Somewhere among the small piles of books and medical paperwork that clutter Mable Wilson’s apartment are the most recent handbooks for her Medicare Advantage plan.
She loves reading: her apartment is filled with novels, nonfiction history books, and writings from Black liberation activists. But despite being well-read, “I couldn't tell what is what and what in the Medicare booklet,” said Wilson, whose plan combines both Medicare and Medicaid. “I don't have an MD behind my name so I don't understand what they're saying.”
For Wilson, a resident of Syracuse’s Southside neighborhood, understanding her health insurance is crucial. In 2023, Wilson’s doctor told her she needs hearing aids. She was 73 at the time and losing her hearing from an imbalance of fluid in her inner ears.
“I noticed my ears wasn't hearing right some years ago before the testing, but you don't want to accept it,” Wilson said, a Ziploc bag of her prescription medicine bottles by her feet. Now, at 76, “I got to accept the fact [that] I'm older and my body is changing.”
Three years after the doctor’s recommendation, Wilson still doesn’t have prescription hearing aids, despite her health plan including Medicaid, the public health insurance program that covers hearing aids for impoverished New Yorkers and those with disabilities. The details of her health insurance policy have left her perplexed and searching for answers while she fears what’s coming.
“You hear about a lot of seniors falling and breaking their arm or a hip, and then something happens and later on they might pass,” said Wilson from the safety of her couch. “Honey, I'm scared. I gotta have my hearing aid.”
Stories like hers are part of a larger issue facing Medicaid enrollees in Central New York and more specifically Syracuse, where 41.5 percent of residents were on Medicaid or another form of means-tested public insurance, according to the Onondaga County Community Health Assessment. Widespread confusion over the complexities of Medicaid and Medicare’s policies are a major local barrier to care, local community advocates told WAER.
“Trying to get folks to understand what their different options are, even [with] Medicare is very difficult,” said Leif Frymire, a community programs organizer at the Syracuse Housing Authority. “It doesn't make any sense, and then throw Medicaid on top of that as well.”
Additionally, many local providers can’t accept Medicaid due to the program’s low reimbursement rates, which left Wilson without care even when her doctor referred her to an audiologist.
“I feel whatever appointment I'm going to, I don't know if I'm at the qualified place,” Wilson said. “So I don’t know. I’m in the dark.”
Lost in health bureaucracy
Wilson has spent years lost in the labyrinth-like parameters that make up the American health insurance system. She’s covered by a UnitedHealthCare Medicare Advantage plan, the privatized version of Medicare. Her plan, which she needs for a number of other health issues she has, is for people eligible for both Medicare and Medicaid. In addition to being over 65, Wilson is also low-income and like many Americans can’t afford to pay for medical care out-of-pocket.
When Wilson’s doctor first recommended that she get hearing aids, she said she presumed Medicare covers them, since the public health insurance plan supports people 65 and up. It wasn’t clear to her from reading her annual Medicare handbook that the program doesn’t cover hearing aids.
Her doctor referred her to HearingLife, a local audiology practice. There, she was able to get a hearing test, but claims she was told at the time HearingLife wasn’t prescribing hearing aids.
A spokesperson for HearingLife declined to comment on this story.
Unbeknownst to Wilson, she was facing an issue that impacts thousands of Medicare enrollees across the country. Approximately 90 percent of people with hearing difficulties who are on traditional Medicare go without hearing aids, according to a study by the Journal of the American Medical Association (JAMA).
It gets more complicated for people like Wilson who are on privately-run Medicare Advantage plans, which entice beneficiaries with low premiums and benefits that Medicare doesn’t cover, like hearing aids.
In response to a request from WAER to explain how Mable’s Medicare Advantage plan covers hearing aids, a spokesperson for UnitedHealthCare said via email enrollees should review their plan materials.
“Some plans provide a hearing aid allowance through Medicare Advantage benefits, and Medicaid may cover medically necessary hearing aids and services in accordance with New York Medicaid requirements,” the spokesperson wrote.
Although her plan includes hearing aids, Wilson learned what many Medicaid and Medicare Advantage enrollees come to realize: that coverage doesn’t mean access. The JAMA study found that despite most Medicare Advantage plans covering hearing aids and nearly half suffering from hearing loss, only 2.4 percent of Medicare Advantage enrollees use hearing aids.
“I’m in a medical Catch-22,” Wilson said. She says it feels like the program is working against her when she anticipated it would support her in her old age.
Throughout the Syracuse community, Medicaid confusion has become a major barrier facing older adults, according to Lori Klivak, the director of the Center for Healthy Aging. The project of the community organization Interfaith Works helps older adults throughout Central New York navigate Medicaid, which often supplements what Medicare won’t cover. This includes dentistry, home care and long term care.
Yet the scale of this issue in Central New York’s communities isn’t fully known since it's hard to keep up with the community’s need for Medicaid navigators, according to Lori Klivak, the director of the Center for Healthy Aging at Interfaith Works.
“We see that a lot,” Klivak said of Wilson’s situation. “Even my paid staff who are thinking about these things all the time, they struggle. They struggle with the tools to get people enrolled in Medicaid.”
But what is clear is that navigating the system frequently takes a toll on mental health, according to the center’s assistant manager Jessica Luis. “The thing I see the most is definitely — because the process is so complicated — a lot of anxiety. It's very confusing. For somebody who is at risk, if they do lose their coverage, what's gonna happen?”
