Anita Cameron Testified At “People’s Hearing” for In-Home Services

ADAPT, Affordable Care Act, Anita Cameron, COVID-19, health disparities, long term services and supports, medical discrimination, Michael Hickson, Our News & Commentary Blog, Testimony, , , ,

Anita Cameron, Not Dead Yet Director of Minority Outreach, testified at ADAPT’s “People’s Hearing” on October 2, 2020, to press for full federal funding for home and community based long term services and supports. Anita makes a passionate appeal for the preservation of the Affordable Care Act, which has provisions for people like her with pre-existing conditions. She calls out nursing homes as Covid-19 death traps, and how Black quadriplegic Michael Hickson was killed in a Texas hospital because of a quality-of-life judgment. Anita says that Covid -19 has ravaged the Black, indigenous, and people of color communities. She mentions AOC [Alexandra Ocasio-Cortez] and calls on people of color communities to contact their legislators and to keep fighting on behalf of people like herself whose health issues prevent them from being out there. She ends with ADAPT’s longtime call to arms, “Free our People!”

Below is a video of her moving testimony, followed by a transcript.

Hi, everyone. I didn’t hear my introduction. People were worried because my phone died in the middle of all of this. I’m really happy that we are having these people’s hearings, because look, I wanna say, we cannot afford to lose the Affordable Care Act.

I have been going through all kinds of hospitalizations, doctor’s visits. Even today, I spent pretty much the entire afternoon at the doctors, for severe health issues that I’m going through. I have all kinds of preexisting conditions. If it were not for the Affordable Care Act, I wouldn’t have my insurance. I wouldn’t be able to see the doctors that I’m seeing now and we need this. And we need. Look, it’s bad enough. If we get rid of the Affordable Care Act, yeah, I’m gonna talk about stuff that people don’t wanna hear or whatnot.

But first, briefly, I’m Anita. I’m from Rochester, ROC ADAPT, and in my day job, I am Director of Minority Outreach for Not Dead Yet. We know what COVID has done to communities of color. It’s ravaged the black community. It has ravaged the indigenous community. It has ravaged communities of color, and racial disparities in healthcare also mean that, if you are someone of color and you don’t have the resources or anything, you’re going to wind up in a nursing home – that’s all there is to it.

How can these people, these politicians, how can they sleep at night? I don’t know. So many millions and millions and millions of people in this country will literally die if the Affordable Care Act was done away with. The Affordable Care Act, we know as ADAPT members, but a lot of people don’t realize that in the Affordable Care Act, there are the provisions for long-term services and supports that keep us people with disabilities in our own homes and not in some nursing institution, death camp. And because of COVID we know these nursing facilities are COVID traps!

So many people in these places are coming up with COVID and dying. That’s what happened to Michael Hickson. Michael Hickson was sent – he’s from Texas – he was sent to a nursing home where he caught COVID. And then the doctors refused to treat him because they said, he had no quality of life because of his disabilities. So, whoever, you listen, members of Congress, members of the Senate, fight for this. Fight for us.

I’m so happy that Congresswoman, that AOC went and stopped and spoke to the ADAPT folks out there in the rain doing that work. Thank you. Thank y’all. For out there doing that work, I can’t be out there with y’all now with my health and all that. Keep on, keep on fighting, keep on out here doing this work for those of us that can’t. Yeah.

Free our people!

Thank you.

NDY, National ADAPT, ADAPT of Texas and ASAN Join Amicus Brief In Tinslee Lewis Case

ADAPT, amicus brief, Autistic Self-Advocacy Network, bioethics, court cases, futility, healthcare rationing, life-sustaining treatment, medical discrimination, Michael Hickson, Our News & Commentary Blog, Tinslee Lewis, treatment withdrawal, ventilator, , ,

On October 8, 2020, Not Dead Yet, National ADAPT, ADAPT of Texas and the Autistic Self Advocacy Network joined in a friend-of-the-court (“amicus”) brief filed by Texas attorney Michelle Hayes to support Tinslee Lewis and her mother’s case to maintain life support. The “strange bedfellows” amici groups include disability rights, religious and pro-life organizations.

