Wednesday, June 12, 2013

Deinstitutionalization

Perhaps the best piece I've read about the long-term effects of the policy known as deinstitutionalization ran in the Washington Post today. Harold Pollack, a professor at the University of Chicago and a fellow at the Century Foundation, wrote an important opinion piece on the policy. He points out the disparity between how the developmentally disabled have faired versus how the mentally ill have faired since deinstitutionalization arose.

As someone who researches the history of psychiatry in the United States in the 20th century, particularly the state hospital systems (formerly referred to as insane asylums and eventually psychiatric hospitals) of the 1920s through deinstitutionalization, I find the topic quite obviously intriguing. However, there is a lot of information out there that has a political tilt and is of no help to an historian or researcher trying to understand the implications of deinstitutionalization. Pollack offers something that is entirely useful and trustworthy. I say trustworthy for one particular reason--Pollack's brother-in-law is disabled and thrives in a post-deinstitutionalization world. I find that I trust those who understand the pitfalls and positives of the world we live in since the policy went into effect because they live it. They see the long-term implications of the policy around them.

My own personal encounters with deinstitutionalization are not unlike those of Pollack. Pollack's brother-in-law was born into a culture that believed the best thing for the disabled was to place them in an institution and essentially forget about them. My uncle was born into that same culture and his parents were told that their best option was to put him in such a place and move on with their lives. They defied this advice and raised him at home until he was nine years old. He then spent a number of years, terrifying years, in a state hospital where he was neglected and treated poorly. Eventually he returned to his family and lived with his sister for many years until his care was more than she could attend to on her own. My family actually built a group home with the goal of taking care of him long term. Unfortunately, his needs eventually exceeded what the group home was designed for and he moved into an ICF/MR (intermediate care facility for those with mental retardation).

Pollack makes many great points in his piece, including the following:
"This story reminds us that good policy ideas aren’t self-executing. They require political backing for their eventual success, particularly when the ideas themselves aren’t completely right or when the resulting policies require mid-course correction."
Something that seems missing is any sort of commitment to the policy of deinstitutionalization by those who sponsored its creation in the first place, particularly the Republican Party at the state and national level.

I cannot recommend Pollack's piece highly enough. 

Even if you've never heard of or considered deinstitutionalization and the policy implications of a decision that was made and put in motion decades ago, you will find that the policy matters today. It matters as states, particularly red states with conservative governors and legislatures, slash Medicaid budgets (particularly portions of the budget that, for instance in Idaho, provide developmental therapy, rehabilitation, psychiatry and other services to the developmentally/intellectually disabled as well as the mentally ill). 

Every day in America we encounter the product of deinstitutionalization, often without even realizing it. Our tax dollars support the programs that care for those who were once institutionalized or who would have been institutionalized if born in another era. The tables at our favorite eateries might be cleaned by members of the IDD community who enjoy every opportunity to live their lives in as normal  fashion is possible for them. And it is very likely that you know someone or are someone who cares for a disabled family member or even a stranger, whether in your own home or at your place of employment in your community. It may seem a policy from another generation, but it will forever impact generations of Americans.

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