Bringing our people home - Part 1Santa Barbara NewsPress
California's State-Run Institutions for People with Developmental Disabilities
Bringing our people home - Part 1
6/27/00
There are 121 people with developmental disabilities whose home community is within the tri-counties but live in large state-run institutions, also known as developmental centers. Many other people with disabilities are displaced from their homes and communities because advocacy efforts to keep these centers open have negatively influenced funding for community supports.
There are five of these institutions in California where 3,800 people live. Fifteen hundred of these are on a waiting list for community placement. Some of the buildings are more than 100 years old, and together need $1.2 billion in upgrades to bring them up to code. The average cost to taxpayers for the support of each person residing in a developmental center is about $160,000. The centers will probably employ more than 8,700 people for fiscal year 2000-01, and are amongst the largest in the nation.
There are more than 162,000 people with developmental disabilities living in communities throughout the state at an average cost to taxpayers of $10,000 per person. Contrary to what is commonly understood, the majority of people with the most severe disabilities are living in communities throughout California, not developmental centers.
There are people that lobby for the continued operation of these institutions because they say it protects people from neglect and abuse. What they fail to mention in their lobbying is that most people are living in the community successfully.
Then there are people who believe these centers deprive human beings of choice, opportunity, participation and freedom and that home communities give people the opportunity to grow and develop.
A few years ago, advocates and parents of children with disabilities from the Alpha Resource Center, including myself, went on a guided tour of the 207-acre Lanterman Developmental Center campus located in Los Angeles County. More than 670 people live at Lanterman.
Knowing that the preservation of institutional living was the priority of some lobbiests , we needed to see for ourselves and at least try and understand.
The eyes of the 13 children in the pediatric acute care unit were lifeless. Most of them were on life support systems, lying in bed in a drug induced sleep with "I Love Lucy" blaring on every child's TV. The children have no views from the window, no dogs barking, no birds chirping, no children laughing, no mother stroking their hair.
After the acute care unit, we were taken to a room with white walls and no pictures where ten people in wheelchairs sat at metal tables counting screws from a white paper plate into a white paper cup. No dignity.
After the tour of Lanterman was over, we stood by the car silently, afraid to discuss what we saw, because it would make it that much more real and we couldnt even begin to understand why this was happening.
On the way home we shared with each other who we saw on our tour that reminded us of our own children. It was too hard to think of this anymore so we planned our strategy to educate the general public and public policy makers about the barriers that prevent people with disabilities from enjoying opportunities that life gives each of us.
We have a very long way to go to bring balance and equity to our system, but progress is in the making and it will directly influence lives in our own community and bring our people back home.
Terry Boisot is the parent of a child with disbilities, serves on the board of directors of Alpha Resource Center of Santa Barbara and The Arc of the United States. She is concerned about all disability matters and welcomes comments at [email protected]
All of Terry's columns are at
http://news.newspress.com/index/disability.html