Center for Independent Living gets people into the community
THE automatic door to the former BMW showroom on Telegraph Avenue swings open about every 15 seconds with a client coming in. This is the Center for Independent Living, formed in 1972 by Ed Roberts and Phil Draper. Based on the Disabled Students' Program at the University of California, the idea was that with attendants and some assistance in getting benefits, just about anyone, regardless of disability, could live independently. This rabbit warren of partitioned offices is the granddaddy of more than 250 similar centers around the United States and in 33 other countries that have helped hundreds of thousands of people with disabilities become self-sufficient.
``Our struggle is to break loose from old ideas,'' says Mr. Roberts. ``The struggle most have now is that in the institutions set up to take care of us, disabled people have no basic rights, no ability to go out and take on our own lives. That perpetuates the dependence.''
The centers arrange for benefits, provide housing and transportation referral, attendant care, peer support, legal advocacy, deaf and blind services, and job coaches to assist people at work who have mental retardation. They teach independent living skills: managing time and money, cooking, training attendants to do personal care. Classes are taught by professionals who have disabilities and live independently.
``Before this, severely disabled people were relegated to nursing homes and institutions,'' says Michael Winter, the director of CIL. ``Now people who can move their heads up and down can live independently.''
The independent-living philosophy represents a radical departure in the way people with disabilities are perceived, its proponents say. The traditional model, they say, views them solely on the basis of their sickness or injury. Control is in the hands of the professionals. The independent-living movement puts control in the hands of the people with disabilities and views them as whole, capable individuals with a variety of specific needs.
But some parents of severely retarded adult children who are now institutionalized say that as more disabled people are released, institutions will shut down and release their children who, they say, cannot live on their own.
``That fear is being instilled in people by medical and rehabilitation people who do not want to let go,'' Mr. Winter says. ``There's an incredible amount of resistance. It's not the medical profession I'm slamming, it's the idea that they can say what people can be or not be.''
Not all rehabilitation professionals feel this way.
The movement was viewed as ``heresy'' when it started, but today ``it's considered conventional wisdom in the rehabilitation community,'' says Gerben DeJong, director of research at the National Rehabilitation Hospital in Washington, D.C.
But independence is not cheap. Roberts's attendants, for example, cost a total of $3,000 a month. Because of his salary, he's not eligible for state funds. But the MacArthur Foundation award he received in 1984, which will pay him more than $200,000 over a five-year period, helps. ``I realize there is a very small number of people who need 24-hour care,'' he says. ``Why can't that be done in the community? Why build large buildings, keep them in hospitals at a cost of $25,000 a month, if we can put in a community system at $4,000 to $6,000 a month that would maximize their potential?''
Currently, 5.9 million people in the US who live at home, in nursing homes, or in other institutions use the assistance of at least one other person, according to the World Institute on Disability, in Berkeley. But only 850,000 receive any financial assistance from publicly funded programs for home-based care.
Alabama, California, Massachusetts, Minnesota, Montana, and New York have personal assistance programs, but they are limited by age, kind of disability, or hours of service. Half serve only people who are poor, which creates a disincentive to work.
The World Institute on Disability, under contract to the National Council on the Handicapped in Washington, D.C., has drafted a bill that would create a national independent living-oriented personal-assistance program.
David Lewis, CIL's community-relations coordinator, says, ``Nine years ago I wanted to be independent, but I never thought it would happen.'' Mr. Lewis has a neuromuscular impairment that restricts his mobility. ``I lived with my family for 28 years. The center has given me the opportunity to fulfill my dreams and chart my own course.''
Next Friday: Access to public transportation.