The long-term care offered out of plain sight: How home health caregivers have weathered the pandemic

Jan. 15 was an exciting day for Daravadee Mann, when after 10 months of living in constant fear of bringing a potentially deadly virus to her clients, she would get vaccinated against it.

Mann is an at-home caregiver and has been for 18 years. She has taken care of people who are essentially homebound, as well as people who just need a ride to the store or help cooking their meals.

She can help with the cooking, cleaning, dressing, bathing and assisting clients need to get through their everyday lives, as well as ensuring their medications are stocked and check-ins at the doctor’s office are booked.

Mann knows what it means to be a person’s link to the outside world, and when the pandemic hit, that job intensified.

“When you work for these people and clients, you need to be able to protect yourself so you don’t bring the virus in,” she said.

This meant more gloves, more sanitation wipes, more caution. Mann knew she presented a virus risk to her clients. But for some clients, there is no alternative – she is the only caregiver with whom they are comfortable .

“I am the only one there,” she said of one client, “and if I cannot be there, she doesn’t want anybody.”

For Mann and approximately 850,000 home caregivers in Washington, the pandemic brings hyper-vigilance.

Mann is a paid agency caregiver and was most recently caring for three people, some who are more active in the community and one who is homebound.

Home caregivers provide the majority of long-term care in Washington, serving roughly 46,000 people who are accessing services through Medicaid. About 70,000 total Washington residents receive long-term care benefits through Medicaid in the state, with 24,000 served in long-term care facilities or adult family homes.

This is a policy choice that puts Washington ahead of the curve when it comes to long-term care.

“The vast majority (of people) are getting services outside of the nursing home, and that’s largely due to preference and choice,” said Bea Rector, director of the home and community services division at the Department of Social and Human Services. “If we have a choice to stay in our home with our family and in our community, that’s what we will do. Washington is a national leader in the provision of long-term care because we’ve set up a system where choice is paramount, where people can stay home and get services.”

Medicare only pays for home and community-based services for short, set amounts of time, usually after a hospital stay, and while private long-term care insurance is available, only about 7% of Washington residents carry it, Rector said. Some people are able to pay for at-home care through private insurance, but when Medicare funding runs out, a person is forced to pay out of pocket or join the Medicaid rolls.

At-home care is provided by agencies that employ workers or by individual providers, who are compensated by the state. The majority of people receiving care in their homes are served by individual providers, who sometimes are family members .

While at-home caregivers have not been immune to the harsh realities of COVID-19 and its effect on their patients, the prevalence of COVID-19 in these settings is quite low compared to long-term care facilities.

“When you live in your home, you can control whether you live alone or with your family unit and often your paid provider is in that family unit, so the prevalence of COVID activity in homes is minuscule,” Rector said, compared to the spread of the virus in facilities.

The Aging and Long-Term Support Administration has limited data about the spread of COVID-19 in at-home care settings because it is self-reported, but current estimates show 74 deaths due to COVID-19 in in-home care statewide and about 1,800 confirmed cases, Rector said.

By contrast, there have been 17,474 cases connected to long-term care settings, which include nursing homes, long-term care facilities and adult family homes, and 2,190 deaths.

Caring for familyDanielle Rice started caring for her siblings when she was 18. The social worker who frequented their house told Rice she could get paid to help care for her siblings as an individual provider.

Rice decided to do exactly that, and it helped pay her way through college. Nearly a decade later, she is still caring for her siblings a few hours a week, although the pandemic made that more difficult.

For starters, Rice now lives in Asotin County, and her siblings live in Grant County. She had to drive three hours to care for them, or sometimes, meet her mother halfway and hop in her car to get to them. Rice spends the weekends caring for her siblings, about 10 to 12 hours each Saturday and Sunday, giving her parents a break.

Her siblings, both younger than her, qualify for services through the state for their intellectual or developmental disabilities. Rice knows her siblings’ behaviors and patterns since she has cared for them so long, but the pandemic has put a strain on their usual routines.

Her sister, for example, had landed a job before the pandemic hit and was really excited for it, Rice said, but that immediately got cut last spring. Activities at the local Department of Social and Human Services office were also canceled, meaning Rice is left to come up with entertaining and supportive things to do for her siblings.

