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.

 

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

bioethics, COVID-19, health disparities, healthcare rationing, lifeboat ethics, medical discrimination, Our News & Commentary Blog, public comment, , ,

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!

aid in dying, Anita Cameron, assisted suicide, health disparities, healthcare rationing, letters to the editor, medical discrimination, Michael Reynolds, Our News & Commentary Blog, , , , ,

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.

Lisa Blumberg Published In the Sun Sentinel Regarding COVID-19 Healthcare Discrimination

COVID-19, healthcare rationing, life-sustaining treatment, Lisa Blumberg, medical discrimination, Our News & Commentary Blog, , ,

We’re all in this together, including the disabled

By LISA BLUMBERG
SPECIAL TO THE SUN SENTINEL
AUG 14, 2020

Florida may be the epicenter of COVID-19 with the number of confirmed cases skyrocketing over 500,000, but over 80% of states are seeing increased cases. While many of the young and able-bodied chafe at wearing masks and forgoing the beach, people with disabilities are concerned about having an equal shot in surviving the pandemic.

We who live in the community are appalled by the carnage in nursing homes. “They’re death pits,” Betsy McCaughey, a former lieutenant governor of New York who founded the Committee to Reduce Infection Deaths, has stated. “They’re crowded and they’re understaffed.” Roughly half of all virus deaths in Florida are linked to nursing homes.

Many disabled people are also people of color, and the crisis has highlighted racial disparities in health care. A Texas hospital denied COVID-19 treatment for Michael Hickson, a 46-year-old disabled Black man, who subsequently died on June 11.

Photo of Lisa Blumberg, head and shoulders shot of a smiling woman with short gray hair and a dark blue blouse seated with a desk of files and books in the background.
Lisa Blumberg

As Ariella Z. Barker, a fellow at the Harvard Kennedy School of Government with spinal muscular atrophy, stated, “a glance into our future will likely mimic Italy’s current predicament, where they are sacrificing the medically fragile.”

Early into the crisis, with rising fear that dire medical need would outstrip medical resources, members of the Harvard Medical School Center for Bioethics wrote chillingly, “typical medical options may soon not be available to everyone.”

Yet, as concerned health care providers have said, “guidelines that evaluate patients by age or ‘comorbid conditions [that] impact survival’ or ‘underlying medical diseases that may hinder recovery’ implicitly rely on value judgments about these patients’ quality of life and deny these patients justice in our healthcare system.”

Some states have had crisis standard-of-care plans that would make functional disability fatal in a pandemic. The Tennessee plan would have withheld curative care from people with neuromuscular conditions who need help with daily living activities as well as those with permanent brain injuries. Even without such socially biased and invalid instructions, doctors choosing between a disabled and a nondisabled patient with similarly urgent levels of need and chances for survival may be encouraged to give the nondisabled patient priority out of the belief that she might recover faster, freeing up scarce resources.

Such practices are civil rights violations. Federal nondiscrimination laws including the Americans with Disabilities Act, along with comparable state laws, prohibit medical rationing measures when they result in the denial of care on the basis of disability to an individual who would benefit from it. This does not mean that disabled people jump to the head of the line in the crisis, but that they cannot be arbitrarily placed at the back of the line. These protections are absolute. They cannot be waived any more than protections against employment discrimination can be waived as job loss becomes endemic. They apply in good times and in bad.

Health care workers who are acting heroically must not be asked to pick and choose among their patients who could survive. We are all in this together.

Lisa Blumberg is a lawyer, writer and consultant to Not Dead Yet, a national disability advocacy group.

John Kelly: Older, ill and disabled people deserve choice-promoting services, supports

"death with dignity", aid in dying, assisted suicide, john kelly, letters to the editor, Massachusetts, Michael Reynolds, Our News & Commentary Blog, quality of life judgments, , , ,

The Greenfield Recorder published John Kelly’s letter opposing the Massachusetts assisted suicide bill on August 12. This excellent letter speaks for itself.

Older, ill and disabled people deserve choice-promoting services, supports

By JOHN B. KELLY

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

I disagree with Joan Milnes’s call for passage of the assisted suicide bill now in the legislature (“Making a final choice about quality-of-life,” July 28). Her framing of it as an individual matter of “choice” about one’s so-called “quality-of-life” is prejudicial and dangerous.

Milnes’s example is her cousin Tony with cystic fibrosis who, at his doctors’ suggestion, had his life-sustaining ventilator turned off because he couldn’t speak or eat. But whereas Tony had the long-established privacy right — regardless of reason — to discontinue any bodily intervention, assisted suicide denies choice and endangers everyone. That’s because real choice resides with insurers, whose profit-maximizing denials of prescribed treatments can make you terminal.

Assisted suicide becomes the cheapest “medical treatment,” a “benefit” to be extended to evermore people. Choice belongs to abusive family and caregivers, who can bully you into requesting the drugs, witness the request, fetch the drugs, and even administer them without worry.

The bill grants complete immunity to anyone involved in the suicide. Doctor misdiagnosis puts 6 million people yearly at risk of severe harm, and 12% to 15% of people with a terminal diagnosis are not really dying. Hundreds of people have needlessly lost years of life to these mistakes. No choice there!

Quality-of-life judgments have fueled proposed state policies to deny disabled people ventilators if there is a shortage, and to deny treatment to people like disabled Texan Michael Hickson, whose hospital denied his family’s request for COVID-19 treatment and allowed him to die.

As someone commonly described as “paralyzed from the neck down,” I am constantly exposed to prejudicial messages that I would be better off dead. In our current crisis, we should be doing all we can to promote mutual aid and interdependence.

Older, ill and disabled people deserve choice-promoting services and supports like funded home care, not death on the quick and easy.

John B. Kelly is a long-time disability rights advocate and writer in Boston who is director of Second Thoughts MA: Disability Rights Advocates against Assisted Suicide.
Ed. Note: John is also the New England Regional Director of Not Dead Yet.