Older adults are finding it harder than ever to get paid help amid acute staffing shortages at home health agencies.
Several trends have fueled the shortages: Hospitals and other employers hiring away home health workers with better pay and benefits. Many aides falling ill or being exposed to COVID-19 during the recent surge of omicron cases, forcing them quarantine for a time. And staffers burning out after working during the pandemic in difficult, anxiety-provoking circumstances.
The implications for older adults are dire. Some seniors ready for discharge have waited in hospitals or rehabilitation centers for several days before home care services could be arranged. Some have returned home with less help than would be optimal. Some have experienced cutbacks in services. And some simply haven’t found care.
Janine Hunt-Jackson, 68, of Lockport, New York, 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,” she said. “One man was more than willing to work, but he didn’t have transportation. I couldn’t find anybody reliable.”
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,” she said. “I’m not ready to be in a nursing home, but without home care there’s no other options.”
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.
“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% 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, 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: 93% of Medicare-certified home health and hospice agencies and 98% of licensed agencies said they had refused referrals during the past year, according to association CEO Teri Henning.
“Our members say they’ve never seen anything like this,” she said, “in terms of the number of openings and the difficulty hiring, recruiting, and retaining staff.”
Lori Pavic, the regional manager in Pennsylvania for CareGivers America — an agency that provides nonmedical services, mostly to Medicaid enrollees with disabilities — said she has a waiting list of more than 200 people.
Another Pennsylvania agency, Angels on Call, is giving priority to people who are seriously compromised and live alone.
“Most clients don’t have backup,” said C.J. Weaber, regional director of business development for Honor Health Network, which owns Angels on Call.
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, 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-19, have acute needs, and agencies are paid more for serving this population under complicated Medicare reimbursement formulas.
For those with long-term needs and chronic diseases, families are filling gaps in home care as best they can.
Anne Tumlinson, founder of ATI Advisory, a consulting firm specializing in long-term care, said she 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 requires careful attention to prevent infections and blood clots and needs to be flushed with saline several times a day.
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, Florida, 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,” Tumlinson said. “She’s doing everything.”
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, 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 said.
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, 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.”
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