Gold Award: A Community Treatment Program Mendota Mental Health Institute Madison, Wisconsin
Editor's Note: The training in community living program, the model for today's assertive community treatment, received the American Psychiatric Association's Gold Achievement Award in 1974. Developed by Leonard I. Stein, M.D., Mary Ann Test, Ph.D., and Arnold J. Marx, M.D., at the Mendota Mental Health Institute in Madison, Wisconsin, in the early 1970s, the award-winning program is described in the article below, first published in the October 1974 issue of Hospital & Community Psychiatry. Over the years APA Achievement Awards have been presented to many outstanding and innovative programs for persons with mental illness, but few have had the impact of the assertive community treatment program. In an analysis and commentary beginning on page 759, Lisa Dixon, M.D., M.P.H., discusses the evolution of the program and the qualities that led to its being so widely disseminated. (Psychiatric Services 51:755-758, 2000)
Believing that hospitalization reinforces the dependent qualities frequently found in mental patients, investigators at Mendota Mental Health Institute developed an intensive treatment program in the community. Patients are randomly assigned to the program, called Training in Community Living; they live and work in the community with support from a specially trained staff. They remain in the program for 14 months and are gradually linked with appropriate community services. The program is being evaluated by comparison with a control group, most of whom receive progressive hospital treatment and community aftercare. As of July 1974, hospitalization had been avoided for all but ten of the 89 patients assigned to the program.
An unusual community treatment program at the Mendota Mental Health Institute in Madison, Wisconsin, has demonstrated that patients who would otherwise be treated in mental hospitals can be successfully treated in the community without shifting the burden of care to their families. Called Training in Community Living, the program is staffed by former hospital employees, who have been retrained to work with the patients in their homes and at their jobs, and to assist them with the various activities of daily living. Virtually all of the patients in the program, including those who are highly symptomatic, chronic, and dependent, have been treated without hospitalization.
The program developed out of the investigators' clinical experience and the resulting belief that the persistent high rate of treatment failures was closely related to deficits in coping skills required to maintain an adequate community adjustment. They see most patients who are hospitalized as having a limited ability to meet the goals and demands of life; they have difficulties with work habits, socialization, leisure-time activities, and other aspects of living. They also have powerful dependency needs often expressed as an aggressive dependency on their families or on institutions. Most have been dependent one way or another all their lives. They also share a capacity to develop severe psychiatric symptomatology when confronted with only mild to moderate degrees of stress. All those factors lead to a tenuous community adjustment, with the patient usually hovering on the brink of rehospitalization.
Hospitals have been unsuccessful in dealing with the specific problems of such patients, and, in the opinion of the investigators, they have frequently compounded them by reinforcing dependency and fostering institutionalization. Most community programs have also failed; such patients are frequently uncooperative, and few programs are equipped to assertively reach out and provide the intensive treatment required.
Training in Community Living is designed to overcome those deficiencies. Funded in part by a grant from the National Institute of Mental Health, it has been in operation since September 1972. (A predecessor, from which the basic model evolved, was a 12-month pilot effort called the Prevention of Institutionalization Program.) The current program, which represents a major expansion of the pilot project into an alternative for the mental hospital, was developed by Leonard I. Stein, M.D., Mary Ann Test, Ph.D., and Arnold J. Marx, M.D. Both programs were made possible through the strong support of Lee A. Ecklund, M.D., the institute director.
The goals in the Training in Community Living program are primarily to enhance patients' community adjustment, to decrease time spent in institutions, and ultimately to prevent the development of the chronic patient role. Additionally the program focuses on decreasing patients' symptomatology and increasing their self-esteem and satisfaction with life. The program is being evaluated by comparison with a control group, most of whom receive progressive intensive hospital treatment and community aftercare.
All who seek admission to the institute's inpatient services and who meet certain criteria are assigned to either the program or the control group. The criteria are residence in the county, age between 18 and 62, and diagnosis other than severe organic brain syndrome or primary alcoholism. Assignments are made at random after the patient's eligibility has been determined. Patients remain in the community program for 14 months, during which they are gradually linked with appropriate community services. Data are collected on both groups for 36 months from time of entrance into the respective programs.
A patient assigned to the program is immediately interviewed by William Knoedler, M.D., a psychiatrist who is unit chief of the community treatment staff. Every effort is made to avoid hospitalization; it is reserved for patients who are imminently suicidal or homicidal, or who are so severely psychotic as to require high dosages of medication only feasible in the hospital's highly structured environment.
Treatment consists of participation in a full schedule of daily living activities in the community, and pharmacotherapy where appropriate. The staff help the patient find a place to live in a rooming house, apartment, YMCA, or elsewhere, and assist him in such activities as doing laundry, shopping, cooking, eating in restaurants, grooming, budgeting, and using transportation.