Tinslee Lewis is a 20-month-old girl on life support at Cook Children’s Medical Center (“Cook”) in Fort Worth, Texas. Due to a heart defect, she is on a ventilator. Tinslee has been reported to be conscious and interactive when she is not under sedation. NDY wrote about Tinslee’s case, including video from a local television interview with her mother, here. Since 2019, Cook hospital has worked to withdraw Tinslee’s life support.

The lower court in the case issued a temporary injunction against Cook requiring life support to continue pending the results of a trial on the facts and relevant legal issues. The Court of Appeals for the Second District of Texas held the Texas futility law unconstitutional. Now Cook has petitioned the Supreme Court of Texas for review, seeking to overturn the Court of Appeals ruling and the injunction without a trial on the merits.

The “Amicus brief for Tinslee”, and previous court documents, are posted on the Medical Futility Blog here.

The opening argument in the Amicus Brief raises disability discrimination issues:

In a recent study, the National Council on Disability found that healthcare providers often misperceive disabled individuals to have a low quality of life, and this can result in discriminatory determinations that life-sustaining medical care is futile and should be withdrawn.1 The Council concluded that protections are needed to ensure (1) the patient’s wishes are followed; (2) life-sustaining medical care is not removed pending transfer; and (3) that in the absence of patient competency and an advanced directive, a neutral, unbiased, and independent decision maker is in place with a right to judicial appeal.2 . . .

pastedGraphic.png

1 See National Council on Disability, Medical Futility and Disability Bias (Nov. 20, 2019), at *10. https://ncd.gov/sites/default/files/NCD_Medical_Futility_Report_508.pdf (last accessed Oct. 7, 2020).
2 See id. at *42.

pastedGraphic_1.png

The brief also explains how the Texas futility law violates constitutional due process rights.

When the decision to remove a person’s life-sustaining medical treatment is made, appropriate due process protections would include:

    • adequate notice of the hearing;
    • a high burden of proof, such as clear and convincing evidence, placed on the
      party advocating withdrawal of life-sustaining treatment;
    • the right to legal counsel;
    • the right to call and cross-examine witnesses;
    • a neutral decision maker;
    • a record of the proceedings;
    • and a right to appeal.

The Texas futile care law also appears to have been relevant in the death of Michael Hickson, a 46-year-old Black husband and father with a brain injury who was denied treatment for COVID-19. His doctor told his wife in a recorded conversation that his quality of life was too low.

Disability advocates must continue fighting these futility laws that grant legal immunity to medical providers that unilaterally withdraw life support from people with disabilities against our will or the healthcare decisions of our chosen surrogates.

Not Dead Yet, NMD United, et al. Sue NY Governor On Ventilator Re-Allocation Guidelines

bioethics, court cases, COVID-19, Disability Rights New York, healthcare rationing, life-sustaining treatment, lifeboat ethics, medical discrimination, Our News & Commentary Blog, Sequential Organ Failure Assessment, treatment withdrawal, ventilator, , , ,

On October 7, the National Center for Law and Economic Justice filed a class action complaint on behalf of Not Dead Yet, NMD United, Disability Rights New York, NDY Board member Mike Volkman and other individual plaintiffs against New York Governor Cuomo and the NY Department of Health to challenge the state’s Ventilator Allocation Guidelines that allow personal ventilators to be confiscated from a person living in the community if they go to a hospital for care. NDY has written about this guideline here and here.

The class action civil complaint states:

1. Plaintiffs, chronic ventilator users who reside in New York State and organizations that represent them, bring this action on behalf of themselves and all others similarly situated challenging the New York State Department of Health’s Ventilator Allocation Guidelines (“Guidelines”). The Guidelines allow hospitals to reallocate the personal ventilators of people who seek acute medical care in a hospital during a time of triage to others deemed more likely to survive based on a mechanical scoring system. 

2. The Guidelines deprive people with disabilities of a nondiscriminatory emergency preparedness program and risk placing chronic ventilator users in potentially life-threatening situations in violation of the Americans with Disabilities Act (“ADA”). . . Section 504 of the Rehabilitation Act of 1973 . . . and the Affordable Care Act . . ..

The the National Center for Law and Economic Justice posted the following news item on its website and social media:

October 8, 2020

NCLEJ Files Lawsuit to Protect Personal Ventilator Users

Did you know that New York State has a policy for rationing medical resources — like ventilators — during emergency health crises?

