Who gets to live? Who will decide?

• Author: Ervin, Mike
• Position: Health care reform and the disabled

Gill is referring to the sort of healthcare "reform" passed last year by the Oregon legislature, which "rations" Medicaid benefits. As originally drafted, the Oregon plan ranked several hundred medical conditions and drew a line below which a condition would not be covered. The placement of the line was to be determined by estimates of what a year's state Medicaid budget would be.

State bureaucrats would prioritize conditions by, among other things, a telephone survey of 1,001 Oregonians who would be asked their perceptions of the quality of life of a person with those conditions. Treatment decisions would be driven not by what was medically necessary but by other people's perceptions of life with a chronic medical condition or a permanent disability.

The plan was criticized by former Secretary of Health and Human Services Louis Sullivan because its provisions violate the rights of people with disabilities under the Americans with Disabilities Act (ADA).

Bob Griss, an official of the Washington, D.C.-based Center on Disability and Health, agrees. "It's important that access to health care be viewed as a Federal civilrights issue," he says. "Otherwise we're all going to be politically vulnerable."

When it comes to rationing schemes, he says, no ground should be given without a fight, because such schemes reduce the complexity of health-care delivery to a question of "Who gets thrown out of the lifeboat?" Proponents of rationing justify it as a way to face up to inevitable tough choices, when they're really just taking the easy way out.

While no one involved in the national health-care debacle seriously proposed a plan like Oregon's, both the House and Senate considered a form of fluctuating coverage that weighed the costs of treatments against their effect on the Federal deficit.

However, when the Oregon plan, in revised form thanks to lobbying by Griss and other activists, did become state law, U.S. Senator Bob Packwood said, "Sooner or later, the rest of America is going to come to what Oregon is trying."

And that's exactly what disability activists are worried about. There's ample recent precedent for them to fear the disabled will be the "dead weight" that gets tossed overboard. The more the desire for supported, dignified death a la Dr. Kevorkian is seen as the logical emotional response to the prospect of life with a disability, the more the desire for supported, dignified life will seem radical and unreasonable.

It has happened before. "Permitting the Destruction of Unworthy Life" is the title of a 1920 essay by Alfred Hoche, M.D., in which he made his case for the elimination through euthanasia of the "dead weight existences" of "incurables" in Germany.

"Our situation resembles that of participants in a difficult expedition," Hoche wrote. "The greatest possible fitness of everyone is the inescapable condition of our endeavor's success, and there is no room for half-strength, quarter-strength, or eighth-strength members.... Eliminating those who are completely mentally dead is no crime, no immoral act, no emotional cruelty, but is rather a permissible and useful act."

By "incurables," Hoche meant mentally retarded people or people with emotional disabilities who are "empty human shells" who "stand on...