Bipartisan Agreement on Killing Disabled People

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Although most people, policy makers and media, are not talking about people with disabilities, we’re acutely aware of the disparate ways that both the right and the left are fine with policies that will clearly lead to our premature deaths, along with the millions of seniors who depend on Medicaid to supplement Medicare.

On the national scene, the American Health Care Act (an oxymoron if ever there was one) threatens coverage of the care we need to survive, be as healthy as possible, and live in our own homes, not nursing homes. As Bruce Darling, CEO of the Center for Disability Rights, wrote in an op-ed entitled Disabled New Yorkers will lose their independence, suffer and die:

Medicaid pays for a wide range of services and supports for disabled individuals and seniors:

  • The community habilitation worker who takes developmentally disabled individuals to the grocery store;
  • The attendant that supports an elderly woman staying in her home;
  • The custom wheelchair and speech-board — like those used by Stephen Hawking — that makes college and employment possible for a young woman with muscular dystrophy;
  • The ventilator used by the young man who became a quadriplegic on the football field.

Scores of disability activists protested the bill and closed down the U.S. Capitol rotunda yesterday, with 54 arrested by police, including Not Dead Yet’s Anita Cameron. It took this loud and strong action to get at least some attention paid to the mass devastation inherent in AHCA. Here are some examples of press taking notice:

On the other side, we have physician assisted suicide bills moving forward in Hawaii, Maine and Nevada, with similar bills introduced in about a dozen other states. If any readers don’t think assisted suicide is relevant to disabled people, John Kelly sums it up nicely in his op-ed this week in the Santa Fe New Mexican concerning the NM assisted suicide bill SB 252:

Millions of people now face the prospect of losing health insurance if Congress repeals the Affordable Care Act. That will mean even less choice. SB 252 would have put depressed people with a serious health condition or disability at risk. . . .

We now have 25 years of reports from Oregon and Washington, which show that pain (which includes fear of pain) is the sixth-cited of seven “end-of-life concerns.” Oregon physicians report giving lethal drugs mainly due to psychosocial distress about disability, including dependence on other people (“losing autonomy,” 91 percent), grief over lost abilities (90 percent), loss of the respect of others (“loss of dignity,” 77 percent), needing help with incontinence (“losing control of bodily functions,” 47 percent) and believing that suicide would leave loved ones better off (“burden on family, friends/caregivers,” 42 percent).

What we disabled people see in legalizing assisted suicide is that some people receive suicide prevention, while others get suicide assistance, based on value judgments and prejudice. Instead, let’s make sure that people have the choice and support to live — and die — comfortably, at home, with pain controlled and dignity intact.

The New Mexico assisted suicide bill was defeated in a bipartisan vote that hopefully demonstrates a welcome insight on the issues.

Still, it feels like people with disabilities are stuck in a room between walls on the right and the left, closing in on us.

Disability Advocates In D.C. Area Needed To Help Protect Medicaid

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Not Dead Yet is among many disability organizations that work to protect and expand health care programs for all people. The disability community significantly depends on publicly funded health care. In general, the private insurance industry sees many of us as a drain on their bottom lines. It’s not complex economics, but simple revenue (premiums) minus expenses (health care provided) equals net profit. Public relations language about “consumer choice” and “access” to coverage cannot hide this simple equation.

Next Wednesday, disability advocates will have an opportunity to support federal legislators who are working to protect Medicaid by attending a press conference being led by Pennsylvania Senator Bob Casey. Here are the details from the Senator’s advisory:

U.S. Senator Bob Casey (D-PA) will lead the disability community in a opposing TrumpCare’s decimation of Medicaid, Wednesday, March 22nd at 11:00am. Joined by disability advocates from across the nation and members of the Senate, Casey will detail how TrumpCare ends Medicaid by turning it into a block-grant program, resulting in $880 billion in cuts over the next decade. TrumpCare’s draconian cuts to Medicaid will mean substantially less care for those with disabilities.

March 22nd Details

Event:                   #SaveMedicaid
Date:                       Wednesday, March 22nd
Time:                     11:00-11:45 a.m.
Place:                     East side of the Capitol across from the Senate
Speakers:              Senator Bob Casey and other Members

Not Dead Yet encourages disability advocates to lend their presence and voices to this and other critical efforts to save our healthcare and our lives.

