Why We're Failing Older Adults with Disabilities
Hearing loss is not uncommon, yet affordable solutions are. If we're unwilling to improve lives when we have the tools, what does that mean for those living with more complex disabilities?
Editor’s note: The Food and Drug Association announced on August 16, 2022 that later this fall, Americans with mild-to-moderate hearing loss will be able to buy hearing aids without a prescription. The move by the FDA is expected to lower the cost of hearing aids.
As the population ages, the number of people with disabilities will rise, meaning more people will need access to therapies and support systems. That's already happening with hearing loss, which affects most people after a certain age — yet hearing aids remain out of reach for many.
If this easy fix for a common problem isn't widely available, what does that say about the outlook for more complex conditions, such as intellectual disabilities, that are more expensive and harder to address in older adults?
Some say it will take a societal change, both in the U.S. and abroad.
"If there is a readily available treatment and you don't pursue it, it seems unfair."
"Mitigating the challenges posed by and for the global aging population will require broad, systemic change and deliberative action" in science, medicine, and policy, Victor Dzau, president of the National Academy of Medicine wrote in the foreward to the NAM's "roadmap" for a world in which people are living longer and want to maintain productive lives.
The report notes that societies were designed for a population living just half as long as people will be living by 2050.
It's essential for governments, individuals and the private sector to ensure people stay healthy as long as possible, which will mean overcoming obstacles including ageism, disease and inequity, the report said.
Old age not only increases the likelihood of disabling conditions, but is also the time when more people are likely to depend on public health insurance, said Maya Sabatello, associate professor of medical science in Columbia University Department of Medicine's Center for Precision Medicine and Genomics.
"If you can maintain private insurance, you're likely to have more access to the various services and devices that are helpful," she said.
Like hearing aids.
An Easy Solution That's Out of Reach
For those who need hearing aids, it helps to have a money cushion. Medicare doesn't cover them, and private insurance doesn't always take care of the total cost, which can be thousands of dollars.
While the Food and Drug Administration is expected to approve over-the-counter hearing aids later this year, those will likely cost "a few hundred bucks," said Next Avenue's 2021 Influencer in Aging Justin Golub, an ear, nose, and throat doctor and Columbia University professor. The cost could keep them out of reach for much of the population.
But cost is only one reason hearing aids are not being as widely used as they could be, Golub said in an interview. "The barriers to treating hearing in older adults specifically are multifactorial," he said, noting that there's a general lack of awareness, even apathy, among older people, their families and their doctors.
"Sometimes when a condition's too common, it becomes a detriment to treatment."
"Society has sort of accepted that hearing loss in older adults is inevitable and it's not a big enough problem to be worth treating," Golub said. "I think that's now starting to change" with a growing number of studies showing it leads to "worse problems," he said.
Golub was an author of a March paper that found a "glaring" discrepancy between treatment of mild to moderate hearing loss in older adults compared with children.
Adults were treated at rates four to five times lower than children, although the effects of even mild hearing loss in older adults has been linked to cognitive decline, the study found. Evidence, the authors said, "no longer supports the assumption that mild [hearing loss] is innocuous in adults."
"We do a much better job of getting hearing aids on kids who need them than we do on adults who need them," Golub said. "That just seems profoundly wrong."
"We do have some treatments, but we do a terrible job of delivering them," Golub said. "If the goal is for people to receive and benefit from the care, that does not happen on a societal or public health level."
"We need to recognize that while everyone does get a hearing loss, we shouldn't just accept it as normal," Golub said. "Sometimes when a condition's too common, it becomes a detriment to treatment. We don't work on things that are normalized."
The Other Big 'Ism'
Ageism is a factor, according to Golub and others. "I think there's just a tendency to give up on older people and just not care quite as much because it's just the inevitable pathway of life that things sort of fall apart," Golub said. "To a degree, you have to accept things slowing down and not working, but if there is a readily available treatment and you don't pursue it, it seems unfair."
"For people with disabilities, the conditions become more complex and more complicated as they grow older because of a lack of access."
"We also need more awareness across medicine," said Golub. A primary care physician, "the quarterback for health care," is often in a position to bring up the issue, but that doesn't always happen, he said. Hearing loss "needs to become on the radar of all primary care physicians for patients over 60."
