December 3rd is Giving Tuesday and we know there are many organizations worthy of your support. Please consider giving to Not Dead Yet this week. We work in countless ways to oppose society’s crushing discrimination in healthcare and the relentless assault of “better dead than disabled” messages. But we need you to make this work possible. Please go to NDY’s DONATE page to find out how to add your support.
Here is a short summary of NDY’s work during the Oct 2018 – Sep 2019 year.
Publications: During the reporting year, NDY published 54 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 family/caregiver homicides of persons with disabilities. NDY posted 162 Facebook entries and 257 tweets. NDY posted five videos on Not Dead Yet’s You Tube channel.
Media: National NDY issued ten press releases. NDY staff, board and activists authored twelve op-eds published in mainstream outlets. NDY staff, board and advocates were interviewed for 8 radio and 11 TV broadcasts. There were at least 41 print or online articles that mentioned NDY, including Associated Press, New York Times, Politico, Huffington Post and Forbes.
Systems Advocacy: NDY staff and advocates pursued a number of key systems advocacy policy initiatives during the reporting year, using a combination of strategies and approaches.
- Assisted Suicide: NDY opposed legalization of assisted suicide through training, community organizing and legislative testimony in 13 states. Out of 22 assisted suicide bills introduced in 2019 or carried over from 2018, only the New Jersey and Maine bills, and one Oregon amendment bill, passed. Disability advocates were credited in mainstream press with playing a significant role in preventing passage of these bills in many states.
- National Council on Disability (NCD) Bioethics Project: NDY’s CEO Diane Coleman served as a consultant regarding assisted suicide, futility policies, and discriminatory organ transplant policies pertaining to organ procurement.
- “Futility” Cases: NDY was contacted and assisted in efforts which succeeded in protecting the lives of three disabled individuals whose health care providers or family planned to withdraw life sustaining healthcare.
- Opposing QALYs: NDY participated in the Partnership to Improve Patient Care Rapid Response Workgroup, challenging the use of QALYs (Quality Adjusted Life Years) in health insurance coverage decisions. This included NDY issuing a public statement and press release opposing the use of QALYs.
- Advance Care Planning: NDY continued to challenge the bias against living with significant disability that is increasingly evident in the professional training and public education materials of prominent advance care planning programs. Among other activities, on November 15, NDY responded to the NY Dept. of Health Advance Care Planning Request for Information.
- Non-Discrimination in Healthcare: NDY worked with DREDF to spearhead communications with the federal HHS Office for Civil Rights to advocate for improved policies on non-discrimination in organ transplant eligibility, futility and suicide prevention.
NDY also filed 5 public comments on various policy issues and signed on to 16 policy letters and position statements.
Conference, Workshop & Other Training Presentations: Not Dead Yet staff, board and advocates provided 14 training and conference presentations in person or through Skype or webinars.
Collaboration and Networking: Throughout the year, NDY continued to serve 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, and CDR’s Public Policy Committee.