'I'm Not the Doctor for You': Disabled Americans Face Discrimination Seeking Care
Over 30 years since the passage of the Americans with Disabilities Act (ADA), some doctors harbor biases toward people with disabilities, and even actively avoid accepting them as patients, a new study finds.
In focus group discussions with about two dozen U.S. doctors, researchers found that many said they lacked the knowledge and skill to care for patients with disabilities. Even basic physical accommodations, like accessible buildings and medical equipment, were an issue.
When asked how they measured the weight of a wheelchair user, some doctors said they sent the patient to a supermarket, grain elevator or zoo.
But while some doctors said they did the best they could, others expressed negative attitudes saying patients with disabilities were "entitled," or that providing care to them was a burden. Some believed the ADA — a 1990 law that prohibits discrimination based on disability — works against the medical profession.
One provision of the law requires user-friendly spaces for people who use wheelchairs, scooters, canes and other devices to get around. Medical providers must also provide sign language interpreters for the deaf and be able to transfer disabled patients from a chair to an examining table.
In some cases, doctors said they routinely made excuses to avoid caring for patients with disabilities. Those ranged from "I no longer take new patients," to "I'm not the doctor for you."
The findings, published in the October issue of the journal Health Affairs, are based on conversations with a small number of doctors.
But experts said they add to a body of work showing that many people with physical and intellectual disabilities find it nearly impossible to simply get an appointment with a doctor. And when they do, they are often unhappy with their care.
The study also squares with everyday experiences.
"This validates the stories that I hear all the time," said Bethany Lilly, senior director of public policy at The Arc, a Washington, D.C.-based advocacy group for people with intellectual and developmental disabilities.
"This isn't surprising or shocking to me," said Lilly, who was not involved in the study. "People may think this problem was solved years ago, with the ADA. It wasn't."
At the same time, she and other experts said the issue runs far deeper than individual doctors with bad attitudes.
"This is a systems problem," said Dr. Tara Lagu, the lead researcher on the work.
For one thing, medical school and post-graduate training do not prepare doctors for meeting the needs of patients with disabilities, said Lagu, a professor at Northwestern University Feinberg School of Medicine, in Chicago.
Another broad problem, Lagu said, is insurance reimbursement, which does not factor in the longer appointments that are often necessary for patients with more complex needs.
Doctors in the focus group called it "unreasonable" and "ridiculous" to expect the standard 15-minute appointment to be enough for patients with disabilities. They also complained about financial barriers to providing proper equipment or other services. One primary care doctor described hiring a service to do sign language interpretation, but found that the practice lost money on every appointment where the service was used.
That doctor is not an anomaly.
An 'unacceptable' response
"Studies show that the vast majority of deaf signers are not provided with an interpreter," said Dr. Michael McKee, co-director of the University of Michigan's Center for Disability Health and Wellness.
Instead, he said, those patients are usually given pen and paper; in other cases, family members do the interpreting.
"That is unacceptable," said McKee, who himself has hearing loss and uses a cochlear implant.
But like Lagu and Lilly, he said the responsibility for providing quality health care to people with disabilities cannot be shouldered by doctors alone.
All health care providers and staff, McKee said, need adequate education, training and resources — and that involves many "players," including health care systems and insurers. Doctors, nurses and other providers are overburdened as it is, he pointed out.
"Expecting physicians to manage it all is unreasonable," McKee said. "We need a systems overhaul."
On the insurance side, he said, "better billing models" that account for the complexity of an appointment are one potential way to help.
As for education, all three experts said that medical schools and residency programs clearly have the responsibility to better prepare doctors. But there's also a need for continuing education for doctors already in practice.
Lilly also noted the lack of a central resource for doctors who want assistance in better accommodating patients with limitations. She pointed to the Job Accommodation Network, a free service that gives employers guidance on workplace accommodations and disability employment issues.
"A similar resource for doctors might be helpful," Lilly said.
Another fix, she and McKee said, would be greater involvement of people with disabilities in health care — both on the care side and in shaping health care policies and practices.
A huge swath of the population has some form of disability, Lagu noted, and yet it's a group that is left out of the discussion on health care disparities.
"That's just not acceptable," she said.
The U.S. Centers for Disease Control and Prevention has more on disability and health.
SOURCES: Tara Lagu, MD, MPH, professor, medicine, and director, Center for Health Services and Outcomes Research, Northwestern University Feinberg School of Medicine, Chicago; Michael McKee, MD, MPH, associate professor, family medicine, and co-director, Center for Disability Health and Wellness, University of Michigan, Ann Arbor, Mich.; Bethany Lilly, JD, senior director, public policy, The Arc, Washington, D.C.; Health Affairs, October 2022