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The Fight for a Fairer Home Care System

The pandemic created new urgency around efforts to improve conditions for New York State’s beleaguered home care workers.

A rally in Albany last month in support of the Fair Pay for Home Care Act, which would increase the minimum wage for home care workers.
New York Caring Majority
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Ilana Berger left work on a Friday in mid-March thinking that the Fair Pay for Home Care Act was finished. The $4 billion legislation called for raising home care worker wages to 150 percent of regional minimum wage across New York State. As the New York director for Hand in Hand, one of many organizations on the New York Caring Majority steering committee, which has helped lead efforts advocating for the bill, Berger had organized dozens of meetings with state legislators and people impacted by the issue. The median annual earnings for home care workers in New York State is only $22,000, and on average nearly 17 percent of home care jobs were unfilled because of staff shortages in 2018-2019. The labor shortage had real repercussions, including that about 15 percent of patients got delayed care and nearly one-quarter couldn’t access care at all. Berger believes that improving home care worker conditions is also about striving for racial justice and gender equity: In New York State, 72 percent of home care workers are women of color. 

That night, the state Senate and Assembly would be delivering budget proposals, and while Fair Pay for Home Care had gathered huge momentum and support from politicians like Democratic Congressman Jamaal Bowman and state Senator Rachel May, a Democrat from the 53rd district and chair of the Committee on Aging, Berger had been told repeatedly that getting it passed would be a multi-year fight. 

“We were thinking, ‘This is probably it for this year, but we’re ready to come back fighting next year,’” Berger says. 

But that weekend, she got a text message from May’s office that made her hopeful. The Senate budget proposal had included $624 million for Fair Pay for Home Care, a pared-down version of the original bill. State Senate majority leader Andrea Stewart-Cousins had “picked up and championed” the legislation throughout budget negotiations, according to Berger. In the weeks that followed, New York Caring Majority continued meeting with lawmakers and organizing rallies in the Bronx and Albany—anything to “put the pressure on” a scandal-weakened Governor Cuomo to include the bill in the finalized state budget, Berger says. Meanwhile, President Biden had begun discussing care work in the context of roads and bridges, and put $400 billion toward home- and community-based services in his $2 trillion infrastructure plan. 

“We have been waiting forever for this kind of acknowledgement of the essential nature of care work in our society,” says Berger. 

“You’re going to see people leaving their jobs.” 

Ultimately, the prospect of federal spending may have made it easier for state legislators to leave Fair Pay for Home Care out of the finalized budget, according to Berger and other advocates. The bill would have affected tens of thousands of people in the Hudson Valley, home to an estimated 8,000 to 15,000 home care workers. They survive on a median annual income of about $18,400 and an hourly wage of $13—wages that haven’t gone up year to year, despite increases to the state’s minimum wage. Nearly one in four are living below or near the poverty line, and only about one-third receive any benefits at all, usually paid time off. Those who can switch occupations often do: About 5,140 home care workers in the Hudson Valley leave the labor force or the field each year.

At the same time, the regional population is aging, and many people want to stay in their homes rather than enter a nursing home. The Hudson Valley’s 80-and-older cohort is projected to increase by about 55 percent by 2040, compared to about 6 percent growth in the overall population. This is creating a “crisis-level shortage” in the home care workforce and “increasingly forcing people into institutional placements that they don’t want,” says Gregg Beretan, director of advocacy and development at the Center for Disability Rights in Rochester. An estimated 64,000 home care worker job openings will need to be filled in the Hudson Valley between 2016-2026, more than any other occupation during the same period. And several advocates told The River that they expect home care labor shortages to intensify in July, when the minimum wage for fast food workers in New York State is raised to $15 per hour. 

“You’re going to see people leaving their jobs as home care workers because they can get more flipping burgers than they can flipping bodies,” says Beretan. 

A Patchwork System, Propped Up by Women and Family

Zachary Hilty, who is a cervical level V quadriplegic and needs 24-hour care, has been posting job ads regularly in hopes of finding additional home health aides. He relies on the Medicaid-funded Consumer Directed Personal Assistance program (CDPA), which allows people to hire and train their own personal care assistants, often a friend or family member. Applicants used to respond to Hilty’s ads despite the low pay and nonexistent benefits, but “now there’s nothing, no bites at all,” says Lolli Edinger, who has been one of Hilty’s aides for about five years. Edinger earns $12.50 per hour and often works 24-hour shifts, even though she can’t be paid for more than 16 consecutive hours through CDPA. 

