Not Dead Yet Condemns Lawsuit Attacking Community Living

Not Dead Yet (NDY) writes to express our strong opposition to the lawsuit Texas v.
Kennedy and its goals. Texas and nine other states (Alaska, Florida, Indiana, Kansas,
Louisiana, Missouri, Montana, and South Dakota) have decided to spend taxpayer
dollars undermining people with disabilities’ right to community living. Members of the
independent living movement founded NDY. We share their commitment to equality and
freedom for people with disabilities. By attempting to destroy Section 504’s
deinstitutionalization framework, state plaintiffs do the opposite.

The plaintiffs’ lawsuit is a direct continuation of Texas v. Beccera, a lawsuit by sixteen
U.S. states which failed to argue that Section 504 was unconstitutional. The current
lawsuit targets only HHS’ 2024 Final Rule, but plaintiffs’ commitment to disability-based
segregation is the same. In their new lawsuit plaintiffs argue that the Final Rule’s
requirement that federally funded providers offer services in “the most integrated setting
appropriate” is unconstitutional. Plaintiffs also argue that the rule’s prohibition of actions
that put people with disabilities at “serious risk” of institutionalization is unconstitutional.

Both arguments flagrantly contradict the letter and spirit of the Supreme Court’s
decision in Olmstead v. L.C. ex. rel. Zimring (1999), which mandates offering services in
the community whenever doing so is possible, despite their arguments to the contrary.
The lawsuit repeatedly mentions the “expense” of providing community-based services.
In short: the arguments attempt to defy decades of public debate on disability,
significant changes to federal law and policy and serious efforts to reform the service
system and Medicaid as a primary payer in favor of a bald-faced attempt to save money
at people with disabilities’ expense.

NDY has always focused on assisted suicide and euthanasia laws’ implications for the
broader healthcare delivery system. We believe that these laws are healthcare
discrimination and that they represent a significant threat to health equity. NDY
therefore, cannot and will not accept actions by states that treat paying for their disabled
citizens’ care in the community as a burden. Medicaid began to fully transition away
from an institutional model more than a decade ago. It is past time for the plaintiffs to ensure people with disabilities have the right to full, independent, self-determined lives with access to services.

For more information on Not Dead Yet and our policy positions, please reach out to
Kelly Israel, Not Dead Yet’s Interim Deputy Director, at kisrael@notdeadyet.org.

Please also see DREDF’s blog piece for an in-depth look into the situation as it unfolds: Texas and Eight Other States Renew Attack on Section 504 and the Right of Disabled People to Live in their Communities

In Solidarity,

Kelly Israel

Interim Deputy Director

Not Dead Yet

In Memoriam: Bob Kafka: Pivotal National Disability Rights Advocate Passes Away at 79

On behalf of the Board of Directors of Not Dead Yet, we express profound sadness at the news that legendary ADAPT organizer, first ally of Not Dead Yet, and pivotal disability rights advocate, Bob Kafka has passed away at his Austin, Texas home on December 26, 2025.

First, our deepest heartfelt condolences to Stephanie Thomas, Bob’s partner. During this difficult time, we will not forget their important work, instrumental in shaping attitudes and policy in Texas and across the nation, that true inclusion of people with disabilities benefits all of society.

In the coming days, we will provide a longer entry, but for now, please find below from Bob Kafka’s long running podcast, Barrier Free Futures, part of an interview between Not Dead Yet’s late Foundress and President, Diane Coleman, and Bob Kafka. It was Bob who came up with our organization’s name, “Not Dead Yet,” as detailed below:

 

Bob Kafka:

…But when did you start Not Dead Yet? And it really – that name is sort of grabbing. How did that begin and what is the mission of Not Dead Yet?

Diane Coleman:

Well, I started it on April 27, 1996, so, that’s almost 24 years ago now. And, it was actually, a number of people had been talking to me about starting a group like that. But it was actually, Bob, when I came up to you at a disability policy conference and you said, “Well, I got an idea for a name for your group.” You’d been hearing about it and it was out of Monty Python and the Holy Grail, “Not Dead Yet.” That kind of made it happen. I actually made a little sign with the words “Not Dead Yet” and I went around and got people to sign on to some testimony. It was my first time testifying in Congress. There were all kinds of people there that signed on that are very well known. Disability advocates like Justin Dart, Judy Heumann, and so forth. But it was actually you giving me the name that got it going.

Bob Kafka:

It’s funny because if people haven’t seen The Life of Brian, it’s actually in a very bizarre way, very relevant in that, in that movie it’s during the plague and it’s throwing bodies on this cart and there’s a guy who is driving the cart and the bodies are supposed to be people who have died but they keep popping up and he hits them with a hammer, and they keep popping up and say, “Not dead yet”…”

*  *  *  *  *  *

 

 

In September, Bob had asked me to appear on Barrier Free Futures, but owing to a scheduling conflict where I had been previously scheduled to return to Canada, I was unable to be interviewed by the great man. We had purposed to circle back and reschedule a time to talk when it was mutually convenient. I had hoped for early in the new year.

