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"End of Life" advocacy upsets national disability groups
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July 1, 2003 -- A group of national disability groups sent a letter yesterday to the Robert Wood Johnson Foundation and Partnership for Caring, which fund the "Last Acts" coalition and the "Last Chapters" website. The group has expressed concern over the "Last Chapters" website, online at, saying that on the site, "disability issues are wrongfully and misleadingly being characterized as 'end of life' issues."

National groups signing the letter include the American Association of People with Disabilities, ADA Watch/National Coalition for Disability Rights, ADAPT, the Center on Disability and Health, the Center for Self-Determination, the Disability Rights Education & Defense Fund, the National Disabled Students Union, the National Organization on Disability, the National Spinal Cord Injury Association and TASH. The group Not Dead Yet is spearheading the effort.

"One section of the site is labeled 'Living with Dying,' " says Not Dead Yet. "On this page, the personal stories of 11 individuals are presented. Among the stories of those who are 'dying' is that of Michael J. Fox, who has Parkinson's, and another individual who has Crohn's Disease.

"Neither Parkinson's nor Crohn's are terminal conditions," Not Dead Yet points out. "Last Acts is misleading the public and is wrongly perpetuating the dangerous myth that life with a disability is the beginning of a death sentence."

Stephen Drake, Research Analyst for Not Dead Yet, says he has had concerns about Last Acts, Partnership for Caring, and other well-intentioned, heavily-funded "end of life" advocacy groups for a long time. "Initially, the focus of these groups was on making services better for people in the last stages of an terminal illness. Over the last couple of years, though, there's been an alarming broadening of their agenda. For example, we've seen proposals to extend the definition of 'terminal' to include people with incurable disabilities and chronic conditions whose future lifespan can be measured in years. We've also witnessed a drive to change probate codes and health statutes in various states to make it easier to deny, withdraw, or withhold treatment from people with nonterminal cognitive disabilities."

"Every year, the Robert Wood Johnson Foundation and other funders throw tens of millions of dollars at 'end of life' advocacy," says NDY President Diane Coleman. Large grants are fueling this movement that, increasingly, says people with chronic conditions are 'terminal.'"

Read the letter the groups sent.

Visit the Last Acts website at

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