Disability rights activists from across the state will rally as the New York Court of Appeals hears oral arguments Tuesday afternoon, May 30th in the Myers v. Schneiderman assisted suicide case.
Not Dead Yet led the filing of a Disability Rights friend-of-the-court brief in the Court of Appeals in support of the New York State Attorney General, and earlier rulings in the case by the Supreme Court and Appellate Division, both of which dismissed a case seeking to legalize physician assisted suicide.
Joining in the Not Dead Yet brief were ten other national and New York state disability rights organizations: ADAPT, the Autistic Self Advocacy Network, the Center for Disability Rights, the Disability Rights Center, the Disability Rights Education & Defense Fund (DREDF), the National Council on Independent Living, the New York Association on Independent Living, Regional Center for Independent Living and United Spinal Association, collectively referred to as the “Disability Rights Amici.”
New York attorney Adam Prizio handled the filing on behalf of the disability organizations. “Our basic position is that when some people get suicide prevention while other people get suicide assistance, and the difference is the person’s age, disability or health status, that’s unlawful discrimination,” said Prizio. “It’s a problem that certain people are being told that others not only agree with their suicide, which is bad enough, but will even help them carry it out. It’s a deadly form of discrimination and, as our brief says, it violates the Americans with Disabilities Act.”
Marilyn Golden, senior policy analyst with DREDF, summarizes concerns about a government authorized, medically administered public policy of assisted suicide as follows: “If assisted suicide is legalized, some people’s lives will be ended without their consent, through mistakes and abuse. No safeguards have ever been enacted or proposed that can prevent this outcome, which can never be undone.”
Disability advocates are often criticized by assisted suicide proponents who claim that assisted suicide is only for the terminally ill, not people with disabilities. Activists will distribute information which refutes that claim based on data from Oregon, where it is legal.
The brief also expresses concerns about the context of health care cost-cutting in which assisted suicide is being advocated. “Elders and people with disabilities too often face economic or other pressures to get out of the way,” said Diane Coleman, president/CEO of Not Dead Yet. “If assisted suicide becomes an accepted practice, coverage may be denied for more expensive healthcare, as we’ve already seen in Oregon and California. What is being promoted as a ‘right to die’ could very quickly become an expectation, even a duty to die in this climate.”
A case pushing New York courts to find a state constitutional right to assisted suicide will be heard in oral argument in the NY Court of Appeals, the state’s highest court, next Tuesday, May 30th.
Not Dead Yet filed friend-of-the-court briefs, joined by ten other national and New York state disability rights organizations, at both the Appellate Division and Court of Appeals.
Attorney for the Court of Appeals brief, Adam Prizio, said, “Our basic position is that when some people get suicide prevention while other people get suicide assistance, and the difference is the person’s age, disability or health status, that’s unlawful discrimination. It’s a problem that certain people are being told that others not only agree with their suicide, which is bad enough, but will even help them carry it out. It’s a deadly form of discrimination and, as our brief says, it violates the Americans with Disabilities Act.”
The Disability Rights brief was cited by the NY Attorney General’s brief when making the point that “terminal” prognoses are often wrong, a common experience among people with disabilities who have been given such faulty predictions.
Physicians are often unable to accurately ascertain how much time a patient has remaining to live, and not infrequently misdiagnose an illness as terminal. See Physicians Amici Br. at 17-18; Amicus Br. of Not Dead Yet, et al. (“NDY Amici Br.”) at 9, 17; . . .
The Oregon assisted suicide data confirms this “terminal uncertainty” and, moreover, shows that nearly everyone who receives lethal prescriptions in Oregon is disabled. Here is what we know from the Oregon state data:
People with the following conditions have been given lethal prescriptions – ALS, heart disease, COPD,benign and uncertain neoplasms, other respiratory diseases, diseases of the nervous system (including multiple sclerosis, Parkinson’s disease and Huntington’s disease), musculoskeletal and connective tissue diseases, viral hepatitis, diabetes mellitus, cerebrovascular disease, and alcoholic liver disease.