Staff also give patients sustained and intensive assistance in finding a job or sheltered workshop placement, and then remain in daily contact with them and their supervisors to help with problems arising in the job. Patients are taught to use their leisure time constructively and to develop effective socialization skills; staff prod them to become involved in relevant recreational and social activities in the community and frequently accompany them to such functions if needed. In all interactions, staff play down the patients' symptomatology and stress their assets. The program is highly flexible so as to provide whatever assistance the patients may need. Initially staff have daily, even hourly, contact with patients; the time spent with them is gradually diminished as they progress in the treatment program. Work with patients' families and significant others is directed toward breaking pathological dependent relationships.
The 18-member staff include a psychiatrist, a psychologist, a social worker, an occupational therapist, five nurses, and nine aides. A rented house in downtown Madison serves as their base of operations, and they gather there twice a day to share information, revise treatment programs as necessary, and plan the next shift's work schedule. They work in two shifts so that a full staff is available from 7 a.m. until 11 p.m. seven days a week. A member of the professional staff remains on call at night to give 24-hour coverage for patients.
The staff implementing the program all had traditional psychiatric hospital backgrounds. Retraining for work in the program involved discussion sessions to acquaint them with its basic theoretical and operational guidelines and the problems that could be expected in treating highly symptomatic patients outside the hospital. Brainstorming and role-playing techniques were used to help staff work out ways of managing various kinds of problems. They also familiarized themselves with the housing, recreation, transportation, and shopping offered in various neighborhoods.
Using mental hospital personnel to staff this kind of community program was found to have both advantages and problems. Among the advantages were their experience in and commitment to working with severely ill patients and their orientation toward working with patient behaviors. They were also used to a team approach and were willing to rotate shifts to keep the program operational 16 hours a day. The major problems arose in the transition from a highly structured hospital setting, where there is little individual decision-making, to an unstructured setting requiring a great deal of initiative and willingness to make decisions quickly. However, the training and support during the early stages of the program helped ease the transition and enabled staff to take on increased responsibility.
For the program to succeed required that it be fully accepted by the community. Therefore, before it began, conferences were held with all relevant community agencies to establish close working relationships. Members of the local police force, floor supervisors in sheltered workshops, landlords of rooming houses, and others were assured that they were not expected to be therapists or to change their way of working; they were told to treat the patients the same as they would anyone else. Staff emphasized they would be available 24 hours a day to assist them if needed.
A case history
How the program works is illustrated by the case history of a 30-year-old unmarried woman who was brought to the institute by her parents for voluntary admission. They had with them admission papers, signed by a physician, stating that the woman was in need of hospital treatment. It would have been the sixth hospital admission for Miss J; she had spent a total of 11 months in a psychiatric hospital. She had lived away from home briefly several times and had worked at many jobs, none lasting longer than six months. For the past year she had lived at home and had been unemployed. She had virtually always lived as a child in her parents' home, contributing nothing financially to her own support.
During the past year Miss J had been maintained on phenothiazines and was seen at the mental health clinic as an outpatient for periodic checks on her medication. In the past two months she had become increasingly irritable and irrational and precipitated frequent arguments with her parents. She began missing her clinic appointments, and it was questionable whether she was taking her medication regularly. Her parents were very familiar with that pattern of behavior; in the past it had led to her hospitalization. But at the admissions office Miss J was randomly assigned to the Training in Community Living program, and the hospital registrar called the program headquarters to inform staff that a patient was waiting in the admissions office.
The psychiatrist and a nurse came to meet with Miss J and her parents there. It soon became evident to them that Miss J was in the midst of a schizophrenic episode, but was not suicidal or homicidal and did not require such high dosages of phenothiazines immediately to need hospitalization. The staff members described the program to Miss J and her parents and took them to the community headquarters where plans were initiated for treatment.
The plans included increasing Miss J's medication, arranging for her to stay at the YWCA at night until a more permanent living arrangement could be worked out, and instructing the family to curtail all contact with her for the time being. They were encouraged to get in touch with staff when they wished and were given a telephone number to call 24 hours a day. Miss J spent the rest of the afternoon and evening with the staff getting a physical examination, going to dinner with a staff member and to the YWCA to rent her room, and then attending an evening activity with another staff member.
The next morning a staff member picked up Miss J and took her to breakfast at a nearby coffee shop. Later that morning Miss J met with a vocational rehabilitation counselor, a half-time consultant to the program provided by the state vocational rehabilitation division. He felt she could benefit from a workshop experience. That afternoon she was taken to one of the community's sheltered workshops; plans were made for her to start work the next day.
Within a week Miss J was clinically much improved and stated that she wanted to move into a rooming house where she could have kitchen privileges. Staff helped her look through the classified advertisements and went with her to see some of the rooms. After she chose a place to live, staff helped her learn how to keep her place livable, plan simple menus, shop for food, and budget her money. Staff time was also allocated to introduce her to social and recreational activities in the community.
