Comments filed in opposition to funding for end-of-life program

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News from New York State

Twelve disability rights organizations, led by Not Dead Yet and the Center for Disability Rights, submitted public comments to the New York State Department of Health on May 28, in opposition to a program that they argue incentivizes people to “choose death over living with disability.”

“Understandably, individuals do not want to lose their abilities due to an accident, illness, or age,” the groups wrote in the comments. “Yet disability is a natural part of the human experience and it is unacceptable that a government program will encourage people to choose death over disability.”

The NYS Delivery System Reform Incentive Payment Program Project Toolkit contains a series of proposed projects that aim to reduce costs in the state’s Medicaid Program.

The proposal at issue, called the Conversation Ready Project, aims to help “people talk about their wishes for end-of-life care,” according to its website.

The disability advocacy groups argue that questions are framed to encourage people to sign advance directives that decline lifesaving care, even when they may be able to live comfortably with their disabilities with the proper supports.

“A senior may lose their vision, but learn to enjoy audio books. A diabetic may miss chocolate ice cream, but learn to enjoy sugar-free alternatives and a healthier diet,” the letter states. “A person with dementia may not recognize family, but still enjoy their company.

“There are a plethora of examples where people, happily and successfully, adapt with their disability.”

The letter also provides support for two other projects, which aims to expand palliative care services, a form of specialized health care that helps people cope with serious illnesses.

The full letter can be read here.

One thought on “Comments filed in opposition to funding for end-of-life program

  1. Marc Brenman says:

    This trivializes end of life issues: “A diabetic may miss chocolate ice cream, but learn to enjoy sugar-free alternatives and a healthier diet.”

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