STATEMENT OF ROBERT E. BATON, PRESIDENT, GREATER HARTFORD ADVOCATES FOR CHANGE, WETHERSFIELD, CT Mr. BATON. My name is Robert E. Baton, Jr. I am the president of the Greater Hartford Advocates for Change. I speak for 80 of our members in the Greater Hartford area who are committed to making Greater Hartford a more accessible place.

The transportation issue is of importance. I think transportation, particularly for those who do not make enough to own a car, public transportation is crucial, whether you are disabled or not. It is even more crucial if you do have a disability because you have to compete in order to get ahead. So, in regard to transportation I would urge that the law be adopted, unamended.

Thank you very much.

Mr. OWENS. Thank you very much. I think one of the great benefits of these hearings is we discover the tremendous amount of talent among us. And the three of you are examples of the resources that we have to wage this fight. Thank you very much. Mr. BATON. Thank you.

Mr. OWENS. The next panel is Laura Nicholas, New Haven, CT; Nancy Durkin, executive director of CILSC-you will tell me what that is later, Stratford, CT; Marcie Roth, Danbury, CT.

Are we missing somebody? Is Ms. Nicholas missing?

Ms. DURKIN. Yes. She has not checked in, yet.

Mr. OWENS. All right. Ms. Durkin.

STATEMENT OF NANCY DURKIN, EXECUTIVE DIRECTOR, CILSC, INC., STRATFORD, CT

Ms. DURKIN. Thank you, Mr. Chairman. I want to introduce myself as Nancy Durkin, the executive director of the Center for Independent Living of Southwestern Connecticut. I have been actively involved with the disability rights movement for over 10 years and have seen numerous cases of discrimination. In spite of the many different pieces of legislation that guarantee equal access, people with disabilities are still regularly subjected to biased act. And I firmly believe that the ADA will help to eliminate such practices.

I would like to take this opportunity to discuss some of the issues in the act that I feel are very crucial. First is the definition of discrimination. This is a broad definition and encompasses situations which a person with a disability is subjected to unfair and unnecessary discrimination. This global definition which will finally address the concerns of those people who have slipped through the cracks and this will provide the scope of coverage that other civil rights acts offer.

I also want to address the issue of communicable diseases. During the past 5 years, the general public has learned more and more about communicable diseases, especially Acquired Immune Deficiency Syndrome, AIDS. During the past year, various court rulings have clarified that those individuals with AIDS are protected under section 504 of the Rehab Act and, therefore, are considered disabled. This bill will lend strength to this fact. People with AIDS have faced horrific incidences of discrimination. People have been run out of their homes, jobs, schools, and communities be

cause of fear and misunderstanding. And, in many cases, people have been ridiculed and denied services from the medical profession.

I also wanted to address the issue of insurance, but I heard your comments earlier. And I would just encourage us all not to lose sight that insurance companies regularly do discriminate against people with disabilities and we do need to address that issue in the future.

All of us in some way or the other are affected by disabilities: ourselves, family members, coworkers, friends, neighbors may have a disability. Because the issues people with disabilities face have been consistently neglected for so many years, it is difficult and uncomfortable to admit that discrimination is still actively practiced. In my family, discriminatory behavior has been denied. For example, my mother was excused from jury duty because of her severe hearing loss, denying her right to fully participate as a citizen. My father's emphysema is greatly aggravated when he goes to a town meeting because the handicapped parking is a block away.

I was told for months that I have emotional problems when, in fact, I have chronic fatigue syndrome and cannot physically work a full day.

I have worked at the Center for Independent Living in Southwestern Connecticut for 8 years. During that time, I have witnessed some of the most outrageous cases of discrimination which I thought were no longer possible in this country. One woman with a rare physical disability married a man in the Navy and when she got pregnant, she had to use Naval medical facilities. She was told by the Navy doctors that no one with her disability had lived to have a child and if the pregnancy did not kill her, the child would be severely retarded and physically disabled. She was then advised to have an abortion. She requested consultation with specialists at Yale New Haven Hospital. The Navy refused to pay for this consultation for several weeks. She eventually went through the Yale clinic, gave birth to a very normal girl and was back to work in less than 4 weeks. This woman worked at an independent living center and knew her rights, but because of the discriminatory behavior of the medical staff, she almost gave in to what they were proposing.

