My name is Dr. Bill Jonathan, I represent Long Beach Community College. Thank you. Senator HARKIN. My staff has just informed me that when we arranged for the room, I wanted to make sure it was totally accessible, and that we had wide aisles so that people in chairs could come up and sit in the aisles; we were told no problem, and then all of a sudden this morning my staff tells me the Fire Marshal came in and said we've got to clear the center aisle. I had no knowledge of that. I am wondering about the ordinance. Why don't you bring your chair right up here? Come on up here. This is a ramp right here. We will move those chairs out of the way. [Applause.] The third panel. Our first witness, a long time friend, someone who has been to Washington many, many times, I just saw her yesterday—Judy Heumann of World Institute on Disability. Judy, welcome, and please proceed. STATEMENTS OF JUDITH HEUMANN, WORLD INSTITUTE ON Ms. HEUMANN. Senator, I would like to thank you very much for the opportunity to be appearing before the committee today, and thank you for the work that you've been doing on the Americans with Disabilities Act, and the leadership that you are taking in moving beyond ADA. I would also like to say to everyone in this room that you have really been a politician that I have truly admired because you have done more than just work on behalf of the rights of disabled individuals, but you have truly incorporated that philosophy into your day to day activities. I think many of us have very much appreciated the fact that in your last Senatorial campaign you involved disabled people in the most integral ways so that we were not behind the scenes; pieces of legislation that you could speak about, and I just really did want to publicly thank you for that. Senator HARKIN. Thank you. [Applause.] Ms. HEUMANN. I am here today speaking as the co-chair of the Consortium for Citizens with Disabilities which is a Washington, DC. based organization which has a task force on personal assistance services, and the National Council on Independent Living Personal Assistant Service Committee. I am also vice president of the World Institute on Disability which is a research and policy organization based in Oakland, CA which has taken on as one of its major areas of activity, work in the area of personal assistance services. We view personal assistance services as one of the next major civil rights issues which the Congress must address. Personal assistance services or what we sometimes call PAS, is the assistance of another person with tasks which a person would normally be able to do for themselves if they didn't have a disability. Senator, we proudly celebrate with you-not in the Rose Garden today but here in L.A-the anniversary of the signing of the Americans with Disabilities Act. We do need to look forward to those issues which the ADA has not addressed. Strong enforcement of the ADA and other pieces of legislation will enable millions of disabled people to pass through doors of opportunity into a world that has historically been closed to those of us with all types of disabilities. But for the millions of people with disabilities who need the assistance of another person to perform basic life activities, these doors will remain closed. Once again, people with the most significant disabilities will be forced to watch as others less significantly disabled enter into the mainstream of society. As I talk to you today about the needs of personal assistance services, I would appreciate it if you could think about what your life would be like if in fact you had a disability like mine or many of the other disabled people in this room. And I ask you to do that, not because we want you to view your life as being a tragedy if you were to acquire a disability, but rather for you to be able to look at how your life would be irreversibly altered. And many of us believe that if personal assistance services were in fact provided to people who needed it based on the number of hours that we needed it, that our lives in fact would not be handicapped because of our disabilities, and that we would no longer be victimized because of our disabilities. So I would like you to think about such things as what time you get up in the morning, how many times a day you drink liquids, how many times a day you go to the bathroom-although we are not supposed to talk publicly about toilets or bathrooms, all of my friends in this room can tell you I always talk about toilets and bathrooms. [Applause.] Because I can't go to the bathroom by myself as many other people can, and we have been very much told that we are not supposed to talk about things that are "of a personal nature." I do think that going to the bathroom is no more of a personal nature than many other aspects of our lives, and if we are not able to go to the bathroom when we need to, we can't do such things as participate in activities in public places, or be able to consider getting a job. I would also like you to think about how often you change your clothes. You get up in the morning and do you wear the same clothes all day, or if you have a function to go to in the evening, do you change your clothes. Do you drive a car. How often do you drive. How often do you clean your house. How often do you go shopping or cook. These are all very basic kinds of activities that many of us are not able to do, though nondisabled people can, just because we don't have access to personal assistance services that is affordable to us. My story today is a typical story to many of the people who are in this room. I had polio when I was a year and a half. I was in an iron lung for the first 3 months of my life, and needed assistance then as now because I am classified as being a quadriplegic which means I have limited use of my hands and arms, and I am not able to walk. So that resulted in my family having to do such things as assist me in dressing and bathing, getting in and out of bed, and when I was younger I did not have an electric wheelchair, and therefore I was unable to push myself more than short distances. Then as now there was virtually no personal assistance service programs available to help me or my family. My family and friends were my unpaid providers. They helped me get into bed, go to the bathroom, push my wheelchair, drive me around, cook my food, clean for me, take me to visit my friends. They all worked very hard at times to help me live a life like my nondisabled brothers and nondisabled peers. But in reality they were never able to meet all my needs. I learned as all of us in this room who are disabled have learned at a very early age, that I didn't have the right to do the same things the way nondisabled people did them. I learned that because I was disabled, I needed the assistance of another person, that I would have to carefully determine which of my needs were more important. I had to learn how to ask for assistance or beg for assistance. The help I was getting was voluntary. I knew what that meant at a very early age; it meant I shouldn't be too demanding, and that I should be thankful for whatever I got. I needed to always remember that without this voluntary help, my life would be more restricted than it already was. At the age of 5 this became true again when I was denied entrance into public school, significantly because I needed personal assistance services. It wasn't until I was 9 years old that the schools in New York