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Read Sen. Tom Harkin's statement.



Where there is a genuine dispute as to what the desires of the incapacitated person really are, then there ought to be at the end some review by a federal court outside of state jurisdiction.
-- Sen. Tom Harkin.

Disability groups seek legal protection for 'incapacitated' people

By Mary Johnson

MAR 23, 2005-- As legal appeals are exhausted in the case of Terri Schiavo, the long-term issue, say disability groups, is whether guardians should "have carte blanche to starve and dehydrate" people with conditions like hers.

Sen. Tom Harkin 's (D. IA) effort in Congress last week to produce a wider bill was typical of the role he's played for disabled people during his years in Congress.

26 National Disability Groups Say Schiavo Deserves Protection of Law

In Oct., 2003, the followng groups signed a statement on Terri Schiavo:
ADA Watch
AIMMM - Advancing Independence
Center for Self Determination
Center on Human Policy
Citizens United Resisting Euthanasia (CURE)
Disability Rights Center
Disability Rights Education & Defense Fund
Disability Rights Project of the Public Interest Law Center of Philadelphia.
Hospice Patients Alliance
National Catholic Partnership on Disability
National Coalition for Disability Rights
National Coalition on Self-Determination
National Council on Independent Living
National Disabled Students Union
National Down Syndrome Congress
National Organization on Disability
National Spinal Cord Injury Association
Not Dead Yet
Self Advocates Becoming Empowered (SABE)
World Association of Persons with disAbilities
World Institute on Disability

In addition, a Joint letter voicing support for the life of Terri Schiavo as a disability rights issue was released by
American Association of People with Disabilities,
United Cerebral Palsy
The Arc of the United States.

The Democratic Senator from Iowa, perhaps more than any other member of Congress, has worked diligently for disability rights over the decades, and seems to have no problem understanding that the matter of Terri Schiavo is nothing so much as a disability rights issue.

"The more I looked at the Schiavo case, the more I thought, 'Wait a minute. There are a lot of people in similar situations -- maybe not in her specific situation -- but because of a disability cannot express themselves or cannot in any way make their desires known,'" he told reporters yesterday. "So it seems to me like this would be an appropriate area for us to take a look at."

His understanding is unusual among politicians, and is entirely lost in the save-Terri-Schiavo political free-for-all that this issue has become in recent days, with the likes of House Majority Leader Tom DeLay (R-Tex.) hopping in front of the cameras at every opportunity to intone about "sanctity of life." (More, below, on the political skirmishing.)

Sen. Harkin told reporters, "There are a lot of people in the shadows, all over this country, who are incapacitated because of a disability, and many times there is no one to speak for them, and it is hard to determine what their wishes really are or were. So I think there ought to be a broader type of a proceeding that would apply to people in similar circumstances who are incapacitated."

"It's one thing to refuse treatment ourselves, but it's quite another when someone else makes that decision," says Diane Coleman, head of Not Dead Yet. "Disability groups don't think guardians should have carte blanche to starve and dehydrate people with conditions like brain injury, developmental disabilities -- which the public calls 'birth defects' -- and Alzheimers.

"Studies show that most elder abuse," she continues, "is committed by the spouse or adult child, the same people appointed guardians under state laws." (Abuse increasing -- 3/19/05 news article.)

The danger faced by "incapacitated" or non-communicative persons -- people who have been declared "incompetent" and their legal rights assigned to a "guardian," has been worrying disability rights activists for years, and came to a head 18 months ago, back in Oct., 2003, when, as now, Terri Schiavo's feeding tube was removed.

But the issue is much bigger than Schiavo, and it is not about the "right to life" -- it is about equal protection of the law. Constitutional protection.

Over a dozen disability groups have repeatedly urged Constitutional review of cases like this. Two years ago, the groups urged the Florida court in the Schiavo case to "require a genuine application of the due process standard" and require "that Terri's wishes be proven by clear and convincing evidence, consistent with the Cruzan standard set forth by the U.S. Supreme Court."

