Details of three focus groups offer disturbing details about the challenges individuals with disabilities face when seeking care By Jessica Bartlett Globe Staff,Updated October 6, 2022
Clinicians participating in focus groups said they experienced many barriers to caring for people with disabilities, with some suggesting they avoided caring for them as a result.
Dr. Lisa Iezzoni pulled her wheelchair up to the screen and asked the physicians on the video call about their experiences and attitudes caring for people with disabilities.
Iezzoni’s wheelchair was out of view as the physicians spoke candidly and shockingly about their experiences. Not only did several of the 22 doctors say they did not have the equipment or training to care for people with disabilities, but some felt burdened by the work. Some clinicians openly talked about how to avoid caring for the population altogether.
Details of the three focus groups she moderated made public this week offer disturbing and eye-opening details about the challenges individuals with disabilities face when seeking care.
“[Physicians] don’t necessarily know about making accommodations,” said Iezzoni, a professor at Harvard Medical School and a longtime disability researcher, who has multiple sclerosis. “For almost 25 years now people have been asking me, ‘Why is health care so far behind every other industry?’ You go to see a Celtics game or Fenway and they have great disability access. But health care facilities, not so much.”
The focus groups, conducted by scientists from Northwestern Medicine in collaboration with Iezzoni, a senior author, and colleagues from the University of Massachusetts, were conducted to help design a national online survey. The focus groups identified barriers patients might encounter when receiving health care and found that physicians are often unfamiliar with how to accommodate individuals with disabilities. Other barriers that patients with disabilities might encounter included short appointment times, bias, and a lack of training.
The subsequent national study, which ran from October 2019 to June 2020, surveyed over 700 physicians online, revealing that over a third knew little or nothing about their responsibilities under the Americans with Disabilities Act, and nearly 70 percent believed they were at risk of lawsuits under the ADA because of a lack of accommodations. The research was published in the journal Health Affairs in January.
The researchers then published the focus group data separately in Health Affairs on Monday, because the inflammatory comments weren’t cited in the national study and were important on their own, said Dr. Tara Lagu, professor of medicine at the Northwestern University Feinberg School of Medicine and a lead author of the study.
“It was upsetting and indicative of the disparities we’re seeing,” Lagu said. “It does seem like these attitudes might play a role in some of the barriers to care that people with disabilities face.”
Researchers conducted video interviews with three groups of physicians, asking them about their experiences caring for patients with mobility, vision, and hearing impairments as well as mental illness and intellectual disabilities. What they discovered were barriers to providing care at nearly every part of the encounter, undergirded by negative attitudes some had toward people with disabilities.
All clinicians reported physical barriers to providing proper health care, such as nonadjustable height exam tables and scales that couldn’t accommodate a person in a wheelchair. Some reported using workarounds. Some physicians said they sent patients to a supermarket, grain elevator, zoo, or cattle processing plant to obtain a weight.
Communication also proved a challenge. None of the physician participants provided written materials in Braille to their patients, and only a few offered them in large type. Physicians frequently said they relied on caregivers or turned to written communication, such as using a white board for people with hearing loss.
Some accommodations created hurdles of their own. One physician reported hiring a sign language interpretation service, and found that it cost $30 more than the reimbursement for the entire visit.
Clinicians also lacked knowledge, experience, and skills necessary to provide proper care and frequently mentioned concerns about how to move patients with mobility issues.
All the problems were compounded by structural issues, with physicians feeling they didn’t have the time to properly address such concerns within a 15-minute visit. Electronic medical records also don’t currently ask about disabilities or accommodations, and often physicians were unaware patients requiring accommodations had been scheduled for an appointment.
The focus groups additionally revealed negative attitudes among some doctors toward people with disabilities, with some saying that providing care to such individuals was burdensome. There was also limited recognition of the large number of people who fit into these categories, though more than 61 million Americans reported having a disability in 2016.
Some participants said they denied care to people with disabilities or attempted to discharge them from their practice, saying they were no longer taking new patients.
The findings add to a canon of work by Iezzoni, Lagu, and others on the barriers those with disabilities confront when seeking care. The studies have found that physicians have a limited understanding of what accommodations they are obligated to provide as well as inaccurate views of the quality of life of a person with disabilities.
Lagu envisions a comprehensive set of solutions to change attitudes and environments. Reimbursements for seeing patients with a disability should increase, and electronic medical records should have ways to collect data on disabilities and accommodations. Not only would that help medical practices prepare for such visits, but it would enable researchers to track whether individuals with disabilities have poorer health outcomes.
Groups need more and better incentives to buy accessible equipment, Lagu said, and staff should also receive training on how to work with disabled populations. Additionally, disability training is not currently required as part of accredited medical school education or graduate medical education.
Despite this, disability advocacy group The Arc has been working with medical schools in Massachusetts to provide instruction on caring for individuals with intellectual and developmental disabilities, including autism. Because it isn’t part of the accredited curriculum, The Arc is generally not paid for the work, though legislation has been pending for several sessions that would codify the program and establish state funding for it.
Another piece of legislation would establish standards of care in hospitals for patients with autism, and intellectual and developmental disabilities and create a committee to come up with continuing education requirements.
Such training is key to ensure there isn’t discrimination and that doctors don’t incorrectly chalk up medical problems to a person’s disability. Maura Sullivan, senior director of government affairs and health policy at The Arc, recalled that physicians attributed her young son’s sleeplessness and self-injurious, aggressive behavior to his nonverbal autism. But a doctor eventually discovered he had severe reflux, and the behavior stemmed from the pain he felt when lying down.
“What we find is implicit bias, and the bias that exists in the medical community affects treatment and assessment and the overall quality of health care provided,” she said. “And a lot of this is lack of experience.”
Lagu said the attitudes people had were a product of both a difficult treatment environment and medical training that didn’t give them the tools to provide better care.
“We do have to change medical education, and figure out how not to train people into these attitudes,” Lagu said. “That’s what I think has happened here. Through medical education and training, lack of support, and financial incentives being as upside down as they are, we train people to do the wrong thing. We have to figure out how to change the system while we try to address these attitudes.”
Jessica Bartlett can be reached at jessica.bartlett@globe.com. Follow her on Twitter @ByJessBartlett.
