San Antonio Express-News (Sunday)
Scarcity of nurses for disabled kids worsens
Some quit for good; hospitals have been paying much higher
It was 9 a.m. on a Sunday in May, and Chloe Mead was already worn out.
In her living room, she cradled her 7-year-old son, Henry, supporting his head with one hand and helping him toss a ball with the other, careful not to disturb the ventilator that was keeping him alive. A nearby monitor tracked his blood-oxygen levels, and a pump was at the ready should his tracheotomy tube need cleaning. In the corner, Mead’s 4-year-old daughter was building a pillow fort.
“I need, like, five extra arms,” Mead said.
Ordinarily, she wouldn’t be by herself. Since infancy, Henry, who has spinal muscular atrophy, a rare muscle-wasting disorder, has had intensive, round-theclock nursing at home, with Mead and her husband serving as fallbacks when a nurse unexpectedly cancels a shift.
But the recent shortage of home care nurses has forced the couple, who live in Queens, N.Y., to handle longer and longer periods on their own — as many as 36 hours at a stretch. That morning, Mead’s husband, Andy Maskin, was catching up on sleep so he could take that night’s late shift, from 2 a.m. until 7 a.m., when he begins his own workweek.
About 4.5 million Americans with illnesses and disabilities are cared for at home by aides, therapists or nurses. Most of these patients are older, but hundreds of thousands are children with complex health needs, and that number that has climbed as medical advances allow more to survive into adulthood.
The families of these children have long struggled to find skilled help, but many say COVID-19 has made an already untenable situation even worse. Nurses left the workforce to care for their own out-of-school children or abandoned the profession permanently. And the surging demand for personnel at hospitals, testing sites and vaccination centers drew nurses away with as much as double the wages they earn for caring for patients at home.
The easing of the pandemic may not improve conditions much. The shortage of nurses is long-standing, and in the wake of a public health crisis that prompted 29 percent of health care workers to consider leaving the profession, many expect a wave of retirements.
“This is as bad as it’s ever been,” said Liz Wise, who works for Bayada Home Health Care, a nationwide nonprofit helping transition young patients from hospitals to homes. Her own daughter needed home care nursing, so she feels it keenly when patients can’t get the coverage they need. “Disappointing families is enough to keep me up at night.”
Many had pinned their hopes on the Biden administration’s infrastructure plan, which would
provide $400 billion to improve home and community-based care. But as the president and Republicans vie over the proposal’s size and scope, it’s unclear whether that part will survive.
Parents, meanwhile, continue to shoulder an unrelenting burden, increasingly alone.
Pandemic deepens a pay gap
A nurse caring for a medically fragile child at home has the same responsibilities they would in a hospital but no medical backup in case of emergency. It’s a highwire act, and experts say prevailing wages don’t reflect its difficulty.
Federal guidelines permit state Medicaid programs to cover inhome care for eligible children regardless of their families’ income because the price of roundthe-clock nursing would bankrupt almost anyone. But states generally pay home care nurses at much lower rates than they would for equivalent care in a hospital or other medical center.
“They effectively establish a benchmark of workers’ compensation that competitively disadvantages this field,” said Roger Noyes, a spokesman for the Home Care Association of New York State. In turn, state-certified home health agencies that provide families with nurses pay meager salaries and seldom offer health insurance or other benefits to the nurses they employ.
So although home care is more appropriate for medically fragile children, hospitals receive about half of Medicaid spending on these cases, compared with 2 percent for home care, studies show.
And COVID-19 generated competing demands for nursing that further diminished the home care workforce. Surging with the pandemic, New York state’s largest health care provider, Northwell
Health, hired 40 percent more nurses in 2020 than the year prior and contracted with 1,000 additional temporary nurses once the local hiring pool was exhausted.
Robert Pacella, CEO of Caring Hands Home Care, the agency that staffs Henry’s case, noticed the change in January as nurses began declining opportunities to pick up shifts and new applicants dwindled.
“As recently as two years ago, we could easily interview 20 people a week who were qualified — now we’re lucky to get two to four,” he said. For the first time in his career, Pacella said, he had to turn new patients away.
The problem isn’t confined to New York. Thrive Skilled Pediatric Care says its eight-state operation received 53 percent fewer job applicants in March, compared with the same month last year. Shortages of home care providers have been recently reported from New Hampshire to Michigan to Pennsylvania.
Jarred Rhatigan, a 31-year-old nurse from New York’s Nassau County, was once part of the home care workforce. In addition
to a full-time position in a hospital, he worked several days a week with Caring Hands for an hourly wage of around $40. But beginning last December, he dropped all those shifts to administer vaccines at sites across the greater New York area for up to $75 an hour.
“Home care definitely can’t compete with the rates,” he said. These earnings helped him pay off $8,000 of student loans this year, although it’s just a dent in the $62,000 he still owes.
For the last four years, Jen Semple, a registered nurse in South Carolina, has provided home care to a single patient despite hourly pay that rose just $1 during that time. When the pandemic began, she cut her home care hours to administer vaccines for a local health care system at an hourly wage $7 higher than what she had been earning. It is rewarding to contribute to the COVID-19 recovery, she said, and the atmosphere is cheerful, with a stream of patients thrilled to get their doses. “But part of me does feel guilty because I know my private duty patient still has hours unfilled,” she said.
Between June and October 2020, Carolyn Foster, a researcher and pediatrician at the Ann and Robert H. Lurie Children’s Hospital of Chicago, surveyed parents of medically fragile children and found that half had lost home health care services during the pandemic. And patients with the most complex conditions often have the hardest time finding capable staff.
“The most vulnerable families were made all that more vulnerable,” she said.
Government steps in, lightly
To address the deficit of nurses, experts tick off recommendations including better incorporating home care into nursing education and creating financial incentives to enter the field — but most agree the problem can’t be truly addressed without narrowing the disparate pay between home care and medical facilities.
“Reimbursement rates need to be increased for home care, and also include health benefit packages, so that it becomes more of a valued health care role,” said Cara Coleman, the director of public policy and advocacy at Family Voices, a nonprofit that advocates for families and children with special needs.
Until recently, New York state’s Medicaid program paid less than most other states for registered nurses who care for medically fragile children. Last October, after years of advocacy by families and medical providers, the state carried out the first of several planned increases in reimbursement. By next April, they will have risen by 45 percent.
“We were blown away they did it,” said Dr. Eddie Simpser, the president of St. Mary’s Healthcare System for Children, who pushed for the increase. But, he said, “hospital salaries are still strong competition.”