The pandemic has resulted in a nursing shortage that has made life difficult for parents of profoundly disabled children. I’m so exhausted, what if I make a mistake?
The time was 9 a.m. in May, and Chloe Mead was already exhausted.
As she cradled her 7-year-old son in her living room, she supported his head with one hand and helped him toss a ball with the other, careful not to disturb the ventilator that kept him alive. In case his tracheotomy tube needed cleaning, a pump was nearby to monitor his blood-oxygen levels. Her 4-year-old daughter was building a pillow fort in the corner.
“I need five more arms,” she said.
She wouldn’t normally be alone. When a nurse unexpectedly cancelled a shift, Ms. Mead and her husband provided round-the-clock care for Henry, who has spinal muscular atrophy, a rare muscle-wasting disorder.
The couple, who live in Queens, have been forced to handle longer and longer periods on their own due to a shortage of home-care nurses. Andy Maskin was catching up on sleep so he could work the late shift that night, from 2 a.m. to 7 a.m.
Approximately 4.5 million Americans with illnesses or disabilities are cared for at home by aides, therapists, or nurses. The majority of these patients are older, but hundreds of thousands are children with complex health needs, a number that has risen as medical advances have allowed more children to survive to adulthood.
It has long been difficult for these children’s families to find skilled help, but Covid-19 has made an already untenable situation worse. Some nurses abandoned the profession to care for their own out-of-school children. As a result of the surging demand for nurses in hospitals, testing centers, and vaccination centers, nurses earned as much as double their wages at home caring for patients.
Conditions may not improve much with the easing of the pandemic. As a result of the public health crisis that prompted 29 percent of health care workers to consider leaving the profession, many expect a wave of retirements.
The situation is as bad as it’s ever been, said Liz Wise, who works for Bayada Home Health Care, which helps transition young patients from hospitals to homes. Her own daughter needed home-care nursing, so she understands how vulnerable patients can be when they can’t get the coverage they need. I can’t sleep at night because of disappointing families.”
Many had hoped the Biden administration’s infrastructure plan would improve home and community-based care with $400 billion. While the president and Republicans fight over the proposal’s size and scope, it is unclear whether that part will survive.
Meanwhile, parents are increasingly left alone to carry an unrelenting burden.
The Pandemic Deepens a Pay Gap
The nurse caring for a medically fragile child at home has the same responsibilities as they would in a hospital, but does not have medical backup in case of an emergency. Experts say prevailing wages don’t reflect the difficulty of the job.
Due to the high cost of round-the-clock nursing, state Medicaid programs cover in-home care for eligible children regardless of their families’ income. The state generally pays home care nurses much less than it would for equivalent care in a hospital.
A spokesman for the Home Care Association of New York State said, “They effectively establish a benchmark for workers’ compensation that disadvantages this sector.” As a result, state-certified home health agencies pay nurses modest salaries and rarely provide them with health insurance or other benefits.
In these cases, hospitals receive about half of Medicaid spending compared with 2 percent for home care, even though home care is more appropriate for medically fragile children.
As a result of Covid-19, the home care work force was further diminished due to competing demands for nursing. Northwell Health, the state’s largest health care provider, hired 40 percent more nurses in 2020 than the year before and contracted with 1,000 additional temporary nurses once the local hiring pool ran out.
In January, Robert Pacella, CEO of Caring Hands Home Care, the agency that staffs Henry’s case, noticed the change as nurses declined shifts and new applicants dried up.
Previously, we could easily interview 20 qualified candidates a week – now we’re lucky to get two to four,” he said. Pacella said he had to turn away new patients for the first time in his career.
New York isn’t the only place where the problem exists. The eight-state operation of Thrive Skilled Pediatric Care received 53 percent fewer job applications in March than in the same month last year. Several states, including New Hampshire, Michigan, and Pennsylvania, have reported shortages of home care providers.
31-year-old Nassau County nurse Jarred Rhatigan worked several days a week with Caring Hands for an hourly wage of around $40 in addition to a full-time job in a hospital. Beginning last December, he began working up to $75 an hour administering vaccines at sites throughout the greater New York area.
“Home care cannot compete with the rates,” he said. He paid off $8,000 of student loans this year, but it’s just a dent in the $62,000 he still owes.