Disability groups don't think guardians should have carte blanche to starve and dehydrate people with conditions like brain injury, birth defects and Alzheimers.

"That standard is vital to the survival of hundreds of thousands of people with severe disabilities in guardianship because, as numerous studies prove, guardians too often value the life of their ward far less than the ward values his or her own life," wrote Not Dead Yet in a letter to the Florida ACLU, which at the time supported Michael Schiavo's effort to disconnect his wife's feeding tube.

Yesterday, Harkin told reporters, "Where there is a genuine dispute as to what the desires of the incapacitated person really are, then there ought to be at the end some review by a federal court outside of state jurisdiction."

"Competency is not an all-or-nothing thing. That's why the law provides for limited guardianship, which seeks to respect the choices of people who may not be fully independent in decision-making," says Not Dead Yet. "The Terri [Schiavo] of today, and all people in guardianship, deserve protection of their rights not to be deprived of life without due process by a guardian who feels that their ward is as good as dead, better off dead, or that the guardian himself or herself would be better off without the ward."

"You might say, 'Why a federal court?' " Harkin continued yesterday. Then he answered his own question: "State courts vary in their evidentiary proceedings and in their process -- fifty different ones. Iowa differs from Florida or Missouri. So sometimes a person might get caught in a certain evidentiary proceeding, in a state court, that does not really tell the whole story. Every review of that, up through the state courts, is basically on the procedure, not upon the first facts.

"In a case like this, where someone is incapacitated and their life support can be taken away, it seems to me that it is appropriate -- where there is a dispute, as there is in this case -- that a federal court come in, like we do in habeas corpus situations, and review it and make another determination." Harkin told reporters he was hopeful that Congress would address such legislation after dealing with the current Schiavo crisis.

Bill passage a political football

MAR 20, 2005-- This afternoon the House convenes at 1 p.m. (check C-SPAN) to consider yesterday's compromise.If the House can pass it, the Senate is expected to follow suit almost immediately. But passage is unlikely today; Rep. Robert Wexler (D. FL.) said he will not go along with the bill. "While my heart goes out to Ms. Schiavo and all members of her family, I find it unconscionable that Congress has decided to continue to intercede in spite of the clear action of Florida courts and the unequivocal precedent of law, which has supported the right of Ms. Schiavo's husband to make these heart-wrenching decisions as her legal guardian."

And Rep. Earl Blumenauer (D-OR), who last week voted to reaffirms a 1994 treaty barring torture of detainees in American custody, is reportedly trying to gather enough votes to defeat the bill Monday.

Sources close to the case say that House Republican leadership, wanting political credit for a bill to "save Terri" and irritated that they might be trumped by Senate bipartisanship, adjourned the House early Thursday evening, planning to leave the Senate hanging, "and orchestrating the Dennis Hastert subpoena gimmick." (On Friday, House Speaker Dennis Hastert (R. - IL) issued a subpoena to Terri Schiavo to appear at a congressional hearing March 25, and Senate Majority Leader Bill Frist (R. TN) issued a statement pointing out that it interfering with a person slated to testimony before Congress is a federal crime.)

Sen. Tom Harkin told reporters on Saturday that House Republicans should have dealt with a bill last week. "I do not believe there was a need for this to be dragged out in the media yesterday, today and now into the weekend," he said.

Frist got before the cameras late Saturday to announce that Congress "has been working nonstop over the last three days to do its part to uphold human dignity and affirm a culture of life."

News reports noted a political memo distributed to Republican senators that reminded them that the debate over Schiavo would appeal to "the party's base.

"This is an important moral issue and the pro-life base will be excited that the Senate is debating this important issue," said the memo. "This is a great political issue, because Senator Nelson of Florida has already refused to become a cosponsor and this is a tough issue for Democrats."

Posted March. 20, 2005, with updates.

Mary Johnson edits Ragged Edge Online.

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