NDY’s Year End Review and A Heartfelt Request

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There’s never a dull moment in NDY’s fight against the constant messages that we disabled people are better off dead – and society is better off without us. We couldn’t do it without the active involvement of disability advocates and organizations. We may be small but, because of your efforts and support, together we are leaving a big footprint. For more details about our work, please see our Annual Activity Report below. And, if you can, please consider making a year-end donation to help us continue the fight for our lives.

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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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.

  • 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:

  • Submitted federal regulations.gov NDY comment on Section 14 (c) NPRM(11/12/21)

  • Submitted public comment for CMS-3409-NC re organ transplant discrimination (1/31/22)

  • 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.

Press Release: Disability Rights Advocates Cheer High Court Constitutional Ruling Against Assisted Suicide

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Disability Rights Advocates Cheer High Court
Constitutional Ruling Against Assisted Suicide

CONTACTS:  John Kelly at mailto:SecondThoughtsKelly@Gmail.com  617-952-3302

Jules Good (mailto:JGood@NotDeadYet.org)

Boston, MA – Tuesday, December 20, 2022

Disability rights advocates from Second Thoughts MA and Not Dead Yet are cheering Monday’s decision by the Massachusetts Supreme Judicial Court (SJC), which ruled against plaintiff doctors Roger Kligler and Alan Steinbach in their lawsuit to declare assisted suicide a state constitutional right.

“This is a victory for disability rights,” said Second Thoughts director John B. Kelly. “Everyone who is terminally ill is already or will soon be disabled, and deserves the same level of suicide prevention services as everyone else.

“We appreciate the court’s reference to the amicus brief filed by the Disability Rights Education and Defense Fund (DREDF) and thank the state disability organizations who joined the brief (list on page 2).”

Not Dead Yet president Diane Coleman said, “Neither the U.S. Supreme Court nor any state high court has found a constitutional right to assisted suicide. The prohibition against assisted suicide protects the lives of all disabled people, including the terminally ill.”

Not Dead Yet Director of Minority Outreach Anita Cameron said, “Black people overwhelmingly oppose assisted suicide and don’t use it, and we don’t trust white elites with their newfound concern for how we die, when as the late comedian and activist Dick Gregory said, they never cared about how we live.”

Not Dead Yet Assistant Director Jules Good said, “As we have seen in Canada, granting assisted suicide and/or euthanasia as a fundamental right has resulted in the unnecessary deaths of disabled people who lack access to housing and proper healthcare. Through this decision, the Massachusetts Supreme Judicial Court has chosen to protect our most vulnerable neighbors and recognize the value of disabled lives.”

Second Thoughts member Ellen Leigh said, “I supported assisted suicide until I learned that it is all about disability – the top five reasons in Oregon involve depending on others, feeling like a burden, and shame – ‘loss of dignity.’ We all have inherent dignity and do not lose that when we become ill and disabled. Bringing ‘dignity’ into this only increases feelings of shame and burden for choosing to live.”

“We thank the court for its insistence that ‘physician-assisted suicide’ is the only correct and accurate phrase. Proponents and media alike should stop confusing people with pleasing euphemisms,” said Second Thoughts member Mary Makuc.

“Now let’s talk about fully funded home care so old, ill, and disabled people can live at home in the community, not feel like a burden on unpaid family members,” said Second Thoughts member Brian Shea.

Members of the two groups held an action on October 13 in front of the SJC to remind people that this matter belongs in the legislature, receiving coverage from Boston’s Neighborhood Network News, along with an interview with Not Dead Yet Assistant Director Jules Good.

Second Thoughts MA: Disability Rights Advocates Against Assisted Suicide organized in 2012 and helped defeat the 2012 Ballot Question 2 for the legalization of assisted suicide. The group has successfully lobbied against every assisted suicide bill since.

Not Dead Yet is the leading national disability organization opposing assisted suicide laws, futility judgments, and “better dead than disabled” policies. The group organized in 1996 to help stop Kevorkian, whose victims were overwhelmingly disabled and not terminal.

Disability Rights Organizations who Joined DREDF Amicus Brief:

National Organizations

•Disability Rights Education and Defense Fund
• The Arc of the United States
• American Association of People with Disabilities
• Assn of Programs for Rural Independent Living
• Autistic Self Advocacy Network
• Autistic Women and Nonbinary Network
• Disability Rights Legal Center
• National Council on Independent Living
• Not Dead Yet
• National Organization of Nurses with Disabilities • TASH
• United Spinal Association
• World Institute on Disability

Massachusetts State Organizations

• The Arc of Massachusetts
• Disability Policy Consortium
• Independence Associates
• MetroWest Center for Independent living
• Second Thoughts Massachusetts
• Stavros Center for Independent Living, Inc.

