Not Dead Yet Annual Report: October 2021 – September 2022
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 Directorsand employs five full- or part-time staff members, a President/CEO, Assistant Director/Policy Analyst, Director of Minority Outreach, New England Regional Director and Minority Outreach Assistant.
Publications: During the reporting year, NDY published 56 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 51,611 views of the website during the reporting year, and NDY posted 143 Facebook entries and 240 tweets. NDY created two video blogs on NDY topics, and a number of presentations were recorded on Zoom and made available. NDY wrote two articles in addition to the blog, published by a legal assistants’ magazine and by the Disability Visibility Project.
Media: National NDY issued three press releases and participated in two press conferences (CA and MA). NDY staff, board and affiliated activists authored 8 op-eds published in mainstream outlets. NDY staff and advocates submitted 3 letters to the editor at least one of which was published. Print and broadcast media coverage: NDY staff, board and advocates were interviewed for 8 TV, radio or podcast broadcasts. There were at least 26 print or online news articles covering NDY messaging, including in the Boston Globe, Hartford Courant, The Progressive Magazine, American Journal of Bioethics and Associated Press.
Systems Advocacy: NDY staff and advocates pursued several key systems advocacy policy initiatives during the reporting year, using a combination of strategies and approaches.
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Assisted Suicide: NDY opposed assisted suicide laws or expansion through training, community organizing, legislative meetings, testimony and court efforts in 13 states (CA, CT, DE, FL, KS, MA, MN, NH, NV, NY, OH, PA and RI). Two direct actions with signs and leaflets were held in NY, and one in MA. No state passed a new assisted suicide law in the reporting year. NDY also continued advocating for House Concurrent Resolution 68 expressing Congressional concerns about assisted suicide laws.
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COVID-19 and Crisis Standards of Care: Litigation continued in which NDY joined with NMD United and individual NY vent users in a civil lawsuit against the state (Not Dead Yet v. Cuomo) regarding a policy allowing reallocation of personal ventilators (filed Oct. 7, 2020). The case was dismissed for lack of standing and an appeal was pending at the end of the reporting year.
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Opposing QALYs: NDY participated in the Partnership to Improve Patient Care’s Rapid Response Workgroup challenging the use of QALYs (Quality Adjusted Life Years) in health insurance coverage decisions. NDY supported Mass. H.201/S.753, An Act Advancing Health Care Research and Decision-Making Centered on Patients and People with Disabilities to ban QALYs, as well as advocated for a federal ban.
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Court Cases: NDY and MA affiliate Second Thoughts opposed the Massachusetts Kligler 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. NDY presented to 20 California lawyers on the assisted suicide issue, participated in legal meetings and public writing concerning various court cases, especially a euthanasia case brought under the ADA in the Northern District of CA.
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Anti-Racism Work: NDY participated in the ongoing Racism Task Force of the National Disability Leadership Alliance, presented to the BIPOC Disability Collective, published a video interview with NDY’s Director of Minority Outreach concerning racism in treatment withholding practices, and published blogs by BIPOC staff and advocates.
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Treatment Withholding/Withdrawal: Worked with CDR in opposing a NY “DNR Restoration” bill that would expand doctor/surrogate options to impose DNRs. Met with NY Senate Health Committee Director. Met about guardianship and health care decisions with the National Center on Advancing Person-Centered Practices and Systems (NCAPPS) and, separately, an attorney with The Arc.
NDY filed three formal public comments during the reporting period:
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Submitted federal regulations.gov NDY comment on Section 14 (c) NPRM(11/12/21)
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Submitted public comment for CMS-3409-NC re organ transplant discrimination (1/31/22)
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Submitted CDC Opioid Guideline Comment (4/11/22)
NDY also signed onto 15 policy letters and position statements initiated by other organizations during the reporting year.
Conference, Workshop & Other Training Presentations: Not Dead Yet provided 14 video training presentations, workshops, university guest lectures and webinars.
Collaboration and Networking: Throughout the year, NDY participated in at least 167 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.
Calendar Year 2022 Revenue, Expenses and Fund Balance
NDY operates under the fiscal sponsorship of the Center for Disability Rights (CDR). CDR’s fiscal year is the calendar year. Below are NDY’s revenue and expenses for 2022.
Revenue
Contributions $178,888
Expenses
Salaries $137,842
Vacation ($23,623)
Fringe $27,931
Travel $770
Equipment/software $1,796
Supplies, Postage $318
Memberships, Subscriptions $2,392
Communications $323
Administrative Services $6,000
Technology Services $989
Consultants, Contractual Services $4,111
Miscellaneous $47
Total Expenses $158,896
Net Revenue $19,992