Oregon receives reports on how many people outlive their “terminal prognosis” but have been given lethal prescriptions every year, but the state’s public report does not tell how many, and it destroys the underlying data.
The top 5 reasons people are reported to request assisted suicide are disability concerns that have not been addressed but could be: “loss of autonomy” (91 %), “less able to engage in activities” (90%), “loss of dignity” (77 %), “losing control of bodily functions” (47%), and “burden on others” (42 %). So virtually all are disabled!
I was recently interviewed by Zolan Kanno-Youngs for the Wall Street Journal about the case, and quoted as follows:
Some disability organizations argue allowing doctors to assist in one’s death would put the vulnerable at risk. Health officials should prioritize providing the best treatment to the disabled and ill, said Diane Coleman, president and chief executive of Not Dead Yet, a disability-rights group.
“The proper role of health-care providers and other professionals is to be telling people that their lives are worth living whatever they may experience,” said Ms. Coleman, who is 63 years old and has a neuromuscular disability. . . .
Ms. Coleman said regardless of the patient’s condition, helping someone end their life would be aiding a suicide. . . . “Why is our society talking about taking this group—old, ill and disabled people—and carving them out of that policy of suicide prevention,” said Ms. Coleman “To us it seems like here we are being devalued again.” (NEW YORK APPEALS COURT TO HEAR CASE ON DOCTOR AID IN DYING, Wall Street Journal, May 23, 2017.)
Nearly 20 disability activists wearing hot pink Not Dead Yet – The Resistance t-shirts took their message to Albany on May 9th. This was the lobby day scheduled by assisted suicide proponents, but NDY refused to give them the last word.
NDY activists pose in a group at a staircase in the Capitol in Albany. The group includes 5 women using wheelchairs, and they are wearing hot pink t-shirts with black lettering saying “Not Dead Yet” in large letters and “The Resistance” in small letters below.
News coverage in the Albany Times Union quoted Adam Prizio, who serves as manager of governmental affairs for the Center for Disability Rights, and is also NDY’s attorney in the friend-of-the-court brief filed in the NY assisted suicide case being heard in the Court of Appeals later this month.
Opponents of aid in dying have said that if legislation is approved, medical research, health care providers and the disabled could be negatively impacted. Opponents also have warned that without proper oversight, there is potential for abuse by those who want to end the burden of caring for a terminally ill loved one.
“There’s no way to open this door just enough,” Adam Prizio, government affairs manager for the Center for Disability Rights, told the Times Union earlier this year. “No matter where you open it, some number of people with disabilities will be killed through coercion, through abuse, or through insurance companies trying to save money.”
NDY activists plan to continue their opposition to a state supported, medically implemented program of assisted suicide throughout the legislative session.
In connection with the day’s activity, the NY Alliance Against Assisted Suicide issued the following press advisory, quoting NDY’s Director of Minority Outreach, Anita Cameron.
MEDIA ADVISORY: May 8, 2017 Assisted Suicide Opponents Offer Alternative Perspective
Albany, NY – Physician-assisted suicide proponents will be lobbying for assisted suicide legislation in Albany on Tuesday, May 9, 2017. The New York Alliance Against Assisted Suicide offers the following contact information and comment for an alternative perspective.
JJ Hanson, President, Patients’ Rights Action Fund and Terminal Brain Cancer Patient
Hanson says: “I’ve seen firsthand the dangers inherent in doctor-prescribed suicide. My own doctors mistakenly told me that I had less than 4 months to live, yet here I am today—over 3 years later. In states where assisted suicide is legal, terminal patients have been offered lethal drugs by their insurance companies while coverage for the care they need was denied or delayed. In the states where assisted suicide has been legalized, there has not only been an increase doctor-prescribed death, but also an increase in the general suicide rate as well.
Assisted suicide puts the lives of those who are most vulnerable at risk.”