I have submitted discrimination diaries out at the front desk and I hope you will have the opportunity to review them.

As I mentioned, I am from lower Fairfield County and, therefore, represent over 18,000 disabled people. We could only bring a small group of people here today because of the lack of transportation. Many of our consumers live in nursing homes or with their families because of the lack of affordable accessible housing in Fairfield County. Most of them are not employed because they are too disabled for traditional rehab services or employers are unwilling to take the chance or make the necessary modifications. These are very basic issues in a person's life. Transportation, a home and a job. None of us can say that discrimination is a thing of the past when people still do not have access to the commonplace rights most people take for granted. Thank you for allowing me this opportunity.

[The prepared statement of Nancy E. Durkin follows:]

I want to thank you for the opportunity to provide testimony. I have been actively involved with the disability rights movement for over ten years and have seen numerous cases of discrimination

In spite of the many different pieces of legislation that guarantee equal acess, people with disabilities are still regularly subjected to biased acts. I firmly believe that the Americans with Disabilities Act of 1988 will help to eliminate such practices and is a much needed bill

I would like to take this opportunity to discuss some of the issues in this Act that I feel are very crucial First is the definition of discrimination. This is a broad definition and encompasses situations in which a person with a disability is subjected to unfair or unnecessary exculsion. This is a global definition which will finally address the concerns of those people who have 'slipped through the cracks. This will provide the scope of coverage as the other civil rights acts.

I also want to address the issue of communicable diseases. During the past five years, the general public has learned more and more about communicable diseases, especially Aquired Immune Deficiency Syndrome (AIDS). During the past year, the various court rulings have clarified that those individuals with AIDS are protected under Section 504 of the Rehabilitation Act and therefore, are considered disabled. This bill will lend strenght to this fact. People who have AIDS have faced horrific incidents of discrmination People have been run out of their homes, jobs, schools, and communities because of fear and misunderstanding. And in many cases, people have been ridiculed by and denied services from the medical profession

People with disabilities are regularly discriminated against by insurance companies. I believe that this issue should be specifically addressed in the Americans with Disabilities Act of 1988. Not only are disabled individuals denied insurance but employers who have hired disabled workers and want to provide medical coverage are often told that the insurance company does not accept individuals with 'pre-existing conditions.' I recognize the fact that insurance is based on the odds and as a result discrimination occurs. However, a disability does not and should not automatically place an individual into a high risk category, and therefore, is uninsurable. People with disabilities face the same risks of accidents, illness, or theft as everyone else. This legislation presents an excellent opportunity to tackle one of the largest discriminators in this country. Let us not lose sight of the purpose of the Americans with Disabilities Act to eliminate discrimination against people with disabilities.

Smoothing the path to independence for people

with physical or mental disabilities.

All of us, in some way or the other, are effected by disabilities. Ourselves, family members, co-workers, friends, neighbors, etc., may have a disability. Because the issues disabled people face have been consistently neglected for so many years, it is difficult and uncomfortable to admit that discrimination is still actively practiced. In my family, discriminatory behavior has been denied. For example, my mother was 'excused from jury duty because of her severe hearing loss denying her right to fully participate as an United States citizen. My father's emphesema is greatly aggravated when he goes to a town meeting because the "handicapped parking" is a block away making it extremely difficult for him to participate in local government. I was told for months that I had emotional problems when in fact I have chronic fatigue syndrome and cannot physically work a full day.

