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READ ORIGINAL STORY: Does end-of-life group shut out disability perspective?

Groups meet, discuss 'end-of-life' website, media
Disability representatives told no funding available

by Steve Drake
Not Dead Yet recently sent a letter to the Robert Wood Johnson Foundation and Partnership for Caring. We were protesting an end-of-life project called "Last Acts" that portrayed people with disabilities and chronic conditions as "dying." Over 45 organizations and individuals from the disability and health policy community endorsed the letter.

In July, Partnership for Caring CEO Karen Kaplan, in response to the letter, agreed to meet with representatives of the disability community. Victoria Weisfeld, the RWJF project officer, also agreed to attend.

Disability groups presented the Foundation with ideas for a number of projects.

That meeting occurred September 12 at the University of Illinois at Chicago. Both Kaplan and Weisfeld were there, along with Not Dead Yet's Diane Coleman and Stephen Drake. Carol Gill of the Chicago Center for Disability Research, Max Lapertosa of Access Living and NDY's attorney on the Terri Schiavo amicus brief, Cyndi Jones of Exploding Myths and Andy Imparato of the American Association of People with Disabilities were there as well;. Tari Susan Hartman of Einsof Communications, Judy Gran of the Public Interest Law Center of Philadelphia, Nancy Weiss of TASH and Mary Johnson of Ragged Edge attended by phone.

The agenda included discussion of the Last Chapters website and the Last Acts Writers Project. We also discussed other problems with the Last Acts project, including

-- its media work defining the "end-of-life problem" almost solely as over-treatment

-- its efforts to weaken protections against surrogate decision-making abuses

-- its work to expand the definition of "terminal"

-- its educational materials which make no mention of abuses in treatment withholding

-- its failure to collect data on death through treatment-withholding

-- its failure to include disability advocates

Kaplan and Weisfeld took a small portion of the meeting to lay out the goals and objectives of Last Acts, the Partnership and the Robert Wood Johnson Foundation. Foundation funding for "end of life" advocacy has totalled over $148 million dollars -- something the disability representatives at the meeting were aware of, but which was not discussed. The disability community has received little funding for dealing with the harmful "collateral damage" done by "end of life" advocacy.

The disability representatives had their own set of proposals for projects that should be funded (see box) -- projects that would cost a fraction of what has been spent on the activities of Last Acts and Partnership For Caring:

Disability representatives found Kaplan and Weisfeld almost surprisingly willing to admit that problems existed; that their work had harmful effects on people with disabilities.

They admitted that the label "terminal" could negatively affect individual rights. They agreed that the Last Chapters website would be changed in consultation with Not Dead Yet. They admitted the Writers Project had given a slanted presentation on the Robert Wendland case to Hollywood writers; they agreed to schedule a meeting between the coordinator of that project and Tari Susan Hartman of Einsof Communications and Cyndi Jones and Bill Stothers of The Center for An Accessible Society. They also agreed to include disability input as they updated a state-by-state analysis of laws and policies. At the end of the two-and-a-half hour meeting, both sided had committed to to further dialogue and had agreed to some actions.

However, no commitments of funding were made. Weisfeld said that RWJF will no longer have "end of life" as a funding priority; that the Foundation is moving onto other things. RWJF funds would be spent, she said, only on completing and ensuring sustainability of existing projects. To disability representatives, that seemed to mean that RWJF felt no responsibility to provide resources to facilitate the correction of problems it helped create.

Kaplan offered to work with the disability representatives in seeking new funding.

Disability representatives presented a variety of projects to undo the damage:

1. Media Projects:

a. A screenwriters' education project, modeled in part after the Writers Project at Last Acts

b. A news media education project, an extension of the work done at the Center for an Accessible Society, but focused on the issues of death and disability.

2. Public Policy, Public Relations, Affiliate Education Projects:

a. An assessment of the status of current laws on problem issues (e.g. surrogates, futility) from a disability perspective, with development of a model alternative statute. (This project would be headed up by some of the legal talent in the disability community.)

b. A project to provide a more balanced education of Last Acts affiliates, including coordination of a cross-disciplinary group to review relevant medical and psycho-social research and develop a "White Paper," and planning of a joint conference on the intersection of end-of-life and disability movement issues.

c. A Project to Develop Constructive Responses to Policy Developments Pertaining to Disability, including formation of a Last Acts/PFC Disability Rights Advisory Committee composed of the letter's endorsees and development of a protocol for public-reaction press releases on disability issues.

d. A project to collect research data on the physical, mental and social characteristics of people who die through refusal of treatment and surrogate- or physician-determined withholding and withdrawal of treatment (futility).

Steve Drake is Research Analyst for Not Dead Yet.

Posted Oct. 2, 2003

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