MAMARONECK, N.Y. — On an early afternoon in this Westchester County town, the Wagner House is full of life. Some residents have gathered in the living room to watch television. Others are learning how to knit. The sound of laughter can be heard coming from the kitchen.

The Wagner House opened in 2003 on Wagner Avenue after a few local families approached YAI, a nonprofit agency that serves people with disabilities, to create a group home to support their children. Since then, the house has become a safe haven for its eight residents, all people with developmental disabilities.

And they’re not alone. Ten direct support professionals (DSPs) from YAI help them with tasks like cooking, cleaning, coaching, budgeting and providing transportation or emotional support.

But caring for people with disabilities is intense work, and coupled with low wages, many workers are quitting their jobs at the Wagner House, which has been understaffed for at least five years, said Maria Cuneo, the facility’s DSP supervisor. As a result, workers are stretched thin. And while they all love to work at the Wagner House, most tend to stay less than two years because they can’t make ends meet, which has devastating effects on the residents who grow to love them like family, Cuneo said.

One of those residents is Colleen Victory, 47, who has Down syndrome. She works full-time doing clerical work for the Westchester Board of Legislators, a job she’s had for 20 years. Victory shares a room with Nadia Menoscal, 28, who moved from Ecuador to New York with her parents at 14. Nearby is Natalie Rose Chiocco, 51, one of the first residents of the Wagner House. Chiocco has formed long-lasting friendships during her 20 years at the Wagner House, including with Menoscal, whom she considers a sister.

While the residents at Wagner House are quite independent, it is an exception, said Tracy Behling, one of the DSP supervisors there. Other YAI-owned homes across New York require more staff to assist residents who need 24/7 care for getting in and out of bed, eating or tube feeding, toileting, showering and staying on top of medications.

“It’s hard on you physically, it’s hard on you mentally,” Behling said. “I wouldn’t do it for minimum wage. No way.”

Struggling to find care workers

In New York, there are multiple categories of care workers who help people with intellectual and developmental disabilities. Broadly speaking, all work to maintain a vulnerable person’s quality of life, but there are some differences in the nature and structure of their work.

Home care workers — including home health aides, personal care aides and certified nursing assistants — provide health care and nursing services to patients in their homes.

By contrast, direct support professionals, like those at the Wagner House, provide a range of services in addition to health care, from trainings to employment assistance and emotional support to help their clients lead independent and self-directed lives.

The other distinction has to do with the way they’re funded. While DSPs and home care workers are paid through the state’s Medicaid program, they receive funding through different state offices. DSPs are paid through the state Office for People with Developmental Disabilities, while home care workers primarily operate under the Public Health Law and are certified through the state Department of Health, which pays them via Medicaid.

Another similarity, care workers and advocates say, is the low wages they’re paid. In New York, workers and advocates are now converging to demand higher wages in light of what they call the worst workforce shortage they’ve experienced in years.

The work that DSPs and home care workers do is similarly difficult and underpaid, said Scott Karolidis, YAI’s director of government relations. “It’s increasingly impossible to find people to work these jobs because it’s difficult, and it pays poorly,” he said. “I wouldn’t want to do that either. So the crises are extremely similar.”

Forty percent of New York’s direct care workers live in or near poverty and 50% rely on public assistance, according to research by PHI, a nonprofit that works to improve long-term care for the elderly and people with disabilities. The underfunding disproportionately affects women and people of color, who make up the majority of direct care workers.

“You figure after you do 40 hours for $16.20, and then taxes coming out of that, and then it’s me and my granddaughter that live at my house. … I gotta pay rent. I gotta buy food, car insurance. Sometimes I don’t even really have money to grocery shop,” said Joy Kinch, who is based in Ulster County and has been a home care worker for 27 years.

The situation has brought Kinch to apply for food stamps, but she was denied because she makes “a couple dollars too much,” she said.

Kinch said that as of early March, there were more than 500 available cases in Yonkers, the Hudson Valley and as far north as Albany that her agency could not fill with home care aides.

“We don’t get enough to survive,” said Kinch, who works five days a week and tries to supplement her income by cleaning homes on the weekends. “And that’s why there is such a shortage of aides.”

No single state agency appears to track the total number of home care patients in New York. The state Department of Health, which administers a Medicaid home care program, did not provide information requested by the Times Union about how many New Yorkers are waiting to receive home care.

Approximately 11,000 older New Yorkers receive non-Medicaid personal care services through state Office for the Aging programs, including in-home services. According to the most recent data provided by the Office for the Aging, some 3,500 people are on waitlists for those services. Separately, there were approximately 5,500 people awaiting residential placement in group care facilities last year, according to OPWDD.

In 2021, about 74% of New Yorkers who need home care workers couldn’t retain them, according to a study authored by the Consumer Directed Personal Assistance Association of New York State.

As New York’s elderly population continues to grow with people living longer and preferring to age in the comfort of their homes instead of nursing homes in the wake of the COVID-19 pandemic, the demand for home care workers will increase and worsen the current home worker shortage, said Ilana Berger co-director of the New York Caring Majority, a coalition of home care workers, family caregivers, people with disabilities and older New Yorkers.

The pandemic exacerbated the situation, she said, leaving many with disabilities and aging New Yorkers in vulnerable situations: sleeping on wheelchairs, going without eating or showering, relying on unpaid family caregivers or staying in hospitals and nursing homes.

