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Family caregivers provide unpaid care for aging Long Islanders, survey finds

The Alzheimer's Association estimates one in eight Long Island seniors has Alzheimer’s disease
Matthias Zomer
The Alzheimer's Association estimates one in eight Long Island seniors has Alzheimer’s disease

The financial burden on families to keep their aging loved ones home and out of nursing homes is mounting. It costs an estimated $7,000 per year or more for families on Long Island to provide adequate care and with the recent executive budget proposals, that strain will likely keep growing, according to AARP New York.

The group for aging New Yorkers is advocating for Gov. Kathy Hochul and state lawmakers to eliminate waiting lists for resources, increase transparency from the state Office for the Aging, and direct financial assistance to unpaid family caregivers.

“Those who take on this commitment do so without much support from the state despite their dedication,” said State Senator Monica Martinez (D-Hauppauge) alongside caregivers and AARP New York leaders on Thursday. “As someone helping loved ones, I know the strain that comes from this act of compassion and understand more must be done to support these individuals.”

The group releases a report based on a fall 2023 telephone survey focused on caregiving and long-term care, which was distributed to Long Island residents over the age of 40 who are the primary caregivers for an aging person.

That survey found that more than 40% of Long Islanders say they are either currently caring for an aging loved one or have in the past. Seventy-seven percent of those respondents said they were emotionally stressed due to responsibilities.

“There is a lot of wear and tear on a caregiver. It’s hard physically, it’s hard emotionally, and it is really hard financially,” said Beth Finkel, the state director at AARP New York

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Finkel said the state would save $237 million in payments from their Medicaid program if lawmakers invested $51 million to address reducing waiting lists and restructure Office for the Aging policies around the needs of families.

“Keeping people in their home is less than $10,000 per year,” Finkel said. “Putting someone in a nursing home in New York State can be anywhere from $140,000 a year and up. That’s what Medicaid pays out for every individual in the nursing home.”

According to the report, 16,000 families are waiting for non-Medicaid home and community-based services, like transportation, home-delivered meals and planned support in the absence of a caregiver. However, the way Hochul’s executive budget proposal is set up, Finkel said these services will be cut.

The report said that not addressing the current waiting list for resources would result in an estimated $177 million in Medicaid costs for nursing homes and $60 million in Medicaid Home Care Services.

“You think that an elderly person who is that fragile can wait around for two years?” Finkel questioned. “Maybe they think they’re going to get rid of the waiting list in a different year but don’t they realize that many of them will end up dying before those two years are up?“

Another recommendation AARP is focused on is funding $15 million towards the Long Term Care Ombudsman Program (LTCOP) — a federal advocacy program run by volunteers that’s aimed at protecting people living in long-term care facilities.

According to the report, only 12% of facilities are visited in person on a weekly basis, meaning that most facilities don’t receive the recommended weekly visits. Finkle said this is due to a lack of volunteers post-COVID.

“We’ve been proposing for a number of years that the Long Term Care Ombudsman Program needs to be professionalized because the United States government recommends that every nursing home in the country gets one visit from an Ombudsman once a week,” Finkle said.

In the survey, 61% of Long Island caregivers say they don’t believe the state government provides enough support for unpaid family caregivers.

One AARP volunteer who’s been perturbed by the lack of oversight in nursing homes is Meryl Manthey, whose mother paid the price prior to Manthey and her family's intervention.

“My two sisters and I would pop in on my mom to make sure that everything was going okay. Thankfully we did,” Manthey said. “She was denied a shower because it wasn’t the right time of day, they had a catheter in her for so long that she was just short of getting an infection and she had to be hospitalized because she was dehydrated. This is unacceptable.”

Manthey said they ended up hiring a private aid to watch over her while she was at the facility.

Sara McGiff is a news intern at WSHU for the fall of 2023.