For Wilson, spending months on end trying to understand her insurance comes at its own cost.
“Sometimes I get depressed about this situation and getting older,” Wilson said frankly. “I'm not going to lie.”
Who accepts Medicaid?
Since her first attempt to get hearing aids, Wilson has gone years without. As is common with hearing loss, Wilson has trouble balancing, and in lieu of hearing aids uses a four-pronged black cane when she walks to prevent herself from falling.
“I find myself tipping in my house … thank God for my refrigerator,” Wilson joked.
Apart from hearing loss, she has diabetes, needs dentures and has COPD. Compounding her troubles, she lives with bipolar disorder, which she takes prescription medications for.
Over the past few years, these maladies have overwhelmed her ability to keep up with her hearing loss. One night, Wilson recalled, a fire broke out in a nearby apartment and her grandchildren were woken by the alarm. She couldn’t hear it. Although the fire didn’t affect her apartment, she was forced to evacuate the building.
The situation gave Wilson new fears about getting older.
“Every year with the lack of my hearing, I am so — and I'm gonna just be honest — afraid,” Wilson said.
In 2026, three years after her first hearing test, Wilson tried again. Wilson returned to HearingLife, the audiology practice in northern Syracuse. But to her frustration, HearingLife does not accept Medicaid.
Trying to find a provider who accepts Medicaid has become an increasingly common problem in New York, according to Nancy Nielsen, the senior associate dean for health policy at the University of Buffalo’s Jacobs School of Medicine.
“It doesn't do any good to have coverage if you can't find a provider who will accept that coverage,” Nielsen said. “That is a problem everywhere.”
Since Medicaid’s reimbursement rates in New York are significantly lower than that of Medicare and private employer-based health insurance, providers often can’t afford to accept large numbers of Medicaid patients. It creates a situation in which smaller providers are unable to give care to people even if they are insured by Medicaid, Nielsen said.
“The more Medicaid you have, the less you're going to be able to stay in business,” Nielsen said. “The payment is less than it costs to provide the services in many cases.”
Doug Brown, a licensed audiologist of 53 years who runs dB Audiology Associates in Syracuse, said New York’s Medicaid reimbursement for hearing aids are so low that he would lose hundreds of dollars on each patient if he accepted Medicaid.
“If it costs me money to provide the service, why am I here?” said Brown, noting that specialists who run small practices have limited resources and razor-thin margins. “That's why I stopped, because it just became too onerous to go through the process and still end up short.”
Up until about 10 years ago, Brown said, he could afford to accept Medicaid. Now, he gets several calls a week asking if he accepts Medicaid for hearing aids.
During the process of setting up hearing aids, Brown said, multiple appointments are needed to adjust the devices as the patient’s brain learns to process new information. However, the Medicaid reimbursement — as well as many private insurance reimbursements — don’t come close to covering the full cost of getting a patient accustomed to a new hearing aid, Brown said.
“It's frustrating,” said Brown. “There are people making decisions about what I do and what I should be paid and they don't understand.”
An uncertain future
After learning that Hearing Life doesn’t accept Medicaid, Wilson took out the calendar notebook that she uses to keep track of her medical appointments and made a note: “Hearing Life won’t cover Medicaid.”
After repeatedly trying to get professionally fitted prescription hearing aids, Wilson recently went to Walmart and bought over-the-counter hearing aids for $74.
When she put them on, she said, she heard “a high pitched noise” and struggled to set them up. Like her health insurance, the manual for the pair of hearing aids was too confusing for her to understand without a medical professional.
“I don't know if these are really real and safe,” said Wilson, while holding the over-the-counter hearing aids in her hands. “I could’ve spent that $74 dollars on food.”
Wilson still isn’t sure how she’ll get proper hearing aids, and is busy managing her other health issues. She’s also not sure of how she’ll get dentures and new eyeglasses, which she needs. Like hearing aids, Medicare does not cover dentures and eyeglasses, but Medicaid does. If she has to pay out of pocket, Wilson will be on the hook for thousands of dollars she says she doesn’t have.
Looming on the horizon for Wilson and local health advocates are oncoming cuts to Medicaid, which the Trump administration signed into law in July 2025. The most severe of the cuts will take effect in January. Among the cuts is a doubling in the amount of eligibility re-determinations from once every year to once every six months.
Nielsen of the University of Buffalo said this alone will increase the number of uninsured people.
“I worry terribly about the number of people being uninsured,” Nielsen said. “Everybody knows this is going to increase, it’s already increased.”
Wilson finds sanctuary from her health care situation at a community garden she tends in the Pioneer Homes housing complex. Knee deep in the foliage of zucchini plants, Wilson is reminded of her childhood, as gardening has been part of her life since she was a girl.
However, eating fresh fruits and vegetables for her is a challenge: similar to her conundrum with hearing aids, she can't find a provider who will accept Medicaid for the dentures she's needed for years.
“I made a salad for my son and my grandchildren, but I can’t eat it,” Wilson said. “I can’t chew the lettuce.”
In some moments, she said, she feels so overwhelmed that the only thing keeping her going is her faith.
“We need to look out for each other,” said Wilson. “It's like what the Bible says, love thy neighbor as thyself. We have a lot of lacking of that.”
The experience has left her feeling like the medical system has abandoned senior citizens, Black people and the impoverished.
“This is a crisis,” Wilson said. “I don’t care if you’re Black, white, green or yellow. Nobody in this country should be living like this.”
