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

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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.

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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

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[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

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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.

 

Not Dead Yet Comment On Draft COVID-19 Vaccine Allocation Framework

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Not Dead Yet, the Resistance

September 4, 2020

Committee on Equitable Allocation of Vaccine for the Novel Coronavirus
National Academies of Sciences, Engineering, and Medicine
500 5th St NW
Washington, DC 20001

Committee Members:

Thank you for the opportunity to comment on the Discussion Draft of the Preliminary Framework for Equitable Allocation of COVID-19 Vaccine.

Not Dead Yet is a national disability rights group run by people with disabilities, working to give voice to opposition to nonconsensual withholding of life-sustaining medical treatment and to oppose assisted suicide laws and active euthanasia. We also oppose discriminatory healthcare rationing, “quality of life” judgments and other forms of medical discrimination against people with disabilities.

While we are grateful for this opportunity, we are also appalled by the extremely short less than four-day comment period on a proposal that is more than 100 pages long on a life-and-death issue facing all Americans, especially those of us who are most likely to become seriously ill or die from COVID-19. The comment period should be formally extended and further developments of this framework by the U.S. Department of Health and Human Services must provide a more genuine, realistic, fair and widely publicized opportunity for public input.

Not Dead Yet’s comment will address two issues: a) the Phase 1b identification of “comorbid and underlying conditions that put individuals at a significantly higher risk of severe COVID-19 disease or death” and b) the failure to include and prioritize all congregate settings for seniors and people with disabilities.

People with Disabilities Who Faced Potential COVID-19 Triage Should Be Prioritized

Throughout the COVID-19 pandemic, people with disabilities have been threatened with denial of treatment under crisis standards of care (CSC). Though the details varied, the bottom line is that, in the event of a shortage of equipment, supplies or staffing, people with disabilities would be place at the back of the line for treatment or excluded altogether. Disability discrimination was discovered to be so extreme and pervasive in CSC policies that coalitions of disability rights attorneys and organizations undertook efforts to challenge these policies as violations of federal anti-discrimination laws under the jurisdiction of the HHS Office for Civil Rights.[1]

On March 28, 2020, after receiving the first four formal complaints against these policies, the Office for Civil Rights (OCR) issued a bulletin on Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19).[2] It stated that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”

OCR has already reached settlements in Alabama, Tennessee, Pennsylvania, Utah, and Connecticut addressing the illegal exclusion of certain people with disabilities and older adults from access to life-saving treatment, reasonable accommodations to hospital visitation policies, accessibility of information on treatment, and other protocols. The content of these settlements, as announced in OCR’s public releases, clarifies that the challenged state CSC policies violate federal law.

Sadly, many other state and hospital CSC policies that still exist violate federal law. Yet nothing in the draft framework addresses these crucial issues and legal developments, and how they should relate to vaccine allocation priorities.

Beginning at page 62, line 1373, the framework describes the Priority 1b Population as “People of All Ages with Comorbid and Underlying Conditions That Put Them at 
Significantly Higher Risk.” The introduction to this first tier group states:

It remains unclear precisely which comorbid and underlying conditions put individuals at a significantly higher risk of severe COVID-19 disease or death. CDC continues to gather 
evidence on this topic, and lists the following as factors associated with an increased risk of 
severe COVID-19 disease: Cancer, chronic kidney disease, chronic obstructive pulmonary
disease (COPD), immunocompromised state from solid organ transplant, obesity (body mass index [BMI] ≥30), serious heart conditions (e.g., heart failure, coronary artery disease, 
cardiomyopathies), sickle cell disease, and type 2 diabetes mellitus (CDC, 2020d).

The framework then states that the number of Americans with these specific conditions is too large to be manageable, so they could initially prioritize people with two or more of these conditions.

The framework section entitled “Rationale” relies on a few studies to support the list of priority conditions (page 64). The framework also acknowledges that the list could evolve as more research becomes available. It’s crucial that disability data be gathered in any such research going forward. While specific individual diagnoses may be viewed as “low incidence” and therefore may be treated as “unworthy” of research consideration, the medical community’s discrimination against people with disabilities has a profoundly negative collective impact on disabled people in the context of COVID-19.

Most of the prevailing crisis standards of care, the legal ones and the illegal ones, throw older and disabled people out of the lifeboat, putting them at the back of the line for COVID-19 treatment. This is often true, whether they have a condition that has been the subject of COVID research or not. For example, many people with spinal cord injuries and neuromuscular disabilities depend on breathing support and would face COVID-19 triage in a crisis, but they would not be defined as having COPD. And many individuals are significantly immunocompromised without having a transplant.

In a society that is increasingly “opening up” and making COVID-19 exposure more likely, those who would be denied treatment under CSC or triage policies should have priority to receive safe and effective vaccines under section 1b.

In addition, as noted by the Coalition of [sic: Consortium for] Citizens With Disabilities whose comments Not Dead Yet supports, we appreciate the many statements on the committee’s efforts not to base allocation on illegal, discriminatory measures. Disability should be added to those statements.