Mrs. Lynda Holler, Widow, Mother and Concerned Citizen (Brewster, NY)
Phone: 845-278-8239 Email: lyndaholler@gmail.com
Holler recounts: “My husband, Kenny, was diagnosed with oral cancer eight months after we were married. We battled that horrendous, debilitating disease for twenty-one years. By the time Kenny died in 2014, together with our teenage sons, we had come to truly experience the fruits of deep love and sacrifice. Physician-assisted suicide perverts the dying process and robs families of irreplaceable end-of-life opportunities. Through Kenny’s model of suffering and living his life out to its natural end, I have come to recognize that how we die is the culminating statement of our lives. Through it, Kenny taught the communities of people around him both how to live and how to die. That is death with dignity, and our boys and I couldn’t be more peaceful or more proud.”
Anita Cameron, Director of Minority Outreach, Not Dead Yet
Cameron notes: “All of the major disability organizations that have taken a position believe that the legalization of assisted suicide is dangerous. It is inherently discriminatory; it opens the way for insurance companies to choose assisted suicide as an option, because it is cheaper than paying for life-saving drugs and treatments; it allows doctors to be gatekeepers to decide whose lives are worthy; and it makes it possible for unscrupulous and abusive family members and heirs to coerce their relative into choosing suicide even if it isn’t what they want.”
David Kim, MD, American Academy of Medical Ethics
Phone: 718-974-8776 Email: nys.aame@gmail.com
Kim says: “As a physician treating critically ill patients for many years, I fear what the legalization of assisted suicide will mean for my profession and the trust patients will have in it. Will my patients be able to trust my judgment and their best interests knowing that I could become their judge, jury and executioner all in one? What will the repercussions be on our ability to truly care for our sickest patients if I as a professional, trained in a healing profession, look at someone in desperate need and say with my words and actions, ‘your life may not be worth living’? It is far better for the patient and the profession to insist that life is in fact worth living for, and to fight the physical, mental and emotional suffering of patients and their families with personal affirmation, effective pain control and counseling support, instead of giving in to their despair. We fight against the pain of suicide and its well- documented causes everywhere else in society—why should physician-assisted suicide be a justifiable exception?”
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The New York Alliance Against Assisted Suicide is an informal association of many diverse organizations, institutions, agencies and individuals in New York State committed to preventing the legalization of assisted suicide in the state. They include representatives of the following communities: disability rights, patients’ rights, health care, civil rights, senior rights and various faith-based advocacy organizations.
On Saturday, May 6th, NDY’s John Kelly and Anita Cameron were part of a very informative and successful training on the dangers of assisted suicide legislation held in Boston by the Patients Rights Action Fund (PRAF). PRAF is an important partner in coalitions that oppose legalization of assisted suicide, and has offered similar trainings in many states across the country.
White man in motorized wheelchair sitting behind podium facing conference room tables, with an assistant and flip chart in the background.
In addition to numerous topics effectively covered by PRAF leadership, John Kelly, NDY’s New England Regional Director, talked about “The Messenger.”
Everyone can be an effective advocate against assisted suicide. If you don’t have your own story, you can use stories about other people. You can talk to people you know, you can talk with legislators, you can write letters and op-eds and use social media.
For spokespeople for a campaign, there are many good candidates, including disabled people, medical professionals, people of color, and people with powerful personal stories, like being misdiagnosed as terminal or having been suicidal. For example, because my disability is obvious, and many people think that they would rather be dead than like me, I can speak honestly against the mindset of “better dead than disabled.” I can try to humanize my position and nudge people out of their prejudices.
It’s important to talk about social justice, protecting innocent people, and looking at the significance of enacting assisted suicide as a state supported program.
John then asked Anita Cameron, NDY’s Director of Minority Outreach, to talk a little bit about bringing the message to people of color.
African American woman standing behind podium, with white man in motorized wheelchair in foreground looking at her.