As Covid-19 infections spike again this Fall, New Yorkers with disabilities, and especially personal ventilator users who seek medical care at a hospital, could lose access to ventilators due to this rationing policy.

The New York State Department of Health Ventilator Allocation Guidelines state that if there is a heightened need for ventilators and a shortage of machines, the personal ventilators of chronic ventilator users can be taken and given to other people perceived to have a higher chance of survival.

That’s why the National Center For Law and Economic Justice teamed up with Disability Rights New York and filed a case to change these discriminatory allocation policies. This first of a kind case could ensure ventilator users will have access to their equipment whenever they need them!

Read our complaint here.

While many states across the country including Alabama, Pennsylvania, and Tennessee have filed and resolved administrative complaints to ensure access to medical equipment, Governor Cuomo has refused to do the right thing.

Discriminatory policies like this harm people with disabilities and “underlying conditions” and puts them at risk. Rationing policies are dangerous and unfair. They devalue the medical needs of low-income people and people of color.

New York State shouldn’t have the power to decide who gets to live or die by taking their personal medical equipment from them.

Help us get the word out about the fight to change this dangerous policy — retweet our explainer about the Ventilator Allocation Guidelines.

***************

For the legal-minded, the 28-page complaint explains the case a bit more in the numbered paragraphs indicated below:

9. The Guidelines created wide-spread fear among chronic ventilator users because the Guidelines permit hospitals to requisition patients’ personal ventilators and reallocate them to others deemed more likely to survive. 

10. Chronic ventilator users, including the Plaintiffs, saw articles and social media posts shared among their friends, classmates, and community members about the Guidelines and the risk of having their personal ventilators taken away if they sought acute medical care in a hospital. 

13. As the COVID-19 pandemic continues, Plaintiffs fear losing their ventilators, and ultimately their lives, should they need to seek acute medical care at a hospital during a time of triage when ventilators are in short supply. 

14. Plaintiffs and the proposed Class seek prospective injunctive relief ordering the Defendants to amend the Guidelines to ensure that chronic ventilator users will not have their personal ventilators reallocated to other individuals, especially without another ventilator readily available for their use. 

45. The Guidelines permit hospitals to take chronic ventilator users’ personal ventilators upon their arrival into a hospital and place them into the general ventilator allocation pool for distribution to those with higher SOFA scores. Id. at 40. 

46. The Guidelines acknowledge that the policy “may place ventilator-dependent individuals in a difficult position of choosing between life-sustaining ventilation and urgent medical care.” Id. at 41. 

To review the full complaint, go here for a PDF version and here for a text version.

Jerry Lewis’ Unforgivable Harm to Young People

Our News & Commentary Blog, Telethon protest, , ,

[Editor’s note: Thirteen years ago, “Miss Crip Chick” Stacey Milburn called for blogs protesting the Jerry Lewis Telethon. Now, disabled filmmaker, writer and activist Dominick Evans is calling attention to the 2020 revival of the Telethon and working with disability activists around the country to once again explain the many ways that this event perpetuates the crushing stereotypes and bigotry that disabled people experience. In 2007, I wrote the following protest blog about how Jerry Lewis treated a 15-year-old boy who had his ventilator turned off because he did not want to burden his family. I confess that I was more “polite” than I feel now. Though Lewis is gone, my deepest concerns continue to be the negative impact of the Telethon on children and young people. I thank Dominick for his leadership, and reprint my 2007 blog below.]

When Mike Ervin co-founded Jerry’s Orphans in 1991, I was living in the country outside Nashville, and organized local disability activists to picket the TV station that carried the Telethon. Protest is viewed as especially impolite in southern communities, but I always felt that preventing the Telethon from harming young people with disabilities should trump other arguments and discomforts. Thank you to the many disability rights leaders who have written so persuasively about the harms caused by the Telethon’s message of pity.

One form of Telethon-related harm that many of us with neuromuscular disabilities have experienced is the incorrect prediction of an early death, along with the failure to mention a wide array of options for breathing support to extend life. My friends who use bipap machines at night due to post polio syndrome taught me about my options. But I’ve lost at least two younger friends to respiratory crises who never pursued breathing support. One said she feared it would be burdensome.

Even with breathing support, some children with neuromuscular disabilities will die young, and that’s tragic. It’s difficult to fault Jerry Lewis for mentioning that during the Telethon, even though I thought he should also say something positive about breathing supports.

