Diane Coleman Presents Comments on Futility at July 25 Mtg of National Council on Disability

Many apologies for the delays in getting this out.  Last week, there were many activities and events to mark the 23rd anniversary of the signing of the Americans with Disabilities Act (ADA).  One of those events was a meeting of the National Council on Disability.  Here’s the description and info from last week’s press release announcing the NDLA Statement and Diane Coleman’s Comments to NCD:

Among the disability community activities taking place this week Washington, D.C., the National Council on Disability, and independent federally appointed body that advises the President, Congress and federal agencies on disability policies, held its quarterly meeting. During the meeting, Diane Coleman, Not Dead Yet’s President and CEO, provided both spoken and written public comments urging the Council to address the problem of negative quality-of-life judgments made by physicians to justify denial of life-sustaining care to some individuals who both require it and want it.

Coleman focused on a legislative remedy that developed in Oklahoma to prohibit such quality of life judgments, the Nondiscrimination in Treatment Act passed in May of this year, which states: “A health care provider shall not deny to a patient a life-preserving health care service the provider provides to other patients, and the provision of which is directed by the patient or [surrogate] . . . on the basis of a view that treats extending the life of an elderly, disabled, or terminally ill individual as of lower value than extending the life of an individual who is younger, nondisabled, or not terminally ill.”

Coleman told the Council, “I like the sound of that,” but noted that the provision has already received “some pretty intense criticism.”

One critic is Professor Thaddeus Pope, who wrote about the Oklahoma law in a piece entitled “Defending Disability Discrimination.” Pope gave an example of an institutionalized person with mental illness who allegedly would not be able to handle his medications and other transplant care requirements to be eligible for a transplant. Coleman and other disability advocates challenge these sorts of claims, which assume that the necessary support services do not exist. Pope argued that the courts have a long history of permitting disability discrimination regarding life-sustaining treatment.

“I suspect that Pope is right about what the courts have been doing, and it constitutes a life-threatening problem for people with disabilities,” Coleman told the Council, urging them to take a leadership role in addressing this concern.

Below is the embedded video of Diane Coleman’s comments to NCD.  The full transcript of her spoken comments is here.  A longer written submission is available here.