Another reminder, that in everything we do and say – and think – in this common fight, that everything we can do now…we should.

From the Andrew Weber article linked above, for KUT Radio, NPR’s Austin Station:

“For Armbruster, he can’t help but hear Kafka’s other mantra, one that served as his email signature: “Don’t mourn, organize.”

“It’s kind of ironic in this situation with him passing, but I’m sure that’s what he would want us to do,” Armbruster said, “to lead on and to move on and to continue the fight.”

 

Onward,

Ian McIntosh

Executive Director

Not Dead Yet.

The Tragedy of Eileen Mihich: A Woman with Mental Illness Abandoned by the System into the Waiting Jaws of Assisted Suicide.

Eileen Mihich deserved better.

Aging With Dignity has put out a powerful, short film that further dispels the disingenuous claims by ableist proponents of assisted suicide laws that there has never been a single instance in which safeguards have failed. To the assisted suicide proponent question: Where is the evidence of abuse, coercion and error? The Tragedy of Eileen Mihich is an emphatic: Here it is!

For many outside of the disability community, the concept of disability bias and medical futility is difficult to grasp, in the rare instances it’s known of at all. Medical futility and assisted suicide are stems from the same disability bias branch which sees disabled lives as lives not worth living. Assisted suicide legislation, where the state enacts so-called healthcare policy that calls and provides death a cure, is merely the monstrous culmination of disability bias, albeit discharged by a delivery system on a much larger scale, but from the same eugenical engine. Whether it’s denial, delay or direction toward assisted suicide as an equivocal option to a legitimate cure, the tragedy of Eileen Mihich is not unlike that of Michael Hickson where the perception of life with a disability is devalued as a life worth less, a worthless life and better off dead.

Eileen was devalued by her family first, and then the system. Eileen needed protection from her family owing to abuse and neglect and trauma from a young age. Into adulthood, Eileen suffered from severe mental illness and still needed protection, delivered in the most caring, compassionate manner possible.

Instead, Eileen was abandoned by our broken healthcare system, and once she set her foot into the proverbial doorway of the assisted suicide enterprise, she was pulled in, and the very safeguards that proponents assured would save Eileen, disappeared. According to Eileen’s Aunt Veronica, so did assisted suicide proponents when tasked to stand by their assurances. She noted that for Eileen: “It wasn’t that hard for her to exploit [the so-called safeguards] and that’s really dangerous.”

During the film, there is a clear pattern provided by Eileen’s Aunt, in which time after time, whether it was the death doula, the pharmacist or those in professional assisted suicide advocacy organizations, Eileen, an obviously conflicted young woman with severe mental illness, is repeatedly abandoned. She is never seen as a life worth saving, but rather, an opportunity to validate the idea that suicide is rational if you happen to have a disability.

Eileen was sad. But even in her darkest moments, Eileen texted: “I don’t actually want to die.”

Eileen’s Aunt ultimately concluded: “I place more guilt on the Death With Dignity people.”

She added that this organization (who campaigned on promises of assured safeguards), didn’t respond in a way that could be seen as human, didn’t want to take accountability, weren’t shocked and didn’t appear to hold the view that Eileen’s death and the circumstances surrounding it, were unacceptable.

A conclusion that’s hard to argue against when the history of assisted suicide legislation demonstrates that once an incipient bill is passed, so-called safeguards turn into barriers that must be removed in order to provide “meaningful access”.

She added, “The road to hell is paved with the best intentions” at the end of an observation in which she believes that Washington’s Death With Dignity Act was conceived and launched with the best of intentions, and yet despite those intentions, failed Eileen.

What Not Dead Yet, and the other disability rights organizations who have been fighting assisted suicide legislation for decades have been repeating, is that the instance a bill is passed, the bait and switch follows. And at every opportunity, we have countered proponent narratives that there has never been a single instance of abuse, coercion or error. In order for their claims to fail, abuse, coercion or error only has to happen once. And of course, as we know, it has happened multiple times, here in America and in other international jurisdictions.

At the writing of this blog, New York Governor Kathy Hochul has joined fellow Democrat Governor of Illinois, J.B. Pritzker in allowing assisted suicide to endanger their states’ most vulnerable people. Both mentioned signing bills on the condition of safeguards. As an example, in New York, a few key protections listed that will go into the bill are: Limiting access to New York residents and mandatory mental health evaluations by a psychologist or psychiatrist.

But Eileen Mihich died under Washington’s Death With Dignity Act despite not being a resident of Washington state and despite not having received a mandatory mental health evaluation by a psychologist or psychiatrist (amongst other compromised safeguards) and yet still gained access to lethal drugs which she clearly conveyed she intended to use to kill herself.

