Home health care workers are so hard to find right now that some families have to handle all the care of older relatives alone, and some older people, without family available, are entirely without care. Journalist Judith Graham describes the situation and its repercussions in this article written for Kaiser Health News. KHN posted her story on February 3, 2022; it also ran on CNN. Funding from the Silver Century Foundation helps KHN develop articles (like this one) on longevity and related health and social issues.
Frail older adults are finding it harder than ever to get paid help amid acute staff shortages at home health agencies.
Several trends are fueling the shortages: hospitals and other employers are hiring away home health workers with better pay and benefits. Many aides have fallen ill or been exposed to COVID-19 during the recent surge of omicron cases and must quarantine for a time. And staffers are burned out after working during the pandemic in difficult, anxiety-provoking circumstances.
The implications for older adults are dire. Some seniors who are ready for discharge are waiting in hospitals or rehabilitation centers for several days before home care services can be arranged. Some are returning home with less help than would be optimal. Some are experiencing cutbacks in services. And some simply can’t find care.
Janine Hunt-Jackson, 68, of Lockport, NY, falls into this last category. She has post-polio syndrome, which causes severe fatigue, muscle weakness and, often, cognitive difficulties. Through New York’s Medicaid program, she’s authorized to receive 35 hours of care each week. But when an aide left in June, Hunt-Jackson contacted agencies, asked friends for referrals, and posted job notices on social media, with little response.
“A couple of people showed up and then disappeared. One man was more than willing to work, but he didn’t have transportation. I couldn’t find anybody reliable,” she said. Desperate, Hunt-Jackson arranged for her 24-year-old grandson, who has autism and oppositional defiant disorder, to move into her double-wide trailer and serve as her caregiver.
“It’s scary: I’m not ready to be in a nursing home, but without home care there’s no other options,” she said.
Because comprehensive data isn’t available, the scope and impact of current shortages can’t be documented with precision. But anecdotal reports suggest the situation is severe.
Most home care agencies have had to refuse new clients at times during the past year.
“Everyone is experiencing shortages, particularly around nursing and home health aides, and reporting that they’re unable to admit patients,” said William Dombi, president of the National Association for Home Care & Hospice. Some agencies are rejecting as many as 40 percent of new referrals, according to reports he’s received.
“We’re seeing increasing demand on adult protective services as a result of people with dementia not being able to get services,” said Ken Albert, RN, president of Androscoggin Home Healthcare and Hospice in Maine and chair of the national home care association’s board. “The stress on families trying to navigate care for their loved ones is just incredible.”
In mid-January, the Pennsylvania Homecare Association surveyed its members: Medicare-certified home health agencies, which provide assistance from aides and skilled nursing and therapy services, and state-licensed home care agencies, which provide nonmedical services such as bathing, toileting, cooking and housekeeping, often to people with disabilities covered by Medicaid. Ninety-three percent of Medicare-certified home health and hospice agencies and 98 percent of licensed agencies said they had refused referrals during the past year, according to Teri Henning, the association’s chief executive officer.
“Our members say they’ve never seen anything like this in terms of the number of openings and the difficulty hiring, recruiting and retaining staff,” she told me.
Lori Pavic is a regional manager in Pennsylvania for CareGivers America, an agency that provides nonmedical services, mostly to Medicaid enrollees who are disabled. “Our waiting list is over 200 folks at this time and grows daily,” she wrote in an email. “We could hire 500 [direct care workers] tomorrow and still need more.”
Another Pennsylvania agency that provides nonmedical services, Angels on Call, is giving priority for care to people who are seriously compromised and live alone. People who can turn to family or friends are often getting fewer services, said C.J. Weaber, regional director of business development for Honor Health Network, which owns Angels on Call.
“Most clients don’t have backup,” she said.
Families are doing their best to fill the gaps in home care.
This is especially true of older adults with serious chronic illnesses and paltry financial resources who are socially isolated—a group that’s “disproportionately affected” by the difficulties in accessing home health care, said Jason Falvey, DPT, an assistant professor of physical therapy and rehabilitation science at the University of Maryland School of Medicine.
Many agencies are focusing on patients being discharged from hospitals and rehab facilities. These patients, many of whom are recovering from COVID, have acute needs, and agencies are paid more for serving this population under complicated Medicare reimbursement formulas.
“People who have long-term needs and a high chronic disease burden, [agencies] just aren’t taking those referrals,” Falvey said.
Instead, families are filling gaps in home care as best they can.
Anne Tumlinson, founder of ATI Advisory, a consulting firm that specializes in long term care, was shocked when a home health nurse failed to show up for two weeks in December after her father, Jim, had a peripherally inserted central catheter put in for blood cell transfusions. This type of catheter, known as a PICC line, requires careful attention to prevent infections and blood clots and needs to be flushed with saline several times a day.
“No show from nurse on Friday, no call from agency,” Tumlinson wrote on LinkedIn. “Today, when I call, this 5 star home health agency informed me that a nurse would be out SOMETIME THIS WEEK. Meanwhile, my 81 year old mother and I watched youtube videos this weekend to learn how to flush the picc line and adjust the oxygen levels.”
Tumlinson’s father was admitted to the hospital a few days before Christmas with a dangerously high level of fluid in his lungs. He has myelodysplastic syndrome, a serious blood disorder, and Parkinson’s disease. No one from the home health agency had shown up by the time he was admitted.
Because her parents live in a somewhat rural area about 30 minutes outside Gainesville, FL, it wasn’t easy to find help when her father was discharged. Only two home health agencies serve the area, including the one that had failed to provide assistance.
“The burden on my mother is huge: she’s vigilantly monitoring him every second of the day, flushing the PICC line and checking his wounds,” Tumlinson said. “She’s doing everything.”
Many nursing homes are so understaffed that they can’t take new patients.
Despite growing needs for home care services, the vast majority of pandemic-related, federal financial aid for health care has gone to hospitals and nursing homes, which are also having severe staffing problems. Yet all the parts of the health system that care for older adults are interconnected, with home care playing an essential role.
Abraham Brody, PhD, associate professor of nursing and medicine at New York University, explained these complex interconnections: when frail older patients can’t get adequate care at home, they can deteriorate and end up in the hospital. The hospital may have to keep older patients for several extra days if home care can’t be arranged upon discharge, putting people at risk of deteriorating physically or getting infections and making new admissions more difficult.
When paid home care or help from family or friends isn’t available, vulnerable older patients may be forced to go to nursing homes, even if they don’t want to. But many nursing homes don’t have enough staffers and can’t take new patients, so people are simply going without care.
Patients with terminal illnesses seeking hospice care are being caught up in these difficulties as well. Brody is running a research study with 25 hospices, and “every single one is having staffing challenges,” he said. Without enough nurses and aides to meet the demand for care, hospices are not admitting some patients or providing fewer visits, he noted.
Before the pandemic, hospice agencies could usually guarantee a certain number of hours of help after evaluating a patient. “Now, they really are not able to guarantee anything on discharge,” said Jennifer DiBiase, MSW, palliative care social work manager at Mount Sinai Health System in New York City. “We really have to rely on the family for almost all hands-on care.”
Judith Graham writes a column on aging and health for KFF Health News, where she’s a contributing columnist. She also freelances for other publications. Earlier in her career, Judith contributed more than 80 pieces to the New York Times blog, The New Old Age. She was nominated for a Pulitzer Prize for a series on defective pacemakers and was part of a Chicago Tribune team that won a Pulitzer in 2001.