Later On

A blog written for those whose interests more or less match mine.

Deinstitutionalization was a complex process

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And it had some benefits as well as obvious drawbacks. Harold Pollack gives a potted history in the Washington Post:

If you ask any social policy expert to describe a well-intentioned initiative that didn’t work out as planned, the word “deinstitutionalization” will probably appear in her response.

This conventional wisdom is vastly oversimplified. In a recent law review article,University of Michigan disability expert Samuel Bagenstos notes that the broad set of policies designed to move individuals with disabilities out of large institutions into family- or community-based settings was more complicated — and often more beneficial — than is now remembered.

On the whole, deinstitutionalization improved the lives of millions of Americans living with intellectual and developmental disabilities (I/DD) — albeit with many exceptions.  These policies allowed people to live with proper support, on a human scale, within their own communities. Second, deinstitutionalization was far less successful in serving the needs of Americans suffering from severe mental illness (SMI) — again, with many exceptions.

Consider the life trajectories of two people affected by these policies. The first man, Vincent Perrone, is my brother-in-law (on the right). His intellectual disability arises from fragile X syndrome. For 38 years, my in-laws Janice and Greg Perrone cared for him, right up to the day Janice died. Then Vincent moved in with us. He now lives in a nearby group home.

Vincent’s pediatricians advised Janice and Greg to institutionalize him. My in-laws defied this advice. This was a brave and difficult thing to do. Had Vincent’s school-based services, sheltered workshop, and other supports been unavailable, he probably would have languished in the back ward of some state home. He’s more functional, much happier, and much better off in virtually every way because his parents chose a different path.

Of course, many people experience serious difficulties. I’ve written at length about these challenges. Some 730,000 people with intellectual disabilities live with a caregiver over the age of 60. Many of these individuals will outlive their caregivers. Much must be done to address this looming challenge. The variable quality and cost-effectiveness of community-based services, the institutional bias of Medicaid benefits for people with complex conditions, and the low pay and uneven training of the direct care workforce are major concerns.

Still, the historic progress is striking. The number of Americans with intellectual disabilities who live in large state institutions declined by 85 percent between 1965 and 2009, including a 98 percent decline in the institutionalized population of children and youth. People live on a more human scale, too. In 1977, the average number of persons per residential setting was 22.5. Now the average is about 2.5.

Beyond the benefits to specific individuals, the cumulative movement of hundreds of thousands of people out of institutions into their own communities changed America. Not long ago, people with intellectual disabilities were effectively barred from the public schools, workplaces, summer camps, and more. In a million ways large and small, people with intellectual disabilities were pushed to the margins. The implicit message that they needed to be protected from the rest of us — or that we needed protection from them — was incompatible with the dignity of equal citizenship. Segregation also encouraged ignorance and fear. Few people had the personal experience to offset inaccurate or freakish media images of intellectual disability.

I never met the second man, Paul Flannery, depicted below. . .

Continue reading. The article certainly helped me reconsider my own judgments, though clearly our mental-health facilities are sadly underfunded, but of course I understand that it’s very important in the eyes of many that the very wealthy not have to pay taxes.

Written by LeisureGuy

12 June 2013 at 10:16 am

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