We Don't Need "Modern Asylums": We Need to Make Deinstitutionalization Work for People with Intellectual and Developmental Disabilities

By Pollack, Harold; Bagenstos, Samuel | The American Prospect, Summer 2015 | Go to article overview

We Don't Need "Modern Asylums": We Need to Make Deinstitutionalization Work for People with Intellectual and Developmental Disabilities


Pollack, Harold, Bagenstos, Samuel, The American Prospect


A move is afoot to undo one of the great social policy successes of the past half-century--the commitment to serve people with intellectual and developmental disabilities in their homes and communities, rather than in institutions. Although those who propose to "bring back the asylum" point to real gaps in our current community services, their proposed solutions are misdirected. Instead of returning to the flawed models of the past, we need to strengthen community-based services that promote independence and integration, even for those with very significant disabilities.

Fifty years ago, parents of children with intellectual or developmental disabilities were often advised to institutionalize those children for life. In the absence of community supports and basic services, institutionalization often seemed to be the only alternative.

In theory, institutions provided care and protection. In practice, many were unsafe, unsanitary, and marked by abuse and neglect. The Willowbrook State School on Staten Island in New York City became infamous in a 1972 Geraldo Rivera broadcast that showed ill-clothed and underfed residents, crowded in shadowy rooms with nothing to do all day. Lawsuits and journalistic exposes uncovered similar institutional abuses across the country. And even institutions that were not so marked by neglect denied their residents basic day-to-day freedoms that many of us take for granted, such as the opportunity to choose what, when, and with whom to eat a meal, or even when to turn out the light at night.

Thanks to profound changes in policy and standards of care, the vast majority of Americans living with intellectual or developmental disabilities now live in their own homes, with family members, or in small-scale group homes. Particularly among young people, the effects have been dramatic. In 1977, an estimated 54,000 children and youth diagnosed with intellectual or developmental disabilities lived in large institutions. Families and policy-makers were understandably concerned that many of these young people, who often had serious accompanying physical or psychiatric disabilities, required services that could only be provided at large public institutions. Yet, by 2008, in large part because of inclusive educational services, better medical care, and improved family supports, the number of institutionalized young people declined by roughly 97 percent, to 1,869.

Those changes resulted from hard work by concerned parents and professionals, policy-makers and public interest lawyers--and not least by people with disabilities themselves, who organized self-advocacy groups that pushed for opportunities to live full lives in the community. We should be proud of their achievements. They have helped hundreds of thousands of Americans live safer, happier, more independent lives.

Consider two examples, drawn from our own personal and professional lives. Harold's brother-in-law Vincent lives with significant intellectual disability as a result of fragile X syndrome. Fifty years ago, his parents bravely resisted medical advice to have Vincent placed into institutional care. He now lives in a small group home, participates in a broad range of community activities, and leads a life that was all but inconceivable when he was born.

In 2011, while Samuel was serving as principal deputy assistant attorney general for civil rights, the United States Department of Justice issued a report on Virginia's still heavily populated institutions for people with intellectual and developmental disabilities. The Justice Department found, among other things, that those institutions exposed residents to "repeated accidents and injuries" and that staff physically restrained residents "as an intervention of first, rather than last, resort."

In January 2012, Virginia entered into a comprehensive settlement with the Justice Department, which will ensure that Virginians with intellectual and developmental disabilities receive services in their homes and communities. …

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