Ventilators limited for the disabled? Rationing plans are slammed by advocates

Minyvonne Burke

Disability rights groups have filed federal civil rights complaints alleging that ventilator-rationing plans or proposals in Alabama and Washington state would discriminate against the disabled and put them at imminent risk amid the coronavirus pandemic.

A complaint filed Tuesday with the U.S. Department of Health and Human Services' Office for Civil Rights takes aim at a part of Alabama's Emergency Operations Plan focused on managing access to ventilators during an event that the governor deems a public health crisis.

The protocol lists several health conditions for which providers should "not offer mechanical ventilator support," including heart failure, respiratory failure and metastatic cancer. It also says "persons with severe mental retardation, advanced dementia or severe traumatic brain injury may be poor candidates for ventilator support."

The complaint by the Alabama Disabilities Advocacy Program and The ARC of the United States claims this policy discriminates against people with intellectual and cognitive disabilities in violation of federal laws, including the Americans with Disabilities Act.

Alabama "is poised to make life-and-death decisions that will deny needed medical treatment to countless individuals based entirely on their underlying disabilities," the complaint says. "The mere fact that a person has an intellectual or cognitive disability cannot be a basis for denying care or making that person a lower priority to receive treatment."

“In this time of crisis, we cannot devalue the lives of others in our community based on their disabilities. It’s morally wrong, and it violates the law," said James Tucker, director of the Alabama Disabilities Advocacy Program, in a press release.

The state's Department of Public Health told NBC News on Friday that the ventilator rationing plan, which was drafted in 2009 and updated in 2010, offers guidance for providers having to make difficult decisions in the event of a public health emergency.

"When there are two or more patients needed to be placed on a ventilator and there is only one ventilator available, a tough choice has to be made and this document was solely intended as a tool for providers in making those hard choices," the department said.

The health department noted that a more recent document, Crisis Standards of Care Guidelines, which was issued in February, offers "a much broader scope of topics than just ventilators."

That document says that in public health emergencies where demand exceeds capacity, the "ultimate clinical goal is to do the greatest good for the greatest number of people." When providers need to make decisions on care, the guidelines say, they must follow ethical standards, including that "every person has inherent dignity and intrinsic moral worth, regardless of age, race, gender, creed, socio‐economic status, functional ability or any other characteristic."

Disability rights groups also filed a complaint with the Office for Civil Rights on Monday in regard to Washington state. That complaint by Disability Rights Washington, Self Advocates in Leadership and others argues that the state is putting in place a ventilator rationing scheme that violates the rights of people with disabilities and puts their lives at risk.

It says guidance distributed by the Washington State Department of Health last week recommends that triage teams consider transferring hospital patients with “loss of reserves in energy, physical ability, cognition and general health” to outpatient or palliative care.

One of the people making the complaint, Ivanova Smith, who has an intellectual disability, told NPR, "There's been a long history of people with intellectual, development mental disabilities having our medical care denied."

"Because we're not seen as valuable," she said. "We're not seen as productive or needed. When that's not true."

NBC News reached out to the Washington State Department of Health on Friday but did not immediately hear back.

Last week, 280 clinicians in the state dialed into a three-hour webinar to hear about the possibility that medical professionals across the state will have to begin rationing health-care — including ventilators — for coronavirus patients.

Officials said the trigger for rationing care, or invoking what are known as “crisis standards,” will be when there are more COVID-19 patients than ventilators.

A 2010 study found Washington state had fewer than 1,000 ventilators. As of Friday, the state had over 3,200 coronavirus cases and 147 deaths.

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