Disability rights group submits comments on Medicare, advanced planning proposal

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stethoscope, pen and medical form

Advocates Push for Changes in End-of Life Materials

Not Dead Yet is working to ensure its voice is heard in the development of the Obama Administration’s new proposal to reimburse doctors for end-of-life counseling.

Current federal Medicare law prohibits doctors from being reimbursed from such services. In July, the Center for Medicare and Medicaid Services released its latest annual rules for paying Medicare providers, which included payment rates for an initial 30-minute visit where doctors discuss with patients their end-of-life choices, and a separate rate for additional 30-minute sessions.

The advocacy group, which strongly opposes physician-assisted suicide, supports the idea of reimbursing providers for end-of-life counseling. However, Not Dead Yet argues the rules should be delayed until the CMS develops new advance planning materials, countering the perceived message that people are “better off dead than disabled.”

“It is difficult to know how to undo the crushing, life ending damage already done and to prevent the proposed payment regulations from magnifying the negative impact of the horrendously anti-disability materials that already exist,” Not Dead Yet wrote in a letter submitted to the CMS on September 8, the final day of the 60-day public comment period. “But that should be a task that we can all agree on: the discrimination incorporated in existing materials must be eliminated and new materials must be developed, disseminated and promoted.”

In the letter, Not Dead Yet highlighted its efforts collaborating with Respect Choices, to modify two widely distributed publications by the organization, titled “Tube Feeding: What You Should Know [PDF]” and “BiPAP and Ventilators: What You Should Know [PDF].”

In December 2013, Not Dead Yet, along with three dozen other disability rights organizations, submitted a letter to Respect Choices, contending that the materials incentivized people living with the assistance of these devices to end their lives.

In its letter to CMS, Not Dead Yet said the parties are in full agreement as to how to revise the feeding tube documents, and are making progress on the materials pertaining to breathing devices.

Not Dead Yet also highlighted its efforts opposing the “Conversation Ready Project,” which it accuses of encouraging people to sign advanced directives declining life-saving care, rather than seeking further treatment for their disabilities.

In 2014, New York State released a proposal consisting of proposed projects to reduce Medicaid costs. In response to a letter from Not Dead Yet that May, New York State withdrew the project from consideration.