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A house is not a home: The great residential divide in autism care.
| Content Provider | Semantic Scholar |
|---|---|
| Author | Mandell, David S. |
| Copyright Year | 2017 |
| Abstract | In the United States, a debate about how and where to house adults with autism is dividing autism advocates. New rulings from the Center for Medicaid Services, which oversees the public health care insurance program for people living in poverty or with disabilities, has thrown this debate into sharp relief. The revised rules require that long-term care facilities paid through Medicaid waivers— a common financing mechanism to support adults with disabilities—house no more than four people, be dispersed in communities, and offer significant freedom of access to their residents (https://www.regulations.gov/document?D =CMS-2008-0035-0058). Many autism advocates have hailed this ruling as a civil rights victory in the service of inclusion and community participation. An equally vocal group is very concerned that this funding arrangement will make it difficult for more severely impaired adults who need round-the-clock care to find adequate housing. This debate echoes the one we have had in the United States for almost 200 years about how to care for adults with psychiatric and developmental disabilities. As we think through providing care for adults with autism, it may be worth revisiting our usually well-intended but often misguided history. My grandmother died in a psychiatric hospital in 1953, 24 years after she was institutionalized, most likely for post-partum depression. My father was told that his mother died in childbirth and learned the true story from a distant cousin 50 years after his mother’s death. My grandmother’s story is devastating but not unusual. In the mid-1950s, more than 1 in every 200 Americans spent at least one night in a psychiatric hospital (Grob, 1995). There were few effective treatments for serious mental illness and no community supports for people with intellectual disability. Thoughts, moods, and behaviors that differed from societal norms often were pathologized and resulted in institutionalization, even in the absence of significant impairment. The stigma surrounding people with psychiatric and developmental disabilities was such that isolating them was considered the best option (Fabrega, 1991). Many—but not all—of these institutions were horrible places (Grob, 2014). Academic treatises and investigative journalism exposed serious overcrowding and patient abuse (Archer and Gruenberg, 1982). Research gave evidence of the debilitating effects of institutionalization and of the inability of hospital staff to separate psychiatric disturbance from normal functioning (Braun et al., 1981). In the late 1950s and early 1960s, global sentiment shifted, typified by the Mental Health Act in the United Kingdom and the Community Mental Health Act in the United States. These acts acknowledged the autonomy that individuals with psychiatric disorders should be granted, made it more difficult to hospitalize people, and paved the way for dramatic increases in the availability of community-based mental health care. In the United States, widespread deinstitutionalization started in the early 1970s (Grob, 2014). Over the next two decades, hundreds of state psychiatric hospitals and centers for people with developmental disabilities closed. The move from institutional treatment to community treatment was supposed to solve two problems. First, long-term stays in psychiatric hospitals contribute to negative outcomes for people with psychiatric and developmental disabilities. The lack of intellectual stimulation, emotional reciprocity, and opportunities to engage meaningfully with the world around them made people worse. Ostensibly, previously institutionalized people now would participate more in their communities. Second, institutions and the practices that occur within them were hidden from public view, which led to little accountability and serious abuses. Moving treatment to the community would lead to greater observability and accountability. Moving mental health care to community clinics has not solved these problems. People with serious mental illness often live in what have been termed “psychiatric ghettos” or in poor neighborhoods with few opportunities for community engagement (Vick et al., 2012). Today, media exposés of abuses in community settings rival those of psychiatric hospitals a generation before. Complicating matters is that community services often are not up for the task of caring for individuals with more profound impairments. Care often is not evidence based, and community mental health staff positions have been deprofessionalized, sometimes in the extreme (Institute of Medicine, 2001). Many of those who left psychiatric hospitals swelled the ranks of the homeless (Fazel et al., 2008) and incarcerated (Fazel et al., 2016). These problems have caused some researchers to call for a return to more institutionalized forms of care, hoping for a more humane asylum than those in our past (Sisti et al., 2015). Today, publicly funded options for residential care for people with psychiatric and developmental disabilities are as flexible as they have ever been, ranging from relatively unmonitored apartments with 1–2 people to segregated farming communities with intensive staff-to-resident ratios, and everything in between. The general trend, often A house is not a home: The great residential divide in autism care 722101 AUT0010.1177/1362361317722101AutismEditorial editorial2017 |
| Starting Page | 810 |
| Ending Page | 811 |
| Page Count | 2 |
| File Format | PDF HTM / HTML |
| DOI | 10.1177/1362361317722101 |
| PubMed reference number | 28891330 |
| Journal | Medline |
| Volume Number | 21 |
| Issue Number | 7 |
| Alternate Webpage(s) | http://www.familiesspeakingup.com/wp-content/uploads/2018/04/mandel-autism-editorial.pdf |
| Alternate Webpage(s) | https://doi.org/10.1177/1362361317722101 |
| Journal | Autism : the international journal of research and practice |
| Language | English |
| Access Restriction | Open |
| Content Type | Text |
| Resource Type | Article |
