Thousands of elderly, disabled New Yorkers rely on home care, but there's a worker shortage
TOWN OF NEWBURGH – Long-term partners Kendra Scalia and Brandon Johnson often get just one hot meal and one opportunity to use the bathroom per day.
Scalia, 38, has spinal muscular atrophy and Johnson, 33, has Becker muscular dystrophy. Both qualify for 16-24 hours of state-funded home care per day through Medicaid, but the couple has been unable to find caregivers who will work for New York's $13.20 minimum hourly wage.
Scalia's younger brother is paid through the state's Consumer Directed Personal Assistance Program — which allows individuals to hire family members or friends to provide care — to care for Scalia and Johnson between the hours of 8 p.m. and 12 a.m. But during the day, the couple said, they are often on their own.
“We try our best to kind of set things up for us. I keep out Ziploc baggies of cashews and Cheerios, protein bars, tons of water on my table as you can see,” Scalia said, looking toward her kitchen table where several water bottles sat with loosened caps and straws. “Then in that four-hour period (when her brother is there), it's the bare minimum of what we need … toileting, showering, getting dressed, setting things up, cleaning the house and doing some basic meal prep.”
Because no one is there to help Scalia get up in the morning, she said she spends most nights sleeping upright in her wheelchair.
“I think that is the worst part of it,” she said. As a result of sleeping in her chair, she experiences chronic pain and skin deterioration.
Scalia and Johnson are two of many New Yorkers who qualify for home care but are unable to find enough workers willing to accept minimum wage for what is both physically and emotionally taxing work. This, they said, has created a crisis-level worker shortage with negative consequences for those who rely on home care, for home care workers and the entire health care industry.
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On April 22, the state passed a budget that will increase wages for home care workers by $3 per hour over the next two years. But Scalia, Johnson and others say this isn't enough to attract more workers to the field.
The Fair Pay for Homecare Act
Scalia and Johnson had advocated for a bill called the Fair Pay for Homecare Act, which would have brought home care worker wages up to 150% of the regional minimum wage. In much of the state, that would mean home care workers would get paid as much as $22.50 per hour. But it could have unintended consequences, some say.
Ilana Berger is co-director of Caring Majority, an organization that advocates for legislation to make New York's health care system more equitable. Berger said the crafters of the bill intentionally sought a wage increase that would compensate health care workers for losses of public assistance they may incur under a higher pay rate.
"You'd get (home care workers) off most public benefits, which would save the state hundreds of thousands of dollars," she said, citing a 2020 study by PHI – an organization that advocates for direct care workers and researches the direct care field – which found that 57% of New York's home care workforce relies on public benefits. "If you give money to a low-wage workforce, that money goes right back into local economies."
Becky Preve, executive director of the Association on Aging in New York, said the upcoming wage increase – which will begin with a $2 increase in October – might actually mean some home care workers will lose money.
"If you increase wages slightly, then you really run the risk of hitting a benefit cliff," she said. "The reason that the legislation was so specific about raising it more than a few dollars per hour was to make sure that you would incentivize people to not only go into home care, but also you would pay them enough that it would offset them coming off of SNAP assistance, coming off of Medicaid."
Preve said her organization is concerned some home care workers might quit or reduce their hours as a result of the wage increase in order to remain eligible for public benefits, further exacerbating an existing worker shortage.
Other workers, Preve and Berger said, might leave the industry altogether to pursue jobs in retail and fast food, which pay roughly the same amount or more. As of July 2021, fast-food workers in New York make a minimum of $15 per hour, and once the initial wage increase goes into effect, home care workers will make $15.20 per hour.
While the Fair Pay for Homecare Act would have been a very large investment, a recent CUNY study found that the economic gains would have outweighed the cost, Preve said.
"Not only from getting people off safety net programs so they don't have to depend on SNAP and Medicaid, daycare subsidies, etc., but also the cost savings of actually keeping people out of institutional care settings which are so much more significantly expensive (than home care)," she said.
When elderly or disabled people are unable to find home care, Preve said, they can end up in nursing homes which can cost taxpayers well over $100,000 per year per individual.
A day in the life of a home care worker
Lolli Edinger, 51, first got into home care a few years ago as a way of helping a friend’s grandmother.
“I just fell in love with it," said Edinger, who lives in Olivebridge. "It was the first time I actually felt like I had a purpose, as highfalutin as that sounds, but it really was. It just became something I wanted to continue to do. I built this connection with people by helping them live as independently as they could. It felt like I had a purpose versus just making someone else money.”
In addition to her friend’s grandmother, whom she continues to care for a few times a week, Edinger works for Zach Hilty. He's a 34-year-old man who became paralyzed following a diving accident 11 years ago. In total, Edinger said she works between 50 and 60 hours per week providing her clients with showers and bathroom assistance, cooking meals, dispensing medication, cleaning wounds, driving to medical appointments, and other tasks.
She loves her job, but if she didn't have health care coverage and additional income through her husband's information technology job, Edinger said she'd be unlikely to support herself.
"If I was talking to a single mother or a young person just starting now, I would highly discourage them from going into the job even though they might be excellent at it," she said. "You can't save for a rainy day and you can't save up to buy a car or put any money aside."