During the first month in the treatment program Miss J's performance in the sheltered workshop continued to improve, and she became more autonomous in her living situation. Her family required repeated reassurance that she was able to manage without continuous supervision. They were encouraged to refrain from seeing her and reinforcing her dependency.
However, not unexpectedly, difficulties arose. The day after she received a very positive evaluation at the workshop, indicating she was almost ready for competitive employment, Miss J got into an argument with the floor supervisor at the workshop and walked off the line. Because she got paid only if she worked, she was not paid. She stormed into the program headquarters and demanded her money for supper. A staff member spent the next hour with Miss J going over the events at work, emphasizing that she would not receive money she did not earn. The next morning she did not show up at the sheltered workshop. A staff member immediately went to her rooming house and urged her to get out of bed and get back to work.
While Miss J complied at the time, within the next two weeks two other disruptive episodes occurred at work and at the rooming house, resulting in her eviction. Finally, she appeared at her parents' home and asked if she could move back with them. All the episodes were handled firmly and consistently. She was not paid at work; she learned that certain behaviors would lead to eviction from her residence; her family received sufficient support to resist her becoming dependent on them again; and, most important in the view of staff, she found that her behavior would not get her back in the hospital. She learned that although staff were always available to help her learn to adapt to life in the community, they could not be coerced into treating her like an irresponsible child.
Currently staff spend about two hours a week with Miss J, who has been in the program about seven months. She is now in competitive employment, but requires some support in her job and help in budgeting her money. She manages quite well in another boarding house and does her own shopping and meal preparation. Her family has come to see her as having more potential than they believed possible and are relieved not to have her as a continuing burden. She now has ties with several community agencies. Her medication is given via injection by a visiting nurse. She participates in the mental health center's aftercare program and in recreational activities at the city's community center. As each day passes, her ties to the sick role lessen.
Evaluation of the program
The evaluation study is carried out by a research staff that operates independently from the clinical staffs of the control and experimental programs. All patients in the program and the control group are evaluated at the time of admission and at four-month intervals for a total of 36 months. The Demographic Data Form is completed by staff at admission; it contains standard demographic data on the patient's life situation. Two other forms are completed at admission and at four-month intervals. They are the Short Clinical Rating Scale, which measures symptomatology, and the Community Adjustment Form, which measures quality of life as revealed by the patient's living situation, economic and job status, and satisfaction with life.
In addition, the patient's family or closest friend or relative completes a Family Burden Scale one month and four months after the patient begins treatment. The scale is designed to help staff determine whether the experimental approach of treating patients in the community places more of an emotional and economic burden on family members than does hospital treatment.
As of late July 1974, there had been 154 subjects in the study. The first 130 admissions were equally divided between the community living program and the control group; another 24 patients were recently admitted to the community program in the study's second phase. Thus there were 65 patients in the control group and 89 in the community program. Of the total group, 55 per cent were men and 45 per cent were women. The median age was 31, and approximately 25 per cent were married; the rest were either single, separated, or divorced. They had spent an average of 13 months in psychiatric institutions before admission to the study.
Outcome data to date show that only ten, or 11 per cent, of the patients in the community program required hospitalization; those who were hospitalized stayed a mean of 12.4 days. More than two-thirds of the patients had been in the program at least eight months. Fifty-eight, or 89 per cent, of the control group had been hospitalized, for a mean of 25.6 days; 41 per cent have had at least one readmission.
Analysis of data for the first 60 patients in each group over the first four months of the study showed that those in the community program spent significantly more time in sheltered employment and significantly less time unemployed than did control patients. There was no significant difference between the groups in time spent in competitive employment. Patients in the community program spent a mean of 36 days in sheltered employment and 40 days in competitive employment, and were unemployed for 46 days. Control group patients spent a mean of nine days in sheltered employment and 39 days in competitive employment. They were unemployed for a mean of 83 days.
On admission both groups scored high—between moderately and markedly ill—on the Short Clinical Rating Scale. At the end of four months there was a significant drop in the symptomatology of both groups with no significant difference between them. The Family Burden Scale given one month after the patient's admission revealed an almost identical burden for both groups. At four months, however, there was a statistically significant drop in the burden for families of patients in the community program; families of control-group patients reported no change in the burden experienced. At the end of four months, there was no significant difference between the two groups in their satisfaction with life or in the adequacy of their shelter, food, and clothing.
A second part of the study involves a cost-benefit analysis of the program and a systematic comparison with the cost of traditional hospital care. In addition to making cost data available to decision-makers and developing outcome measures that can be translated into monetary terms, this aspect of the study is intended to demonstrate the desirability and feasibility of a cooperative research effort involving psychiatry and economics.
The results to date indicate that the community living program is a feasible alternative to mental hospital treatment. It has greatly reduced time spent in hospitals and the resulting social stigma, disruption of life, and reinforcement of dependency without increasing the burden to the patient's family. The investigators believe that the model has powerful potential for significantly reducing the chronic patient role, as well as for enhancing patients' long-range adjustment in the community.
