Brazen pandemic-era discrimination spurred new protections for patients with disabilities

Pervasive bias in the health system against patients with disabilities became glaringly apparent during the COVID-19 pandemic.

News organizations alerted the public about state triage plans that deprioritized people with disabilities for life-saving treatments and hospital visitor bans that barred patients with cognitive and communication disabilities from being accompanied by family members.

Stories also covered people with disabilities who were forced to live in congregate settings as independent living supports fell away and others who were blocked from accessing public health information and registering for a vaccine.

There were also troubling reports, such as one by NPR correspondent Joseph Shapiro, of hospitalized people with disabilities being pressured to agree to do-not-resuscitate orders.

An opportunity to educate

Disability rights advocates filed administrative complaints challenging crisis standard of care plans, no-visitor policies, and inaccessible testing. At least one state - Oregon - passed legislation adding protections for people with disabilities.

The public health emergency "provided vital opportunities to educate the general public about the stakes of disability discrimination in health care," Shira Wakschlag, J.D., senior director of legal advocacy at The Arc, a national organization that advocates for people with intellectual and developmental disabilities, said in an email.

That visibility provided momentum for the Biden administration to strengthen legal protections for people with disabilities, according to some experts.

In March 2020, the HHS Office for Civil Rights issued a bulletin publicly reminding health care providers of their obligation to uphold the civil rights of patients with disabilities. Two years later the agency gave more explicit guidance to providers on balancing civil rights and safety.

That guidance led the agency to finalize a new rule to strengthen health care protections for people with disabilities under Section 504 of the Rehabilitation Act of 1973, a cornerstone civil rights law for people who are disabled.

Significantly, the rule stipulates that treatment decisions not be based on bias or stereotype about a person's disability, a judgment that an individual with a disability will be a burden on others, or a belief that the life of a person with a disability has less value than the life of a person without a disability.

It also provides for accessible medical diagnostic equipment; accessibility standards for websites, mobile apps, and registration kiosks; and equitable consideration of the lives of people with disabilities in assessing the value of treatments and tests.

Remaining gaps

The new rule, which took effect in July, could alleviate problems such as patients with disabilities being turned away for mammograms or disqualified for an organ transplant based on their disability.

"Virtually every disabled person can tell a story of discrimination they have experienced," Alison Barkoff, J.D., who until recently led the Administration for Community Living, a federal agency that supports the needs of older adults and people who are disabled, wrote in May.

Barkoff is now an associate professor and director of the Hirsh Health Law and Policy Program at George Washington University's Milken Institute School of Public Health.

That pattern contributes to health disparities. The National Council on Disability, an independent federal advisory agency, notes that people who are disabled have lower life expectancies, higher rates of obesity and chronic disease, higher maternal mortality rates, and greater unmet medical, dental and prescription needs than the general population.

Still, many other barriers to equitable care remain.

In a February 2022 policy brief, "Health Equity Framework for People with Disabilities," the council listed more than 40 policy-based recommendations, many of which aren't addressed in the new rule and would require actions by other federal agencies or Congress.

They include mechanisms to boost funding for research and clinical care, better data collection, and, perhaps most notably, the steps to shift the culture of medicine.

"While some medical schools in the U.S. do provide disability competency training, the overwhelming majority do not," the council said in an emailed statement.
The statement advised journalists to tell stories about patients who continue to struggle to obtain competent care, including basic services such as cervical cancer screening. Such stories, it said, "illustrate what is still lacking in the healthcare system."