Monday, April 9, 2012

Society Has Come a Long Way on Disability Front

This is a heartening story about dedicated people effecting meaningful change for a clearly definable problem.  Yes Virginia, it can be done.

In 1960, social problems had not been addressed or at best they had succumbed to ill considered fixes that often created a larger problem.  This story is about the disability sector in which often otherwise able individuals were trapped into a storage facility rather than a support facility.  Sometimes that is really the only choice.  I have personally worked with the hopelessness of severe retardation.  The worst come to the institution because their natural caregivers are simply unable to cope at all.  In fact, the worst cases are also difficult for trained staff to handle.

Yet the present regime struggles to make the institution the true last resort.

The system is still evolving and I see the time coming in which most will have a home contributing as best they can while fully supported by the community in which they reside.  Today, we are visibly well on the way.

Disabilities Field, Society Has Come a Long Way

New Ways of Thinking About People

by Steven Reiss, Ph.D.

They really made a big difference!

Published on April 4, 2012 by Steven Reiss, Ph.D. in Who We Are

In 1950 a child born with a developmental disabilities had no chance. In those days doctors suggested to parents that it might be best to just let their child die in the hospital.

At home in the neighborhood the other children made fun of them. Schools didn't want them. Nobody wanted them.  There was no special education field to speak of. Children were shipped off to large state institutions where they wasted away with custodial care.

In 1969 I was an intern in clinical psychology assigned to help a six-year-old girl diagnosed with autism. Annette didn't do much except scream. According to her records, she lacked language and understanding. None of my supervisors had any idea what to do to stop her from screaming. When she screamed she would dig her fingers into her neck and bounce up and down banging her armpits into her knees. She had deep abrasions and infections from the self-inflicted damage.

After working with Annette within an applied behavior analysis paradigm, I managed to reduce her screaming significantly. One day Annette told me she didn't want to scream anymore. That was when I learned she could talk. This is not such a happy story, however, because after I had had some success in improving her behavior, I discovered there was no place for her to go except back to the miserable institution in which she lived.

How things have changed!

I met Elizabeth Boggs at an annual conference in 1985. In the 1970s she was a force in organizing parents and getting the Arc of the United States going. Elizabeth and her parents had organized well enough to get the Congress to pass a bill funding special education, but they feared a veto from President Nixon. So Elizabeth joined forces with Elsie Helsel (United Cerebral Palsy), because Elsie's mom knew Richard Nixon. Mom delivered. Nixon signed the DD Act. I met Elsie in 1991 when she told me the story.  It is how "developmental disabilities" came to be: Elizabeth (intellectual disabilities) plus Elsie (cerebal palsy). 

The DD Act opened the federal spigots for funding for special education. The schools became responsible for educating all children, including those who had disabilities. Closed doors began to open like never before. 

In 1982 David Braddock started public policy analysis in the field of developmental disabilities. At the time I supervised him. When he first told me what he wanted to do, I had little idea of how important the work would become. But I knew Dave is sincere and brilliant.  

Braddock's data showed that the community had 50% of the people but only 10% of the money. The advocates were successful in moving people out of institutions and into the community, but they had less success in moving the money. Dave went on collecting data; he travelled up and down the land presenting the data to state legislative committees and federal agencies; and the money flows corrected. The leaders of the disabilities field didn't just close institutions; they also built up community services.

The lawyers in the field, with the parent advocates, closed institution after institution. Community services were created. Ruth Luckasson made a difference reforming the criminal system. A group of psychiatrists—Frank Menolascino, Irving Philips—plus Rob Fletcher—helped make possible serving people with a "dual diagnosis" in the community. This further weakened the institutions.

Today a child born with a developmental disabilities will be served in the community. What a legacy for the scores of advocates and professionals who were in the trenches the last 30 years or so.

Some have suggested it was the tide of history that led to so much change. I hear some say that it all would have happened even without them. I disagree. Sure history was going to close the institutions sooner or later, but it happened so fast, and the community service system was built so fast, that I think it is a credit to all those who participated—all the advocates, the dedicated professionals, and the people who created the community organizations.

Life has changed dramatically for millions of people.  I am fortunate to have been a witness, and I learned a lot from those who led the social change. 

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