Anita spoke about outreach to communities of color, particularly the Black community:
One has to acknowledge that with communities experiencing systemic racism and poverty, we may not see doctor assisted suicide as something that directly affects us. When people are worried about surviving a traffic stop or other encounter with the police, assisted suicide seems like something privileged people worry about. The same can be said about disabled communities of color.
The best way to reach communities of color, particularly Black people, is to highlight the racial disparities in health care and show that assisted suicide laws put us in greater danger of being coerced into assisted suicide because our lives are more likely to be devalued, especially if we are living in poverty and denied quality healthcare and palliative care.
Although there are difficulties in organizing because of perceptions, people of color must reach out to our states’ Black, Puerto Rican, Hispanic and Asian caucuses and members of the legislature to talk about the dangers of doctor assisted suicide to our communities.
[Editor’s note: After an all-day online conference related to brain injury healthcare, I learned the horrible and life threatening news of House passage of the new “healthcare” law, which is really the old law of no protection for all of us with pre-existing conditions, and those of us who need home and community based long term services and supports. NDY applauds ADAPT’s powerful statement and call to action. We must all make our voices heard before it’s too late!]
ADAPT Statement in Response to Passage of the American Health Care Act in the US House of Representatives
The ADAPT Community is gravely concerned by the House of Representatives’ ill-considered passage of the American Health Care Act (AHCA). The legislation, which received significant amendments only days before the vote, has serious problems which House Republicans – in their haste to pass something and declare victory – have refused to address.
This legislation – if it were to pass the Senate and become law – will have a truly devastating impact on seniors and people with disabilities. It will:
– Destroy the insurance protections for individuals with pre-existing conditions that allow them to receive necessary healthcare services;
– Undercut access to vital Medicaid healthcare as well as long-term services and supports (LTSS) needed by older and disabled Americans; and
– Eliminate the incentive to provide community-based services to disabled Americans established in the Community First Choice Option.
Eliminating Protections for People with Pre-existing Conditions
Although recent changes to the legislation secured the support of moderate Republicans, those changes do little, if anything, to mitigate the dangerous impact of this legislation, particularly on people with pre-existing conditions. Insurance companies will be able to charge exorbitant premiums to disabled and elderly individuals leaving these individuals without healthcare.
Cutting Medicaid Funding Needed to Support Elderly and Disabled Americans
As written, the legislation will cut more than $830 billion from the Medicaid program, forcing states to choose between raising state taxes and cutting healthcare services for poor children, the disabled and seniors. These cuts couldn’t come at a worse time. As our population continues to age, more and more people will rely on Medicaid to cover vital long-term services and supports, further straining state resources. States will reduce Medicaid benefits, impose waiting lists, implement unaffordable financial obligations, or otherwise restrict access to needed assistance. Without adequate support in the community, families will be forced to place their loved ones in nursing facilities and other institutions, only increasing the strain on already-limited Medicaid resources.
Eliminating Federal Incentives Designed to Promote Community Integration
For elderly and disabled Americans who rely on it, Medicaid is not just a health insurance program: it literally supports their lives and their liberty. Outside of the Disability Community, there has been virtually no public discussion about how the AHCA eliminates the enhanced Federal funding associated with the Community First Choice Option (CFCO). CFCO was the result of nearly a quarter century of work by ADAPT and other disability rights advocates. This Medicaid option provides additional funding to states that provide LTSS in the community to people who would otherwise be placed in a nursing facility or institution.
CALL TO ACTION
We do not believe that American voters intended this Congress and President to cut vital services for economically disadvantaged, elderly and disabled Americans to provide tax breaks to the wealthiest of our nation. Indeed, President Trump campaigned on a promise that there would be no cuts to Medicaid. Now, more than ever, it is critical that disabled and elderly individuals, their families, and their advocates understand the dangerous implications of this legislation and become politically active. Although AHCA has passed the House, it still must pass the US Senate before it can be signed into law. We must educate our communities about the dangerous implications of this bill and urge our Senators to vote against the bill.
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ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.
