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Wednesday, April 15, 2020

Triage: Who Is Ventilator Worthy?

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all.

People with autism and other disabilities have faced discrimination in organ transplants.  Now they face discrimination in the availability of ventilators.

At Texas Public Radio, David Martin Davies reports that some states "have flatly spelled out that disabled people should be last in line for a ventilator when they become in short supply during the peak of the coronavirus treatment crush.  This means those states see people with Down syndrome or autism as not ventilator worthy."

Joseph Shapiro at NPR reports that three federal statutes protect the civil rights of people with disabilities in medical settings: The Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and the Affordable Care Act.
In April and March, disability groups cited those laws when they filed complaints against the "crisis of care" guidelines in several states. Kansas and Tennessee, according to lawyers who filed the complaint, would cut care to some people who rely upon home ventilators to breathe, although many use them to lead active lives. New York's plan says that a person who shows up at a hospital with their personal home ventilator could have it taken from them and given to someone else. And Washington State would factor in old age and disability. Similar complaints have been filed from Pennsylvania, Utah and other states.
On March 28, the Office for Civil Rights at the Department of Health and Human Services announced it had opened or would open investigations based on these complaints and warned states that any guidelines for triage of care could not put disabled people and the elderly "at the end of the line" for care.
On April 8, the civil rights office announced its first case resolution in one of these investigations. Alabama said a policy no longer applied that would have allowed doctors to deny ventilators to some adults and children with intellectual disabilities or people with "moderate to severe dementia."
Late last year, the little known National Council on Disability released a series of reports looking at discrimination in health care against people with disabilities. It highlighted problems like insurance companies that use "quality of life" scores to deny medications and treatment; and organ transplants refused to people with autism, intellectual disabilities, mental illnesses or with HIV, even though scientific studies show their results with transplants are as good or better than the population at large.
The studies, from those months before the spread of the coronavirus, did not consider discrimination in medical care during a pandemic.
"But for people with disabilities, almost every day is a pandemic," says Neil Romano, chair of agency that issued the reports. "Because quite often they have to worry about what kind of care they're going to get, the quality of care, or if someone's even going to give them care."