Not Dead Yet Annual Report: October 2022 – September 2023

Not Dead Yet Annual Report:  October 2022 – September 2023

The Center for Disability Rights continued to extend administrative support and sponsorship to Not Dead Yet (NDY), a national disability rights group founded in 1996 and headquartered in Rochester, New York since 2008. NDY is governed by a national Board of Directors and employed four full- or part-time staff members, a President/CEO, Assistant Director/Policy Analyst, Director of Minority Outreach and New England Regional Director.

Publications: During the reporting year, NDY published 51 blog entries conveying a disability rights perspective on topics related to assisted suicide, euthanasia, medical ethics, third party decisions to withhold life-sustaining medical treatment and homicides of persons with disabilities. There were over 56,008 views of the website during the reporting year, and 44 blog reprints or re-postings. NDY posted 168 Facebook entries and 195 tweets. NDY’s Policy Analyst created 6 video blogs on NDY topics, and 8 presentations were recorded on Zoom and made available on NDY’s YouTube page.

Media: National NDY issued 4 press releases and participated in one press conference regarding a lawsuit against the California assisted suicide law in which we are a plaintiff. Affiliate Second Thoughts MA held two press conferences opposing state level assisted suicide bills and Second Thoughts CT also held a press conference opposing a Connecticut assisted suicide bill. NDY staff, board and affiliated activists authored 7 op-eds published in mainstream outlets including Newsweek. NDY staff and advocates submitted 8 letters to the editor (at least four published, one in the NYTimes). NDY staff, board and advocates were interviewed for 54 Print and 17 broadcast media coverage pieces in mainstream outlets, including the Boston Globe, Hartford Courant, LA Times, NY State of Politics, The Nation, Kaiser Family Foundation Health News, PBS (including the Laura Flanders Show) and NPR.

Systems Advocacy:  NDY staff and advocates pursued several key systems advocacy policy initiatives during the reporting year, using a combination of strategies and approaches.

  • Assisted Suicide: NDY opposed assisted suicide laws or expansion bills through training, community organizing, legislative meetings, testimony, direct action and court efforts in 15 states (CA, CT, DE, HI, MA, MD, MN, MT, NH, NV, NY, OR, RI, VT, WA). Three direct actions with signs and leaflets were held, one in Albany, NY opposing a pro-assisted suicide rally and two in Boston, MA, one at the Supreme Judicial Court and the other at the legislative State House to oppose a pro-assisted suicide rally. No state passed a new assisted suicide law in the reporting year, however, four states with assisted suicide laws passed expansion bills that reduced safeguards. NDY also continued advocating for House Concurrent Resolution 68 expressing Congressional concerns about assisted suicide laws.

  • United Spinal v. California Court Case: United Spinal Association, Not Dead Yet (NDY), Institute for Patients’ Rights (IPR), Communities Actively Living Independent & Free (CALIF) and individual plaintiffs, Lonnie VanHook and Ingrid Tischer, filed a lawsuit in the U.S. District Court for the Central District of California, asking that California’s End of Life Option Act (EOLOA) be declared unlawful and unconstitutional. Assisted suicide is the most lethal form of disability discrimination. It denies a segment of disabled people the protection of suicide prevention laws, medical practice standards, and statutes prohibiting abuse, neglect and homicide that nondisabled persons receive. This double standard based on health status violates the Americans with Disabilities Act (ADA).

  • Other Court Cases: NDY and 11 other disability groups filed an Amicus Brief opposing a motion in Shavelson v. California to allow active euthanasia as a “reasonable accommodation” under the ADA. The district court denied this motion as it would be a fundamental alteration of the assisted suicide law which only allows self-administration of lethal drugs. NDY and affiliate Second Thoughts MA opposed the Massachusetts Kligler v. Healey court action seeking a constitutional right to assisted suicide, helping to organize a disability amicus brief and conducting public education, contributing toward a favorable result in the state’s highest court.

  • Opposing QALYs: NDY continued to join in efforts led by the Partnership to Improve Patient Care to challenge the use of QALYs (Quality Adjusted Life Years) in health insurance coverage decisions.

  • Anti-Racism Work: NDY participated in the ongoing Racism Task Force of the National Disability Leadership Alliance. NDY’s Director of Minority Outreach provided numerous media interviews and conference/webinar presentations concerning healthcare treatment disparities based on race and the increasing danger to BIPOC communities as assisted suicide is normalized in the healthcare system.

  • Treatment Withholding/Withdrawal: NDY’s CEO served as an invited observer/participant in national Uniform Law Commission meetings convened regarding proposed revisions to the Uniform Healthcare Decisions Act and Uniform Determination of Death Act. She also submitted testimony opposing Connecticut SB 897 which would limit a healthcare proxy’s powers to choose in favor of life sustaining treatment.

NDY filed two formal public comments during the reporting period:

NDY also signed onto 12 policy letters and position statements initiated by other organizations during the reporting year.

Conference, Workshop & Other Training Presentations: Not Dead Yet provided 20 video training presentations, workshops, university guest lectures and webinars. At the National Council on Independent Living annual conference, NDY’s Director of Minority Outreach Anita Cameron was presented with their 2023 Corey Rowley National Advocacy Award.

Collaboration and Networking:  Throughout the year, NDY participated in at least 138 meetings on a variety of committees involving NDY issues and related health care topics. These included, among others, NCIL’s Healthcare/PAS Committee, the NY Association on Independent Living Health Committee, Patients Rights Action Fund and the National Disability Leadership Alliance.