Testimony on CIL, A.M. and P.M. Sessions of CIL Hearing
A.M. Session of CIL Hearing
House of Rep Subcommittee on Select Educ. Hearing
1/5/78
Berk. Calif.
ED ROBERTS: Good morning. It's really a pleasure for me to be here this morning to see a Congressional hearing on Independent Living, to have it at the Center for Independent Living which has played such a large role in my own life, as well as many thousands of disabled and elderly people in this area.
I think about what CIL means to me and what it meant to me when I lived here, not as an Executive Director, but as a disabled person. Thru the times I had to find new help thru attendants, the times I had struggles with welfare agencies and other agencies; and how we began to learn together to make the kinds of changes in the system that allowed us to live as independently as possible, to make the kinds of choices that each of us has to make, not only about career goals, but about how we're going to have food the next day and basic survival kinds of things.
I moved two years ago away from Berkeley to Sacramento, the State Capitol, thru the request of the Governor, and found that I worked very well, but I had a hell of a time maintaining my employment because it was hard to find attendants, because problems - wheel-chair problems would come up because equipment is made so shoddily - often grounded me, and I wound up having to buy tremendously expensive duplicative equipment because I couldn't keep going each day. I knew that if I didn't back myself up it would wind up costing more than four thousand dollars to do that - I wouldn't be able to do my work day-to-day, that it was that critical to my existence. And you think about what's happening around the country
It is extremely difficult for us to work with the most severely handicapped. We have this tremendous pressure for substantial outcome and goals of the program. We need to talk about a dual system, one that assumes in the beginning, that every person who comes into the system has a vocational potential. If not full-time, then part-time vocational potential. If we don't do that - and you and I know from our own experience what work means. Work often means positive self-identity, it means something to commit yourself to and to do. For me, that continual services must start for the severely disabled with comprehensive independent living services. Without that, there is not that future for vocational goal. I've seen very few people in my experience in this state that cannot have the vocational goal, in one way or another. I wanted to begin with a philosophy and belief in people that comes from my gut, a belief that there are very few people in this society that should be written off, and we in California, working with Federal Government and CIL type programs, and other community leaders, intend to show that we have made a mistake in the course of these programs in that we have left out millions of people who lead lives on welfare and on dependants, who could lead productive lives, and be an important force in this society as a part of each of our communities. Thank you very much.
MR. CHAIRMAN: Thank you, Ed. John.
JOHN: Thank you, Mr. Chairman. Everything you said was interesting. One thing struck me and I'd like you to go back to that because we're always looking at programs, goals, and so forth. You indicated something, obviously in your experience, has led you to believe, properly I'm sure, that there's what you referred
ROBERTS: I - I intend to elaborate on that later this afternoon, but just quickly - the rehabilitation program, vocational rehabilitation program, has been geared and sold to the Congress and the country based on the amount of money that it returns to the taxpayer. What we call cost-benefit. Well, when you have people longer in the program, let's say some people could be on this continual moving toward a vocational goal for ten years, as I was in my own rehab program. When you have many cases like that you get substantial pressure from the system to take easier cases, cases that can move through the system and keep up the high production rate. And it's - in many ways you've got to have goals and I really believe in outcome and in measuring outcome, but if that outcome is discriminatory towards the more severely disabled we have a national commitment to work toward deinstitutionalization and really freedom for these people. Then we need to take a hard look at the law and find out how we can make - how we can expand that continual, I think. Take some of the pressure off the rehab agencies by setting up a stream of - called independent living - because for many of us it is very difficult to decide on where you want to go vocationally when you don't know if you're going to survive day-to-day, when you're not confident that you can find that help you need or get that wheelchair repaired, or get to and
JOHN: Are you saying then, I gather from your response that probably the traditional government outlook of, you know, taking the easy cases, you got five people and you take a look at the five and the one looks like he can - he or she can be rehabilitated, retrained, helped, put out independently in a year or so, that there's some preference to that person over the one who might take five, ten, fifteen years to achieve the same goal? Is that basically what you're saying?
ROBERTS: Oh, absolutely, absolutely.
JOHN: What - you said you were ten years. Could you give us a little bit of your experience? We've got a lot of witnesses, we don't want to take a lot of time I know, but I'm so anxious that your own -
ROBERTS: I confess that at the time my biggest fear was - I was 14 when I got polio, and when I was 14, 15, 16, my biggest fear was what would happen when my parents died. I was so totally involved in those kinds of survival issues that there was no way -
JOHN: See you as an end product somewhere down the line, is what you're saying.
ROBERTS: Yeah, right, right. And I respect that opinion because 10 years ago, 20 years ago, most guadriplegics were written off as not feasible in any way. But we began to demonstrate over a period of years that as we begun to include more people, more of these people became successful, many more. Then we began to develop some models, people who were successful, and that experience is snowballing now in California, especially. But the critical thing is the comprehensiveness of the programs like this, because we see around the country many transitional living or housing arrangements, that is a community-based program that goes out, that can help find housing for someone so they can begin with independence. We'll talk a little bit more about some of the state programs also, like homemaker chore, which make this possible and feasible to do.
JOHN: Thank you.
ROBERTS: You're going to hear more about this this afternoon.
JOHN: Thank you. I know I speak for George when I way how pleased we are and I think everybody's pleased that there are trend-setters and pace-setters and trailblazers like you. Thank you very much.
ROBERTS: Thank you very much.
Courtesy of The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000; http://bancroft.berkeley.edu
http://content.cdlib.org/view?docId=hb9d5nb3fc&brand=oac4
Title: From Edward V. Roberts Papers: Testimony on CIL, A.M. and P.M. Sessions of CIL Hearing
By: Roberts, Edward V.
Date: 1/5/78 (issued)
Contributing Institution: The Bancroft Library. University of California, Berkeley. Berkeley, Calif., 94720-6000; http://bancroft.berkeley.edu
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