“I love helping people. I understand the money is very low, but you know, it’s not these clients’ fault. They need help,” Kinch said. She added: “It is just not fair. … if it wasn’t for us, where the heck would these clients be?”

Keeping loved ones who need care at home is also important to many families who want to avoid institutional care.

One of those families is the Volzes. Andrew Volz’s biggest fear is finding his 100-year-old mother, Diane “Dee” Volz, on the ground, unable to get up after falling with nobody to help in her Peekskill apartment. The last time it happened was a year and a half ago, but he worries about what would happen if Dee fell again before he can hire another home care worker.

Volz, who now gets paid to care for his mother, moved back from California in 2018 after she was hospitalized. He and another home care worker split the time to care for Dee, working 12 hours a day, four and three days a week, respectively. But it’s not enough, Volz said. He needs another worker, but the low wages have made it hard to find one.

After Dee got out of rehabilitation in the spring of 2018, the last time she was hospitalized, Volz said he noticed a clear improvement in his mother’s health and mood.

“To be at home with a caregiver, to have that contact, is so vital,” Volz said. “The dignity of being in your home — there’s a certain sense of peace that comes with it.”

The budget fight

In New York, home care workers paid through Medicaid make $17 per hour in New York City and Nassau, Suffolk and Westchester counties, and $15.20 per hour in the rest of the state. Those wages are part of a $3 hourly increase above the minimum wage that was included in last year’s state budget, to be rolled out over a two-year period: The first $2 last October and the remaining $1 later this year. Previously, home care workers made $15 per hour in the New York City region and $13.20 in the rest of the state.

But Gov. Kathy Hochul’s 2023 executive budget proposal, released Feb. 1, decouples home care workers’ wages from the minimum wage. Under the governor’s proposal, home care workers’ wages will still increase by $1 in October, bringing them $3 above the minimum wage. But at that point, they will freeze until the minimum wage catches up. According to the governor’s office, those workers won’t be eligible for further wage increases until the statewide minimum wage exceeds their existing pay rate.

DSPs working with people with intellectual and developmental disabilities are also calling for higher wages. On average, DSPs make either minimum wage or close to it, YAI’s Karolidis said. Last year, a 5.4% cost-of-living increase allowed agencies like YAI to boost wages for DSPs, in contrast with this year’s budget proposal, which included a 2.5% cost-of-living increase. YAI and other advocates are pushing for an 8.5% increase.

The Assembly and Senate proposals, issued in March, include an 8.5% increase to care workers’ existing pay, which would cost $487 million. Additionally, the Senate proposal also calls for a $2 wage hike for home care workers. Both proposals restore indexing the home care wage to the minimum wage.

Advocates say that Hochul’s move to separate home care wages from the minimum wage means that the grueling work of home care will go back to being a minimum-wage job as the state’s minimum wage increases — putting them right back in the scenario they’ve been fighting to change.

“It’s very intense work, and it should be paid as such,” Berger said. “There are many, many people who do this work because they love it, but they also need to pay their bills.”

Berger said a more permanent adjusted wage increase would ultimately attract more workers to the industry, addressing the increasing demand for home care aides.

“We have numbers that say that New York by 2028 may have as many as a million job openings in home care,” she said. “We have to attract people to this workforce, so you’ve got to have a competitive advantage wage-wise.”

A legislative fix?

The solution that advocates have proposed is the “Fair Pay for Home Care” bill, which would index home care workers’ minimum wage to 150% above minimum wage — around $22.50 an hour upstate — and ensure that private insurance companies that manage the funding reimburse agencies for wages for aides working with seniors and people with physical disabilities.

Private insurance doesn’t equally affect people with developmental disabilities or those who care for them, because they receive funds from the Office for People with Developmental Disabilities, while home care aides who take care of seniors and people with physical disabilities are paid through agencies and private insurance companies.

Some critics of Fair Pay for Home Care argue the bill relies on overestimated saving costs and an exaggerated view of New York’s home care workforce and doesn’t take into account other ripple effects on the economy.

The Empire Center, a fiscally conservative think tank, said the bill would be too expensive and have unintended consequences for other health care workers who don’t receive additional sources of revenue, as well as for private employers, who would be pressured to raise wages, potentially pushing them out of business and raising prices for consumers.

Ultimately, advocates say New York’s ability to increase wages for home care workers and meet the growing demand for jobs will be the difference in whether seniors and New Yorkers with disabilities receive the care they need in the coming decades.

For many people with disabilities, home care workers are all they have, Kinch said. During the snowstorm that hit the region in March, Kinch called her agency because she didn’t want to drive in hazardous road conditions. Later, while eating breakfast in her Kingston home, she got a call from the agency because they couldn’t find any aides to take care of her patient.

“Nobody. She had nobody. And I felt so bad,” Kinch said. “So I stopped eating, stopped drinking my coffee because I said, ‘I can’t do this. Why am I here eating and drinking coffee, and my lady’s in bed and can’t get up? I can’t do this.'”

Despite the low pay and the challenging work, Kinch said she loves taking care of people and has become attached to the patient she calls “lady,” whom she’s been helping since last August.

“I don’t want her left alone. It’s not fair,” Kinch said. “I know sometimes I say to the agency, ‘No, I can’t do it because I am tired.’ I don’t want to be burned out where I can’t go to work at all. But I hate to say no, because, you know, people need us.”

© 2023 Times Union
Distributed by Tribune Content Agency, LLC

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.