People who work with persons with severe mental illness in North Carolina quickly hear that thousands of erstwhile state hospital residents live in Adult Care Homes. They hear that residents have little access to psychiatric care or rehabilitation services, spend most of their time smoking cigarettes and watching TV, and live far from their families and friends. They learn that staff at the homes are under-trained, overworked and underpaid. Because staff members do not stay in their jobs very long, residents have to deal with frequent caregiver changes.
      What are Adult Care Homes in North Carolina really all about? Adult Care Homes are a key component of North Carolina's mental health system. Although they provide no specialty services and residents have little access to rehabilitative services, the state has relied upon them to implement its policy of de-institutionalization. While they must be licensed, they are unregulated by the Division of Mental Health, Developmental Disabilities and Substance Abuse Services because they are designed as minimal-care facilities for the elderly.
      Adult Care Homes are defined as group housing and services programs for two or more unrelated adults that provide at least one meal per day, housekeeping services, and 24-hour scheduled and unscheduled personal care services. They are intended for adults whose impairments prevent them from living independently. Adult Care Homes with 2-6 beds are called Family Care Homes. Homes with more than 6 beds, formerly called Homes for the Aged, now are simply known as Adult Care Homes. Both types are commonly called "rest homes" in spite of industry and legislative efforts to enliven their image and boost their income.
      The Adult Care Home industry expanded rapidly in the 1980s and 1990s. The number of beds increased from about 12,000 in the early 1980s to over 30,000 in the late 1990s. The growth of these privately owned facilities was greatly aided by public money, including residents' disability checks, Medicaid, and a subsidy from the State-County Special Assistance for Adults program. The Special Assistance funds were particularly important, because by statute this money is available only for residents of Adult Care Homes. (A current demonstration project allows the use of Special Assistance funds for up to 400 eligible North Carolinians who are living at home rather than in Adult Care Homes.)
      Currently more than 10,000 North Carolinians with mental disabilities live in Adult Care Homes. Roughly 3000 of these are adults younger than 65 years old who have severe mental illnesses like schizophrenia or bipolar disorder. Forty years ago, most of these non-elderly Adult Care Home residents would have lived in a state psychiatric hospital. But over the last several decades, thousands of patients with schizophrenia have been discharged from state-run psychiatric hospitals to privately owned rest homes. At their worst, Adult Care Homes are the functional equivalent of the old back wards of state hospitals where care was custodial and rehabilitation and treatment efforts were minimal.
      Supported by funds from the Foundation of Hope in Raleigh, I conducted a study of Adult Care Homes in the late 1990s. A colleague and I visited 18 of the homes. We interviewed nearly 50 residents with severe mental illness. Ninety percent of the residents we interviewed had either schizophrenia or schizoaffective disorder, while the remainder had another psychotic disorder or bipolar disorder.
      All residents we interviewed identified a specialty mental health provider, either at the local mental health center or a private psychiatrist. Visits with a psychiatrist for medication management were thus highly available, but the accessibility of other mental health, vocational, and social services was less clear. Very few people we interviewed used a mental health service other than for medication management. Some had been offered day treatment or clubhouses but refused.
      A high proportion of the residents took expensive atypical anti-psychotic medications, which are thought to have several advantages over older, cheaper medications. This is possible because Medicaid recipients with mental illness in North Carolina benefit from a non-restrictive formulary that allows ready access to these medications. Residents of Family Care Homes had fewer symptoms and side effects than residents of larger Adult Care Homes. This is likely the result of a selection process whereby the owner/operators of Family Care Homes chose persons with fewer problems. Perhaps for this reason, Family Care Home residents were more satisfied with their lives than were residents of the larger homes. Because Family Care Homes are often located in former single-family houses, they seem much less "institutional" than larger rest homes, which often resemble large nursing homes.
      Our interviews confirmed that residents felt they had little choice in where to live and that state hospital practices encouraged living in rest homes. State hospital social workers are pressured to facilitate quick discharges. The social workers find it necessary to cooperate with rest home operators, who are so eager to fill their beds that they will pick up patients from distant state hospitals. Because state rules do not allow Special Assistance funds to supplement rent in unlicensed facilities, Adult Care Homes are often the only affordable option.
      At a rural rest home with more than 30 beds we interviewed a 55-year-old man with a history of substance abuse and bipolar disorder. He was first hospitalized when he was 19, and had more than 20 total hospitalizations, mostly at state hospitals. He had never been in a rest home until five months before we interviewed him. Before that, he was living on the streets for several months, and before that he was living in a single-room-occupancy hotel. He had lived in a single community for 12 years, but earlier had lived in cities across the country while working a variety of odd jobs. He last worked four years previously.
      He had been hospitalized several months before we met him because of severe depression and heavy substance abuse. He told us that police officers who knew him took him to the hospital because they had become concerned about his obvious decline. He said the best thing that had happened to him in the last few months was that "I come off the streets and got a place to stay and three meals a day." But he described a typical day as boring, saying "Sometimes I don't know what to do with myself." He said that the isolation of the home, which he called "confinement," is what bothered him most. "It drives me nuts, you know."
      What follows is his description of how he came to live in a rest home:

