As baby boomers enter their 70s, 80s and 90s, the number of older adults with disabilities – whether it be difficulty walking, seeing, hearing, memory, cognition or performing daily activities like bathing or using the toilet – will soar in the coming decades.
But the health system is not prepared to meet their needs.
This became painfully clear during the COVID-19 pandemic, when seniors with disabilities were denied care and hundreds of thousands died. Now, the Department of Health and Human Services and the National Institutes of Health are addressing some of the failures that contributed to these problems.
One initiative will increase access to medical care, devices, and web-based programs for people with disabilities. The other initiative recognizes that people with disabilities, including older adults, are a separate population with special health concerns that require more research and attention.
Lisa Iezzoni, 69, a Harvard Medical School professor who has had multiple sclerosis since her early 20s and is widely considered a leading expert on the condition, called the development “an important attempt to make health care more equitable for people with disabilities.”
“For too long, health care providers have not kept up with societal changes, technological changes and changes in the types of help people need,” she said.
Notable findings from Iezzoni’s research published in recent years include:
Many doctors are prejudiced: In a survey published in 2021, 82% of doctors admitted that they believe people with severe disabilities have a worse quality of life than people without disabilities, and only 57% said they would welcome patients with disabilities.
“It’s shocking that so many doctors say they don’t want to treat these patients,” said study co-author Eric Campbell, a professor at the University of Colorado School of Medicine.
The findings apply to people of all ages with disabilities, but older people are more likely to live with a disability than younger people: About one-third of people aged 65 and older, or about 19 million people, live with a disability, according to the University of New Hampshire Disability Institute.
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Physicians don’t understand their responsibilities: In 2022, Iezzoni, Campbell, and colleagues reported that 36% of physicians had little or no knowledge of their responsibilities under the Americans with Disabilities Act of 1990, indicating a concerning lack of training. The ADA requires medical practices to provide equal access to individuals with disabilities and to accommodate disability-related needs.
The practical result is that few clinics have height-adjustable tables or mechanical lifts to enable frail or wheelchair-bound people to undergo thorough medical examinations, only a handful have bathroom scales that can weigh wheelchair users, and most diagnostic imaging equipment cannot be used by people with significant mobility limitations.
Iezzoni experiences these problems firsthand: She relies on a wheelchair and is unable to maneuver onto a fixed-height examination table, and she told me she hasn’t weighed herself in years.
The health care impacts are that people with disabilities have less access to preventive care and experience poorer health and more comorbid conditions than their peers; physicians too often rely on incomplete information when making recommendations; barriers to care increase; and patients are less satisfied with the care they receive.
Worse yet, when crisis care standards were developed during the pandemic, people with disabilities and the elderly were considered low priority. These standards were intended to ration care based on need, given the scarcity of ventilators and other potentially life-saving interventions.
There is no more vivid example of the harmful overlapping prejudices against older people and people with disabilities. Unfortunately, older people with disabilities regularly encounter this double discrimination when seeking medical care.
Such discrimination would be expressly prohibited in a rule proposed by HHS in September that would be the first revision in 50 years to Section 504 of the Rehabilitation Act of 1973, a landmark law that helped establish civil rights for people with disabilities.
The new rules establish specific and enforceable standards for accessible equipment, such as examination tables, scales, and diagnostic machines, require electronic medical records, medical apps, and websites to be accessible to people with a range of disabilities, and prohibit treatment policies that stereotype people with disabilities, such as COVID-19 crisis medical standards.
“This is really going to be a game changer for people with disabilities of all ages, but especially for seniors,” said Allison Berkoff, director of the HHS Office of Community Living, who expects the rule to be finalized this year, with the medical device provisions to go into effect in 2026. Healthcare providers will incur additional costs associated with complying with the rule.
And in September, the NIH designated people with disabilities as a population with health disparities that deserves more attention, which should open up new funding sources and “stimulate data collection that will allow us to more precisely examine the barriers and structural issues that have impeded progress for people with disabilities,” said BonnieLynn Swenor, director of the Center for Disability Health Research at Johns Hopkins University.
One significant barrier for older adults is that, unlike younger adults with disabilities, many older adults with disabilities do not see themselves as disabled.
“Before my mother passed away in October 2019, she became blind from macular degeneration and deaf from genetic hearing loss, but she never described herself as disabled,” Iezzoni said.
Similarly, older adults who are unable to walk because of a stroke or severe osteoarthritis typically consider themselves ill rather than disabled.
Meanwhile, older adults are not well integrated into the disability rights movement, which is led by younger and middle-aged adults: They rarely participate in disability communities where they could find support from people with similar experiences, and they rarely seek out the help that might be available to them under the ADA or the Rehabilitation Act of 1973.
Swenor said many seniors are unaware that they even have rights under these laws. “We need to think more inclusively about people with disabilities and make sure that older people are fully included during this really important time of change.”
Judith Graham: [email protected],
Judith Graham
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