened, since land was relatively cheap, and entrepreneurs were eager to build adult homes to meet what seemed, at the time, to be an unending need for community housing for chronic patients. This situation presented a conflict between continued unrestricted construction of adult homes, and the prevention of an overburdening of the community. The Center decided to join with others in calling attention to this problem and in opposing unrestricted development. Mental health proAlvin M. Mesnikoff, M.D. is Regional Director, New York City, New York State Office o f Mental Health, a n d Professor o f Psychiatry, D o w n s t a t e Medical C e n t e r , State University o f N e w York. 288

PSYCHIATRIC QUARTERLY,VOL 50 (4) 1978 0033-2720/78/1600-0288500,95© 1978 Human SciencesPress

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viders realized that they were "blowing the whistle" on a situation which communities theretofore had unknowingly and passively accepted. Other communities appeared not to have appreciated the impact of resettling thousands of former patients until it was too late. The blocking of adult home development on Staten Island would result in the loss of potential housing for the chronically mentally disabled. An indirect effect was the referral of these individuals elsewhere, often to other already overburdened communities. But it was necessary to consider the values involved in preventing the possible deterioration of Staten Island neighborhoods.

A PROBLEM FOR A NEW H O S P I T A L In 1974, South Beach was the newest state hospital to be built in New York City. It served the people of West Brooklyn and Staten Island, a population of more than 1,100,000. Inpatient beds had opened in late 1973 and were the final element in a comprehensive system of services that was developed in each neighborhood served by South Beach during the four years that the Center was under construction. Sixteen sites for outpatient clinics, day hospitals, rehabilitation and community consultation, and education were placed throughout various local communities in Brooklyn and Staten Island. The South Beach Psychiatric Center was intended to serve the population which resided within its region, and its services and staffing pattern reflected this original plan. The Center was prepared to deal with the wide range of mental health problems reflected in a large urban population. At the time of planning for the Center, however, the large-scale use of proprietary homes and nursing homes to house groups of mentally disabled persons had not been considered, and the resultant strain which such facilities would place on existing psychiatric, medical, and community services was not planned for. Previously, and on a small scale, patients were placed in family care homes located within the state hospital service region. South Beach found itself serving an area that had an overabundance of domiciliary care facilities already. On Staten Island 2,232 domiciliary care beds were potentially available for mentally disabled persons. An additional 3,000 beds were being proposed at that time, with more planned. In West Brooklyn, there were 829 domiciliary care beds. While these facilities were built as homes for adults and designed to cater to such a population, their use, in some cases, was confined to patients discharged from state hospitals. The utilization of some of these facilities by nonpatients was very limited. Further, the anticipated demand by senior citizens for supervised living had been overestimated. The diversion of the use of adult homes solely toward the needs of chronic patients was proceeding apace. And, since the lead times for construction were long, entrepreneurs failed to realize that even the hospital population they were catering to had markedly decreased.

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A D U L T HOMES IN AN H I S T O R I C A L C O N T E X T It would be useful to put the issues with regard to adult homes in an historical context. Following the second World War, there was a resurgence in the progressive and more humane approach to the treatment of the mentally ill. This resurgence was manifested by the open door policy, therapeutic communities in hospitals, and the development of a range of community-based services designed to serve patients discharged to the community. While advances in psychiatric understanding and medication contributed to this development, it was importantly stimulated by the powerful forces of civil rights and concern for the disadvantaged. This progress was fueled by the money and taxes coming from the enormous growth of the national and state economies following the war. The Community Mental Health Center movement was a stark challenge and indictment of the state system. New treatment and drugs facilitated a changing of the focus of care from institution to community. In its early phase, the effects of this change went largely unnoticed in the community. In some, it was eagerly welcomed by those entrepreneurs who saw new uses for old hotels, which were being abandoned by their clientele in changing urban neighborhoods. A new industry shot up; large hotels rapidly filled with patients from hospitals eager to discharge them. With resources captured from the decreasing hospital population, the state hospitals developed some new community programs, although far from enough. A new spirit gripped many state hospitals, and they moved to participate in the more dynamic system of community care. As the congested urban areas became saturated with ex-hospital patients and achieved high visibility, often focused on a few patients with aberrant behavior, it became clear that these people required a broad range of services--not just medication and housing--and that these services had not caught up with the need. The movement, in New York and nationally, toward extensive community care (involving not a few patients in family care, but large numbers of patients residing in proprietary homes and hotels), created its own excess. This massive shift from the hospitalization of chronic patients, accumulated in hospitals over decades, to an emphasis on community resources was, hopefully, a one-time event, since additions to the long-turin hospital population are now small. In the overall attempt to change the major identification of a person from patient to citizen and community resident, the place and setting was important. A person's identification as a patient, the sine qua non of residing in an institution, was not appropriate for a person with a mental disability living in a community. It was important that the attitude that existed in a total institution not be carried to a new residential setting. In order to achieve this goal, it was essential to separate the mental health treatment program from the place of residence, so that the person would use community services. It was becoming clear that a broad spectrum of residential settings for

