Story and photos by Weng Cheong, contributing writer

A lack of affordable health coverage has affected many Central New York residents. Here are three profiles of patients and caregivers who shared their stories.

As Medicare fails to provide affordable health coverage, local senior citizens experience health decline

Doras Kelly by Weng Cheong
Samaritan house soup kitchen regular Doras Kelley hasn’t been able to afford a hearing aid device for three years despite having progressive hearing loss that could worsen and lead to deafness if not treated.

On a Saturday afternoon, the Samaritan House soup kitchen welcomed its frequent guests into the dim-lit church hall. Amidst the kitchen noise and chatter, a grey-haired woman sat quietly with her husband and son.

“I’m so sorry I can’t hear very well. Please don’t get upset with me,” she said.

Doras Kelley attends the Samaritan House soup kitchen twice a day, seven days a week with her family. Kelley said her landlord stole her hearing aid, and she has been living without one for three years. The 76-year-old explained that a hearing aid device can cost up to $3,000, and her Medicare insurance plan doesn’t cover her hearing needs. She’s been trying to save up for one, but it’s hard when she has other bills to pay.

“I just want my hearing back,” Kelley said. “It’s getting worse. I will eventually go deaf without the hearing aid.”

Among the five million elderly experiencing food insecurity and hunger in the U.S., a reported 63 percent of seniors are forced to choose between spending their money on food or medicine, according to Feeding America. The U.S. Census Bureau recently predicted baby boomers who were born between 1946 and 1964 reaching ages 65 or older to outnumber the children population by 2035. Despite an increase need for affordable health care, seniors continue to experience negative health impacts as the Trump administration proposed to cut $554 billion worth of Medicare, out-of-pocket prescription drug expenses continue to rise and less seniors are enrolled in SNAP benefit programs to help them with food costs.

Sonya Newman, a former SNAP program coordinator for Food Bank of CNY, said seniors take the hardest hit from government cutbacks. “When you age and get older, many elements come into play,” she said. “You need medication to alleviate the physical pain.” Newman explained many seniors need medication for high blood pressure, diabetes and natural body pain that comes with being old.

“The government makes it seem like they’re helping and making a change, but they’re not,” she said.

Apart from Medicare costs, Joe Yankevich, a resident at Rescue Mission Alliance Crossroads homeless shelter, revealed it’s also been harder to get food stamps. Yankevich lives on the third floor of the shelter with 25 people where 20 residents are over 50-years-old. He explained food stamps are issued by the Department of Social Services, and it takes three to four days to get food stamps. Food stamps are given at a first come first serve basis. Seniors and unemployed persons receive up to $192 a month for food.

“They want you to jump through hurdles for people who can’t eat,” Yankevich said. “They don’t give us enough.”

Alabama native Willie Kelley have been visiting Samaritan House soup kitchen for four months. Arms folded with a cane on his right hand, he sat firmly on the wooden chair. He explained he got a frostbite and had to amputate his big toe three years ago. Since then, he’s experienced pain every day. Kelley had to get off his health insurance because he couldn’t afford it. Despite needing ARB high blood pressure medication that he used to take once a day, the 79-year-old explained he can’t have both warm food and medicine.

As food insecurity puts the elderly at higher health risk, the lack of cheaper drug-prescription coverage for seniors who need it worsens their health conditions. Nevertheless, the elders express chronic pain is still better than being hungry.

“If I had to choose between warm food and medicine, I’d still pick food every time. It’s just what it is,” Kelley said. “I lost a toe already. I’d still pick food.”

CNY seniors struggle to get medical approval for wheelchairs

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Elizabeth McKinney went through three months of physical therapy and now uses a walker after she fell on ice last February. If her knee doesn’t feel better, she might ask her doctor for a wheelchair. 

In February, Elizabeth McKinney tripped and fell on ice while she was walking home in the snow. After what seemed to be three months of useless physical therapy, McKinney decided to seek help from a friend who gave her a walker to alleviate the knee pain.

The Syracuse native might need a wheelchair if her knee doesn’t get better. She said she’d get one from her regular doctor.

“He’d probably prescribe me one,” she said. “How hard can it be?”

McKinney is one of many seniors who doesn’t know that a doctor’s prescription is not enough to get her the wheelchair she possibly needs.

The U.S. Census Bureau reported nearly 40 percent of the 46 million people ages 65 and older have at least one disability. As the increasing population of seniors develop disabilities later in life, there is a rising demand for wheelchairs, scooters and mobility equipment, according to the Census report. Though Medicare insurance states up to 90 percent coverage for medical equipment expenses, medical equipment providers said lack of federal funding and low reimbursement rates affect mobility equipment approval.

“Seniors fall through the cracks,” said director of Access CNY home service Diane Weiermann. “In many cases, older people don’t know what’s available, don’t know what they need, and they’re misinformed.”

Access CNY lends handicapped equipment to seniors and disabled people who either can’t afford or are medically denied mobility equipment. With over 8,000 pieces of equipment, the company offers equipment loans for up to 90 days. Weiermann said she typically encounters 24 to 30 seniors a day who need equipment. She said people can no longer rely on a doctor’s script because insurance reimbursement rates are too low, and it’s getting harder for seniors to get approved for their mobility condition.

Eric Carr, a medical analyst at the NYS Office of Temporary and Disability Assistance, said it is quicker for seniors to get their applications for mobility equipment approved if they are on Social Security.

“For the elderly, it’s easier to qualify their disability because it’s a lot less strict,” he said.

