Does Freedom to Die Mean Freedom to Save Money, for Shareholders?

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[Letter to the editor of the Putnam County News and Recorder published September 04, 2019]

To the Editor, In response to Assemblywoman Galef’s letter (“Support the Medical Aid in Dying Act”, PCNR, Aug. 28, 2019), we should not forget what Derek Humphry, co-founder of the Hemlock Society (now “Compassion & Choices) said in his book:

“…economics, not the quest for broadened individual liberties or increased autonomy, will drive assisted suicide to the plateau of acceptable practice.” Derek Humphry & Mary Clement, Freedom to Die: People, Politics and the Right to Die Movement” (2000).

With New York State’s plan to cut in-home services for seniors and people with disabilities well underway, we should all be worried that those words are coming true.

But it’s not too late to have second thoughts about a public policy of assisted suicide that’s administered by healthcare providers run by managed care companies that owe their first duty to shareholders, not patients.

Diane Coleman, President of Not Dead Yet.

Meghan Parker, New York Assn. on Independent Living.

Stephanie Woodward, Center for Disability Rights.

On Being Offered the “Choice” of a Nursing Facility or a Grave

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A 40-year-old man with ALS died for lack of sufficient in-home care on August 9th. He qualified for some in-home services, but needed more as his disease progressed. He was only offered a nursing facility over 4 hours from his family. For him, that was a fate worse than death — not the ALS, but the isolation of a nursing facility. Since he lived in Canada, he was eligible for a lethal injection under Canada’s euthanasia law.

Here’s a summary of Sean Tagert’s story by our Canadian sister organization, Toujour Vivant/Not Dead Yet:

SEAN TAGERT DIES FOR LACK OF HOME CARE

  • Sean Tagert was a 40-year-old man with ALS living in British Columbia. He needed 24-hour in-home assistance in order to live independently. Local health authorities would only cover 20 hours of care per day, and suggested that Mr. Tagert move into long-term care if he needed more. The only available facility was in Vancouver, 4.5 hours’ drive from Mr. Tagert’s Powell River home and family.  He refused, saying death was preferable to the isolation of institutional life and being far away from his son. After relying on aging relatives to fill gaps in his care over a few weeks, Mr. Tagert died by euthanasia on August 9th.
  • This is exactly what we feared would happen when Bill C-14 was introduced. Although news reports have said that Mr. Tagert “chose” to end his life, it was not what he truly wanted. He made it clear that death would be an escape from difficult circumstances. Dr. Leonie Herx, a palliative care physician from Toronto, called for “a public outcry around peoples’ right to access care, to support them in choosing … life rather than just a right to death. A person should have the resources provided to live at least in their community, not to have to move … to another city.”

Here’s another story about Mr. Tagert in the press. But don’t think that people with ALS don’t face the same pressures to die in the U.S. In spite of decades of advocacy by aging and disability advocates, the U.S. is still stingy with in-home long term care services and is all too ready to shuttle people off to nursing facilities.  As TV/NDY noted in its webcast:

  • Mr. Tagert’s situation is similar to several [U.S.] legal cases that were brought in the 1980s where people with spinal cord injuries who were stuck in nursing homes won the right to have respirators turned off.  These rulings, sometimes referred to as the “Give me liberty or give me death” cases, resulted in the deaths of David Rivlin and Kenneth Bergstedt. Larry McAfee, who won a similar case, was contacted by disabled activists from a Georgia independent living center, who helped him obtain funding for personal care attendants and move into an apartment.  The families of Rivlin and Bergstedt rejected approaches from the disability community.

Eight percent of those who have died by assisted suicide in Oregon had ALS, according to the official state reports, the highest percentage category after cancer. Of course, Oregon doesn’t collect much data, so we don’t know for sure about the in-home care situation for these individuals, except that the number one reason for requesting assisted suicide is reported as “loss of autonomy” (91%) and and the 5th reason is “burden on family, friends/caregivers” (45%). These reasons scream about a lack of consumer controlled in-home personal assistance services.

So there’s no logic to splitting hairs between Canada and the U.S. Whichever country we live in, people who need in-home services have every reason to worry about being given the “choice” of a nursing facility or a grave.

Health Justice Commons Launches Medical Abuse Hotline In Honor of Carrie Ann Lucas

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Image description: The late Carrie Ann Lucas, wearing a lime green dress, appears in court using her power wheelchair. Image credit: The Colorado Independent.
The following are excerpts from an announcement by Health Justice Commons of a new Medical Abuse Hotline to honor Carrie Ann’s legacy and support our communities.