But during the 2001 Telethon, Lewis crossed a line in a way that continues to shock and anger me. He told the story of a 15-year-old with muscular dystrophy who was on a vent. Lewis was contacted because the young man said he wanted to go off the vent and die. Lewis reported to the Telethon audience that when he telephoned this young man, he apologized to Lewis for not beating the “disease.” He’d told his parents that he was sorry for having brought them down and being a burden. He took himself off the vent (which could not have been done without the permission of his parents). This, said Lewis, is why we have to beat this disease. Lewis said not a word about assuring him that he was not a burden, or arguing that this was a bad reason to decide to die, or suggesting that he wait-and-see, not even to wait for the cure the Telethon has been promising all these years.

Lewis gave no sign that he fought for the life of this 15-year-old young man during that phone call. By the time of the 2001 Telethon, he had already died. The worst part of Lewis’ account is that he was then speaking to all the other young people watching the Telethon – from nondisabled fundraising scout troops to teens with neuromuscular disabilities on ventilators. And what they heard was that Lewis did not express one word of disagreement that this young man was a burden to his parents, nor did Lewis disagree with his decision to die for their sake. His silence on these issues was a profound abandonment of those who look upon him with trust. It is an unforgivable harm.

John Kelly Testifies At Massachusetts Health Equity Task Force Public Hearing

assisted suicide, COVID-19, health disparities, healthcare rationing, john kelly, Massachusetts, medical discrimination, Our News & Commentary Blog, Second Thoughts, suicide prevention, , , , ,

On Wednesday, September 16, a public hearing was held by the Health Equity Task Force of the Massachusetts Public Health Committee. The legislative website stated that “[t]he virtual hearing is to receive testimony from the public on findings and recommendations that address health disparities for underserved or underrepresented populations during the COVID-19 pandemic, pursuant to the Health Equity Task Force established by section 2 of Chapter 93 of the Acts of 2020.”

John Kelly testified on behalf of Second Thoughts Massachusetts:

Head and shoulders photo of smiling short haired white man with dark-rimmed glasses wearing a peach colored shirt, with wheelchair headrest and sip-and-puff operating switch visible in the frame.
John B. Kelly

Thank you. My name is John Kelly and I am the director of Second Thoughts MA: disability rights advocates against assisted suicide. We also oppose policies, actions, and media that demean the lives of disabled people, such as the state’s Crisis Standards of Care and lack of attention to suicide prevention services for disabled people.

Under pressure from advocates, the Department of Public Health has dropped from its Crisis Standards of Care some of the discriminatory criteria for triage decision-making. But it continues to insist on using estimated five-year survival rates against disabled people, who are disproportionately Black and Brown. That’s discriminatory on grounds of both disability and race.

The Office of Civil Rights confirmed this discrimination in its settlement with Utah, writing that “Survivability is a factor that can be fraught with speculation, mistaken stereotypes, and assumptions about the quality of life and lifespan of people with disabilities.” In a triage situation, Utah, and thus Massachusetts, can only consider “short-term mortality.” Massachusetts must make an individualized assessment based on the most objective information available.

DPH must also consider disabled people worthy of suicide prevention services. In May, I attended DPH’s annual suicide prevention conference, and was shocked to hear a presentation wholly centered on assisted suicide, including a timeline stretching from Socrates to Emile Durkheim to Jack Kevorkian!

But three quarters of Kevorkian’s victims were not terminally ill. They were disabled and depressed. In Oregon, the reported end-of-life concerns are all about existential distress regarding disability. People ashamed about depending on others, humiliated by feeling like an undignified burden, or who are traumatized by incontinence get only suicide completion services.

In this state, suicide prevention organizations tacitly support assisted suicide by not taking a position against it. The State’s suicide prevention plan offers almost nothing to us.

DPH should adopt Connecticut’s commitment to preventing disabled people’s suicides. Its plan acknowledges that assisted suicide negatively impacts disabled people, because of its operating principle that disability is a fate worse than death. We disabled people have a right to and demand responsive suicide prevention services.

To conclude, disabled people in this state, as much as anyone, deserve equal medical care and suicide prevention services. We disabled people are human beings who demand full respect from our state. Thank you.