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citizens, whether sponsored by government, voluntary agencies, or the private entrepreneur, were necessary and that they must be carefully supervised and regulated.

A MODEL PROGRAM IN AN A D U L T HOME In 1973, South Beach responded to community concerns about a large adult home in Brooklyn. This large proprietary home was already established and its residents required an extensive range of mental health services. A model of collaboration was developed between South Beach Psychiatric Center and a proprietary home, Bayview Manor, which housed 240 residents, most of whom were chronic patients discharged from state hospitals. The home provided room and board for less than $13 per day. South Beach worked with the adult home staff so that they could participate more effectively in an overall therapeutic environment, providing comprehensive services at the home and in community services. It also transported residents to sheltered workshops on Staten Island. The size of these facilities and their concentration raised serious question about their usefulness. However, where they already existed and were in use, South Beach attempted to develop programs for which Bayview Manor served as a useful model. We knew that residents of such facilities required a broad range of rehabilitation services with modest goals for each person, and that for most, return to competitive employment was not possible. But people who lived in a community also required some job opportunities and cultural and recreational facilities. Despite high unemployment in the general population, rehabilitation requires a national social policy, which we do not now have, permitting the government to provide employment opportunities for those individuals whose disabilities render them unable to compete for normal employment but who, nevertheless, are part of the commerce and life of the community in which they live. Providing appropriate work opportunities--sheltered workshops, subsidized employment in regular jobs, and competitive employment--should be considered an essential part of treatment and prevention of the deterioration of the mentally disabled, including those chronically ill. The New York State Department of Mental Hygiene's policy required the local facility to provide care for patients who resided within its area of responsibility. When this policy was promulgated, however, the situation, as in the cases of Staten Island and West Brooklyn, was not considered. It was clear, for example, that South Beach would never be able to utilize all the available adult home beds in its region. Domicilary care facilities were not built where needed, but where entrepreneural opportunities existed. Many former patients were never residents of these communities. Mentally disabled persons placed in these adult homes were high risk groups who needed a full range of psychiatric services. The communities did not have

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the medical or psychiatric services to provide adequately for these unanticipated demands. When the Department's policy of community placement was promulgated, not enough thought was given to the impact on local neighborhoods, on the welfare system, and on the medical and human service systems in those communities.

