“We are in a crisis and I’m in panic mode,” the woman e-mailed me recently. She was desperately looking for a home care worker for her husband, who has ALS. “I didn’t realize it would be this hard to find help.”
I didn’t either, having dared to hope that things had improved in the home health care sector. In 2018, after a yearlong investigation, I wrote a series for the Globe called Stranger in the House, drawn from my own harrowing experience hiring workers after my husband’s ALS diagnosis. The industry meant to support our frail and aged was in a state of crisis — almost chaos — marked by a lack of regulation and a severe shortage of workers.
Hiring aides through agencies is impossibly expensive for most people — it’s not usually covered by insurance — so many people turn to the unregulated, poorly-trained but more affordable “gray market” of freelance aides which, I discovered, was rife with fraud, neglect, and abuse. Duke University professor Donald H. Taylor Jr. called it “the biggest public policy issue facing our country that no one is talking about.” And MIT professor Paul Osterman, who wrote a book about the long-term care force, told me then that the situation was “an absolute train wreck waiting to happen.”
COVID-19 piled onto that train wreck.
After the pandemic struck, reports on the home-health crisis were filed, rallies held, petitions signed. Federal legislation to improve coverage for home care services was even introduced. Last year, Congress passed the legislation — without the part about home care services.
The dangers of COVID-19 made home care work less attractive to workers, and opened up far less physically and emotionally demanding jobs. “It’s the most high-need consumers struggling the most in finding workers,” says Rebecca Gutman, vice president of home care for Local 1199 of the Service Employees International Union. “Ultimately, people will decide to work for the person who needs a lower level of care.” In March, union members held a rally at Governor Maura Healey’s office, pressing for higher pay, better benefits, and more training.
Without sufficient staffing, home health agencies are turning away vast numbers of patients referred to them by hospitals. The so-called rejection rate was 76 percent in January, according to WellSky, a technology company that serves 130,000 home health care agencies and social service providers. This means hospital patients are waiting longer to be discharged because aides aren’t readily available to provide support.
Meanwhile, the old problems haven’t gone away. Demand for aides has increased as baby boomers are aging, and more seek to age in place. Salaries for caregivers, who are often immigrants from Africa and the Caribbean, haven’t kept pace. The mean annual wage for home health and personal care aides was $14.87 an hour, or $30,930 a year, in May 2022, according to the US Labor Department. The average hourly wage at Walmart is over $2.50 more, for work where the stakes aren’t usually life or death (Massachusetts is a “leader” in pay, which isn’t saying much: personal care attendants funded by MassHealth get $18 an hour).
Families tell me they’re overwhelmed by the Kafkaesque logistical barriers to recruiting workers, the exasperating bureaucracy they must navigate, and the callousness that underlies a broken system.
“The deck is stacked against clients,” says Johanna Crosby, whose ailing 81-year-old husband is a Vietnam War veteran. She says Veterans Affairs assured them he was approved for 28 hours weekly of home health care and later reduced it to 16. “They’ve told me the agencies the VA contracts with have no caregivers available,” she says. “And there’s no mechanism for getting reimbursed if we found someone on our own.” So Crosby’s husband, who was awarded a Purple Heart and a Bronze Star, gets no home care assistance from the VA.
Medicare law authorizes up to 35 hours a week of home health aide services but it’s rarely obtainable, adds Kathleen Holt, associate director of the nonprofit Center for Medicare Advocacy. She says the responsibility for figuring out how to pay agencies to make that happen lies with the federal Centers for Medicare & Medicaid Services. “Home care agencies get a flat payment for 30 days per patient,” she says, and each agency gets to decide which services they will provide — nursing care, physical therapy, speech therapy, or something else. Labor-intensive services like bathing, dressing, and feeding often get left out of the mix. “They may come and do an assessment, but they’ll say they don’t have the staff to provide the services.”
Leah Devereaux Razumny, a 30-year-old school nurse in Bedford, is also living the crisis firsthand. Her husband, Rich, was diagnosed in 2019 with ALS when she was seven months’ pregnant with their second child. He’s now 32 and uses a wheelchair, requires a feeding tube to eat, and can’t shower or dress himself.
Razumny has been looking for a caregiver for 18 months, using online platforms and search tools, but “everything just comes up with nothing,” she says. (“Nothing” includes a worker who disappeared after a week.) And so Leah’s husband stays home alone while she’s at work, worrying about his safety.
In some parts of the world, tending to people who have already lived long lives or need extra care — where most of us land, at some point — is considered honorable, and a virtue. Here, it seems that we try not to dwell on the untidy suffering of others. Surely, we can do better than this.
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Linda can be reached at email@example.com