Shortly after one of my younger sisters was diagnosed with breast cancer in her early 50s, I scheduled a routine check-up with my new primary care physician. I use a wheelchair because of multiple sclerosis and so I’m typically hypervigilant about accessibility. But I was so relieved to have this new physician, who came highly recommended both for clinical skills and kind demeanor, that I let my guard down and didn’t visit the practice beforehand.
That was a mistake.
The physician’s office was in one of those architectural gems from the early 20th century — a bow-fronted building with large windows and handsome woodwork. At least it had a workable ramped entrance and an old-fashioned but functional elevator.
We began the visit in the doctor’s office. After hearing about my sister’s recent cancer diagnosis, the physician wanted to do a complete breast exam, with me supine on the exam table. But the exam room across the hall was small, and getting me and my wheelchair into the room, dominated by its fixed-height exam table, would be a tight fit. In any case, I could not safely get onto the high table using the room’s small step stool. As the appointment time was running short, the physician did a cursory breast exam with me seated in my wheelchair.
As a researcher studying health care disparities for people with disability, I know this experience was not uncommon. I have interviewed hundreds of people with various disabilities who described their experiences receiving substandard care because of failures to accommodate their disability:
- Pregnant wheelchair users not weighed during prenatal care visits because no accessible weight scale was available — some were told to ask their post office to weigh them on package scales.
- Women not given Pap tests to check for cervical cancer because their clinicians did not get them out of their wheelchairs.
- Clinicians who refused to hire American Sign Language (ASL) interpreters for Deaf patients who requested this accommodation to ensure effective communication, and who instead insisted on writing notes on paper. In one instance, a Deaf woman receiving her first Pap test was not told that a speculum would be inserted and felt she was unexpected and painfully violated; a Deaf man receiving a testicular exam was not informed why and thought he was being sexually assaulted.
Nonetheless, despite what I know about health care for people with disability, when my new primary care physician gave my breast exam short shrift, I felt powerless to object.
The 1990 Americans with Disabilities Act (ADA) requires that people with disability receive equitable care — Title II of the act applies to public facilities, like government-run clinics, while Title III involves private settings that serve the public, like doctor’s offices.
The ADA requires that people with disability receive reasonable accommodations to ensure that care is accessible and that communication with their clinicians is effective. It does not, however, specify exactly what accommodation everyone should receive. Instead, the ADA assumes that all patients have their own specific needs — a cookie-cutter, identical approach will not suffice.
Some wheelchair users like me, for example, can stand briefly and pivot onto an exam table that is appropriately lowered. Others may require a transfer board to move themselves from chair to table or have the arm strength to use an exam table’s support rails; still others might need an automated lift device. People who are Deaf or hard of hearing may require an ASL interpreter to ensure effective communication, while others need some sort of voice amplification device, closed captioning approach, or other communication method.
The ADA requires that physicians and/or clinical staff discuss accommodation needs with their patients with disability and collaborate in making reasonable accommodation decisions, emphasizing patients’ preferences. Yet many physicians are unclear about their responsibilities under the ADA.
Between late 2019 and early 2020, several colleagues and I surveyed more than 700 physicians with outpatient practices. Our results, published in the journal Health Affairs, showed that almost 36% of physicians reported knowing little or nothing about their legal responsibilities or obligations under the ADA when caring for patients with disability, while 50% said they had some knowledge. Seventy-one percent did not know who determines reasonable accommodations for patients with disability — that it requires collaboration between patients and physicians and/or clinical staff. Indeed, only 40% of physicians recognized that patients and/or their family should be involved.
More than two-thirds (68%) felt they were at risk of ADA lawsuits because of problems providing reasonable accommodations to patients with disability.
Given this lack of knowledge among physicians, problems like the one I experienced happen across the country every day — many with much more harmful impacts — leaving people with disability feeling dissatisfied and worried they did not get the same quality care as people without disability.
When I discuss this issue with nondisabled individuals, one of the first questions involves cost: Won’t accommodations cost physicians’ practices a lot of money? Some accommodations are inexpensive, like transfer boards or voice amplification devices, each of which can cost less than $50. Height-adjustable exam tables are more expensive than other exam tables, but they offer win-win benefits. Clinical staff are less likely to be injured while helping patients transfer to the table, and clinicians can set the table height at the level that best suits their ergonomic needs while examining patients. Federal tax credits and deductibles are available to private businesses to offset capital expenses for improving disability access.
In the power dynamic between patients and physicians, patients historically have not held authority but relied on the beneficence of their clinicians to ensure their needs are met. However, in the case of disability, physicians sometimes fail to understand patients’ needs or make erroneous assumptions about them.
An earlier finding from our survey was that 82% of physicians reported they believed that people with significant disability have worse quality of life than other people, contradicting the satisfaction that most people with disability feel about their lives.
Physicians have a professional and ethical responsibility to provide equitable care to all of their patients. For people with disability — approximately 61 million Americans — that may require making reasonable accommodations to ensure they receive the quality care they deserve.
Lisa I. Iezzoni is a research physician at Massachusetts General Hospital, professor of medicine at Harvard Medical School, and author of “Making Their Days Happen: Paid Personal Assistance Services Supporting People with Disability Living in Their Homes and Communities” (Temple University Press, December 2021).
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