Civil rights leaders to DeSantis: Don’t allow state to withhold care from disabled

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MIAMI — As fears of a catastrophic shortage or ventilators and other life-saving medical equipment loom, Florida’s federally funded watchdog for disabled people is urging Gov. Ron DeSantis to ensure that, faced with unimaginable choices, doctors and hospitals don’t engage in “eugenics” as they ration care.

Florida would not be the first state to develop guidelines for distributing respirators, beds and medication during a local or state shortage.

Alabama, Kansas, Tennessee and Washington already have drawn the ire of civil rights groups that claim those states are adopting protocols that permit withholding care from disabled people, including the withdrawal of ventilators from disabled people — even people who have long relied upon the equipment.

“We generally acknowledge that decisions to prioritize access to essential treatment and life-saving medical equipment could soon be a necessary consideration,” said the March 30 letter to DeSantis, written by two leaders of Disability Rights Florida, a federally chartered advocacy group.

“If allocation of treatment and life-saving resources becomes necessary, the state has an obligation to ensure that prioritizations are administered ethically and in a way that respects the basic civil and constitutional rights of persons with disabilities. Such decisions cannot be left to individual hospitals or physicians tasked with making operational judgment calls in the heat of an overwhelming health care crisis.”

Controversy over plans to deny life-saving care to disabled people first emerged in Washington, one of the first states to contemplate a shortage of resources. Advocates for disabled people there filed a complaint with the U.S. Department of Health and Human Services’ civil rights office on March 23, after details of rationing plans by the University of Washington Medical Center and the state’s health department became public.

The university’s plan, advocates said, “gives priority to treating people who are younger and healthier, and leaves those who are older and sicker — people with disabilities — to die.”

“We will not sit by as members of our community are left for dead,” the advocates, including Disability Rights Washington and The Arc, a national group representing people with intellectual and other disabilities, wrote.

Few, if any, details are available for how health professionals in Florida are likely to distribute life-saving equipment or medication if scarcities arise.

Ken Goodman, director of the Institute for Bioethics and Health Policy at the University of Miami’s Miller School of Medicine, said, generally, decision-making will be influenced by such things as the Sequential Organ Failure Assessment, or SOFA, protocol, a well-established instrument for determining a patient’s likelihood of dying. SOFA scores do not take into account such things as socioeconomic status, religion or disability.

“Discrimination on the basis of disability, race, social class, religion — everyone agrees that is impermissible,” Goodman said.

Assessment tools such as the SOFA scale, Goodman said, are explicitly designed to remove subjective considerations from decision-making, something most doctors and nurses want. The SOFA scale, Goodman said, does not employ “cutoffs” for intellectual or physical ability. Without such tools, “we’re back to coin-tossing.”

Medical professionals don’t want to be faced with tough choices, Goodman said, and they don’t want to be sued by loved ones if a tough choice results in a patient’s death.

On March 28, HHS’ civil rights office issued a “bulletin” reminding health providers that they could not discriminate as they provide treatment and care to patients afflicted by COVID-19, the sometimes-deadly disease caused by the coronavirus.

“In this time of emergency,” the statement said, “the laudable goal of providing care quickly and efficiently must be guided by the fundamental principles of fairness, equality and compassion that animate our civil rights laws. This is particularly true,” the bulletin added, “with respect to the treatment of persons with disabilities during medical emergencies, as they possess the same dignity and worth as everyone else.”

As to the letter sent Monday by Disability Rights Florida, none of the state leaders — including DeSantis, House Speaker Jose Oliva, Surgeon General Scott Rivkees, Agency for Health Care Administration Secretary Mary Mayhew, Agency for Persons with Disabilities Director Barbara Palmer, Department of Children & Families Secretary Chad Poppell and members of the state Senate and House — have yet replied, Disability Rights said.

The letter, signed by Disability Rights interim director Peter P. Sleasman and public policy director Tony DePalma, calls on DeSantis and other leaders to “immediately adopt and disseminate mandatory statewide guidelines” to protect disabled people from discrimination and to ensure fairness in the distribution of scarce life-saving equipment.

If rationing of care becomes necessary, the advocacy group wrote, “prioritizations” should be “administered ethically and in a way that respects the basic civil and constitutional rights of persons with disabilities.”

Specifically, the letter said, doctors and hospitals should make care and treatment decisions based on “current objective medical evidence, rather than generalized assumptions about a person’s disability.”

Such assumptions, the letter said, include stereotypes that people with disabilities have “a lower quality of life, or that their lives are not worth living.” Medical professionals also should not assume that a disabled person automatically has a lower prospect of survival.

“To allow or propose otherwise,” the letter warned, would be to explicitly or tacitly endorse “long-refuted social eugenic notions” that place greater value on the lives of people who do not face challenges.


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