C O M M U N I T Y REACTION T O T H E PLANNED A D U L T HOMES As the Director of the state facility serving the Staten Island and West Brooklyn communities, it was my responsibility to consider the many issues involved in assuring proper placement of a patient in the community. These included recognition of the fact that patients referred to such facilities had serious mental disability, and were not just adults requiring some supervision. Further, that these individuals did not choose a particular adult home on their own and that the Department of Mental Hygiene had an important role in making the referrals. The placements involved medical decisions and had to take into account more than a relationship between an individual residing in a state hospital and the proprietor of a domicilary care facility. There was also the need to consider the situation in the community in which the home was located, in order to insure a proper and compatible environment. South Beach put forward the view that facilities which house only mentally disabled individuals represent a continuation of the hospital environment, and therefore do not approximate a normal community. Such concentrated pockets of mentally disabled persons were immediately placed in a prominent and noticeable position in the community, and without proper planning could become the focus of hostility and rejection. The community viewed some patients as deviants, and some patients displayed behavior that created a nuisance. In addition to the negative interaction which large facilities generate in a neighborhood, the needs of the residents would place an enormous strain on existing community services and on the community. A 100- or 200-bed facility, whether on state grounds or in the middle o f a neighborhood, was still an institution. Based on these considerations, South Beach recommended the following: 1. That domiciliary care facilities be limited to 25 residents. Where it was the intention of the proprietor to house principally patients discharged from state hospitals, that intent must be clearly stated and considered before a license was issued. An arrangement for the care of such residents must be worked out with the appropriate comprehensive mental health service for that area. Permits for domiciliary care facilities should be restricted to a region where there was a demonstrated need. 2. That the number of mentally disabled persons in existing large facilities be limited to 30%. This was not intended to restrict the

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3.

4.

5. 6.

7.

choice by an individual as to his place of residence, but it recognized that referrals and placement were importantly influenced by the referring hospital. Because of the limited availability of other than ex-hospital patients, particular attention should be given to the conditions that would provide optimal living situations. We recommended that no new domiciliary care facilities be approved for the Staten Island and West Brooklyn area at the present time. Domiciliary care facilities should provide room, board, and laundry and such services should be separated from tile broad range of mental health and rehabilitation services that such residents require. These services should be provided by the usual community resources available to other citizens. It should be emphasized that residents require a broad range of services, not merely the services of a psychiatrist, the provision of medication, or minimal recreational and occupational therapy. Domiciliary care facilities should be subject to regular and strict inspections and be accredited for limited periods of time. The communities in which these facilities were to be located should be advised and given an opportunity to express their views through the local community planning board. Domiciliary care facilities should be approved for construction in areas in which they are needed, rather than become concentrated in areas which are temporarily attractive because of obsolescent or cheap hotels.

The action of South Beach, North Richmond Mental Health Center, and other community groups aroused the concern of the community as well as the medical and psychiatric providers of service, who were concerned that their limited resources would not be adequate. It also dramatically demonstrated to the entrepreneurs who were planning construction that cheap land could not be the predominant factor in deciding where to build new facilities. At the same time, the New York City Planning Commission was responding to the increased awareness of the unexpected use of adult homes for housing former patients. While previously the licensing of such facilities had been the responsibility of the State Board of Social Welfare, the Planning Commission added to its requirements the following: "That the proposed facilities will not require any significant additions to the supporting services of the neighborhood or that provision for adequate supporting services had been made." This additional requirement, added to the local actions, was sufficient to dissuade many entrepreneurs from going forward. T h e conflict arose between unrestricted construction of aduk homes (and the view that they provided appropriate housing for discharged patients) and the opposition by local providers and community groups who wished to prevent the overburdening of the community. South Beach, as

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one participant, resolved to bring the matter to the attention of the community and to move to prevent overcrowding. We might view this circumstance as involving a failure: the loss of potential housing for the chronically mentally disabled, and the participation by the people of Staten Island in a share of the overburdening that had affected other communities. Individuals not referred to these new homes would be placed in already overburdened communities elsewhere. On the other hand, a success could be viewed in the prevention of the conditions that would lead to the deterioration of a local community, and in the commitment of the mental health providers, including the state facilities, to the acceptance of their responsibility for the care of people in the community. Several years later, when this is being written, it is interesting to note that while the Center and the other mental health providers in Staten Island were criticized for "not accepting their share of responsibility," since they took an active role in preventing the development of these homes, the State Office of Mental Health has issued new regulations emphasizing that placement of patients requires careful attention to the factor of overburdening communities, and the deleterious effects of such overcrowding.

A dilemma: blocking community residences for the chronically mentally disabled.

COMMUNITY RESIDENCES A DILEMMA: BLOCKING FOR THE CHRONICALLY MENTALLY DISABLED Alvin M. Mesnikoff, M.D. The discharge of thousands of chronic menta...
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