After writing the above, I also saw an announcement that the National Council on Independent Living is calling for simultaneous press conferences across the U.S. You can read their Action Alert here, including a toolkit and other helpful information.

NDY in National Disability Leadership Alliance: Opposing Cuts To Vital Healthcare

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[Editor’s Note: NDY is a member of the Steering Committee of the National Disability Leadership Alliance. The Steering Committee consists of 15 national organizations run by people with disabilities. Below is a press release issued by NDLA in connection with a letter joined by over 200 disability groups opposing Congressional efforts to cut healthcare and home care that is essential to our community.]

Contact information:

Karen McCulloh, Director, National Organization of Nurses with Disabilities, 847-966-4699, karenmcculloh@gmail.com
Kelly Buckland, NCIL Executive Director, 202-207-0334,Kelly@ncil.org
Samantha Crane, Autistic Self Advocacy Network, Legal Director, Director of Public Policy, 202-509-0135, scrane@autisticadvocacy.org
Bruce Darling, National ADAPT organizer, 585-370-6690, BDarling@cdrnys.org

National Disability Leadership Alliance and over 200 Organizations from Across the United States Express Opposition to Congressional Efforts to Cut Vital Health Care and Community Based Services for People with Disabilities.

The National Disability Leadership Alliance (NDLA) today published a letter signed by over 200 disability organizations from around the country, calling on Congress to preserve Medicaid services for people with disabilities, including community-based long term services and supports. The letter identifies several programs that “underpin one of the most fundamental rights that Americans are guaranteed under the Declaration of Independence and the Constitution: Liberty.”

“The number of organizations that have signed on shows that the Disability Community is united in opposing any efforts which will reduce services that enable disabled people to live in the community and lead an independent life,” said Gary Arnold, President of Little People of America. “Disabled people have the same right to live in the community as all Americans, and the bill proposed by this Congress guts the programs that secure that right.”

The letter follows upon the release earlier this week of the American Health Care Act (AHCA), introduced by Congressional Republicans to replace the Affordable Care Act and passed by the Ways and Means Committee last night.

“As an attendant service user, my freedom and life depend on my personal assistance services. It is appalling that Congressional Republicans are cutting Medicaid services for people with disabilities which will put our freedom and our lives at risk” said Kelly Buckland, Executive Director of the National Council on Independent Living, “So many disabled individuals are locked away in nursing facilities and other institutions because they can’t get the care they need now; this plan will only make that worse.”

Buckland continued, “Saying that our lives are on the line isn’t an exaggeration. We – in the Disability Community – all know someone who died because they didn’t get the personal assistance services they needed. Each death – itself – is a tragedy, but the blatant disregard Republicans are demonstrating illustrates their true contempt for the lives of people with disabilities.”

It is estimated that 1 in 5 Americans has a disability, and most disabled Americans receive services through Medicaid. AHCA, although characterized as ACA reform, affects Medicaid programs most significantly, reducing income and asset limits and sunsetting funding for programs which support community-based services such as Community First Choice.

The National Disability Leadership Alliance (NDLA) is a national cross-disability coalition, led by disability groups run by persons with disabilities, with support from allies to build a strong and unified cross-disability movement so that we, as individuals with disabilities, have the power to shape national policies, politics, media, and culture. NDLA is led by 15 national organizations run by people with disabilities with identifiable grassroots constituencies around the country.

NDY UK Issues Statement on Assisted Suicide Case Brought By Man with ALS

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[Editor’s Note: NDY USA was honored many years ago when Jane Campbell asked if she could start NDY UK. Our sister organization has done incredible work. Here they share their reaction to the case of Noel Conway, a man with motor neuron disease, aka ALS.]

NOT DEAD YET UK STATEMENT ON MR NOEL CONWAY’S LEGAL CASE

While we empathise with Mr Conway in his legal attempt to avoid what he wrongly believes is inevitable suffering at the time of his death we strongly maintain that changing the law to allow physician Assisted Suicide will endanger the lives of the UK’s many ill and disabled people who, with the right amount of appropriate care and support can and do achieve a peaceful passing. More importantly, this type of support allows disabled and ill people to live full and enjoyable lives, with no fear of unnecessary death from coercion, error or human prejudice holding them back.