Barbara Kelley, executive director of the Hearing Loss Association of America, agreed. "There really is no such thing as small hearing loss," she said. "Hearing loss affects different people in different ways. It's insidious. It creeps in."
"We know that people wait about five years from the time they learn they have hearing loss until the time they do something about it," Kelley explained. "Our priority is driving people to action."
Physicians often dismiss patients' complaints about hearing loss as "part of aging," said Kelley, who noted a friend's doctor used the term "age-appropriate hearing loss."
Beyond Hearing Loss
Inaction on health issues in older people goes beyond hearing aids. "A lot of people with disabilities are on Medicare or Medicaid," which often don't cover expensive treatments for a range of conditions, Columbia's Sabatello said.
"The prevalence of disabilities is proportionally high among marginalized populations," she said. Add age to that mix and there's an even bigger portion of the population that can't access services or devices that could help them in their daily lives, Sabatello added.
Take the link between diabetes and blindness. Diabetes can worsen vision problems, and "we know that certain populations are less likely to have access to treatments that can save their sight," Sabatello said. "For people with disabilities, the conditions become more complex and more complicated as they grow older because of a lack of access."
"We know there are biases against marginalized racial and ethnic communities, and also ageism," Sabatello said. "The more you add all those 'isms' — ableism, racism, ageism — the conversations that need to be taking place about what services are available changes and the ability to access those services reduces. A lot of these intersect."
Sabatello added, "Attitudes towards the elderly are kind of funny, because we're all going to get there, but we always somehow think it doesn't get to us. The same with disabilities: Most of us will have disabilities one day, if we don't already have them."
Marsha Russell, 80, has been deaf since she was 23. Though the Americans With Disabilities Act was passed more than 30 years ago, discrimination persists, she said in an interview conducted via text message. It took 23 years for her town to provide closed captioning for its meetings, and when it finally added them, "that corner of the auditorium was filled," she said.
Crashing Through the Safety Net
"Poverty creates its own disability," said Russell, a former board member of the Littleton, Massachusetts Council on Aging and the town's Commission for Disability. "All programs at our Council on Aging have more than doubled in cost to those who participate."
While financial aid is available, people must ask for it, and that can be "dehumanizing," she said.
"I can only hope that we're going to create a system where health care is provided freely and equally to everyone," Sabatello said. Incremental, privately funded programs that benefit a small population are helping to create a "tiered" health care system, and don't provide options for everyone.
There's also a "lack of knowledge and understanding among medical administrators and health care providers about the needs of people with disabilities."
"If we're continuing to pretend we can just put a bandage on rather than provide more holistic solutions, it will not work, except for a very, very small minority who have the financial means for it," she said.
Health care systems are "already overworked and overburdened," Sabatello said, "but ideally, there will be social supports within health care institutions who can provide information about where services and medical devices can be obtained."
That's where societal change comes in.
The National Academies' roadmap report notes that age is the greatest risk factor for developing chronic conditions. Delaying the onset of these conditions involves addressing "social determinants of health" — such as early childhood development — across the population, according to the report.
Societies, it says, need to transform their health, education and social systems to meet the challenge of a growing population with disabilities.
"There is no perfect system that I am aware of, but when services are centralized and interdisciplinary teams of clinicians are involved in providing care, then the needs of individuals with disabilities are better addressed," said Sabatello.
While funding may be a reason these patients don't always have access to the best care, there's also a "lack of knowledge and understanding among medical administrators and health care providers about the needs of people with disabilities," she said.
Moreover, "there are common biases about low quality of life and lack of competency of people with disabilities, especially those with complex conditions," Sabatello said. "So there is a need to address structural issues as well as personal interactions and approaches to providing care to this population."
Take Matters Into Your Own Hands
Below are links to additional resources related to this story.
- Assistive Technology | ACL Administration for Community Living
- National Adult Day Services Association (nadsa.org)
- Aging in Place: Growing Older at Home | National Institute on Aging (nih.gov)
- State Councils on Developmental Disabilities | ACL Administration for Community Living
- Hiring In-Home Help - Family Caregiver Alliance
- Checklist for Online Adult Disability Application (ssa.gov)