The Tragedy of Eileen Mihich is a must-see and reaffirms the fact that assisted suicide laws are not designed to maintain initially advertised safeguards, which have never worked, and will never work.

It is a mistake to believe that the intentions of professional assisted suicide advocacy organizations aren’t to create laws that don’t resemble those run amok in other “jurisdictions” like Canada and the Netherlands, where assisted suicide is either poised to be offered where mental illness is the sole criterion, or is in full systematic flight.

And as such, it is a horrifying but necessary realization to understand, that in this space, for some, Eileen’s death was acceptable, and worse: it was deemed right and rational because she was disabled.

 

Ian McIntosh

Executive Director

Not Dead Yet

 

 

 

 

 

Not Dead Yet Files Delaware Lawsuit To Overturn Assisted Suicide Law

Not Dead Yet is proud to join Sean Curran and five other organizational plaintiffs
(Delaware ADAPT, Freedom Center for Independent Living, United Spinal Association,
National Council on Independent Living, Institute for Patients’ Rights) in a lawsuit
against health agencies in Delaware and their use of the End of Life Options Act
(EOLOA). Not Dead Yet opposes assisted suicide laws as blatantly discriminatory and
extremely dangerous. These laws treat disabled lives as not worth living and people
with disabilities as better off dead. It’s time the citizens of Delaware fought back.

Our lawsuit argues that implementation of Delaware’s assisted suicide law violates the
Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973.
Delaware health agencies do so by applying EOLOA and steering patients with certain
kinds of disabilities (namely, terminal illnesses) away from suicide prevention services
and towards assisted suicide. For example, health agencies fail to apply stringent
standards for suicide prevention in Delaware to patients with terminal illnesses and
instead – by offering them EOLOA – direct these patients to end their own lives. The
Americans with Disabilities Act and Rehabilitation Act are clear that this impermissibly
treats individuals differently solely on the basis of disability.

As the lawsuit explains, Delaware’s assisted suicide system effectively creates a “two-
track system” of care – one track for people with life-threatening disabilities and one
track for people without these disabilities. This two-track system is further entrenched by
a failure to pay for appropriate long-term care and palliative care services for all citizens
of Delaware. People who have been newly diagnosed with a life-threatening or
significant illness often struggle to make sense of their lives post-diagnosis, at least at
first. They also struggle to pay for the supports and services that will help them live
good lives. Insurance may in fact cover assisted suicide but not support services. In this
context, patients do not have a true “free choice” between living on and assisted
suicide.

We urge Delaware direct its resources to improve the lives of people with disabilities
instead of ending them. Delaware could, instead of advancing early death, advance
comprehensive palliative care coordination and improved access to payment programs
such as Medicare and Medicaid. Without these assurances and an end to assisted
suicide, we have no choice but to fight back in court. We unite today to fight for disabled
lives and disabled futures.

 

In Solidarity,

Kelly Israel

Interim Deputy Director

Not Dead Yet

 

BREAKING NEWS: Compassion and Choices Suffers Damaging Court Loss in New Jersey

For some it may be unthinkable at any time of the year, let alone during the holiday season, that there is a cadre of relentless professional assisted suicide advocacy organizations seeking more efficient ways for people with disabilities to kill themselves during this national moment when Medicare, SNAP, and “streamlined” federal departments (i.e. HUD ) poised to present increased difficulties to for our country’s most vulnerable population to live as 2026 looms.

Against this harrowing backdrop, some great news: Our co-plaintiff’s sister organization, the Patients Rights Action Fund (PRAF), provided the following encouraging update:

 

“A federal appeals court has delivered a damaging blow to the Compassion and Choices lawsuit seeking to eliminate New Jersey’s requirement that only residents have ability to request lethal drugs under its assisted suicide law. The denial of this request upholds the decision by a district court judge earlier this year to maintain New Jersey’s residency requirement.

“New Jersey has sound reasons to limit this grave choice to its own residents,” Judge Stephanos Bibas wrote for the US Court of Appeals for the Third Circuit. “Protecting vulnerable patients and their doctors (not to mention avoiding friction with other states) justifies the residency requirement under any applicable test.”

Compassion and Choices has filed suit in Oregon, Vermont, Colorado and New Jersey to eliminate residency requirements. The Vermont and Oregon suits were made moot when their legislatures passed legislation to eliminate the requirements. The Colorado suit is in limbo as the main plaintiff is now deceased. Thus, the New Jersey decision is the clearest indication of judicial opinion on residency requirements, and this is a massive victory for medical professionals, disability advocates, and all vulnerable patients. 

Executive Director of PRAF, Matt Vallière, said “Big win today for vulnerable people in states where they are protected from the dangers and discrimination inherent to assisted suicide laws. The court, in ruling to maintain the New Jersey assisted suicide residency requirement, protects millions who live out of state from deadly harm.

 

Absolutely.

 

In Solidarity,

Ian McIntosh

Executive Director

Not Dead Yet