NDY Activists Deliver Counter to NY Assisted Suicide Proponents’ Lobby Day

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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

Phone: 850-377-5410
Email: jjhanson@patientsrightsaction.org

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

Phone: 720-413-9064
Email: acameron@notdeadyet.org

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.

 

NDY Staff Raise Disability and Minority Community Issues in Boston Training

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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.

ADAPT’s Powerful Statement in Response to US House Passage of “Healthcare” Law

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[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.

NDY Activist Mike Reynolds Testifies Against Maine Assisted Suicide Bills

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Long time NDY activist Mike Reynolds provided strong and effective testimony against assisted suicide bills in Maine, and attended the key committee work session held on April 19th. Here are his comments addressing Senator Brakey and Representative Hymanson:

My name is Michael Reynolds, I live in Lewiston, ME and strongly urge you to vote to oppose LD 347 and 1066, both laws that would permit assisted suicide in this state. As a disabled activist who has worked on this issue on state, national and (strangely) even internationally, this law with it’s sugarcoated title “Death with Dignity,” has been defeated eight times previously in this state, and is only before you today due to a non-profit . . . funded by out of state money, using a flawed law that has been disastrous in Oregon, with zero oversight if a doctor doesn’t use safeguards in the bill. In fact, why have safeguards if Doctors and the providers are given blanket immunity, and a teenager in our state would face greater penalties possessing Cannabis than a licensed medical doctor would with a botched assisted suicide.

And “Terminally ill” certainly has an interesting definition in LD 347, one that states that a person qualifies for a terminal prescription if the condition is “an incurable and irreversible disease that will, within reasonable medical judgment, result in death in six months.” There is no mention of whether the condition can be controlled by medication, nor any exclusion for an individual whose condition can be controlled by medication. People who have epilepsy, . . . or even have diabetes could be theoretically allowed to die under the proposed language in LD 347. Additionally, in the [Oregon state Death With Dignity Act] report . . . diabetes was given as an underlying terminal condition that, in Oregon, made the patient eligible for a lethal prescription. These two laws undermine the basic values of community and inclusion in our state.

In 2016, Oregon Public Health Division, “Oregon Death with Dignity Act: 2015 Data Summary,” a state publication that provides detailed analysis of how the state’s law is used year to year, published that less than 4% of patients who received a lethal dose of medication were referred to a psychological evaluation, making the risks of allowing someone with uncontrolled mental illness or depression are not only potential fears, they are actual realities in states where “choice” for “terminally ill” individuals have been law for twenty years. Additionally since 2000, the suicide rate for Oregon is 41 percent above the national average, according to Oregon Health Department. (1) In 2013, Portland, OR suicides were three times the national average, according to information reported by the Oregonian.(2)

Our state has one of the best Hospice networks in the nation. Maine people have fought to give access to much needed palliative care and therapy [through] . . . Maine Hospice providers, including the use of Medical Cannabis in Hospice facilities. The Maine Medical Cannabis program has helped an untold number of thousands of Maine individuals, from children to adults, receive locally grown, safely grown and regulated medical marijuana from nearly two thousand caregivers or eight dispensaries. Maine has the highest rated medical marijuana program in the country according to Americans for Safe Access, a pro-cannabis national nonprofit.

Interestingly, the people who are pushing for passage of this law point to control and compassion as reasons to support this law, yet the reality is much more complex than that. Under both proposed laws, as soon as the prescription is filled, the law is remarkably silent about the administration of the lethal medication. There is no exception for a pharmacist who may feel uncomfortable filling a lethal prescription for ethical or religious convictions. For anyone who thinks this will be simply taking a few pills and drifting off to sleep, that’s not how the process works. According to the Oregon Public Health Division . . . Secobarbital [is] the default drug to “die with dignity.” The therapeutic dosage of Secobarbital is 100 to 200 mg or one to two capsules taken orally. When a patient is given a lethal prescription of Secobarbital they are given 90-100 capsules, told to empty the contents of the capsule in a sweet tasting liquid, like ginger ale and then, drink the liquid. . . . [T]he lethal dose of Secobarbital can cost anywhere from 1,500 to 2,300 dollars. The cocktail can take anywhere from 2 hours to four and a half days to kill a patient (3), the drug does not always work; people have had to be revived after vomiting the solution.

Finally given the past few weeks in which people have been concerned about their health care and with real issues affecting access to health care, and even critical treatments such as organ transplants becoming a political issue, now is not the time for this law.

1.https://dredf.org/wp-content/uploads/2012/08/A-Deadly-Model-Suicide-Contagion.pdf

2.http://www.oregonlive.com/portland/index.ssf/2013/09/portland_suicides_almost_three.html

3.http://www.medscape.com/viewarticle/742070_3

Live On: Disabled Lives are Worth Living!!

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From the Center for Disability Rights’ Director of Advocacy, Stephanie Woodward:

The Live On Movement is a disability-led project for people with disabilities to see how worthwhile life is. Life can be hard sometimes, and this is even more true for people living with disabilities. Young people with disabilities face bullying, youth and adults with disabilities can be forced into nursing facilities, and plenty of people and businesses still discriminate against us every day. Whether you were born with your disability, your disability has slowly progressed as you grew older, or you suddenly acquired your disability, the challenges you face are real. But you can get through them!

Some people do not think they can get through the challenges they face, and some people may think there’s no way to live a happy, fulfilling life with a disability, but we know that’s not true. The Live On Movement was created to show people with disabilities the incredible lives they can lead, and all they need to do right now is choose to Live On.

The mission of the Live On Movement is to show disabled people everywhere that life is worth living and to connect people with the resources they need to Live On.

From CDR’s press release:

Live On is an online campaign aimed at encouraging people with newly acquired disabilities, progressive disabilities, or young disabled people who might be more susceptible to bullying and suicidal ideation, to consider the value of their life as a disabled person. Many times, people in these situations receive strong messages from society that their life is not worth living. Since disabled people often lack disabled role models who are flourishing in the same situation as theirs, it is easy to accept these negative messages. This project is aimed at reversing that narrative through a series of short, but powerful videos that highlight the experiences of people who may have struggled to accept their disability at first, but have now built a life worth living with their disability and not just in spite of it.

In addition to the videos telling the stories of disabled lives well lived, Live On offers a variety of resources for disabled people who may be struggling with depression and/or suicidal thoughts. This includes information like how to contact the Crisis Text Line and the National Suicide Prevention Lifeline. Resources are also available for contacting the hundreds of Centers for Independent Living that are scattered across the United States, offering expert knowledge and first-hand experience in living with a disability as a fully integrated member of society. 

Individuals with disabilities who want to share their stories can contribute to this ongoing project with a video or a blog, submitted at www.liveon.net. Further, suicide prevention organizations looking to better serve people with disabilities can contact us for consultation and training.

“There is no doubt that Live On has the potential to save lives,” says Dominick Evans, a Project Coordinator for the Live On campaign. “This is the first project of its kind in the United States to directly speak to disabled people who have been placed at the margins of society and told that their lives don’t matter.”

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