Moreover, we strongly support the committee’s efforts to acknowledge and address the prevalence of racial disparities in healthcare treatment and outcomes in the allocation framework, but more input on these appalling disparities must be obtained from the affected communities.

Not Dead Yet would also note that these disparities have directly impacted the denial of COVID-19 treatment to Black disabled individuals, such as in the case of Michael Hickson in Texas.[3] As stated by CCD, “the committee should include greater recognition of health disparities faced by people with disabilities,[4] including disparities faced by people with disabilities during this pandemic in particular.[5] While the committee does note the higher prevalence of certain comorbidities among some racial and ethnic minorities, it does not adequately consider the intersection of disability, age, and racial/ethnic minority status, including greater rates of disability among some racial and ethnic minorities.”

People who Live or Work in Congregate Settings Should Receive Priority in Allocation of a Vaccine

Not Dead Yet is deeply concerned about the framework’s narrow approach to establishing vaccine priorities with respect to congregate settings. At page 54, the framework only gives first tier priority to “those older adults living in 
congregate settings—such as nursing homes or skilled nursing facilities—and other similar settings.” A number of other types of congregate settings are left out, such as disability institutions that still exist in this country, settings that are too large to qualify as “group homes”, but are not defined as “nursing homes.” And “group homes” are only given second tier priority, despite having virtually the same risk factors as other congregate settings.

As discussed by CCD, “People with disabilities face a particularly high risk of complications and death if exposed to COVID-19,[6] and the severe outbreaks in institutional and congregate settings have meant an increase in exposure risk for many, as the committee has recognized in its discussion draft. The committee’s proposal does not adequately address that risk, and inappropriately separates congregate facilities into Phase 1 and Phase 2.”

Young people in nursing homes are also left out, unless they have (two of) the select comorbid conditions identified as priority 1b.

As detailed by CCD:

Some of the individuals left out of those priority categories in Phase 1b and Phase 2 may still receive the vaccine under the committee’s framework during Phase 1b and Phase 2 of vaccine allocation if they have a significantly higher risk or moderate risk due to comorbid conditions (defined by the report as having two or more comorbid conditions or one comorbid condition, respectively). However, that list of comorbid conditions (see page 62, lines 1379-1382 and page 69 lines 1578-1585) does not reflect disability status and is not broad enough to include all people with disabilities in congregate settings left out of those priority categories.

People in home and community-based settings should also receive priority for a vaccine when, as a result of disability, they are unable to effectively distance from others outside their household. This includes individuals who receive personal care services (home-based “long term care” more recently referred to as “long term services and supports” or LTSS) that require close contact with one or more staff members who live outside the home. Those staff members should also receive priority in vaccine allocation.

Thank you again for the opportunity to comment on the vaccine allocation framework. Please contact me if you have any questions or would like further information at dcoleman@notdeadyet.org or 708-420-0539.

Sincerely,

Diane Coleman, J.D.
President & CEO

 

 

 

 

 

[1] https://www.centerforpublicrep.org/covid-19-medical-rationing/

[2] https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf?fbclid=IwAR351WokrC2uQLIPxDR0eiAizAQ8Q-XwhBt_0asYiXi91XW4rnAKW8kxcog

[3] https://notdeadyet.org/2020/08/michael-hickson-disability-organizations-challenge-medical-futility-surrogate-decisions.html

[4] See https://www.cdc.gov/ncbddd/disabilityandhealth/features/unrecognizedpopulation.html, and https://www.cdc.gov/mmwr/volumes/67/wr/mm6732a3.htm?s_cid=mm6732a3_w

[5] https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.20060780

[6] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7311922, https://ajp.psychiatryonline.org/doi/pdf/10.1176/appi.ajp.2020.20060780.

Anita Cameron’s Letter Published In the Boston Globe!

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Assisted suicide is not the answer as long as racial disparities in care, disability bias go on

Updated August 31, 2020, 7:15 a.m.
Michael Martignetti wants a state program to assist his suicide if he is suffering from the effects of his disability (“Mass. should enact End Of Life Options Act,” Opinion, Aug. 13).
Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.

I want to be able to live. I want my conditions effectively treated, and I want effective pain relief. But while Martignetti may assume he will get good care, Black people like me tend to receive inferior care because of racial disparities in cardiac care, diabetes, and cancer.

Black people like me with chronic pain avoid the emergency room because we are treated like drug addicts. Black people, particularly women, get sent home to die because we are not believed.
COVID-19 lays bare the racism and ableism behind rationing and so-called medical futility decisions. Black quadriplegic Michael Hickson was denied COVID-19 treatment because reportedly it was determined that he had little quality of life.
Doctors make mistakes. In 2009, in Washington state, my mother was determined to be imminently dying. She moved home to die, but her health improved. Eleven years later, she has her own home and is reasonably active.
Assisted suicide endangers seniors, sick people, disabled people, poor people, and Black and brown people. As long as racial disparities and disability discrimination exist in health care, assisted suicide cannot be the answer.
Anita Cameron
Rochester, N.Y.
The writer is director of minority outreach for Not Dead Yet, a national disability rights group opposed to assisted suicide.