Victory Against Assisted Suicide In Massachusetts Supreme Judicial Court!

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Following the precedent in the U. S. Supreme Court and several state high courts, the Massachusetts Supreme Judicial Court ruled in the Kligler case, rejecting the plaintiffs’ claim that assisted suicide is a constitutional right.

“Although we recognize the paramount importance and profound significance of all end-of-life decisions, after careful consideration, we conclude that the Massachusetts Declaration of Rights does not reach so far as to protect physician-assisted suicide.3 We conclude as well that the law of manslaughter may prohibit physician-assisted suicide, and does so, without offending constitutional protections.”

Not Dead Yet was one of nineteen disability organizations that joined in an amicus brief filed by the Disability Rights Education & Defense Fund.

We’ll cover this great news more in the coming weeks.

 

NDY’s John Kelly Among Those Featured in Boston Globe Article on Assisted Suicide

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Head and torso photo of white man with short gray hair, glasses and a light blue long sleeved shirt sitting in a motorized wheelchair in a white-walled room with various photos and electronics nearby.Boston Globe photo caption and credit: Disability-rights advocate John Kelly, director of Second Thoughts Massachusetts, at his Fenway apartment. The group opposes what it calls “assisted suicide.” Barry Chin/Globe Staff

Voices from the ‘right to die’ debate

By Robert Weisman Globe Staff,Updated December 11, 2022, 5:20 p.m.

In anticipation of the upcoming reintroduction of an assisted suicide bill in Massachusetts, Boston Globe reporter Robert Weissman had a pro assisted suicide [“medical aid in dying”] article and sidebar appearing on page 1 in the online version on the evening of December 11th. The main article is entirely proponent arguments, while the sidebar piece includes both proponent and opponent arguments.

Lead article: https://www.bostonglobe.com/2022/12/11/metro/lawmakers-citing-new-momentum-plan-reintroduce-right-to-die-bill-january/#bgmp-comments

Sidebar: https://www.bostonglobe.com/2022/12/11/metro/voices-right-die-debate/

Not Dead Yet’s John Kelly was included in the voices featured in the sidebar article. Here is the excerpt reflecting some of John’s perspective:

Disability-rights advocate John Kelly, who lives in Boston’s Fenway neighborhood, is director of Second Thoughts Massachusetts, a group opposing what it calls “assisted suicide.” He’s also a quadriplegic who injured his spinal cord in a sledding accident 38 years ago.

Kelly, 64, has testified against medical aid-in-dying legislation and organized a rally against the appeal to legalize it through the Supreme Judicial Court. He condemns a “better dead than disabled” mindset he sees in those distressed about loss of control at the end of their lives.

“Proponents say it’s about pain and suffering,” Kelly said. “But it’s relatively privileged people’s response to their own disability and dependence on others.”

Folks with disabilities often grapple with a lack of access to health care and home care services, he said. “Everyone should receive effective palliative care,” he said. “But we also believe people should be able to stay in their home and have adequate care there. This is really a values discussion masquerading as a medical issue.”

Kelly is also highly skeptical of treating a physician’s six-month prognosis as an exact science.

“People have to remember that doctors are often wrong about predicting when someone will die,” he said.

Shavelson Case Seeking Euthanasia Under Assisted Suicide Law Dismissed

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Good news! On Wednesday December 7th, Judge Chabbria of the United States District Court for the Northern District of California dismissed the Shavelson case, with prejudice.
Michelle Uzeta, the DREDF attorney who prepared our excellent Disability Amicus Brief, says this means the case is over at the district court level. NDY previously reported on the Brief HERE. Regarding this week’s ruling on the dismissal of the case, Michelle also wrote this to the Disability Amici (friends of the court):
If the plaintiffs want to continue to try and legally eliminate the self-administration requirement of the End of Life Options Act (ELOA), they will have to try their luck on appeal.
The judge found that the plaintiff’s lacked standing to pursue their claims, but added that even had they established standing, the claims would nonetheless fail on the merits.  Judge Chabbria found (as he has earlier in the case) that elimination of the self-administration requirement would constitute a “fundamental alteration” of the ELOA, crossing the line from aid-in-dying to euthanasia.
The court also granted our motion to file our amicus brief, ensuring that the brief is part of the official record on appeal.
Thank you for all your support as amici in the case. I believe it made a difference.

NDY adds our thanks to the organizations that joined DREDF’s important brief:

American Association of People with Disabilities, Association of Programs for Rural Independent Living, Autistic Self Advocacy Network, Autistic Women and Nonbinary Network, Disability Rights Legal Center, National Council on Independent Living, National Organization of Nurses with Disabilities, Patients’ Rights Action Fund, United Spinal Association and World Institute on Disability.