Civil rights officials at the Department of Health and Human Services issued a series of actions to protect people with disabilities from health care discrimination by medical providers during the pandemic.
The actions, by the Office of Civil Rights, or OCR, at the Department of Health and Human Services, specifically address discrimination related to the denial of treatment for people with disabilities who have COVID-19 or the symptoms of COVID-19. They include:
The start of a process to write regulations that explicitly prohibit medical workers from denying care to people with disabilities based on subjective decisions about the quality of their life or by issuing a Do Not Resuscitate order without the patient’s consent or against their stated preference.
A revision to the guidelines of four health care systems, in North Carolina, North Texas, Southwest Texas and the Indian Health System, to assure that people with disabilities and older people are not passed over for scarce care, like drug treatments and ventilators.
These problems were the subject of a series of NPR stories about how people with disabilities were denied ventilators and other pandemic care in Oregon. NPR’s stories were cited in OCR’s proposal.
“We said during COVID-19, our civil rights are not suspended,” HHS OCR director Roger Severino told NPR. “People will not be subject to age or disability discrimination when the going gets tough.”
Sarah McSweeney, whose death was the subject of one of NPR’s stories on health care rationing, was a 45-year-old woman with multiple disabilities. She died at an Oregon hospital in May after doctors questioned her quality of life and pressured her guardian and others who cared for her to sign a Do Not Resuscitate order to allow doctors to withdraw care.
The new OCR action makes clear that doctors cannot issue a blanket DNR and cannot substitute their subjective beliefs about the quality of a disabled person’s life over the person’s own wishes.
Severino says the actions are intended to make clear “that discrimination against persons with disabilities will be absolutely forbidden and stereotypes about their usefulness should never be part of a discussion when we allocate care.”
If the OCR action — which takes on a range of issues of discrimination — becomes formalized, it would become a significant expansion of disability civil rights law.
Severino’s office wanted to make a formal rule but could not get the action through all of the steps of the approval process before the end of the Trump administration. Instead, it was issued as a “request for information”, which is usually an appeal to stakeholders for information to help make a rule.
But a final rule exists in draft form, according to a source at HHS, with hopes that new Biden Administration officials will pick it up.
Alison Barkoff, of the Center for Public Representation, a disability civil rights group, said the OCR actions reflect parts of the disability agenda that President-elect Joe Biden had promised in his campaign.
