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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


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and what's happening here in California. California's become literally a model of how even the most severely disabled people can become independent, can begin to learn how to take charge of their own lives; and this concept is so key - this movement has come directly from our experience; from experience of trying to survive away from the institutions, away from isolating experiences. So it becomes for me an even more powerful kind of argument. All across the country communities, and especially people with disabilities, are looking at how to import this concept to their own communities. We know it can be - we know these can be duplicated. When I became Director we began using rehab innovation expansion dollars, trying to set some additional models up, some additional programs, and we funded nine additional ones. Their share of this type of programming is community funding and the dedication of people with disabilities, and their friends, have founded five or six others. There are many others in the planning stage in this state. I think it won't be long before we'll see, especially if we can talk later about additional resources, that each community, and I would hope within each of our districts, there will be this kind of resource, not only to rehabilitation, but to our regional centers to help mentally disabled with the basic philosophy that no one should be written off in this society, that the disability itself is not the prevailing factor. The prevailing factor, and the most difficulty that people with disabilities have, is the underdevelopment of our communities and of our society. Not only underdevelopment in terms of architectural barriers, or in terms of services, but the underdevelopment in terms of attitudes. The most paralyzing thing for most of us is that we're seen as much more limited than we really
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are, and the potential there, and we've learned now from a project called the California Project, which is working with the most severely retarded, those people whose IQ's are not measurable basically and often who don't speak, we are finding with new training techniques and with positive attitudes towards the future for these people, that they can learn the most complicated kinds of tasks. That once again because - maybe because we wrote them off, people jump up and let us know that you're wrong, that we do have abilities - and this project - and I think a new attitude in the State of California, a new look at the old myths. Myths are crumbling so the people are beginning to become more active in their own behalf. There are three important elements I think in this process-this independent living process. One is that people come together, all differing disabilities come together and learn in time from each other, so that we're not constantly caught in categorical kinds of aid - where you're aiding a cerebral palsy person, or a retarded person, or mentally ill person - but people come together and can talk for each other and about each other's experience. We need to respond to the needs of the disability, not to the category of the disability. That's a key concept, I think, because many of us have very similar needs, and it's not so difficult to build on elements for disabilities like the deaf or the blind that have special kinds of needs, special communication needs. Really, for me, this has got to be the beginning or middle course of a long - I guess you'd say a life-long project, first to free myself and then to help free all people with disabilities; and I think for the rehabilitation agency. We'll talk more about this later in the afternoon.


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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


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to, a pressure of achieving goals. Would you give me a little fuller explanation of that because I know so often in Washington we say if we're going to spend a million dollars and something doesn't happen right away, something's wrong with it, and is there that type of urgency or goals that are achieveable? Just what did you mean by that? That's an interesting phrase.

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


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from places you want to go. It would help rehab agencies tremendously to have equal mandate toward independent living and I would suggest that your cost-benefit in the traditional way would be - still be tremendously high, but that it will be a longer-term payoff, especially in terms of severely disabled, will be deinstitutionalization. In our state it costs $22,000 a year to keep someone in a state institution. With programs like this and programs like the rehab program, we can do that - do the total job with a person in as much independence as possible for much less, perhaps half that.

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 -


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even when I was 17 it was very difficult to think about vocation. I initially had to fight my way into the rehab program. Obviously rehab has been changing over the last few years. But it was difficult for a counselor to see me as vocationally feasible.

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.