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How $400 billion elder care plan could impact WNY’s unpaid caregivers, home care aides

Unpaid family caregivers
Tom Dinki
(From left) Oveta Walker, Carol Dozier and Neldria Staton provide unpaid caregiving to their friend, Barbara Ann, who has Alzheimer's disease and is ineligible for Medicaid-covered home care services.

Seventy-three-year-old Barbara Ann of Buffalo lives with Alzheimer’s disease. Her caregiving is done by some of the people who know her best: her three long-time friends who all take on different roles.

Oveta Walker has Barbara Ann live with her at her home, Neldria Staton drives her to an adult day care program a couple times a week, while Carol Dozer is described as their quarterback, assigning everyone’s roles and managing finances.

“The things that you were good at, then that become your role,” Staton said.

It’s estimated New York state has 2.5 million family caregivers who provide 2.1 billion hours of unpaid care, worth $31 billion, to their parents, spouses, partners and friends.

Barbara Ann’s friends, who asked that Barbara Ann’s last name be withheld from this story for privacy reasons, take care of her because they think of her as a sister. They also do it because Barbara Ann can’t get professional aides to take care of her at home.

Most private insurance doesn’t cover home care. The federal Medicaid program does, but Barbara Ann’s pension and Social Security, while not large, according to her friends, leaves her too far above the poverty level to qualify.

Walker said they’re getting by as best they can, relying on organizations like the Alzheimer’s Association for advice, but it’s piecemeal.

“We don't know exactly what we're doing. We're going on a day-to-day basis,” she said. “How do I get those answers? How do I get that help? And that is what we need.”

Help could come in the form of a $400 billion elder care proposal, originally included in President Joe Biden’s American Jobs Plan and introduced as the Better Care Better Jobs Act by Congressional Democrats. It would expand Medicaid coverage for home and community-based services, also known as HCBS, as well as increase the home care aide workforce.

That could be big for a city like Buffalo, where, according to New York City think tank Center for an Urban Future, one in five older adults live in poverty. Plus, over 18,000 people in Erie and Niagara counties already receive some kind of HCBS, according to the New York State Department of Health.

“I think that Buffalo is well positioned to disproportionately benefit from this $400 billion,” said Congressman Brian Higgins, D-Buffalo.

Brian Higgins
Tom Dinki
Congressman Brian Higgins, seen here speaking Aug. 13, 2021, about funding for vaccine outreach, is a supporter of the $400 billion elder care proposal.

Higgins is disappointed the elder care plan wasn’t included in the Senate’s recent $1 trillion bipartisan infrastructure deal. House Democrats say they won’t vote on it without a budget bill that addresses human infrastructure, including elder care.

Higgins said he’s hopeful the money can be found during budget reconciliation.

“I think what the so-called bipartisan Senate group tried to do was parse out what is traditional infrastructure of roads, bridges and the like, and not the human infrastructure piece. But the human infrastructure piece is very, very important,” he added. “So one way or another, Congress, I think, has a moral responsibility to try to restore this funding.”

Karen Nicholson agrees. She’s CEO of the Center for Elder Law and Justice, a Buffalo non-profit legal firm that assists low-income older adults. It also runs a pooled trust that helps over 1,000 Western New York older adults protect their assets while still qualifying for Medicaid services.

“Medicaid is really the only option for long-term care of any kind, particularly in homecare situations, so this was the only way that advocates could see to utilize the systems in place to get home care,” she said.

The Medicaid system, according to Nicholson, needs an overhaul.

“There isn't that system in place to provide long-term care for people either in their homes or in nursing homes other than through [the Medicaid program)], and that program was not designed for the huge numbers of baby boomers that we're now seeing,” she said.

Center for Elder Law and Justice and other older adult advocates
Tom Dinki
The Center for Elder Law and Justice and other older adult advocates gather on the steps of the Erie County Hall June 15, 2021 to mark World Elder Abuse Awareness Day. The center is for expanding Medicaid coverage.

“This is definitely a Western New York problem. This is a New York State problem. This is a United States problem.”

Even if more people qualified for Medicaid to get home care, there’s simply not enough home care aides nationwide, especially since the COVID-19 pandemic.

The number of home care jobs in the U.S. fell 3%, about 110,000 jobs, from the start of the pandemic to December 2020, according to a report by PHI, a care advocacy group.

“We are pretty much in DEFCON 5 crisis mode, but no one wants to talk about it,” said Roxanne Sorensen, owner of Eldercare Solutions of Western New York, a Buffalo-based agency that connects clients with home care services.

She said she has struggled to get aides to home care clients in Buffalo and its surrounding suburbs. It’s even more difficult in rural areas.

"I've been trying for a month to find an aide to go into Alden. I don't have anybody,” she said. “I've called 20 home care agencies — they have no staff to go into Alden.”

The crisis has gotten the attention of the New York State Legislature. Last month, it held a joint public hearing on the long-term care workforce.

Much of it focused on low pay. Home care aides on average make $12 an hour and almost one in five live in poverty. Data from the U.S. Bureau of Labor Statistics shows home aides in the Buffalo-Niagara region make just $28,000 dollars a year.

A Rochester home aide who testified during the hearing, Jason Brooks, said he’s often struggled to get more hours, and even get paid for the hours that he does work. All of the home care jobs he’s had since joining the field six years ago were non-union jobs.

Home care aide Jason Brooks
New York State Senate
Jason Brooks, a home care aide in Rochester, testifies before the New York State Senate during a joint public hearing July 27, 2021.

“We're human beings, taking care of human beings,” he said. “We need to take care of ourselves in order to take care of others.”

Biden’s elder care plan calls for improving aides’ wages and benefits, and making it easier for them to organize or join an existing union. That could attract more people to the home care field. There’s also some evidence that better pay for home aides translates to better outcomes for their patients.

“There's a lot of really good, caring people who probably start out in this profession because they want to give back and they want to do some good, but they can't do it on minimum wage,” Nicholson said.

As for Barbarba Ann’s care team, they’d like to see an expansion of services. Barbara Ann’s adult day care program is an example of an HCBS often covered by Medicaid, but it’s in Niagara County about 20 miles away from Buffalo.

Dozier, one of Barbara Ann’s caregivers, said there should be more HCBS in her own neighborhood. She notes Black Americans are anywhere from 14 to 100% more at risk for dementia.

“And if it overly impacts the Black community, surely, those programs should be in the Black community,” she said.

Dozier said she and the rest of the care team understand Barbara Ann will eventually need to move into a long-term care facility. They hope any elder plan would also improve facilities, whose issues have been exacerbated by the pandemic.

“Don't make it a place that you don't want to visit, that you don't want to see,” she said. “Those are the things that, if you're going to take $400 billion, that's where you should be used, in my opinion.”

The House’s Progresive Caucus has said it will not support the infrastructure package without a larger, $3.5 trillion budget package that addresses their priorities, including elder care.

Tom Dinki joined WBFO in August 2019 to cover issues affecting older adults.