“On February 24th, 2019, Carrie Ann Lucas, a beloved and renowned disability rights attorney and trailblazer who innovated representation for parents with disabilities, died after being denied a $2,000 medication for a lung infection by her health insurer, UnitedHealthcare. Lucas was forced into taking a less expensive medication she was known to be allergic to, resulting in a rapid health decline with numerous hospital stays over her last year, and causing her to lose the  ability to speak. Her Facebook obituary notes, ‘UnitedHealthcare’s attempt to save $2,000 cost over $1 million in health care expenses over the past year.’ More importantly, it cost Lucas her life.

“Lucas gained national attention in June 2017, after staging a multi-day protest with other Atlantis ADAPT (based in Denver) members inside the Denver office of Sen. Cory Gardner (R-CO) to demand republicans cease efforts to repeal the Affordable Care Act. Carrie Ann resisted arrest by refusing to tell police officers how to operate her motorized wheelchair. Learn more about Carrie Ann’s life and work.

“The Health Justice Commons mourns and rages for this tragic and profoundly unjust loss.

“In the days leading up to her death, Carrie Ann was also forced to ration her insulin. According to a recent study from the Yale Diabetes Center, 1 in 4 Americans with Diabetes engage in insulin rationing due to skyrocketing prices and the complicity of health insurers, the majority of those rationing have health insurance.

“. . . Withholding access to healthcare or live-sustaining medication is medical torture. It profoundly violates our most basic human rights and dignity. Withholding access to healthcare is one of the most prevalent and pervasive forms of social control of our times. . . .

“Share Your Solidarity Story. Help transform US healthcare.

“To honor Carrie Ann’s legacy, we’re launching a national Medical Abuse Hotline to expose how common medical abuse truly is, hold health insurers and institutions accountable, and create real system-wide solutions! OUR SURVIVOR STORIES MUST BE HEARD!

“Want to share your story?

“Have you survived medical abuse, the denial of medication, medical equipment or care? Are you being forced into insulin rationing? – Contact us.”

Carrie Ann Lucas & Bill Peace Insurance Denials Inspire NDY Comment On Section 1557

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The Trump administration has proposed changes to rules against disability discrimination by healthcare providers and insurers under Section 1557 of the Affordable Care Act. While the current rules did not effectively protect Carrie Ann Lucas or Bill Peace, gutting those rules would only rob people with disabilities and others of a legal “leg to stand on” and make matters worse. Thanks to DREDF for providing electronic filing information and a template to help advocates file public comments on the proposed rule change, which are due by 11:59 pm today (August 13). Here is NDY’s comment letter.

Not Dead Yet, the Resistance

August 13, 2019

Roger Severino
Director, Office for Civil Rights
U.S. Department of Health and Human Services
Hubert H. Humphrey Building, Room 509F
200 Independence Avenue SW
Washington, DC 20201

RE:     HHS Docket No. HHS-OCR-2019-000, RIN 0945-AA11, Comments in Response to Section 1557 NPRM

Dear Mr. Severino:

Not Dead Yet is a national disability rights organization that opposes legalizing assisted suicide and advocates to prevent health care providers, healthcare insurers and other third parties from involuntarily withholding or withdrawing life sustaining healthcare.

We appreciate this opportunity to share our views on these proposed policy changes in interpreting and enforcing the nondiscrimination provision of the Affordable Care Act (ACA). We write to express opposition to the U.S. Department of Health and Human Services (HHS) proposed rule on Section 1557. The proposed rule would cause major harm to people with disabilities and their families and communities; it’s unfair, discriminatory and bad policy for this country. We recommend HHS not finalize this regulation in whole or in part.

Section 1557 and its implementing rules are critical because people with disabilities are routinely discriminated against in the provision of health care. Too many in our society, including healthcare providers, view significant disability as a fate worse than death

At the same time, insurers too often deny essential treatments needed by people with disabilities. This year, two members of Not Dead Yet’s Board of Directors died from conditions requiring treatment that insurance refused to cover. Both were highly educated professionals who fought for the care they needed. One needed an inhaled antibiotic, the other a therapeutic bed. Both wrote publicly about the denials they faced. If these strong advocates could be denied potentially lifesaving care, how much worse will other people with disabilities fare against such deadly discrimination

HHS underwent an extensive process to develop regulations for Section 1557, including a Request for Information, proposed rule, and final rule.[1] HHS considered more than 24,875 public comments submitted for the 2016 rule.[2] There is no reason to reopen this rule and ignore the reasoned process HHS has already undertaken.

We request that HHS retain the current definition of a “covered entity.” The proposed rule seeks to radically narrow the scope and applicability of Section 1557, contrary to the plain meaning of the statute. Congress made clear in Section 1557 that if one part of an entity receives federal financial assistance, the entire entity should be covered. It also clearly intended Section 1557 to address discrimination in health insurance.