      Interviewer: What made you decide on this place to live?

      Respondent: This is where the hospital sent me. My doctor didn't think I should be on the street, you know. She talked to me about it. She was - she was bent on me going to a rest home. She was real sweet. And she said I didn't need to be on the streets since cold weather's gonna be coming.

      I: So the hospital basically just found this place for you?

      R: Yeah. A social worker found it. Two women come out and talk to you. One of 'em's the administrator and the other one's her assistant. They go up on wards and visit every month. Social worker came and got me and I went down and talk with 'em. They told me it was in the rural area but doesn't mean confinement was out, you know rural, out. I don't like all that confinement. You know, where you can't do nothing but sit there. I told her, I said let me think about it. And my social worker, you know, they went on out and then my social worker came back. She said they decided not to let me come. She said, "you didn't seem too happy about it." I said "but I didn't have anything to be happy about, you know, you don't know where you're going. That's like going to Vietnam, you don't know where you're going."

      I: Well then, how did you decide to come here?

      R: Well they just - the social worker told me, she says "I got in touch with another one I've done business with, and they'll take you." She said "it's either you go there or you'll have to go to the shelter."

      In our study, we observed that the quality of life in Adult Care Homes for persons with mental illness was quite low. Cigarette smoking and television watching were primary daily activities. Residents were isolated from family and friends. There was little opportunity for residents to develop skills needed to live independently and almost no chance that residents could save enough money to get an independent residence.
      In general, rest homes are cheaper and less restrictive than state hospitals. Aside from a few anecdotes, there is little evidence that using rest homes as housing for persons disabled by severe mental illness is dangerous. Nevertheless, as pointed out by Beth Melcher of NAMI North Carolina, a fundamental problem is that Adult Care Homes are designed for elderly persons who are expected to become increasingly dependent over time, while the goal for many with mental illness is to become more self-sufficient.
     The social workers and psychiatrists who arrange for and authorize patients to live in Adult Care Homes wish there were better options. On the other hand, they are grateful that something better than a homeless shelter is available. Without rest homes, many persons with severe mental illness would be homeless or subject to unnecessarily long hospitalizations.
     Recently the state legislature passed a bill that is meant to improve care for persons with mental disabilities in Adult Care Homes by requiring that homes that claim to specialize in these services demonstrate their qualifications. Although various aspects of the new law have been widely criticized, a strategy to improve the de facto system that uses Adult Care Homes is wise. B
     ut it is not enough. Public money that could encourage the development of alternative housing arrangements is potentially available through the State-County Special Assistance for Adults program. The range of living situations supported by Special Assistance funds must be expanded to include supported apartments, housing subsidies, and group homes.