We also believe that legalising Assisted Suicide will negatively impact on how continuing illness and the lives of disabled people are viewed as a part of contemporary society. We know from our own extensive and varied experiences and research that the medical knowledge and facilities already exist to ensure a peaceful death for the majority of people who die as a result of illness and we campaign for those to become commonplace in all palliative care situations. We have seen no evidence to support the claim that the only way to ensure a so-called ‘good death’ is to utilise Assisted Suicide and instead choose to campaign for better end-of-life care through person centred palliative and medical support. While we acknowledge that mistakes are made during end-of-life we do not believe that potentially compounding those errors by adding serious risk to the rights and funding of those who choose to live is the best way forward. Coupled with the fact that medical professionals often make errors when giving a prognosis we believe that rather than ending suffering, the legalisation of physician Assisted Suicide will add to it.

We also passionately challenge the notion of ‘dignity’ as used by Mr Conway and his supporters at Dignity in Dying. As disabled people and their allies, many who rely on daily practical, physical and medical assistance to survive we suggest instead that dignity is simply a perception in the eye of the beholder and is therefore as changeable and unique as each individual person. It is not illness and disability that effect a person’s perceived ‘dignity’ but the way that society values or devalues their existence as opposed to those with no impairment. It is not a real state. It is also too often wrongly associated with a loss of physical ability. As long as disability, continuing & terminal illness alone are considered enough reason to want to die then we are certain that there will be no equality to protect us in death.

Instead we will continue to campaign for truly equal rights for all ill and disabled people so that living with impairment is no longer perceived as ‘undignified’ and death by illness is not uniquely viewed as a ‘bad death’. We support people everywhere who continue to fight for access to appropriate care and support in life as well as effective and appropriate palliative care and support in death.

21 February, 2016

Juliet Marlow
Not Dead Yet UK

Anita Cameron: The Disability Perspective

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A few weeks ago, I went to Albany, the New York state capital, to meet with members of the Senate Minority Caucus to urge them not to support any forthcoming assisted suicide legislation.

During the meetings, each legislator and/or staffer was asked had he or she heard stances against assisted suicide from the perspective of disabled people. With one exception, no one said they had heard why many in our community are against it.

As I spoke with other folks with disabilities around the country, the same theme arose — they were speaking out against assisted suicide and they weren’t really being heard.

It is an uphill battle because those of us directly affected by such legislation are either being dismissed by Compassion and Choices or our voices are being drowned out by other powerful groups whose reasons for opposition to assisted suicide differ from ours.

I find it disturbing, to say the least, that the disability perspective has not been sought out, since our community will suffer the effects, unintended or not, of assisted suicide laws. This doesn’t come as any surprise when our lives are devalued by doctors and society in general. Why bother with the ramifications for us when, to most, being disabled is considered a fate worse than death?

So, what does the disability community think about assisted suicide? While our community isn’t monolithic, the vast majority of us, including all of the major disability organizations that have taken a position, feel 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 makes it possible for unscrupulous and abusive family members and heirs to coerce their relative into choosing assisted suicide even if it isn’t what they want.

Proponents of assisted suicide such as Compassion and Choices pooh-pooh the disability perspective, saying that our community won’t be affected because this is for people with six months or less to live, who are in excruciating pain. The fact is, doctors can, and do, make mistakes about how long someone has to live. Also, while they and others talk about pain as the main reason that people want assisted suicide, the truth is that people seeking the suicide drugs in Oregon cited loss of autonomy, feelings of being a burden, loss of the ability to engage in activities, loss of the ability to control bodily functions and loss of dignity as the top reasons for wanting to die. All of these are issues that many of us disabled face every day and live meaningful lives despite this.

In this desperate fight against assisted suicide, it is vitally important that people, especially lawmakers, speak with disability organizations such as Not Dead Yet, Disability Rights Education and Defense Fund (DREDF), ADAPT, National Council on Independent Living (NCIL) and Autistic Self Advocacy Network (ASAN) before supporting, sponsoring or co-sponsoring assisted suicide legislation. While other opponents may have moral or philosophical reasons for opposing this deadly trend, disabled people live with the cold, hard reality of what has happened, and what can happen, to us. We can give you actual facts of how our lives are affected, rather than philosophical musings or moral admonitions.

Reach out to us for our perspective and don’t dismiss us when we tell you the real truth about what assisted suicide legislation will do to disabled people. Listen to us because this is literally a matter of life and death!