Going to the doctor’s office can feel routine. You sit in the waiting room, fill out the paperwork, get measured and hop onto the exam table.
But medical appointments for patients with disabilities require navigating a tricky obstacle course, full of impediments that leave them feeling awkward and could result in substandard care.
Despite laws that require ramps and wider doors for access, many health care providers don’t have scales that can accommodate wheelchairs, or adjustable exam tables for patients who can’t get up on one by themselves.
Dr. Lisa Iezzoni, a professor of medicine at Harvard Medical School who has multiple sclerosis and uses a wheelchair, said she went 20 years without properly being weighed. This can result in treatment plans, and even prescriptions, based on educated guesses rather than exact information, she said.
The Affordable Care Act was set to update standards for accessible medical treatment within the Americans with Disabilities Act (ADA), which is enforced by the Justice Department. But the Trump administration stopped action on this change late last year as part of its sweeping effort to roll back regulations across the federal government.
Denise Hok, 54, who lives in Colorado Springs and uses a wheelchair, opts for home health care when possible and avoids doctors’ offices where “it feels like it doesn’t really matter if something is wrong.”
The ADA, a 1990 civil rights measure designed to prohibit discrimination against people with disabilities, requires that public places be accessible, meaning new buildings and certain commercial establishments must provide ramps, doorways wide enough for a wheelchair, handrails and elevators.
The law applies only to fixed structures, though, and doesn’t address “furnishings” unattached to buildings. At doctors’ offices, that means scales, tables, X-ray machines and other diagnostic equipment aren’t legally circumscribed.
The result is that movie theaters and laundromats have to be accessible to all people, but important aspects of the medical industry do not, said Megan Morris, an assistant professor in family medicine at the University of Colorado who has studied patients with disabilities.
The DOJ’s decision in December not to update enforcement accordingly reinforces the disparities in how people are treated, said patients and disability rights advocates.
Paul Spotts, 58, who is paralyzed from the chest down, said his checkups are “a joke.” His doctors check his eyes and ears but they don’t put him on a scale or exam table because they can’t. They don’t know how tall he is and they rely on how much he thinks he weighs.
The lack of equipment mirrors a lack of physician training, experts said. To get at this frustration, or even the perceptions that lead to it, “we need to think more broadly: How do we equip our health care providers?” Morris said. “Providers don’t realize they may or may not be treating patients with disabilities differently.”