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Health care testimony moves many attending Senate hearing

Posted: Tuesday, March 06, 2001

ANCHORAGE (AP) -- Hundreds of people attended a special U.S. Senate Appropriations Committee hearing here focusing on health care for the mentally retarded.

Monday's hearing was chaired by Sen. Ted Stevens, and it was timed to coincide with the 2001 Special Olympics World Winter Games.

Many were there to listen to such well-known speakers as actor Arnold Schwarzenegger and U.S. Surgeon General David Satcher. But a number of speakers talked about their own experiences.

Loretta Claiborne, 47, of Pennsylvania talked about visiting a doctor as a young girl. She had trouble walking because of problems with her feet. One doctor's prescription was take her home, smack her on the bottom a few times and she'd walk fine.

Claiborne's mother searched for better advice.

Claiborne still demands better treatment. Five years ago, she noticed she was gaining weight in her abdomen. Doctors told her she was putting on pounds because she was getting older; she wanted a better answer and finally got the correct diagnosis -- a tumor growing inside her stomach.

Claiborne said she was lucky. Many people with mental retardation cannot advocate for themselves like she can.

''I grew up, my mother passed away and here is Loretta fighting for herself,'' she told the audience.

Claiborne asked Stevens what is being done for the health needs of people with mental disabilities. Then she answered her own question.

''Hardly anything.''

When Claiborne finished her speech, the crowd burst into a round of applause, ignoring repeated requests from Stevens to abstain from clapping, which is not allowed in Senate hearings.

Stevens, R-Alaska, called almost a dozen speakers to talk at Monday's hearing and received a 200-page report by Special Olympics Inc. and the Yale University School of Medicine. The report summarizes the relatively scant information about mental disabilities.

Statistics in the report and from several witnesses detailed how many people have needs addressed in the health care report. Almost 170 million people worldwide have developmental disorders. Between 2 million and 7.5 million of this group live in the United States.

An estimated 11,000 to 18,000 live in Alaska.

Timothy Shriver, president and chief executive officer of the Special Olympics, said he believes the hearing was the first time any Senate committee received testimony exclusively about the needs of people with mental disabilities.

''We are here on behalf of a population that has no lobbyists in Washington,'' Shriver said. His testimony addressed the Special Olympics report and its examples of shortfalls in health care, including a shorter life expectancy for those with mental disabilities.

Only 30 percent of people with developmental disabilities receive medical care from specialists, although more than 90 percent have needs that require such care.

Health care professionals do not always have adequate training for treating patients with disabilities, witnesses said. Their needs are often neglected, and if they are met, insurance doesn't always cover the expenses.

While Alaska was one of the first states to close all its institutions for people with disabilities and return them to their communities, the state still shares other health issues with the rest of the country, said Karen Perdue, commissioner of the Department of Health and Social Services.

Medicaid in Alaska and elsewhere doesn't provide adequate coverage for adult preventative dental care. People with mental disabilities worry about losing Medicaid coverage when they get a job, she said.

After listening to two hours of testimony, Stevens said he wasn't surprised by the statistics, partly because he grew up with a cousin who had developmental disabilities.

Stevens said he would do his best to make sure Congress hears about the testimony.



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