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Senate committee hears testimony on issues raised in wake of Schiavo case

"I am Rud Turnbull, the father of Jay Turnbull, a 37-year old man with significant mental retardation (measured IQ of approximately 40, mental age of approximately 6), rapid cycling bi-polar illness, autism... " So began the testimony of attorney Rud Turnbull, Co-Director of the University of Kansas Beach Center on Disability before members of the Senate Health Committee on Wednesday at a hearing originally scheduled for Mar. 28.

This was the hearing at which Terri Schiavo was subpoenaed to appear -- Senate leaders originally thought the invitation would bar Michael Schiavo from removing her feeding tube because it would amount to "tampering" with a federal witness. When that failed, the hearing was re-scheduled for April 6. Described as a hearing on "health care provided to nonambulatory persons," committee members also heard from Dr. James L. Bernat of the Dartmouth Medical School, representing the American Academy of Neurology; Dr. Deborah Warden, Director of the Defense and Veterans Head Injury Program and J. Donald Schumacher, head of the National Hospice and Palliative Care Association..Read testimony

But it was Turnbull's testimony that riveted the room -- and it was his testimony that was reported in news stories:

I am pleased to share my perspectives as a father and friend of many people with intellectual and associated disabilities and their families....

Whatever you do on this topic we discuss today will change their lives dramatically. But you will also affect those who will acquire a disability as they age. That population includes nearly every one of us, should we live long enough.

Although I do not personally know these millions of people whom you can affect, I know how they have experienced discrimination and sometimes been surprisingly successful in overcoming it, and I have a solid sense about their aspirations for how they want to live. ....

Many of them are in the same position as my son: graduates of special education under the Individuals with Disabilities Education Act; beneficiaries of the Home and Community Based Services Waiver under Medicaid; and recipients of SSDI or SSI; supported employment services under the Rehabilitation Act; and rent subsidies under Section 8 of the Housing Act. Some of them live according to their choices; my son does, because of these programs.

Many, however, live according to how policies and service systems find it convenient for them to live. Unlike Jay, they are not supported to be self-determined.....

Self-determination... is at the heart of debates about health-care decision making.

You need to understand that people with intellectual and associated disabilities have always been subjected to discrimination. Often, they have been put to death or allowed to die when they might have been kept alive. The discrimination that they have experienced in education, employment, and housing are matters that you have addressed by various laws. More to the point today is the discrimination in health care that they have experienced....

Congress should not retreat from the laws that already commit our nation to enhancing the quality of life of people with disabilities and their families...."

Read Turnbull's full testimony.

Turnbull called for senators to pass the languishing "Family Opportunity Act" and the "Medicaid Community-based Attendant Services and Supports Act" -- so families with disabled children could qualify for Medicaid health coverage, and so people could use Medicaid funds to get services in the community rather than in institutions.

If Congress was serious about things, he said, they must not cut Medicaid. "Preserving Medicaid as an entitlement is absolutely necessary for people with disabilities," he said.

The hearing was not part of any specific bill; it was an opportunity for Senators to gather information. Sen. Tom Harkin (D. -IA) is among those members of Congress looking to fashion more long-term protections for people like Terri Schiavo.

Posted April 7, 2005.

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