Ben Salentine, associate director of health sciences managed care at the University of Illinois Hospital and Health Sciences System, hasn’t been weighed in more than a decade. His doctors are “just guessing,” his weight, he said, because they don’t have wheelchair-accessible scales.
He is far from alone. Many people with disabilities describe the challenges of finding doctors to care for them. “You’d assume medical spaces are the most accessible places out there, and they’re not,” said Angel Miles, a rehabilitation program specialist with the Administration for Community Living, part of the U.S. Department of Health and Human Services.
Not only do clinics often lack the necessary equipment — such as scales suitable for people who use wheelchairs — but at least some physicians actively avoid patients with disabilities, with excuses like “I’m not taking on new patients” or “you have to get a specialist,” according to an article in the October 2022 issue of Health Affairs.
The work, which analyzed focus group discussions with 22 physicians, adds context to a larger study published in February 2021, also in Health Affairs, which found that only 56 percent of physicians strongly welcomed patients with disabilities into their practices. Less than half were convinced or very sure that they can provide the same quality of care to people with disabilities as they do to other patients. The studies add to a larger body of research suggesting that patients with a variety of conditions that doctors may deem more difficult to treat often struggle to find quality care. The Americans with Disabilities Act of 1990, or ADA, theoretically protects one in four adults in the United States with disabilities from discrimination in public and private medical practice, but its enforcement is challenging.
Laura VanPuymbrouck, an assistant professor in the Department of Occupational Therapy at Rush University, said the 2021 research was “groundbreaking.” It was the crack that kind of broke the dam.” Now researchers hope that medical schools, payers and the group that accredits hospitals, the Joint Commission, will encourage health care providers to provide more equitable care.
Information about the health care of people with disabilities is limited, due in part to scarce data, according to Tara Lagu, co-author of both the 2021 and 2022 papers and director of the Institute for Public Health and Medicine’s Center for Health Services & Outcomes. Research at the Feinberg School of Medicine at Northwestern University. The few studies that have been done suggest that people with disabilities receive less preventive care and have worse outcomes than their non-disabled counterparts.
About ten years ago, Lagu discharged a patient who was partially paralyzed and who used a wheelchair. The patient’s discharge notes repeatedly recommended a specialist appointment, but this was not done. Lagu asked why. Finally, the patient’s adult daughter told Lagu that she had not been able to find a specialist to see a patient in a wheelchair. In disbelief, Lagu began to call. “I couldn’t find a doctor within 100 miles of her home who would see her unless she got into an ambulance and was transferred to an exam table by EMS,” she said, “which would have cost her family more than $1,000 of bag.”
In recent years, studies have shown that even when patients with disabilities can see doctors, their doctors’ prejudices about conditions such as obesity, intellectual disabilities, and substance use disorders can have profound implications for the care they receive. Doctors can assume a person’s symptoms are caused by obesity and tell them to lose weight before considering testing.
For one patient, this meant a severely delayed diagnosis of lung cancer. Patients with mobility or intellectual challenges are supposed to be celibate, so their caregivers skip any discussion about sexual health. People in wheelchairs may not be weighed even if they are pregnant, a time when weight is monitored is especially important as too little or too much weight can put the baby at risk for developmental delays or the mother at risk for complications during childbirth.
These issues are well known to Lisa Iezzoni, a health policy researcher at Massachusetts General Hospital and a professor of medicine at Harvard Medical School. Over the past 25 years, Iezzoni has interviewed about 300 people with disabilities for her research on their experiences and outcomes in healthcare, and she realized that “every person with a disability tells me that their doctors don’t respect them, have incorrect assumptions about or has no idea how to provide care.” She decided it was time to talk to doctors in 2016. After the NIH funded the work, she and Lagu recruited the 714 doctors who participated in the survey for the work, which will be published in Health Affairs in 2021.
Not only did many doctors report feeling unable to properly care for people with disabilities, but the vast majority believed those patients have a poorer quality of life, which could lead to fewer treatment options.
During that study, Iezzoni’s team recorded three focus group discussions with 22 anonymous physicians. While the open discussions were not included in the initial publication, Lagu said she was “completely shocked” by some of the comments. While some doctors in the focus groups welcomed the idea of additional training to help them better care for patients with disabilities, others said they were overworked and that the typical 15 minutes allotted for office visits is not enough to give patients proper care. to provide care. Still others “started describing that they felt these patients were a burden and that they would discharge patients with disabilities from their practice,” she said. “We had to write it down.”
The American Medical Association, the largest professional organization representing physicians, has declined an interview request from Undark and declined to comment on the two health case studies. When asked about the organization’s policies regarding the care of patients with disabilities, a representative pointed to the AMA’s strategic plan, which includes a commitment to justice.
