Millions of high-needs home care patients and their low-wage caregivers face enormous risks as the coronavirus crisis reveals deep gaps in government oversight and resources for this often-overlooked branch of the health system.
While institutions like hospitals and nursing homes are still struggling to get enough testing and personal protective equipment, the problem is far worse for home care, which is spread out and behind closed doors. Some elderly and disabled patients are going without care as they turn away their aides for fear of catching the virus — or their aides refuse to venture out to work. And the sector has been left out of recent Trump administration efforts to distribute more equipment and testing to the health industry.
“We’ve been begging the federal government to get them protective gear and testing, but it just hasn’t come,” said Katie Smith Sloan, president and CEO of LeadingAge, which represents thousands of nonprofit elder care agencies and providers. “It’s a real shame, because lives have been lost.”
The crisis is exacerbating the home care shortages that existed even before the pandemic, creating long waits for families trying to keep their elderly or disabled relatives out of hospitals filled with Covid-19 patients or now-hazardous nursing homes.
A survey of more than 1,000 home health agencies in all 50 states by the National Association for Home Care and Hospice found that more than half had laid off staff — and 96 percent reported that at least some patients refuse services during the pandemic.
“Even if they have been prescribed care, they're saying they’d rather be safe than sorry and they’re saying no to home care workers,” said Bill Dombi, the association’s president. “They’re choosing to go without a bath. They may end up lying in their own incontinence. We're getting reports of family members stepping in to do some of this work, but that isn’t always possible.”
The administration took steps last Thursday to expand home-based medical care, including more money for meal deliveries and telehealth — but it didn’t address the protective equipment and testing needs of home health agencies or their clients. Home care advocates say some of the drop-off in home care amid the pandemic could have been avoided if workers and patients were protected and had a way to track whether they have been exposed.
Many workers describe ways they have had to repeatedly reuse scarce protective gear, or improvise by, for instance, turning plastic soda bottles into makeshift face shields.
The Centers for Medicare and Medicaid Services, which finances some home care through those two government health programs, did not respond to a request for comment. The White House has said testing capacity is improving, as well as supplies of PPE.
Advocates for home care are pushing for Congress to address the situation in the next rescue package. In a new, national six-figure ad buy, the Service Employees International Union, which represents thousands of home health workers, is pressing for guaranteed paid sick leave and free testing for home health aides. LeadingAge also wants Congress to include a 5 percent increase in the Medicare reimbursement rates for both nursing homes and home care.
Data is limited on how the pandemic is affecting the hundreds of thousands of home health aides — which include a disproportionate number of immigrant women who, in the best of times, earn low pay and no benefits for work that can be physically and emotionally exhausting — or the millions of fragile seniors and people with disabilities who depend on them.
“It’s often called the invisible population — but it’s an overlooked population,” said Nancy Berlinger, a bioethicist who specializes in aging issues at The Hasting Center think tank. “Home health workers are in plain sight.”
Nobody who closely follows home health suggests there will be massive patient abandonment, despite fears that some unknown number of people may be falling through the cracks in ways that won't be discovered in time. But in many cases, it's now family members who are not at the office pitching in, as well as friends, neighbors and volunteers. Even postal workers have alerted someone if they notice mail piling up.
“These individuals are relying on volunteerism and families — or they are on their way to the emergency room,” said Terry Fulmer, president of The John A. Hartford Foundation, which focuses on the care of older adults.
For patients who develop the coronavirus, it can be even harder to get or keep a home care aide. One home care worker told POLITICO that if her client shows symptoms, she must get tested and then wait at home without pay until the results come back. There have also been cases where the aides do get infected and then, before they develop severe symptoms, unknowingly spread it to their clients. Advocates and experts on home care worry that could increase stigma, particularly since so many of the aides are foreign-born.
“Are they vectors? We’re all vectors,” said Hartford’s Fulmer, who urged the government to create training programs to get more home health aides on the job — filling in care gaps while employing people who’ve lost jobs at places like restaurants.
Home care patients near the end of life face extra challenges, particularly if they don’t have family around. Hospice workers, who have also struggled to get adequate PPE, can provide some care via telemedicine, and CMS has granted a degree of extra flexibility around that during the crisis.
Given the risks during the pandemic, “you have to be prudent,” said Lisa Bishop, vice president for palliative and serious illness at the National Hospice and Palliative Care Organization. That means figuring out what care can be provided remotely “and what needs to be in the home, hands-on.”
But hospice isn’t designed to provide full time care, so for home care patients who are alone, without nearby family or full-time caregivers, the only option might be going to the hospital to die, unless they can get one of the relatively few inpatient hospice beds. LeadingAge and other groups are pushing to expand hospice respite care, which would give patients more round-the-clock assistance either in a hospice house or in their own home, in Congress’s next stimulus bill.
In the meantime, home care workers and their patients struggle to balance risk and need.
Adarra Benjamin, a home care worker in Chicago, said one of her four clients canceled for the entire month of March. Already dependent on an oxygen tank because of advanced chronic obstructive pulmonary disease, the woman feared she would not survive if Benjamin accidentally brought the coronavirus into her home. But, unable to take care of herself, or even lift groceries that had been delivered, she soon asked Benjamin to return.
“Because of the relationship we’ve created, she trusted me enough to allow me back into her home to help her,” Benjamin said. “And thank God, because how am I supposed to survive and provide for my family if my client is too afraid?"
Irene Hunt, a home health aide in Springfield, Ore., who serves 10 or more patients each week, has also had multiple clients refuse services. But she filled her schedule with new clients from coworkers who don’t feel safe going home to home. Because Hunt’s job requires close physical contact, she sent her 7-year-old daughter to live at a grandparent’s home more than a month ago, visiting in the backyard on weekends a safe 6 feet apart.
“I have to practice social distancing with my own family, because I can’t with my clients,” she said, her voice breaking. “And I don’t have the luxury of being able to stay home, financially.”
Many frightened families are pulling their loved ones out of long-term care facilities, where the death toll has surpassed 10,000, and trying to care for them at home. But they may wait for weeks to get an aide to help out, if they can get one at all.
“Residents are saying, ‘I don’t feel safe here. I want to go home,’” said Bob Stephen, the vice president of Caregiving and Health Programs at AARP, which released videos for families on how to provide complex care at home. “Agencies are having to decide who they’re going to work with, who they’re going to care for — and are prioritizing those who have the most need and who don’t have family members able to step in.”
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