Summary of Not Dead Yet Annual Report: October 2019 – September 2020
The Center for Disability Rights (CDR) continued to extend support and sponsorship to Not Dead Yet (NDY), a national disability rights group headquartered in Rochester since 2008.
Publications: During the reporting year, NDY published 55 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 68,650 views of the website during the reporting year, and NDY posted 157 Facebook entries and 187 tweets. NDY created or participated in four videos on NDY topics.
Media: National NDY issued seven press releases and participated in two press conferences. NDY staff, board and activists authored 13 op-eds published in mainstream outlets. NDY staff posted at least 8 online comments and three letters to the editor were published (out of 8 submitted). NDY staff, board and advocates were interviewed for one TV and four radio broadcasts. There were at least 16 print or online news articles covering NDY messaging, including in the Associated Press, New York Times, US News & World Report, Boston Globe and Huffington Post.
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 seven states. Out of 20 assisted suicide bills introduced in 2020 or carried over from 2019, none passed. NDY also participated in efforts to support House Concurrent Resolution 79 expressing the Sense of Congress that assisted suicide laws are bad public policy, including presenting at a Congressional Briefing conducted by the National Council on Disability.
- COVID-19 and Crisis Standards of Care: NDY published blogs opposing COVID triage based on disability or age categories. Submitted testimony to Boston City Council opposing triage based on 5-year survival predictions and testified at Mass. Health Equity Task Force public hearing on crisis standards of care. NDY worked with DRNY in filing OCR complaint opposing NY ventilator reallocation policy and joined with NMD United and individual NY vent users in a civil lawsuit against the state on this policy. NDY filed a public comment on proposed national vaccine allocation framework.
- “Futility” Cases: NDY joined in NCIL complaint to the Office for Civil Rights calling for an investigation of the discriminatory denial of treatment for Black Disabled Texas man Michael Hickson leading to his death. NDY has also joined in an amicus brief and publicized the Texas futility case of infant Tinslee Lewis, who still lives as the case continues to move through the courts.
- 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. Submitted testimony opposing QALYs to the Massachusetts Joint Committee On Public Health. NDY worked with ASAN to develop NCIL resolution opposing QALYs which was adopted by NCIL membership.
- 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 two public comments, one opposing Medicaid rules that would increase institutionalization of disabled people and one concerning COVID vaccine allocation. NDY also signed onto 27 policy letters and position statements.
Conference, Workshop & Other Training Presentations: Not Dead Yet staff, board and advocates provided 27 training presentations in person or through Skype or webinars.
Collaboration and Networking: Throughout the year, NDY participated in at least 92 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, and the National Disability Leadership Alliance.
Calendar Year 2020 Revenue, Expenses and Fund Balance
Revenue
Contributions $105,239
Expenses
Salaries $108,544
Fringe $19,320
Travel $726
Staff Development $844
Interpreting Services $240
Supplies, Postage, Materials $1,837
Equipment $3,182
Memberships, Subscriptions $2,280
Communications, Website $553
Consultants, Contractual Services $29,242
Miscellaneous $510
Total Expenses $167,278
Net Rev/Exp ($62,039)
Year End Fund Balance $172,698