Annual Report: October 2020 – September 2021

Not Dead Yet Annual Report:  October 2020 – September 2021

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

Publications: During the reporting year, NDY published 47 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 59,927 views of the website during the reporting year, and NDY posted 130 Facebook entries and 176 tweets. NDY created or participated in three videos on NDY topics.

Media: National NDY issued three press releases and participated in two press conferences. NDY staff, board and activists authored 9 op-eds published in mainstream outlets. NDY staff and advocates submitted 8 letters to the editor at least one of which was published. Print and broadcast media coverage: NDY staff, board and advocates were interviewed for one TV and seven radio broadcasts. There were at least 19 print or online news articles covering NDY messaging, including in the Washington Post, New York Times, Boston Globe, Hartford Courant and National Public Radio.

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 through training, community organizing, legislative meetings and testimony in seven states (CA, CT, MA, NV, NM, NY and RI). New Mexico legalized and California expanded assisted suicide, but the others did not. NDY’s Director of Minority Outreach worked in Massachusetts to form a group of Black disability advocates opposed to an assisted suicide bill. NDY also participated in efforts to support reintroduction of House Concurrent Resolution 79 expressing the Sense of Congress that assisted suicide laws are bad public policy.
  • COVID-19 and Crisis Standards of Care: Litigation 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 was filed Oct. 7, 2020 and continued throughout the reporting year. NDY continued blogging and other networking regarding discrimination in crisis standards of care.
  • “Futility” Cases: NDY joined in an amicus brief filed 10/08/21 in the Texas futility case of infant Tinslee Lewis. ASAN and NDY also filed an OCR complaint on 12/11/20 in the N. Garcia case involving a person with developmental disabilities denied COVID treatment.
  • 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.
  • Opposing Bills to Make Assisted Eating Subject to Advance Directives and Surrogate Decisions: NDY worked with NYAIL and CDR to oppose NY A2634/S4967 which would allow assisted eating and drinking to be discontinued under advance directives and surrogate decisions, ending the life of a person deemed incapacitated. Met with Speaker Heastie and sponsoring legislators concerning the dangers of these bills to disabled people who require assistance to eat.
  • Non-Discrimination in Healthcare: NDY worked with DREDF and others on 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 formal public comments during the reporting period:

On 05/13/21, NDY also submitted a public comment thanking NCD for its work on QALYs in connection with the H.R. 3 bill and on Crisis Standards of Care. NDY signed onto 27 policy letters and position statements initiated by other organizations during the reporting year.

Conference, Workshop & Other Training Presentations: Not Dead Yet provided 30 online video training presentations, workshops, university guest lectures and webinars.

Collaboration and Networking:  Throughout the year, NDY participated in at least 108 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 2021 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 2021.

Revenue

Contributions $44,136

Expenses

Salaries $99,185
Fringe $19,845
Equipment/software $2,002
Staff Development $225
Supplies, Postage $78
Memberships, Subscriptions $2,408
Communications $433
Administrative Services $6,000
Sponsorships $1000
Consultants, Contractual Services $19,574
Miscellaneous $47

Total Expenses $151,470

Net Revenue ($107,334)

Fund Balance $65,387