According to a 2020 PHI study, the people Edinger said she would discourage from seeking a career in home care are exactly the types of people who end up in these jobs. In 2020, the industry was 91% female, 77% people of color and 60% immigrants. The median income of a home care worker in 2020, according to the study, was $19,200.
State Sen. James Skoufis, D-39, of Cornwall, has supported increasing home care worker wages, and said he wants to continue to fight for higher wages. Skoufis acknowledged that these low wages more than likely impact the number of people choosing to pursue home care as a career.
"They recognize that a full-time, in-home care job alone often won’t help them keep food on the table or put their kids through school, and that’s heartbreaking – especially when you weigh the immense value of that caregiver’s work on the life of someone who is disabled or homebound," he said.
Edinger, Scalia and Johnson all said home care workers not only provide physical support, but emotional and social support as well.
"The people who work with us are more than employees," Scalia said. "They become extended family."
The impact of the home care worker shortage
Brandon Johnson said that when he went into respiratory failure in June 2021, it was directly attributable to his inability to find home care.
“I was only able to have my most basic needs met,” he said of the time leading up to his health crisis. “I was unable to go to medical appointments, and I wasn't able to do the treatments that I needed to do … Normally if I was going to those appointments my doctor would have caught the signs and I would have gotten treatment before ending up in the hospital.”
Scalia, who was home alone with Johnson that night, said she attempted to wake him during the night to alert him that his oxygen levels had dipped dangerously low.
“But he just wouldn't wake up,” she recalled. She didn’t know at the time but Johnson was having seizures. “I was just screaming so loud that my brother heard me from his bedroom in the other apartment and came over. That's when he called 911.”
Following hospital treatment, Johnson moved to the San Francisco Bay Area where his parents could provide the rigorous care he said he should have been able to receive through New York state.
In December 2021, Johnson was able to move back to the town of Newburgh, but he still suffers as a result of that night.
"He lost a lot of muscle so he can't use his arms and his hands any longer," Scalia said. "Now he requires significantly more care, and that's a loss of ability that he'll never regain again."
But even with Johnson's increased need, the couple hasn't had any more luck hiring someone to provide home care.
"Every single person we offered the job to said that they would have to turn it down because of the low pay," Scalia said, noting that up until January home care workers were paid $12.50 per hour.
So most days, Scalia and Johnson are home alone while she struggles to meet both of their needs.
"When he needs to get a drink or eat, or if he needs to turn his ventilator on or put the mouthpiece closer so he can breathe, I'm the one struggling to complete those tasks for him," she said. "At the same time, I can't really do those things for myself."
And that takes a toll.
"It feels sometimes like I'm not doing enough for him," she said. "I know he needs more care than what I can provide ... I obviously can't do any of the really important things like toileting and dressing and transferring and cooking or cleaning when he has his respiratory treatments."
Watching Scalia try to juggle both of their health, Johnson said, "is really difficult."
For Scalia, having adequate home care would mean being able to spend more time on her work as a health care policy analyst and board president for the Consumer Directed Personal Assistance Association of New York State.
"I could just be his girlfriend," she said. "And for me, that would mean I could sleep in my bed again. I could eat three meals a day, I could go back to work. I can be active in my community once again."
What happens to those who can't find home care workers?
In New York, home care workers are hired through a variety of methods. Through Medicaid and the Office of Aging, individuals receive a case manager who assigns a worker. Through the Medicaid model, eligible individuals have their home care workers paid by the state. The Office of Aging subsidizes home care workers' income for individuals who earn above the Medicaid benchmark.
Some individuals are able to choose their own workers through the Consumer Directed Personal Assistance Program.
Over the next 20 years, said Becky Preve, executive director of the Association on Aging in New York, the state will see a 3% population increase, but a 75% increase in the population over the age of 80.
"And when people get to that age, they often need home care," she said.
If that care isn't available, Preve said, many people may be forced into nursing homes — if space is available.
"People want to age in place. They want to still feel part of a community, and they want to stay in the home that they raised their children in," she said. "They want the independence and the freedom to make their own decisions."
For younger disabled people like Hilty, Edinger said, moving into a nursing home is unthinkable.
"Zach will tell you straight out that if he was in a nursing home he would probably get depressed and just give up on life," she said. "He is a very social person. He likes to be out and he likes to talk to people ... He's such an outgoing person and he likes to go shopping. He likes to walk his dog. He likes to garden and I just can't imagine him in a facility."
Even so, nursing homes are an essential piece of the health care system, Edinger said. These facilities provide advanced care for individuals unable to stay in their homes and those who need short-term rehabilitation. But nursing homes are suffering from an intense worker shortage and are often unable to care for all the individuals in a community who could benefit from their care.
Why does it matter?
"Many of us have parents who are aging or ill or have family members who are disabled," said Ilana Berger, co-director of Caring Majority. "We can all be so hopeful that we will never need home care, but it's nice to know that we have that option if and when we do."
Home care isn't only for the aged. As Becky Preve noted, we are all one accident away from being permanently disabled.
"It could be your mom. It could be your dad. It could be your child. It could be you," Preve said. "Every seven seconds somebody has a life-altering disabling event. It could be any of us."
Erin Nolan is an investigative reporter for the Times Herald-Record and USA Today Network. Reach her at firstname.lastname@example.org.