Alabama withdrew triage guidelines that recommend deprioritizing care and life-saving equipment for intellectually disabled individuals on Wednesday following backlash from disability advocates.
The move, ordered by the Office for Civil Rights (OCR) at the U.S. Department of Health and Human Services (HHS), represents progress for the disabled community, which has encountered fresh obstacles in the way of equitable care during the coronavirus pandemic. But advocates say there is still work to be done to ensure disabled Americans aren’t overlooked as hospitals and the nation’s health care infrastructure reach a breaking point.
“OCR made clear to Alabama and states and hospitals across the country that excluding people with disabilities from access to life-saving treatment is illegal and intolerable,” Shira Wakschlag, director of legal advocacy and associate general counsel at The Arc said in a statement. “This is an important first step and we call on the Governor to meet with the disability community in developing transparent and clear guidance on how to implement these non-discrimination requirements in the event that rationing of ventilators becomes necessary.”
The Arc was one of the advocacy organizations to file complaints with HHS upon finding discriminatory provisions in the plans various states have drafted for prioritizing who receives care during times of crisis when resources are low.
Alabama’s plan, entitled “Criteria for Mechanical Ventilator Triage Following Proclamation of Mass-Casualty Respiratory Emergency,” deprioritized people with intellectual disabilities for live-saving intervention in the event that the state runs low on ventilators or other resources. The plan, as re-uploaded by the Center for Public Integrity after Alabama Public Health removed it from its website, read that “persons with severe or profound mental retardation, moderate to severe dementia, or catastrophic neurological complications...are unlikely candidates for ventilator support.”
In the Arc’s complaint against Alabama, filed with HHS on March 24, the group asserts that the guidelines violate the Americans with Disabilities Act, the Rehabilitation Act, and the Affordable Care Act by recommending exclusion from treatment for people based only on their disabilities, rather than on a more individualized assessment of their condition. Furthermore, the complaint alleges the criteria for excluding disabled people is based on “misguided assumptions about the quality of life, the value of life, the prospects for survival, and the resource needs of people with disabilities.”
“Disability is a natural part of the human condition. It does not signify the absence of health or the absence of a vibrant life. To put out policies that specifically say we will not provide a ventilator or lifesaving care to someone who has an intellectual disability -- that’s just saying we are going to prioritize lives we think are more valuable over the lives of people with disabilities,” said Maria Town, president and CEO of disability rights organization American Association of People with Disabilities.
Shortly after the complaints from various states came flooding in, HHS released a bulletin reminding state programs to adhere to laws prohibiting discrimination in spite of the unprecedented nature of the coronavirus pandemic. Alabama Public Health subsequently withdrew links to the guidelines from its website as required by HHS’ Office of Civil Rights and clarified that the criteria are no longer in effect.
“All people deserve compassion and equal respect, and with this in mind, the allocation of care cannot discriminate based on race, color, national origin, disability, age, sex, exercise of conscience or religion. This includes the use of ventilators during medical emergencies in addressing the needs of at-risk populations in Alabama,” Dr. Scott Harris, state health officer of the Alabama Department of Public Health, said in a statement.
Alabama’s plan drew attention for its especially troubling language, but The Arc’s Wakschlag said triage guidelines from other states including Kansas, Tennessee, Utah, and Washington are problematic in other ways.
Some states’ guidelines equate quality of life with prognosis of survival following medical intervention. Just because someone requires support from a caretaker for daily activities, for example, doesn’t necessarily mean they are less likely to survive when intubated, Wakschlag said. Similarly, relying too heavily on the likelihood of long-term survival opens the door to discrimination, because some disabilities can impact longevity. In some states, guidelines would permit ventilator reallocation from individuals who regularly rely on ventilator support to able-bodied individuals in the event that both fall ill.
“This is not a new concern. People with disabilities have long been advocating to make sure discrimination and bias was not at play when receiving medical treatment,” Wakschlag said.
“When things are so urgent and happening so quickly and the decisions are so difficult, that’s when I think it is so important to have clear guidelines, which the federal government did issue.”
So what can be done to prevent discrimination against disabled Americans in times of crisis? Short-term, groups like The Arc plan to continue flagging discriminatory provisions in triage plans, like Alabama’s. But long-term, Wakschlag and Town urged authorities to include disabled voices when drafting important public policy like triage plans at the state level, or even the federal stimulus bill, which disability advocates said glossed over the needs of the community.
“A pandemic and disasters do not mean you can curtail civil rights. The disability community is just one of many communities for whom when disaster strikes they become very scared,” Town said. “People who are overweight, people who are trans — anyone who has a body that is seen as non-compliant or less than is at risk here.”