On the contrary, local medical equipment providers explained there are many hoops and documentation needed for prescriptions to pass through insurance companies, making it harder for seniors to receive mobility equipment approval.

August Pennacchia, purchasing inventory coordinator at Nunn’s Home Medical Equipment, said he’s had to deny two out of every five customers from getting wheelchairs because they simply don’t meet qualification standards set by Medicare and Medicaid.

“Someone comes in with a prescription for a wheelchair – that’s the beginning of a long process for us here. It can take months,” he said. “It’s easy getting prescriptions, but people don’t understand how insurance works.”

Seniors need to provide documentation, six months-worth of chart notes, and an extensive description of prior medical records in order for an insurance-covered wheelchair. This process takes at least four months, Pennacchia said.

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Kalia Zell assists her mom Joanne Zell as they attended a Sunday morning church service. While she waits for an electric wheelchair, Joanne explained she can’t go anywhere without her daughter.

Joanne Zell has had multiple sclerosis for nearly 30 years. Whenever Zell attends church or has to run errands, her daughter Kalia picks her up and takes her using a hand-pushed wheelchair.

Three weeks ago, Zell applied for an electric wheelchair through PACE CNY, a nonprofit organization that provides equipment services for the elderly and people with disabilities. Zell doesn’t know when she’s going to hear back from her case manager. Even if she gets approved for the electric wheelchair, Zell might not get to keep it.

“It’s hard when my illness is getting worse, my symptoms are changing, and I need my wheelchair sooner,” she said.

The Syracuse native has to wait for an unknown period of time, go through a round of coordinators and receive wheelchair training in order to be considered for a piece of equipment ranging from $3,000 to $30,000. Zell said a lot of her friends are in the same boat.

“Until I get my wheelchair, I’m completely dependent,” Zell said. “It’s a lot of work for my daughter. She just graduated from SU and she has to take me everywhere. She can’t keep doing this.”

On top of the emotional toll of having a family member with Alzheimer’s, caregivers struggle to pay the bills

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Birdie Korchak Demoski’s father was diagnosed with Alzheimer’s in 2013. Demonski’s family pays $3,000 out-of-pocket each week to provide home care for him. 

It’s been two weeks since Mary Elizabeth Condlin’s mom passed away, and she’s not used to all this free time.

For seven years, Condlin’s life revolved around taking care of her mother Patricia. Each morning at 8 a.m., she carried Patricia out of bed, picked out her clothes and dressed her just in time to spoon feed her breakfast. When Patricia’s aid worker checks in at 2 p.m., Condlin would leave for work. Condlin’s brother took a shift at 6 p.m. everyday. He’d try to get their mom to shower. Some days were easier than others because showering physically exhausted her. When Condlin comes back from work at 8:30 p.m., she’d sleep with one eye opened to make sure her mom doesn’t roam around the house in the middle of the night. Condlin’s mother had Alzheimer’s.

“My mom was a time traveler,” Condlin said. “Some days I was her daughter. Some days it’s 1986 and I wasn’t even born yet.”

The Alzheimer’s Association stated there are 16.1 million unpaid caregivers for seniors with Alzheimer’s or dementia in the U.S., accounting for 18.4 billion hours of care. Despite the amount of families affected by this disease, families face a financial burden as over 41 percent of them earn an income of $50,000 or less and can’t afford a home care facility, according to the CDC.

Keepsake Village at Greenpoint is among the many memory care facilities in Onondaga county. Located at 138 Old Liverpool Road, it houses 57 residents who receive three meals a day and 24- hour supervision. The apartment rooms start at $4,500 a month. Executive director Matthew Lefever said the price is reasonable compared to other facilities.

After realizing she couldn’t afford a care facility program, Condlin moved into her mom’s house and cared for her as much as she could while working just enough as a dance teacher to pay the bills. There were months when she’d run out of money, but she powered through.

“It was either put in the time and hours to care for her or take out a second mortgage,” she said.

Hope Villaluna, ACC Senior Service board member and owner of Lakewood Villa senior facility, said there are many limitations to accessing and admitting seniors into her care facility. Though the care facility accepts Medicare, Medicaid and private insurance, Villaluna has encountered many families who need a room but simply can’t afford it.

“Unpaid caregivers don’t just have to deal with the bills,” she said “They also have to deal with the emotional exhaustion of watching a parent or grandparent lose control of their mind and body. It’s devastating.”

Birdie Korchak Demoski’s father Andrew was diagnosed with Alzheimer’s in 2013. She recalls a hot Sunday morning when she first noticed something was wrong.

“The kids were throwing out a frisbee in the backyard,” she said. “He knew what he wanted to say but he couldn’t get his words out. He didn’t call it a frisbee. He said disk.”

Over the past year, Andrew’s condition worsened. He can’t walk, and he can’t feed himself. He can barely talk or move. Now, he receives 24-hour home care that the family pays $3000 outof-pocket each week. Each month, Demoski and her sisters meet with a financial advisor to figure out how to afford for the care. They recently sold a lake house in Canada to pay the bills.

Demoski said the financial impact adds on to the stress for her family, but that she is lucky her father, a retired owner of an oil company and president of the Boys & Girls club, saved enough funds.

“It’s heartbreaking to know he’s worked so hard all his life just to see him lose everything,” she said.

Demoski recently received a promotion at her job at the Cross Hospital. She hopes that this promotion would help her family afford for her father’s care. She seems optimistic.

“I used to tell people – If I get this promotion, it’d be because of him,” she tearfully said. “He might not know who I am anymore, but I think my dad would be proud of me.”

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