Thirty-two-year-old Long Island resident Kathleen Downes, creator of The Squeaky Wheelchair blog, is a licensed social worker who is involved in a host of local and national advocacy efforts.
As someone with quadriplegic multiple sclerosis, she needs help getting in and out of bed, bathing, dressing, doing her hair, and preparing meals. Thankfully, she says, she receives a small amount of help through a New York State Medicaid Program called CDPAP, the Consumer Directed Personal Assistance Program.
“I live with my parents,” Downes told Truthout, “because, even with my diagnosis, the state only authorizes care for 35 hours a week. It’s shameful since I need 24-hour assistance. Right now, my 62-year-old mother is the only person on my payroll. She makes $19.80 an hour and has to rely on my father’s employer health plan because the job does not provide benefits.”
But as inadequate as this is, Downes says the situation may soon get worse: A rule promulgated by the Department of Labor (DOL) in May could decimate the home care industry by removing minimum wage and overtime protections that in-home health care workers like her mom have been entitled to since 2015.
“The DOL rule change reflects a viewpoint that undervalues home health workers and the work they do, but it also reflects an undervaluing of people, like me, who are cared for,” Downes says. “Those lawmakers who support the rules change don’t see our lives as worthwhile, and they seem hellbent on moving us backwards.”
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There are already large shortages in home care because these jobs are so underpaid. In some places, the turnover rate is 80 percent because the quality of the jobs is so poor. These jobs need to provide a living wage to workers, but some of the agencies that hire home health workers line their pockets with Medicaid dollars. This is extremely frustrating for workers who are doing a difficult job.
“The proposed rule comes at a time when demand for home care is expected to rapidly increase due to a growing aging population relying on the industry to receive critical services and support,” staff at the National Employment Law Project wrote in a 12-page letter opposing the proposed change.
Calling the proposal “arbitrary and capricious,” the National Employment Law Project underscored the fact that home care is big business, noting that the industry is expected to grow in value from $107.7 billion in 2025 to $176.3 billion by 2037. At the same time, the organization reports that the work itself remains low-paid, with a quarter of health aides living below the federal poverty line and half receiving Supplemental Nutrition Assistance Program (SNAP) benefits in 2023. What’s more, they write that the current median wage is $16.13 an hour, or $21,889 annually. Worse, the letter adds, wage theft is endemic; in 2024 alone, the DOL collected $735,762 in back wages and damages from five industry employers. This benefited 173 workers who had been denied the pay they’d earned. “Rescinding the 2013 rule would embolden unscrupulous employers to continue to take advantage of workers, underpay them, and result in increased turnover and shortages,” the letter concludes.
Mimi Whittaker, the Frank H.T. Rhodes Law Fellow at the National Employment Law Project, told Truthout that 5,553 comments were submitted to the Department of Labor in response to the proposed rule change. “DOL is supposed to review the comments, carefully consider them, and then issue a final rule,” she said. “In some cases, this can take years, but in this case, we’re guessing the final rule will be issued in a few months.”
Moreover, she adds that the fact that this change was announced following massive cuts to Medicaid and SNAP adds insult to injury.
“This impacts a drastically underpaid workforce that is doing essential work,” Whittaker says. “There are already large shortages in home care because these jobs are so underpaid. In some places, the turnover rate is 80 percent because the quality of the jobs is so poor. These jobs need to provide a living wage to workers, but some of the agencies that hire home health workers line their pockets with Medicaid dollars. This is extremely frustrating for workers who are doing a difficult job and who know that they can make the same money, or more, doing an easier, but less gratifying, job.”
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Read the full story at truthout.org.
