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Disability Activist Mourn for Terri Schiavo, Call for Action

For more information:
Diane Coleman or Stephen Drake (708) 209-1500 exts. 11 & 29, 708-420-0539 (cell)

FOR IMMEDIATE RELEASE
March 31, 2005 -- The disability community joins Robert and Mary Schindler in mourning over the death of their daughter, Terri Schiavo. In spite of the work of a broad-based array of supporters, the efforts to prevent Terri Schiavo's death through starvation and dehydration ultimately failed.

Even as we mourn, we renew our resolve to continue the battle to promote meaningful safeguards for the thousands of disabled Americans who, like Terri Schiavo, have guardians making life-and-death decisions on their behalf. The dangers to people with disabilities did not begin with the publicized tragedy of Terri Schiavo and they do not end with her death.

We need to work together in a nonpartisan way to ensure meaningful support, legal safeguards, and access to medical care for the millions of old, ill and disabled Americans who are endangered on many fronts.

What the Disability Rights Movement Wants

MEANINGFUL FEDERAL REVIEW
Congressional action along the lines developed by Senators Harkin and Martinez in the U.S. Senate, providing for federal civil rights review of contested third party decisions to withhold treatment in the absence of an advance directive or personally appointed surrogate.

CONGRESSIONAL INVESTIGATION OF NON-VOLUNTARY EUTHANASIA, ESTABLISHMENT OF SAFEGUARDS
Congressional hearings or other examination of the appropriateness of further federal action to protect people from non-voluntary euthanasia based on the decisions of statutory guardians or health care providers.

EQUAL TIME IN AN OPEN PUBLIC DISCUSSION
An open public discussion: Nothing about us without us- disability rights movement experts should have equal time in media debates with bioethicists like Art Caplan. Media must stop following the right vs. left script given them by the bioethicists decades ago. Accordingly, the disability rights movement's experts should be given the same media airtime as spokespersons for the religious right.

STATE-BY-STATE POLICY REFORM
Funding for state-by-state review of guardianship and health care decisions laws by protection and advocacy systems and the Disability Rights Education and Defense Fund to develop reforms to safeguard against non-voluntary and involuntary euthanasia.

PUBLIC EDUCATION BY PEOPLE WITH DISABILITIES
Funding for public education about the perspectives of people living with significant disabilities on the difference between end-of-life decisions and decisions to end the lives of disabled people who are not otherwise dying.

PARTIAL MORATORIUM ON DEHYDRATION/STARVATION
A moratorium on the removal of food and water from people diagnosed in "persistent vegetative state" and "minimally conscious state" in the absence of new diagnostic processes discussed in recent medical journal Neurology, or a written advance directive/power of attorney by the person.

OLMSTEAD IMPLEMENTATION, PASSAGE OF MICASSA
Implementation of the rights of people with disabilities to long-term supports in the community under the U.S. Supreme Court decision in Olmstead. We call for passage of the Medicaid Community Attendant Services and Supports Act, which would allow people receiving Medicaid funding to have a life in the community instead of being forced into a nursing home.

SUSTAIN GOVERNMENT FUNDED HEALTH CARE PROGRAMS
Conservatives who honestly supported efforts to protect the life of Terri Schiavo should work on a bipartisan basis with moderates and liberals to ensure continued appropriate funding of Medicare and Medicaid. Proposed budget cuts threaten to result in a less-public, but very real, increase in the numbers of deaths of older and disabled people, even more prolonged and agonizing than the one experienced by Terri Schiavo, through lack of access to needed healthcare.

Not Dead Yet is a national disability organization that organizes disability opposition to legalized assisted suicide, euthanasia and other forms of medical killing.