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D.C. Arrest of Texas Advocates Focuses on Community Services for People with Disabilities
Sparks Call for Texas Legislature to Take the Lead on Critical Issue
Austin, Texas-May 1, 2007—The arrest yesterday of 99 disability rights activists in Washington D. C. has raised the stakes for the Texas Legislature to take action on community based services for people with disabilities according to the Austin-based Coalition of Texans with Disabilities (CTD).
The arrests occurred when the disability rights organization ADAPT invaded the Rayburn House Office Building in Washington to push for hearings on the federal Community Choice Act (CCA, S 799 and H.R. 1621).
Congress’ failure to act on the federal legislation is effectively pushing the issue to the State Capitol in Austin, noted CTD Executive Director Dennis Borel. “Clearly, leadership on community services must come on the state level and the opportunity is now. We call on the State Budget Conference Committee to fund a 20% reduction in the community services waiting list in their current deliberations,” said Borel.
87,000 people with disabilities who are eligible for Medicaid waiver programs remain on a waiting list for attendant care and other community services. Texas provides only enough funding to serve just 1/3 of eligible people, leaving a waiting list as long as nine years. The cost to the State to reduce the waiting list by 20% would be $252 million. The current budget working documents have $7.5 billion unspent in the so-called Rainy Day Fund. The State Budget Conference Committee is expected to make a decision by May 11.
The April 30 arrests represent the latest advocacy in the ten-year struggle to pass federal legislation that would remove the institutional bias in the nation’s outdated Medicaid program by allowing Medicaid to pay for the services and supports people need to remain in their own homes. Under Medicaid currently, states are federally mandated to provide only nursing home services, and are not equally mandated to provide similar services in a person’s own home.
“We expect Texas legislators to react to the courage of the Washington demonstrators by demonstrating true leadership in human services for our citizens with disabilities,” said Borel.
Debate Heats up on 'Medical Futility' law
At House hearing, opponents seek end to 10-day deadline to move patients out. ByMary Ann Roser
AMERICAN-STATESMAN STAFF
Thursday, August 10, 2006
source: Austin American Statesman
Lawmakers should scrap a 10-day deadline for transferring a loved one to another health care facility when doctors decide ongoing treatment is useless, opponents of the state's "medical futility" law urged Wednesday.
"In the eyes of the disability community, it's involuntary euthanasia," said Colleen Horton, a member of a panel of experts who testified at a hearing before the House Committee on Public Health.
Illustrating the emotion surrounding the issue, the hearing was packed with people sporting yellow buttons that said, "Do Not Kill Me Against My Will." Families and people in wheelchairs waited all day for a chance at the microphone.
State Rep. Bryan Hughes, R-Mineola, who sat in at the only hearing expected to be held on the issue before the legislative session begins in January, said he would consider sponsoring a bill that would require hospitals to continue treating medically futile patients until they can be moved elsewhere. But he said he'd wait to see whether a coalition can first develop a consensus proposal.
He could have a long wait.
The Texas Advance Directives Act Coalition has been working for months but has agreed on only three out of 52 issues, said Chairman Greg Hooser, an Austin lawyer.
The sharpest divisions are between the medical community, which generally supports the law, and various advocacy groups that oppose it, including left-leaning disability rights advocates and conservative Texas Right to Life members.
"I think it's possible to come up with something, but it's not going to happen until the last minute in the (legislative) session," Hooser said.
The law took effect in 2000 as part of the Texas Advance Directives Act, thanks in large part to Hooser and the coalition, which crafted the law. Since then, Right to Life and other groups have said that hospitals and doctors routinely trump the wishes of patients and families.
Hospital representatives and doctors said they try to act in the best interests of the patient, who may be in pain from being kept alive while family members sometimes feud over letting a loved one go.
The medical futility section of the Advance Directives Act gives families 48 hours' notice that attending physicians want to withdraw a patient's treatment and to prepare for a meeting of the hospital ethics committee. If the committee agrees with the doctors, the family has 10 days to prepare for the withdrawal of life-sustaining care or to find another doctor or facility where the patient can be treated.
The committee asked Wednesday: Do families have enough time to arrange the transfer?
That question has arisen in several highly publicized cases around the state, including one involving the family of Lang Yen Thi Vo of Austin. A facility in Illinois agreed to accept Vo, but when the family pleaded for more time, North Austin Medical Center agreed to continue treating her until she could be stabilized.
Vo is going home next week where her family will care for her, said Jerri Ward, an Austin lawyer who helped the family navigate the process.
"The overwhelming balance of power tips in favor of doctors and hospitals," Ward told the committee. She called the process undemocratic and dangerous.
Hospital and physician representatives told the panel the law is working well.
"I don't think you can write a perfect law, but it's pretty darn good," said Dr. Robert Fine, director of the Office of Clinical Ethics for the Baylor Health Care System.
Families often have much longer than 10 days to transfer their loved one, supporters said.
"The 10-day period is almost a red herring," said Tom Mayo, a member of the coalition and an associate professor of law at Southern Methodist University.
