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Disability Life
Rewriting the Myths, Redefining the Realities

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Ten Years After ADA:  Still Working to Improve Lives of People With Disabilities

by Rep. Mark Udall

This year we celebrate the ten-year anniversary of the enactment of the Americans with Disabilities Act. While we have made great strides in crumbling barriers to access and employment that people with disabilities faced for too long, we still have several challenges to meet in order to comport with the spirit and letter of this landmark Act. Health care ranks at the top of concerns for people with disabilities, and we in Congress should use the opportunity presented by the budget surplus to ensure that disabled people have the services and resources they need to live a life of fulfillment and self-sufficiency.

Eight million people with disabilities in the U.S. receive Medicare or Medicaid benefits. According to the Congressional Budget Office, nearly half of the adults receiving disability aid could work but donít because they would lose their benefits. Because individuals with disabilities often have difficulties finding adequate employer-sponsored health insurance, and the federal health care coverage they receive is lost when they go to work, they are forced to make the decision to work or to keep the health care coverage they need to survive.

Late last year, Congress took action to mitigate this situation. I was pleased to co-sponsor and vote for H.R. 1180, the Work Improvement Incentives Act, a Bill which Congress passed and the President signed into law in November 1999. This new law amends the Social Security Act to allow states to expand Medicaid coverage for disabled workers, by relaxing the income limitation, with wealthier recipients required to pay higher premiums. It also extends the number of years that people with disabilities who work can continue to receive Medicare benefits without paying premiums. In addition, the law phases out disability payments rather than cutting them off abruptly, as happens now when people go to work. This law reverses the policy of dependence, which keeps millions of Americans out of the workforce, and instead encourages people with disabilities to work if they so choose. It is a bipartisan, common sense solution that benefits individuals with disabilities, employers in need of good workers, and the economy, and I am proud to be a part of this landmark legislation.

While we help people move from poverty to paycheck, there are an estimated 62,000 people with disabilities in Colorado who rely on Medicare for their health care services. Medicare has worked well and provided critical treatment and services for millions of individuals with disabilities since 1965. With the baby boom generation coming into their retirement years, it is more critical now than ever to ensure that the Medicare program is strong and sound at the beginning of this new century. I support using a portion of the federal on-budget surplus to extend the solvency of Medicare through 2025. Additionally, I am a proud co-sponsor of H.R. 353, The Amyotrophic Lateral Sclerosis Treatment and Assistance Act. This bill would waive the 24-month waiting period for Medicare coverage of individuals disabled with Lou Gehrigís Disease and provide Medicare coverage of drugs used for treatment of this disease. We must make sure that people have the health care and services they need.

When we talk about health care, most people think of acute care or emergency care. But there are investments we can make in research and at the early stages of oneís life to help prevent disabilities. In May I voted for H.R. 4365, the Child Health Research and Prevention Amendments. This bill authorizes a number of new childrenís health programs. The measure authorizes federal funds for four years for a program of grants to develop statewide programs to screen and evaluate newborns and infants for hearing loss, to intervene with treatment when indicated and to aid state programs conducting research in this area. It also authorizes the CDC to carry out a program to educate both health professionals and the general public about the effects of folic acid in preventing birth defects and to encourage women of childbearing age to consume a dietary supplement that provides an appropriate level of folic acid.

In addition, it establishes a National Center on Birth Defects and Developmental Disabilities to collect, analyze and make available data on birth defects, conduct epidemiological research on the prevention of such defects, and provide birth defect prevention information and education to the public. It streamlines federal birth defect programs by transferring to the center all activities, budgets, and personnel of the National Center for Environmental Health pertaining to birth defects, folic acid, cerebral palsy, mental retardation and other related issues.

Finally, the legislation requires the National Institute of Child Health and Human Development to expand, intensify and coordinate its activities with respect to research on the mental retardation disease known as Fragile X. Under this legislation, the institute would make grants to or enter into contracts to establish at least three centers to conduct research on Fragile X. The bill also authorizes the Department of Health and Human Services to repay a portion of the educational loans of health professionals who agree to conduct Fragile X research. HHS could agree to repay up to $35,000 of a health professionalís educational loans for each year of research the professional provides.

Congress can play an integral role in peopleís lives by helping them receive quality, affordable health care and gain self-sufficiency. We have passed needed new laws and have more work to do. But the way we can truly understand others is when we talk with them about their experiences and take the initiative to learn more about our differences. I never thought I was going to be as impacted by disability issues as other people in our society until I saw my father suffer the effects of Parkinsonís Disease. My dad battled this disease for ten years and I watched as it robbed him of his faculties and his vitality. This experience alone gave me a stronger resolve to do what I can to push for more research funding, a better health care system, and laws that guarantee people a life free from discrimination, bias, and violence.

We must strive to create communities where each person is valued. Itís easy to focus on what is different about each of us. But itís that diversity that makes our human experience rich. In my experience from Outward Bound, when people from different groups actually sit down and talk with each other, they realize that they have a lot more in common than they think. Our challenge is to reach across divides and embrace diversity - we, as a society, are stronger because of it.

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