There is also the added risk of being susceptible to the virus, which Rice knows well.

“I’m an individual with a pre-existing condition: I have severe asthma, and I’m a wheelchair user as well, as of two and a half years ago, so it’s been considerably dangerous for me myself to go out,” she said.

Rice has had to weigh the consequences of going to the nearest big store to her house (the Walmart in Clarkston) or church for several months. She knew she had to stay safe for herself and also for her siblings’ sakes.

Accessing personal protective equipment at the beginning of the pandemic was a challenge, Rice said. Initially, at-home caregivers were not on the first tier to receive the gear.

Eventually, when supply chains improved in late spring, supplies increased, and the Department of Social and Human Services set up storehouses of PPE for caregivers. Rice was a part of the individual provider union bargaining team that worked with the state to build up that surplus.

“I can say with confidence that the state will work hard to build a surplus for caregivers because it’s part of the deal that we have passed with them, so they will be required to do that,” she said.

Fundamental to the health care systemWhile the number of cases and deaths in at-home settings is lower, the work has been just as stressful for caregivers, who are well aware they could infect their clients, or potentially contract the virus themselves.

SEIU 775 Union President Sterling Harders said the work of at-home caregivers is a part of what helped keep vulnerable and older residents in the state safe throughout the pandemic.

“I think this pandemic has demonstrated how fundamental they are to our health care system,” Harders said.

Caregivers were both fundamental and vulnerable to the virus themselves, as Brenda Morgan, an individual provider in Pasco, learned.

She has cared for one woman for about 12 years, and the two have become as close as family.

So when Morgan came down with COVID-19 in June, she instructed her family to help her client in safe ways to ensure she still had some support as Morgan recovered.

Morgan fell very ill, choking on her breathing, losing her voice after talking for too long and trying to keep her family out of her own room. Her family caught the virus too, but no one had as bad of an infection as Morgan.

While she recovered, her older son’s friends took groceries to her client and checked in on her. She would talk to her client through Facebook messenger calls.

“She’d say, ‘When are you coming back? Please come back,’ ” Morgan said.

She was out for about five weeks with COVID, and Morgan asked her client to be patient. The client didn’t want to get a new provider while Morgan was out, which is common.

“When you change a client’s care provider, it’s starting over and not the same thing,” Morgan said.

She was eventually able to return to work and care for her client safely.

The culture is changingAt-home caregiving was not always a stable profession in Washington state. Nearly 20 years ago, caregivers were making the federal minimum wage, offered no benefits or sick time and had no access to state labor protections.

This all changed in the early 2000s, when caregivers came together to pass a ballot initiative to legally unionize.

Susie Young was caregiving back then and joined the fight for representation.

“I started this job back in the late ’80s, so before the union came in everybody was a low-wage worker,” Young recalled. “You made maybe $7.50 an hour before the union and then at the agency, I had a few more things, but you have not even a living wage, no paid time off, no gas mileage, no training. You had nothing. You had a job, but no health insurance, no voices, we were just invisible. We wore buttons when we got into the union that said, ‘Invisible no more.’”

After the initiative passed, caregivers unionized in 2002 and began formally advocating for better wages and improved working conditions. Today, the union represents more than 45,000 long-term care workers, both in facilities, adult family homes and at-home caregivers, in Washington and Montana.

Since funding for at-home caregiving in Washington state comes from the Medicaid budget, the union has had to be active in state politics to ensure that members can provide the necessary care to clients.

“If the state cuts client hours, we take a pay cut, but what happens to that client?” Young said.

Less time caregivers are allowed to spend with clients could mean the difference between a hot meal and a cold one or a daily shower to a weekly shower. For clients’ health and safety, from Young’s and Harders’ perspectives, caregivers are providing a necessary piece of the health care puzzle. At-home caregivers are required to get 75 hours of training from the state in order to provide care. This too, marks a departure from where caregiving used to be, Young says.

“The culture of home care is changing. We try to say that home care is part of health care; we’re not just there by ourselves,” she said.