“We can’t get the caregivers at Zach’s and I’m not going to let him not have someone there,” Edinger says. 

Edinger was paid about $2 above minimum wage when she first started working for Hilty, but her hourly wage has hardly budged since then. Edinger says she doesn’t blame the agency that issues her paychecks, known as a fiscal intermediary, because “it all comes down to what Medicaid will pay.” According to Edinger, the higher wages of Fair Pay for Home Care would have made it easier for Hilty to hire additional assistants, and she would have been able to take a vacation without “stressing about who’s going to cover” her shifts. It’s hard on Hilty too. According to Edinger, “it’s affecting him emotionally. He’s pretty depressed and I think he feels guilty at times.” 

Their situation illustrates a long-term care system that “tends to pit consumers and workers against each other,” says Allison Cook, state policy manager at PHI in the Bronx, a research and training organization focused on direct care workers. Medicaid has “become a default,” says Cook, but because the pot of money doesn’t grow as more people qualify for coverage, people like Hilty are left with an impossible choice. “You could have more hours of care and the worker has to live in poverty, or you can’t get the care you need, but the worker gets to earn a living,” Cook says. 

Often, the consumers and workers are part of the same family, and the workers go totally unpaid. “Everything would crumble” without those family caregivers, says Magdalena Ornstein-Sloan, a psychology faculty member at Sarah Lawrence College and a public health geographer whose research focuses on family caregivers. Ornstein-Sloan’s mother, who suffered a brain injury 25 years ago, needs round-the-clock care. She receives 40 hours per week through a Medicaid Traumatic Brain Injury Waiver program, and Ornstein-Sloan provides the other 128 hours. Although the family would like to, they can’t use the waiver and CDPA simultaneously, so Ornstein-Sloan is not paid for the work she does. And while she advocated for Fair Pay for Home Care and believes in raising wages for home care workers, “family caregivers are still rendered invisible in the whole process,” she says, despite there being 10 times as many family caregivers as there are domestic workers. Research shows that family members put more hours of labor into the long-term care system than any other part of the system, and most of the hands-on care falls to women. 

“The work of family caregivers needs to be compensated in some way,” Ornstein-Sloan says, whether that’s through wages, health insurance coverage, or social security credits. 

Research Supporting Fair Pay for Home Care

Despite its substantial price tag, the Fair Pay for Home Care Act would have helped the state economically, according to a report published in March by the CUNY School of Labor and Urban Studies. Nursing home care is more expensive than home care, and people who can’t get the care they need at home could end up requiring costlier care in a hospital. Fair Pay for Home Care would have helped fill nearly 20,000 home care job vacancies each year, saving the state money by reducing hospitalizations and nursing home use. Those savings, along with increased tax revenues and the spillover effects from workers’ increased spending, would have “more than offset” the cost of the legislation, CUNY’s report concluded. The researchers also estimated that the bill would have led to nearly 18,000 new jobs in other auxiliary industries. 

Still, there was some opposition to the legislation. The Home Care Association of New York State (HCA), for example, worried that the bill “created a requirement for salary with no clarity on how that was ultimately going to be covered,” says president and CEO Al Cardillo. HCA proposed a separate plan that would have used state funds, including federal COVID-19 relief funds, to make direct payments to all types of providers for wage increases and other worker supports, like child care and transportation. 

“Investing in the workforce does have a return on investment economically and in quality of life in the community and for the workforce. It’s long overdue,” Cardillo says. 

But according to Berger, the Fair Pay for Home Care Act was carefully written to ensure not only that workers would be paid higher wages, but also that providers would be sufficiently funded to cover all of their increased costs. She and others who helped write the legislation did so in close collaboration with several large home care agencies and the New York Association of Health Care Providers, a trade association of home care agencies, which ultimately supported the act. While the original legislation suggested possible funding sources, it didn’t demand any particular source, according to Berger. The state Senate’s version that nearly made it into the budget would have been funded by taxes on the wealthiest New Yorkers. 

For now, New York Caring Majority and other advocates are refocusing their efforts. Biden’s American Rescue Plan includes an estimated additional $1.2 billion for Medicaid-funded home- and community-based care in New York State until March 2022, and Berger wants to make sure that the money goes to workers. She echoed Congressman Bowman’s assertion that, at this moment of multiple traumas—a global pandemic, an economic crisis, and a reckoning around racial justice—“if you invest in home care and put care at the center of our society, you’re dealing with all three.”