For Tara Lagu, MD, MPH, the realization that the healthcare system was broken for patients with disabilities came when a woman she had been treating seemed to keep ignoring Lagu's request to see a urologist.
When Lagu asked the patient's two attentive daughters about the delay, their response surprised her. The women said they couldn't find a urologist who was willing to see a patient in a wheelchair.
Surprised and a bit doubtful, Lagu checked around. She found that, indeed, the only way to get her patient in to see the type of physician required was to send her by ambulance.
"It opened my eyes to how hard it is for patients with disabilities to navigate the healthcare system," Lagu said.
Lagu, director of the Center for Health Services and Outcomes Research at Northwestern University Feinberg School of Medicine, Chicago, Illinois, decided to take a closer look at how her colleagues in medicine care for — or not, as the case proved — the roughly one in four American adults, and millions of children, with disabilities.
In a series of three focus groups, Lagu and colleagues identified a range of obstacles — including some physician attitudes — that prevent people with disabilities from getting adequate care.
For the study, published today in Health Affairs, the researchers interviewed 22 physicians in three groups: nonrural primary care physicians, rural primary care physicians, and specialists in rheumatology, neurology, obstetrics/gynecology, orthopedics, and ophthalmology.
During the interviews, conducted in the fall of 2018, participants were asked about providing care for five specific types of disabilities: mobility, hearing, vision, mental health, and intellectual limitations.
Lack of Experience, Logistics Often Cited
Some physicians admitted that limited resources and training left them without the space and necessary knowledge to properly care for patients with disabilities. They felt they lacked the expertise or exposure to care for individuals with disabilities, nor did they have enough time and space to properly accommodate these patients, according to the researchers. Some said they struggled to coordinate care for individuals with disabilities and did not know which types of accessible equipment, like adjustable tables and chair scales, were needed or how to use them.
Several physicians also noted that they are inadequately reimbursed for the special accommodations — including additional staff, equipment, and time — required to care for these patients. One primary care physician said he hired a sign-language interpreter for a patient but the bill for their services exceeded the amount insurance reimbursed. As a result, he said, he spent $30 of his own money per visit to see the patient.
Because of these limitations, some physicians in the focus groups said they try to turn away patients with disabilities. Both specialists and general practitioners said they had told patients with disabilities that they didn't feel they could provide the care needed, and suggested they look elsewhere. A few were surprisingly — even upsettingly — honest, Lagu said, making statements such as: "I am not the doctor for you."
"We Really Need a Rewrite"
But "the disability itself isn't what leads to worse outcomes," said Allison Kessler, MD, section chief of the Renée Crown Center for Spinal Cord Innovation at Shirley Ryan AbilityLab. This study does a good job at highlighting "the need for change on multiple levels," said Kessler, who was not a member of the study team.
"People with disabilities have all these disparities in access and outcomes. We've never understood why. I think the why is complicated," Lagu added. "I think this study suggests some of the negative outcomes are due to explicit bias."
"It's also clear that the current framework of healthcare in the United States does not lend to allowing physicians and medical providers the time needed to adequately address patient issues — those with disabilities or just multiple complex problems," Colin O'Reilly, DO, vice president and chief medical officer at Children's Specialized Hospital, an acute rehabilitation facility affiliated with RWJBarnabas Health, in New Brunswick, New Jersey. "We really need a rewrite."
However, O'Reilly said, such a small study population with no control group and no mention of physician resources makes it difficult to come to a strong conclusion about physician bias and discriminatory attitudes against individuals with disabilities.
Lagu agreed, saying this research "is not conclusive in any way." The excuses doctors use to discharge patients with disabilities, such as "we don't accept your insurance," "we aren't taking new patients," and "we can't provide you with the appropriate care," could be legitimate, the study authors write. But the "disparities in care for people with disabilities suggest that there is a pattern of more frequently denying care to them than people without a disability," they added.
Kessler said many of her patients have told her they experience barriers to care. Some say finding an office with the necessary equipment is a challenge or that they often don't feel welcome.
The Americans With Disabilities Act (ADA) is a federal civil rights law that prohibits discrimination against individuals with disabilities in all public and private places that are open to the general public, including medical offices.
According to the researchers, "It is difficult to enforce the ADA in medical settings." They add that "explanations physicians gave in this study could, for any single case of denying care, be legitimate." Knowing whether a particular instance of denial of care represents discrimination related to disability is "nearly impossible," they write.
All the experts agreed that the study adds valuable insight into an ongoing health disparity. And while system and policy changes are required, Kessler said, individual physicians can take steps to improve the situation.
A physician in an academic setting can look at the curriculum and their medical school and see about increasing exposure to patients with disabilities earlier in training. In a practice, physicians can retrain staff to ask every patient if an accommodation is needed. "Each one of those changes can only help us move our system in the right direction," Kessler said.
The study was supported by a grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.
Health Affairs. Published online October 3, 2022. Full text
Donavyn Coffey is a Kentucky-based journalist reporting on healthcare, the environment, and anything that affects the way we eat. She has a master's degree from NYU's Arthur L. Carter Journalism Institute and a master's in molecular nutrition from Aarhus University in Denmark. You can see more of her work in Wired, Scientific American, Popular Science, and elsewhere.
Editor's note: This article includes a corrected title for Dr Kessler.
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