All day, most days, for $10 an hour, Marley Brownlee comes and goes from the homes of the old and the weak.
Brownlee is one of the millions of health-care workers whose challenges have been largely overlooked in the United States’ halting mobilization against the novel coronavirus: the personal aides, hospice attendants, nurses and occupational or physical therapists who deliver medical or support services to patients in their homes. At least 12 million people in the United States depend on such services every year, according to the National Association for Home Care and Hospice, many of them older or coping with severe disabilities.
It is a sprawling sector of the U.S. health-care delivery system — and one whose fortunes could be critical in efforts to contain covid-19, the deadly lung disease caused by the coronavirus. With nursing homes across the country locked down and hospitals preparing for an onslaught of covid-19 patients, many who require medical services or help with the basic tasks of daily living are likely to be confined to their homes in the weeks and months ahead. Yet the providers of those services say they are unprepared to step into the breach, hamstrung by regulations ill-suited to the current pandemic and unable to access protective gear that could shield workers and clients alike from infection.
“There’s no doubt that we’re being sort of forgotten in all this, and I fear that mentality is going to eventually come back and punish us,” said Joe Russell, executive director of the Ohio Council for Home Care and Hospice. “If we’re carrying this disease from household to household, these people are just as vulnerable as anybody in a hospital or a nursing home."
He added, “I fear that without additional support, and additional support very soon, you’re going to start to see the system sort of fall apart in front of our eyes.”
Such concerns are being pressed in states across the country and in Washington, where home-care industry leaders are pleading with Trump administration officials and members of Congress not to exclude their providers from the nation’s belated efforts to launch a coherent policy response to the pandemic.
They have two primary requests: An adequate supply of protective equipment — including the scarce N95 masks that are most effective in preventing transmission of the coronavirus — and increased flexibility in Medicare regulations that govern person-to-person contact at patients’ homes.
Medicare does not reimburse home-care providers for appointments conducted remotely by phone or video, impeding efforts to keep face-to-face interactions to a minimum and practice the social distancing recommended for slowing the spread of the virus. Electronic record-keeping rules adopted several years ago further require patients to verify their caretakers’ visits using a smartphone or tablet that is passed back and forth — a potential source of contagion from a virus that can survive for extended periods on hard surfaces.
The prospects for the industry’s appeals are uncertain. Amid a dire shortage of protective equipment for medical workers, supplies that become available probably will be directed to the doctors and nurses treating the worst cases of covid-19 in hospitals. And federal officials’ stance on reimbursing “telemedicine” appointments for home care has been noncommittal. Bill Dombi, president of the National Association for Home Care and Hospice, said that in the absence of decisive action from the Centers for Medicare and Medicaid Services, he and others have been pressing Congress to include such a measure in pending coronavirus legislation.
The home-care industry lacks the prominence and cachet of American hospitals, especially its most celebrated medical centers. No agency that sends workers into houses to help a stroke victim learn to mount the stairs again or assist a patient with a wheelchair in the bathroom vies for recognition with Johns Hopkins Hospital or the Cleveland Clinic. Yet home care has grown into a pillar of the medical and senior-care systems, serving both older clients who wish to avoid nursing homes — now more than ever — and people with disabilities, who in previous decades were often clustered in large institutions.
Tim Rogers, who heads the Association for Home and Hospice Care of North Carolina, said there are home-care agencies in his state with a daily caseload of 5,000 patients — far exceeding the capacity of even the largest hospitals. Home health aides are the country’s third-fastest-growing occupation, according to the U.S. Bureau of Labor Statistics.
The industry embraces a wide range of skill sets and qualifications and includes medical professionals whose credentials rival those of their counterparts in hospitals. But many positions require little training and offer low pay. In 2018, the median annual earnings of a home health aide were less than $25,000, according to federal data. Often they are hourly workers at or just above minimum wage.
It is a situation primed for hard decisions as caregivers balance the safety of their clients, their families and themselves against the need for a paycheck. Brownlee, who works as a nurse aide in Akron, Ohio, said she fears she could soon confront such choices. The 34-year-old is potentially more susceptible to the virus as a Type 1 diabetic. She is also the mother of 8-year-old twins who were born prematurely and still have compromised immune systems.
“Someone could sneeze in a room and a day later my twins are sick with something,” she said.
Unprotected as she ventures from house to house, Brownlee now comes into her home after work through her basement, removing her work clothes before joining the rest of her family. She is scared. So are her clients. Last week she cooked spaghetti, pork chops and rice for one person who ordinarily loves takeout but fears that the bags carrying the food she orders could be contaminated with the novel coronavirus.
“I don’t want my clients to get sick, and I don’t want to get my children sick,” Brownlee said. “It’s, like, a battle. Do I stay home? Do I go to work? I know that my clients depend on us, so I kind of just have to bite the bullet and take what precautions I can.”
Her boss, Eric Bloniarz of FirstLight Home Care, said some of his employees have begun staying home out of fear of the virus, putting added pressure on those, like Brownlee, who continue to work. To pick up the slack, he has started recruiting new aides from the growing ranks of workers laid off from struggling bars and restaurants over the past two weeks.
Bloniarz said he has tried to procure protective equipment for his staff, but it has been impossible to find N95 masks, and even new supplies of gowns and sanitizer could be a long time coming.
“Everything’s on back order till mid-April,” he said. “And the initial shipment that comes in, everything’s allocated to hospitals.”
Those concerns are shared among more highly skilled home health workers, including professionals who provide services — such as wound care or physical therapy — that in the past might only have been available in a hospital or doctor’s office.
“I’m not scared. I have been a nurse for 12 years, and so everything that we were trained to do is just what we’re doing. I’ve taken care of patients with every disease you can think of,” said Amber Lutman, a registered nurse and home-care case manager who lives in Warren, Ohio. The company she works for, Patriot at Home, has laid in a stock of the precious N95 masks, as well as other protective equipment.
“But what if this continues and things run out?” Lutman said. “What do you do?”
Greg Davis, owner of Patriot, said his business has surged as patients who need less intensive forms of care are discharged by hospitals trying to free up beds for anticipated covid-19 cases. Home-care providers could play a crucial role in lightening the pressure on American hospitals as the pandemic advances, he said, both by handling those discharges and treating less serious coronavirus infections in patients who can remain quarantined in their homes.
It’s appropriate that hospital workers fighting to save covid-19 patients on the brink of death are now the focus of policymakers trying to shore up the U.S. medical system, Davis said. But the resources and resolve of the system as a whole are likely to be tested as the pandemic advances.
“The acute-care hospital system is number one right now. They’re the front line,” Davis said. “But we’re standing right behind them. And so I think they really need to take a look at us.”