I have worked at the Center for Independent Living of Southwestern Connecticut, Inc. for eight years. During that time, I have witnessed some of the most outrageous cases of discrimination which I thought were no longer possible in this country. One woman with a rare physical disability married a man in the Navy and when she got pregnant she had to use the naval medical facilities. She was told by Navy doctors that noone with her disability had lived to have a child and that if the pregnancy didn't kill her, that the child would be severely retarded and physically disabled. She was then advised to have an abortion. She requested a consultation with specialists at Yale-New Haven Hospital The Navy refused to pay for this consultation for several weeks. She eventually went through the Yale clinic, gave birth to a very normal girl and was back at work in less than four weeks. This woman worked at an independent living center and knew her rights, but because of the discriminatory behavior of the medical staff, she almost gave in to what they were proposing. I have brought with me 'discrimination diaries' that we have been collecting at the center, I hope you will take some time to read what these constituents have experienced.

As I mentioned earlier, I work at an independent living center in lower Connecticut ! speak on behalf of the over 18,000 disabled people in our catchement area. We could only bring a small group of people here today because of the lack of accessible transportation. Many of our consumers live in nursing homes or with their families because of the lack of affordable, accessible housing in Fairfield County. Most of them are not employed because they are too disabled for traditional rehabilitation services or employers are unwilling to take the chance or make the necessary modifications. These are very basic issues in a person's life: transportation, a home and a job. None of us can say that discrimination is a thing of a past when people still do not have access to the commonplace rights most people take for granted

Thank you again for allowing me this opportunity to submit this testimony in support of the Americans with Disabilities Act

Mr. OWENS. Thank you. Ms. Roth.

STATEMENT OF MARCIE ROTH, SUPERVISING ADVOCATE, WE

CAHR

Ms. ROTH. Hi. My name is Marcie Roth. I am the supervising advocate of We CAHR, an organization which offers advocacy services to people in western Connecticut who happen to have disabilities. Last year, We CAHR provided these services to over 850 people. I am also a member of the State of Connecticut Independent Living Council and I chair its planning committee.

I wish to thank the 113 Representatives and 25 Senators who are truly representing the wishes of their constituents by cosponsoring this bill. Clearly, it is time to insure that those of us with disabilities are afforded the same rights protection that other minority groups now enjoy.

I wish to remind you that many of us have hidden disabilities. We often risk discrimination by the very act of disclosing our disability. Once disclosure is risked, we have little recourse when denial of accommodation and exclusion occur.

For those of us who have a communicable disease, this bill is crucial. As with other medical diagnoses, communicable diseases are often misunderstood and their transmission potential is usually sensationalized in a most misinforming way. The effects of communicable disease vary, but discrimination is the one effect which is both catastrophic and preventable in every case.

People with disabilities experience the most blatant discrimination of all at the hands of the insurance industry. I know that you have made some comments about the insurance industry, so, I will not continue with that part of my testimony.

Mr. OWENS. No. I did not mean to restrict testimony at all. Go right ahead and include it.

Ms. ROTH. We must specifically include insurance companies in this act. Not only is private insurance generally denied most folks with disabilities, but those lucky enough to obtain private insurance find the items crucial to maintenance of function and optimum health are categorically denied or provided only once over a person's lifetime.

Recently, a little girl was born in Connecticut and it happens that she was born without arms. She was fitted with her first pair of prosthetic arms before her first birthday. Her insurance company will only provide one set of prosthetices in her lifetime. Her family will have to purchase the subsequent prosthetices. She will need her arms replaced yearly until she stops growing and then periodically for the rest of what is expected to be a long and productive life. It is when she is not wearing her prosthetices that she may find her options limited, her ability to maintain optimal health jeopardized.

In closing, I want to tell you about my friend, Joe. He is 23 years old. He has lived in a nursing home since he had an accident at age 17. He stayed because he was unable to find an apartment, transportation, a job, the amount of personal care he requires, and other necessities. Joe is a great artist. In fact, one of his collages, hangs in the White House. Joe did not like the nursing home and