Who gets a ventilator? Why people with disabilities fear medical rationing

BUFFALO, N.Y. — Across the United States, many people with disabilities and their loved ones are fearful as COVID-19 raises the possibility that health care may need to be rationed.

What happens if a hospital doesn’t have enough ventilators? Which patients will receive oxygen, and which will not?

University at Buffalo disability history expert Michael Rembis can discuss how medical rationing could affect people with disabilities, how hospitals and policymakers can prevent discrimination, and how people with disabilities have endured health care inequities historically, including in times of crisis.

Rembis, PhD, is director of the UB Center for Disability Studies and an associate professor of history in the UB College of Arts and Sciences. His research interests have included the history of institutionalization, the history of eugenics and the relationship between disabled people and medicine.

“Who gets access to what types of health care and when? There is a long history of discrimination and isolation and segregation that people with disabilities have faced,” Rembis says.

“In general, throughout history, there’s been a perception among health care workers that people with disabilities have a lower quality of life — that they’re somehow less happy,” Rembis adds. “And so there’s a general neglect that occurs. I think this still persists today. Studies have shown that quite often, people with disabilities’ assessment of their own quality of life is much higher than health care workers and others assume.”

Rembis says such assumptions are among factors that have fueled discrimination against people with disabilities in the past and into modern times. Inequities in health care have taken many forms historically, ranging from eugenics to forced institutionalization to disparities in access to health services.

“There’s a long history of discrimination within the health care system,” Rembis says. “I don’t want to sound alarmist, but there’s a long history of eugenics with respect to disability that began in the early 20th century. When we talk about access to health care for people with disabilities, I think it has to be read in that historical context of eugenics and institutional neglect. Right up until the 1970s, most developmentally disabled people were warehoused in institutions. Many were subjects of medical experimentation and suffered high rates of neglect and abuse within those institutions.”

Now, during the COVID-19 pandemic, “there have been stories in the media that various states were trying to implement guidelines around prioritizing different patients, with some placing people with intellectual disabilities and traumatic brain injuries at the bottom of the list of people who should be served,” Rembis says.

Though the U.S. Department of Health and Human Services has issued guidance against discriminating against people with disabilities in the current situation, fears remain, Rembis says.

In addition to medical rationing, people with disabilities — including many aging adults and people with chronic illness — are vulnerable to COVID-19 in other ways, Rembis says. In recent decades, as deinstitutionalization began, many people with disabilities who need daily care have moved into group homes or nursing homes, where clusters of coronavirus cases have been detected in locations across the U.S., Rembis notes. Other people with disabilities receive in-home care from workers who are themselves at-risk.

“The home health care workers are largely women, women of color, and they’re working long hours in people’s homes and they often don’t have the protection that nurses and other staff would have in a hospital,” Rembis says. “They don’t have the same access to the protective gear that would help them stay safe and help the people they work with stay safe. We need to do more to protect these vulnerable populations.”