For four years, Teresa Brancato has helped hoist her husband onto a lift so he can use the bathroom, even though he's 10 inches taller and outweighs her by more than 100 pounds.
Joe Brancato, 76, had a stroke in 2011 and has since used a wheelchair. The former electronics engineer has global aphasia, meaning his language skills have diminished to a handful of words.
He’ll say “yes.” He’ll watch TV and shout “score!” whenever the Buffalo Sabres score a goal, said Brancato, 73, who retired from a school administrative job in Buffalo in 2015 to care for her husband.
Social Security benefits cover the $1,500 a month the couple spends on home health aides. Medicare doesn’t cover these services.
Round-the-clock caregiving also means Brancato's health problems are a secondary concern to her those of her husband.
“It’s hard. It’s breaking us down, but we’re hanging on,” she said.
To lighten her monthly caregiving expenses, Brancato applied for a voucher from a program serving families like hers across New York state.
Resources for caregivers in NY
NY Connects: This statewide resource directory helps people search for local services by zip code or service. Visit nyconnects.ny.gov or call the helpline at 800-342-9871.
Evidence-Based Caregiver Education and Training Portal: This state service offers free education and training for any caregiver in New York who creates an account at newyork-caregivers.com.
ARCHANGELS: Its Caregiver Intensity Index Platform at archangels.me/for-caregivers helps caregivers understand their roles and lists free resources depending on their needs.
The New York State Caregiving & Respite Coalition supports family caregivers through training, education and access to respite resources. It also offers reimbursement up to $600 for respite care, aiming to provide financial relief and a break for some of the 4.1 million family caregivers statewide.
New York’s unpaid caregivers accrue 2.68 billion hours of uncompensated care each year, according to health officials. Throughout the nation, family caregivers spent more than $7,000 in out-of-pocket expenses in 2021, an AARP survey found.
Many family members caring for ailing relatives struggle to find professional help because of the shortage of direct care workers, who often earn low wages. The scarcity of paid workers means caregivers often have to rely on family or friends to assist with feeding, bathing or scheduling of doctor’s appointments.
Respite care can reduce caregiver stress, yet it’s often underused, according to a 2020 report from AARP and the National Alliance for Caregiving. Family caregivers face barriers to access respite care, including a lack of affordability, language or cultural differences and restrictive program design.
Across the country, federal funds that boosted during the COVID-19 pandemic also have shrunk, dealing a blow to caregiver programs. Some states have scaled back their paid caregiver programs, while others have tightened eligibility criteria. The loss of money could impede the efforts of a national strategy released in 2022 to support family caregivers.
Indiana recently announced plans to end its paid caregiver program because of a nearly $1 billion shortfall in the state’s Medicaid budget. In Ohio, caregivers can receive up to 40 hours of pay but must prove they can’t hire an aide. Some local agency caregiver voucher programs remain active, although eligibility requirements vary and may provide only temporary relief in the absence of a long-term support system.
How vouchers work in New York
The voucher program provides up to $600 to offset the cost of at-home care, so unpaid caregivers can leave a loved one with a paid home aide and slip away to address their own needs. The New York State Office for the Aging administers related grants through the nonprofit National Family Caregiver Support Program, which in New York is housed at Lifespan of Greater Rochester.
“This moment in time is a really difficult time for caregivers, because they're trying to navigate the health care system that has so many problems and issues,” said Rebecca Hyde, coordinator of the the voucher program.
Established in 2022, the vouchers are available statewide and support caregivers across the spectrum, such as kinship caregivers, grandparents, extended family members or unrelated adults who care for children and people with long-term chronic conditions. Eligible kinship caregivers could receive additional funding.
“We're looking for people sort of slipping through the cracks,” Hyde said.
To apply for a voucher, caregivers can request a paper application, which will be sent to them, or download one, in both cases online under the Caregiver Resources tab at nyscrc.org, email rhyde@lifespan-roch.org or call 585-287-6391. Applicants cannot be participating in another program that offers respite care. They must also obtain a referral from a health care professional. If approved, caregivers must track the respite care hours used.
The median hourly rate of a home health aide last year in New York was $35 an hour. Based on this figure, the coalition’s $600 voucher could cover 17 hours of care.
To date, the program has supported about 460 caregivers in New York, and the coalition has awarded more than $350,000 in vouchers.
‘It’s my choice’
Vouchers are generally available for those who request one for the first time, but families shouldn’t see this as a recurring source of funds. If funds remain, the coalition may offer a second voucher for caregivers who’ve already received one.
The program aims to fill a critical resource gap. Some caregivers are on waiting lists for Medicaid, the federal health insurance program for people with low incomes. Similar to a Michigan voucher program, the New York program allows caregivers to choose who they want to hire.
“It's really reassuring for them to be able to hire someone they know and trust,” Hyde said.
While her husband clung to life at a Buffalo hospital, Brancato swiftly became a researcher on strokes. After he was discharged, she scrambled to put together a care regimen.
“You have to find out on your own,” she said. “Nobody tells you what to do.”
She found the voucher program online. Once accepted, she used the money to pay for home health aides, insisting on finding assistance for her husband inside the place he knows best.
Medicare could have covered a temporary stay at a nursing home, but that wasn’t an attractive option for Joe Brancato. He can’t string sentences together, and nurses wouldn’t be able to communicate with him like his wife can, she said.
Peggy Gianadda, a 58-year-old caregiver in Kenmore, Erie County, had an urgent desire for a break, although she doesn’t think of her labor as burdensome. She wouldn’t have it any other way.
“I’m not complaining. It’s my choice,” she said.
Gianadda cares for her mother, Anne, who has dementia. She prepares meals, distributes medications and gives showers, tasks that became so time-consuming she’d cancel dinner dates with friends and recreational activities.
The management of her mother’s care was one of the levers that pushed Gianadda to retire from her job managing food service equipment for Buffalo Public Schools.
She learned about the voucher program through a social worker at Erie County Senior Services. She hired a family member to assume some of her responsibilities and proceeded to get a massage, complete a shopping trip and exercise during her newly minted free time.
The voucher “helped immensely," she said. "When someone gives you a break, you come home feeling very refreshed."
This story was produced through the New York & Michigan Solutions Journalism Collaborative's ongoing occasional series, Invisible Army: Caregivers on the Front Lines. The collaborative is a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The group is supported by the Solutions Journalism Network. Read related stories free at nymisojo.com. The collaborative also has compiled a detailed Caregiving Resource Guide with links to online information about various issues of interest to caregivers.