January 17, 2024
KFF Health News: America’s Health System Isn’t Ready for the Surge of Seniors With Disabilities
The number of older adults with disabilities — difficulty with walking, seeing, hearing, memory, cognition, or performing daily tasks such as bathing or using the bathroom — will soar in the decades ahead, as baby boomers enter their 70s, 80s, and 90s.
But the health care system isn’t ready to address their needs.
That became painfully obvious during the covid-19 pandemic, when older adults with disabilities had trouble getting treatments and hundreds of thousands died. Now, the Department of Health and Human Services and the National Institutes of Health are targeting some failures that led to those problems.
One initiative strengthens access to medical treatments, equipment, and web-based programs for people with disabilities. The other recognizes that people with disabilities, including older adults, are a separate population with special health concerns that need more research and attention.
Lisa Iezzoni, 69, a professor at Harvard Medical School who has lived with multiple sclerosis since her early 20s and is widely considered the godmother of research on disability, called the developments “an important attempt to make health care more equitable for people with disabilities.”
“For too long, medical providers have failed to address change in society, changes in technology, and changes in the kind of assistance that people need,” she said.
Among Iezzoni’s notable findings published in recent years:
Most doctors are biased. In survey results published in 2021, 82% of physicians admitted they believed people with significant disabilities have a worse quality of life than those without impairments. Only 57% said they welcomed disabled patients.
“It’s shocking that so many physicians say they don’t want to care for these patients,” said Eric Campbell, a co-author of the study and professor of medicine at the University of Colorado.
While the findings apply to disabled people of all ages, a larger proportion of older adults live with disabilities than younger age groups. About one-third of people 65 and older — nearly 19 million seniors — have a disability, according to the Institute on Disability at the University of New Hampshire.
Doctors don’t understand their responsibilities. In 2022, Iezzoni, Campbell, and colleagues reported that 36% of physicians had little to no knowledge of their responsibilities under the 1990 Americans With Disabilities Act, indicating a concerning lack of training. The ADA requires medical practices to provide equal access to people with disabilities and accommodate disability-related needs.
Among the practical consequences: Few clinics have height-adjustable tables or mechanical lifts that enable people who are frail or use wheelchairs to receive thorough medical examinations. Only a small number have scales to weigh patients in wheelchairs. And most diagnostic imaging equipment can’t be used by people with serious mobility limitations.
Iezzoni has experienced these issues directly. She relies on a wheelchair and can’t transfer to a fixed-height exam table. She told me she hasn’t been weighed in years.
Among the medical consequences: People with disabilities receive less preventive care and suffer from poorer health than other people, as well as more coexisting medical conditions. Physicians too often rely on incomplete information in making recommendations. There are more barriers to treatment and patients are less satisfied with the care they do get.
Egregiously, during the pandemic, when crisis standards of care were developed, people with disabilities and older adults were deemed low priorities. These standards were meant to ration care, when necessary, given shortages of respirators and other potentially lifesaving interventions.
There’s no starker example of the deleterious confluence of bias against seniors and people with disabilities. Unfortunately, older adults with disabilities routinely encounter these twinned types of discrimination when seeking medical care.
Such discrimination would be explicitly banned under a rule proposed by HHS in September. For the first time in 50 years, it would update Section 504 of the Rehabilitation Act of 1973, a landmark statute that helped establish civil rights for people with disabilities.
The new rule sets specific, enforceable standards for accessible equipment, including exam tables, scales, and diagnostic equipment. And it requires that electronic medical records, medical apps, and websites be made usable for people with various impairments and prohibits treatment policies based on stereotypes about people with disabilities, such as covid-era crisis standards of care.
“This will make a really big difference to disabled people of all ages, especially older adults,” said Alison Barkoff, who heads the HHS Administration for Community Living. She expects the rule to be finalized this year, with provisions related to medical equipment going into effect in 2026. Medical providers will bear extra costs associated with compliance.
Also in September, NIH designated people with disabilities as a population with health disparities that deserves further attention. This makes a new funding stream available and “should spur data collection that allows us to look with greater precision at the barriers and structural issues that have held people with disabilities back,” said Bonnielin Swenor, director of the Johns Hopkins University Disability Health Research Center.
One important barrier for older adults: Unlike younger adults with disabilities, many seniors with impairments don’t identify themselves as disabled.
“Before my mom died in October 2019, she became blind from macular degeneration and deaf from hereditary hearing loss. But she would never say she was disabled,” Iezzoni said.
Similarly, older adults who can’t walk after a stroke or because of severe osteoarthritis generally think of themselves as having a medical condition, not a disability.
Meanwhile, seniors haven’t been well integrated into the disability rights movement, which has been led by young and middle-aged adults. They typically don’t join disability-oriented communities that offer support from people with similar experiences. And they don’t ask for accommodations they might be entitled to under the ADA or the 1973 Rehabilitation Act.
Many seniors don’t even realize they have rights under these laws, Swenor said. “We need to think more inclusively about people with disabilities and ensure that older adults are fully included at this really important moment of change.”
Originally published January 17, 2024
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.