Despite her hourly pay increasing by just $1 over the past four years, Jen Semple, a registered nurse in South Carolina, has provided home care for a single patient. After the pandemic began, she cut her home care hours to administer vaccines for a local health care system, earning $7 more per hour. Covid’s recovery is rewarding, and the atmosphere is cheerful, with a steady stream of patients delighted to get their doses. “But I feel guilty because I know my private duty patient still has hours to fill,” she said.
During the pandemic, Carolyn Foster, a pediatrician and researcher at Ann and Robert H. Lurie Children’s Hospital of Chicago, surveyed parents of medically fragile children and found half had lost home health care services. Often, patients with the most complex conditions have the hardest time finding capable staff.
“Vulnerable families were made even more vulnerable,” she said.
‘We Have Nobody’
His parents cut back on their own hours to cover the slack left by two nurses who fell ill and were quarantined during the first months of the pandemic. After several months, they reassembled their nursing coverage, but gaps reappeared this spring. Upon calling her home care agency, Ms. Mead was told, “We don’t have anyone.”.
Mead contacted other agencies, contacted nurses who had cared for Henry previously, and posted a plea on Facebook. In addition, her daughter had recently been diagnosed with Type 1 diabetes, so the couple had to care for two children with life-threatening conditions.
Due to the recurrent all-nighters, both parents are exhausted. “I would like to believe that I’m always sharp, but what if I’m so exhausted that I make a mistake?” she asked. “It’s really scary.”.
In the case of single parents, the difficulties are compounded. She has sole responsibility for her 4-year-old son, Sam, who is on a ventilator and prone to seizures due to a rare neurological disorder. Nursing care is prescribed for him 20 hours a day, but he has never had enough nurses to cover it.
Ms. Morris and Sam’s father divorced before he was born, and her parents live in Italy, so she has no relatives to help her. She works at Home Depot if she can get a nurse. To reduce the risk of her contracting the Coronavirus and passing it on to her son, she switched to the night shift early in the pandemic. “But if I don’t have coverage, I can’t work.” she said. It is impossible for me to pay my bills on time if I am unable to go to work.”
She says weekends are the worst. Due to lack of nursing coverage, she is alone with her son from Saturday night to Monday morning, sometimes lying beside him so he will wake her if she doeszes off. After a nurse relieves her, she rests for a few hours before returning to work. “It’s like a nightmare,” she said. “I can’t remember the last time I slept through the night in my own bed.”
To earn a living at her son’s bedside, Ms. Morris has considered enrolling in nursing school. Most Medicaid programs prohibit people from getting paid as caregivers for relatives, but some states temporarily relaxed those restrictions during the pandemic, and some have established permanent programs. It is possible to become a certified nursing assistant for family members in Colorado, for instance. The tuition for a two-year nursing program at a nearby university, over $25,000, discourages Ms. Morris. She earns $13 an hour at her current job, and she has no savings.
Government Steps In, Lightly
Experts recommend incorporating home care into nursing education and creating financial incentives to enter the field to address the nurse shortage, but the problem can’t be solved unless the disparity between home care and medical facilities is narrowed.
“Reimbursement rates for home care need to be increased, as well as including health benefit packages, so that it becomes a valued role in health care,” Cara Coleman, the director of public policy and advocacy at Family Voices, a nonprofit that advocates for families with special needs, said.
For nurses who care for medically fragile children, New York State’s Medicaid program paid less than most other states. By April 2022, reimbursements will have risen by 45 percent after years of advocacy by families and medical providers.
“We were blown away,” said Doctor, president of St. Mary’s Healthcare System for Children, who pushed for the increase. However, he said, “hospital salaries are still competitive.”
Since Medicaid programs receive significant federal funding, many advocates look to Washington for help. As part of the stimulus package, enacted in March, the Biden administration temporarily increased federal support for state Medicaid programs’ home and community-based services – but the measure lasts only one year, and states may balk at expanding programs they will ultimately have to fund themselves. As part of Biden’s infrastructure plan, $400 billion would be sent to states over 10 years to improve home care.
The researcher and pediatrician Doctor said that this would be a “critically needed increase” in resources, but not a long-term solution. In place of this, she pointed to a proposal by a group of Democratic lawmakers to permanently expand the entitlement for home and community-based services and standardize them nationwide, with all costs borne by the federal government. It would be a once-in-a-generation opportunity, she conceded, but it would be costly.
Several nurses are expected to return to home care as the pandemic ebbs and testing and vaccination sites slow down. However, Ms. Mead has seen no proof of it: She lacks nursing coverage two nights this week and expects to pass them, vigilant, caring for her son.