began to provide basic assistance in the classroom, and I must underscore "basic." When I went to college, I could no longer rely exclusively on voluntary services, but again because there was no program, my family was forced to pay. They could only afford to pay for assistance for two to three hours a day, so again I had to begin to improve my skills on asking people to give me free help. I knew that one reason that I had been denied many jobs has been because employers were afraid that they would have to provide me with personal assistance services such as helping me go to the bathroom. It wasn't until I was in my 20's that I moved from New York and came here to California where we had a program which is better than the programs that exists in most states in home supported services, but I must underscore that it has major weaknesses also. But this program 20 years ago allowed me to see other people who were equally as disabled as myself and more disabled who were getting up in the morning at a time that they chose and moving more freely about in the community. One of the major problems with this and other programs like the home supported services, is that you have to be poor in order to qualify, and poor in order to be able to stay on the program. Paradoxically the American dream encourages you to overcome poverty, but this and most other programs require you to remain in poverty. In 1979 when I was offered a paying job, I truly had the choice of taking a paying job and giving up my benefits, or staying on ben efits. I needed the benefits but I also wanted the right to work, so I chose to go off my benefits and begin to work. But subsequently I have been spending an inordinate amount of my salary on my basic disability related expenses. Right now I earn about $43,000 a year; at least $10,000 a year is spent just on my personal assistance services expenses-that doesn't speak to the fact that my health insurance only covers $900 a year for technical aids which means that much of my money, my own personal money, is having to be spent on things like repairing my wheelchair. And when I have to get my next wheelchair which is going to cost about $8,500, I have no idea where I am going to get the money to do that. So, I do want to underscore the extraordinary expenses that not most people with disabilities, I think it is important to State that most people with disabilities do not have extraordinary costs, but what has not been able to come to the forefront is those of us who do in fact have extraordinary costs. We have continually been told to not discuss what these costs are, and to under-emphasize them. And I think many of us have finally decided that we are no longer going to stay in the closet not discussing appropriately the extent of our needs. I was raised to live the American dream of equal opportunity. I always thought that that would mean getting a well paying job, getting married, owning a nice house and a car, being able to go on vacation, being able to basically participate in society with my disability not being a handicap. But how can I and my other brothers and sisters be expected to reach this dream of equal opportunity without the assistance that we all need. For us, the American dream will begin to be achieved when we can drink what we want, go to the bathroom when we need to, when we can get in and out of bed when we want, when we have interpreter services, not just in public places, when we have reader services to read the materials that we need not just for on the job. I am not unique. Millions of people with disabilities require some sort of personal assistance services. Most of us exhaust personal and family resources, both financial and emotional. Some of us forced into dehumanizing institutions at great expenses to the taxpayer. As our population ages and medical costs soar, the current system will become increasingly more unworkable. We must create an affordable system which provides access to a full range of personal assistance services which maximizes independence and personal choice. Today, you and other members of the Congress are hopefully going to allow us to begin to discuss our needs in a more open and public way, so that we no longer have to be ashamed about the fact that we have to go to the bathroom, that we need assistance in being fed, that we need help in getting our coats on and off, and services of the like. Those of us in California and all across the country, truly welcome the fact that you have taken a leadership role in beginning to place these issues on the forefront of discussions, and we will very actively be willing to work with you on continuing to break down barriers. So that laws like the Americans with Disabilities Act, Section 504, and Public Law 94-142, are not just laws that will benefit people with less significant disabilities, but in fact will benefit all of us with disabilities. Thank you. Senator HARKIN. Judy, thank you. [Applause.] Excellent, Judy. Thank you very much. Another long time friend, Doug Martin, Special Assistant to the Chancellor at UCLA Doug, welcome. Mr. MARTIN. Thank you, Senator, for providing this opportunity to testify before your subcommittee on this, the first anniversary of the ADA. Thank you also for your outstanding leadership in making the ADA a reality. I want to speak to you today about the need to develop a new paradigm for our Nation's Social Security Disability Programs, particularly SSI, SSDI, Medicaid, Medicare and Attendance Services Program often provided under one of those titles, or under Title 20 of the Social Security Act. Paradoxically I can say to you that I am here today literally because of-and also in spite of those very programs. I would like to explain what I mean by that statement, by giving a personal account of my efforts to become gainfully employed, and also relay to you what I have discovered about the consequences of working and also marrying or being involved in an intimate relationship. This is a very complex and technical area, and I will try my best to summarize some of the problems. As a result of polio at the age of 5, I require the use of a respirator and also attendance services. When I came to California to begin my studies at UCLA, I discovered the great advantage of the availability of attendance services, and that made my studies possible and my independence possible. Along with that, I qualified for SSDI and SSI, Medi-Cal and Medicare. All of the programs designed to support disabled individuals. And indeed they did that. When I was a student, it would be hard to imagine that I could have survived, studied and completed my schooling without those programs. At the same time that I was a student, my educational expenses were borne by the California Department of Rehabilitation. With the goal that by providing me appropriate education, I could become a productive citizen and contribute back some of the investment that was made in me. When I completed my doctoral studies at UCLA in 1975, I discovered that I could not afford to take entry level jobs because of a thing called "substantial gainful activity," the definition of what it means to be disabled under the Social Security Act. Perhaps few people know that not only are there medical criteria for disability eligibility, but there is a work definition. Substantial gainful activity at the time I was leaving UCLA, was $170 a month. The ability to earn $170 a month meant that a person was |