We disagree with HHS’ proposal to delete the current requirement that covered entities provide notice, with every significant communication to individuals, that they do not discriminate based on disability or other prohibited grounds; that they provide auxiliary aids and services for people with disabilities, including qualified interpreters and information in alternate formats; and how to obtain those auxiliary aids and services. Without the notice, members of the public will have limited means of knowing that auxiliary aids and services are available, how to request them, what to do if they face discrimination, and their right to file a complaint.

HHS should retain strong, clear language prohibiting insurance companies from discriminating on the basis of race, color, national origin, sex, age, or disability in a number of areas, including marketing plans, designing benefits, coverage claims, or imposing additional costs. These protections are especially important for people with disabilities and those with serious or chronic conditions. Eliminating this regulatory provision could result in health insurers illegally excluding important benefits, designing their prescription drug formularies in a way that limits access to medically necessary care, or cherry-picking healthier enrollees through marketing practices. It may make it harder for people who experience discrimination to enforce their rights through administrative and judicial complaints.

Last, we note that people with disabilities, like all people, have intersectional identities, and that the anti-discrimination mandate in 1557 is designed to prohibit discrimination based on a single identity as well as the intersection of two or more identities such as race and disability, age and disability, or sex and disability. The proposed rule seeks to strip protections from persons with limited English proficiency, LGBTQ individuals, and women. We stand in solidarity with other marginalized groups in objecting to this proposed rule.

Thank you for the opportunity to provide comments on the proposed rule. We urge HHS not to finalize these changes. If you have questions about our comments, please contact Diane Coleman at email: dcoleman@notdeadyet.org or telephone 708-420-0539.

Sincerely,

Diane Coleman, JD
President/CEO

[1] U.S. Dep’t of Health & Human Servs., Request for Information Regarding Nondiscrimination in Certain Health Programs or Activities, 78 Fed. Reg. 46558 (Aug. 1, 2013); U.S. Dep’t of Health & Human Servs., Nondiscrimination in Health Programs and Activities (Notice of Proposed Rulemaking), 80 Fed. Reg. 54172 (Sept. 8, 2015); U.S. Dep’t of Health & Human Servs., Nondiscrimination on the Basis of Race, Color, National Origin, Sex, Age, or Disability in Health Programs or Activities Receiving Federal Financial Assistance and Health Programs or Activities Administered by the Department of Health and Human Services or Entities Established under Title I of the Patient Protection and Affordable Care Act, 45 C.F.R. Part 92, 81 Fed. Reg. 31376 (May 18, 2016)(hereinafter “2016 Final Rule”).

[2] 81 Fed. Reg. 31376.

Not Dead Yet Condemns Blaming Mental Health for Mass Shootings

Our News & Commentary Blog

As the nation mourns and reflects on the latest mass shootings, Not Dead Yet joins other national disability rights groups in condemning President Trump and others for blaming gun violence and mass shootings on mental health.

September is suicide prevention month. Scapegoating people with mental health disabilities, especially after a crisis such as a mass shooting, only adds to the stigma and shame that keeps people who  are hurting from seeking help.

Blaming mass shootings on mental health issues also puts those living with mental health conditions at risk of harm caused by discrimination, bullying and unnecessary institutionalization.

As the Bazelon Center for Mental Health Law stated this week:

Reflexively blaming gun violence on people with mental illness is unhelpful and unsupported by evidence. Less than five percent of gun violence is attributable to mental illness. Having a mental health diagnosis is not a predictor of violence, and people with serious mental illnesses are far more likely to be victims of violent crime than perpetrators of it. Casting all mass gun violence as “a mental health issue” is not only unfounded, but distracts from efforts to address the true causes of gun violence. It serves only to promote fear and prejudice against individuals with mental health needs. As the American Psychological Association’s president observed, it is important to focus on evidence-based solutions rather than “routinely blaming mass shootings on mental illness.”

The American Psychiatric Association has also issued a statement disputing the link between gun violence and mental illness. A MedPage article provided a detailed analysis and related links in Mass Shootings and Mental Illness: A Teaching Moment? – “Looking for a piece of hay in a haystack” . 

We stand in solidarity with statements issued by Bazelon and other disabilities organizations:

Not Dead Yet urges an immediate stop to the misguided practice of blaming gun violence and mass shootings on mental health. Public officials who have engaged in such harmful scapegoating should promptly issue a public apology and commit to working with lawmakers to create sensible, effective gun control laws that do not discriminate against people with disabilities or other communities.