Washington became the first state in the country to pass a long-term care insurance benefit in 2019, a potential new source of financial support for long-term care for state residents beyond Medicaid that begins in 2025. SEIU-775 supported the legislation.

“The way we pay for long-term care in this country is fundamentally broken,” said Harders, the union president. “It’s incredibly expensive – most can’t afford to pay out of pocket, and as people live longer and more and more folks age, we’re facing a crisis in the system where folks can’t pay for long-term care and there’s not enough workers to provide the care.”

Prioritizing self-care in light of challenging workWhile wages and benefits for at-home caregivers have improved significantly in Washington, the people needing services require more intensive care than when Young first started working as a caregiver. Not all clients are the same. Some people need rides to the grocery store or library. Others need to be lifted in and out of bed. The acuity ranges significantly, and Young said training has gotten more in-depth over the years to match the needs of patients.

With Washington‘s long-term care model allowing people to stay in their homes longer, this shift makes sense, but it also means workers need to be better prepared.

Young tells the story of seeing a sore on her client’s foot and, instead of ignoring it, she picked up the phone and called the client’s doctor, eventually preventing an ulcer.

“When I started this job 30-plus years ago, they were not the high-medical-needs clients we have today,” Young said. “We have clients today that are one step away from the nursing home, but we have a trained workforce. The clients I had years ago wouldn’t even qualify for the program.”

At-home caregiving can be exhausting both physically and mentally.

Dr. Cynthia Burdick, medical director for Medicare and Medicaid at Kaiser Permanente in Washington, said the pandemic stress on caregivers adds another layer of uncertainty onto an already strenuous job.

“They want to be sure that the cared-for one is OK, but they also don’t want to do anything wrong and expose that person and other people in the house or facility to what could be a deadly viral infection,” Burdick said. “So that tension and stress is a big burden for our caregivers, and the trauma of seeing people get sick is really scary.”

Burdick said self-care for caregivers is important, especially when caregivers are not inclined to take days off since that might mean no one can take care of a client that day.

“People, I think, are working out of duty and services, sometimes to the detriment of their own self-health,” she said.

From eating healthier meals to exercising, Burdick said she encourages her patients to set doable, small goals to improve self-care, whether that be drinking three cups of coffee a day instead of four or remembering to eat vegetables. She also encourages those who need extra support to seek it through community resources or mental health care providers.

“It is hard to be a caregiver, it was hard before, and it’s really hard now,” she said.

Young described her pandemic year as one with heightened awareness and way fewer gatherings.

“I am always aware of where I am because I do not want to get the virus and bring it to my client,” she said.

When the dust settles on the pandemic, at-home caregivers will still be needed, arguably more so each year as people continue to live longer and many opt to remain in their homes.

The union continues to advocate for measures that keep the caregiving workforce stable. Young said it’s been amazing to see the initial goal of the union – to lift caregivers out of poverty – become a reality.

“We want to stabilize the workforce, and if you don’t pay people, they don’t stay,” Young said.

For Morgan, who has cared for the same client for a dozen years, building a relationship and growing an attachment is a part of what keeps her in her job. When she was younger, she thought she would work in a hospital, but after she tried at-home caregiving, she has stayed for many years.

“I love it, as hard as it is; it’s not an easy job, there’s moments when you’ll lose a client to death or to a move or whatever the circumstances, but you grow that attachment, that client becomes a piece of you and they become a piece of who you are,” Morgan said.

Morgan acknowledges how exhausting the work can be, but then she remembers that her client is elderly and “we’re all headed that way,” she says.

“The most cherishable moments are when she says, ‘Thank you for being the one to stick by me and take care of me when I’m at my hardest. You’re the only one who’s stuck by me, because everybody walks out,’ ” Morgan said. “Those are the moments that are most fortifying for me.”

SEIU-775 union members in Spokane County will get their second doses of the COVID-19 vaccine this month, including Young and Mann.

Mann said lots of people have been asking her how getting her shots goes. She has been getting her flu shot every year since she turned 65, she says, so if it’s uncomfortable or she has a reaction to getting it, she is prepared.

She is excited about the peace of mind that will come after she is fully immunized.

“I’d rather be in pain and save everybody else from contracting the virus,” she said.