When people with mobility disabilities try to access health care, they routinely cannot get essential services. I should know: I am a radiologist AND a wheelchair user, as the result of a congenital degenerative neuromuscular disease diagnosed later in life.
Given the fact that I am a retired physician, now embarking on a second career in community practice social work, I have a level of expertise not only with the realities of life with a physical disability, but also with the serious consequences if patients do not have access to comprehensive, timely medical care.
National research, not to mention the experiences of Connecticut residents with disabilities like me, has documented that our state’s health care facilities frequently do not have medical diagnostic equipment that can be accessed by people with mobility disabilities. This includes equipment for conducting the most basic diagnostic functions such as obtaining a patient’s weight or giving them a complete physical exam.
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When I arrive for my annual physical, I expect to be weighed; I do not expect to be asked what I weigh, nor do I expect to be told that there is no scale to accommodate my wheelchair. Yet, this is what I have routinely experienced.
In my advocacy work, I have met people with disabilities who have never been weighed since reaching adulthood. I also know people with disabilities who haven’t had a full physical exam in 20 years. In fact, I am one of them!
There are some physicians who rationalize that they can perform an adequate exam while a patient remains in his or her wheelchair. But that can’t be right, in almost all cases. While it is critical that a doctor be able to access all aspects of a patient’s body in general, this is especially important for a patient with a physical disability whose lack of movement and full-time use of a wheelchair predisposes him or her to pressure ulcers which need to be recognized, assessed, and treated.
It is possible for some patients with physical disabilities to get onto an exam table by rising from their wheelchairs, but frequently the height of the table precludes that. However, if the table height was adjustable, a feature that has long been commercially available at relatively low additional cost, the patient could transfer with relative ease.
The problem of lack of accessible equipment extends beyond the physician’s office to hospitals, outpatient clinics, and radiological practices across the state. Mammography machines, x-ray machines and other imaging equipment are frequently inaccessible. As a radiologist, I can attest that imaging procedures can catch serious illnesses such as cancer at an early stage, thereby preventing much more expensive treatment down the road, not to mention saving lives.
None of this is legal. Under the Americans with Disabilities Act and the even earlier Rehabilitation Act of 1973, health care providers offering services to the public and recipients of federal funds have long been required to make their services available to people with disabilities so that they can have the same access as people who are able-bodied, subject to exceptions where doing so would be an undue financial or other burden, or result in a fundamental alteration. But these laws have been honored in the breach.
In desperation, people with disabilities have started to file federal complaints against medical providers because of this ubiquitous non-compliance with anti-discrimination laws putting them at risk. This includes against Jefferson Radiology, which, according to a federal complaint, told more than one wheelchair user that they have a policy of only serving disabled people who can “stand and pivot.” But endless litigation is not desirable here.
In the current session of the Connecticut General Assembly, the Public Health Committee has unanimously passed a bill, HB 5200, that would finally address the severe problem of inaccessible medical diagnostic equipment by requiring the acquisition of equipment that meets the well-developed standards established by the U.S. Access Board, at the direction of Congress. If amended to follow proposed parallel federal regulations in this area, including the various exceptions to compliance intended to avoid any undue burdens on providers, this bill can finally address the crying need for relief, while also reducing the burden on our state’s health care facilities, particularly smaller providers.
This op-ed is not just a wake-up call to legislators and medical professionals. In my advocacy work, it has become clear that many people with disabilities also do not understand what’s at stake when inaccessible diagnostic equipment prevents them from getting the care that able-bodied people take for granted. They also frequently like their doctor and don’t want to endanger the relationship by causing trouble and demanding what are their legitimate rights under the law.
I see the issue from both sides — as a doctor who has worked hard to make a living and as a person in a wheelchair who has worked even harder to get the medical care I need. It is time for the legislature to step up to the plate and finally act for the benefit of all.
Dr. Cindy Miller is a retired radiologist from Yale New Haven Health who is a newly minted MSW involved in community practice for social change.