Inside N.J.s in-home nursing shortage. A crisis intensifies as families beg for lifelines.

No one came to help Abi Insley once again.

The 10-year-old needs a nurse by her side throughout the day, especially when shes in school. But for the third time in a week last month, her nurse had to call out sick.

And no replacement was available.

It didnt just mean the severely disabled Sicklerville girl missed school. It means she also missed crucial therapy she cannot do without.

Abi suffers from a life-threatening seizure disorder, legal blindness, kidney disease, severe respiratory problems and limited mobility after she was abused as an infant, according to her adoptive mother Dana Insley. She sees 13 specialists.

But a critical shortage of private-duty nurses in New Jersey means people like Abi often go without the level of care they need. Those nurses have been leaving the field for higher-paying jobs and better benefits at hospitals and other health care facilities.

I have periods with no coverage, said Tara Fiore, whose 19-year-old son Michael has a seizure disorder and quadriplegia cerebral palsy. The West Long Branch family has lost two nurses in the past 18 months. When you lose nurses, youre home trying to take care of your child, taking care of other children, trying to do your job and putting food on the table.

The private-duty nursing shortage is far worse than the overall nursing crisis affecting hospitals and nursing homes across the state and country, industry insiders say. It has prompted calls for Gov. Phil Murphys administration and the state Legislature to again bolster the reimbursement rate to help recruiters find and retain those nurses.

Private-duty nurses grew especially scarce as the greater nursing shortage deepened during the COVID-19 pandemic. Hospitals, also in need of nurses, raised wages and even added hefty bonuses to attract them from other health care sectors.

As a result, many home health agencies are turning away desperate families seeking services for children and adults with delicate medical needs.

None of my [member] agencies can take any more cases, said Nancy Fitterer, president and CEO of the Home Care & Hospice Association of New Jersey, a nonprofit trade group that represents home health agencies, health care service firms and hospices.

Bayada Home Health Care, the Moorestown-based agency that provides nurses for Abi, often has no replacements when her nurses call out sick or change jobs.

Abi, short for Abigail, is approved for 112 hours of private-duty nursing each week, according to a federal benefit administered by Medicaid.

She gets only 55 hours or so due to the staffing crunch, according to Dana Insley.

Nurse Rachel Watson interacts with Abi Insley, 10, at the girl's Sicklerville home. Dave Hernandez | For NJ Advance

The dearth of skilled nurses means Dana and her husband Bill Insley, who himself is disabled with a bone disorder that limits his mobility, must fill the void. Dana, in particular, often has to adjust her work schedule as a bookkeeper and administrator at Sonshine Christian Academy in Blackwood, a private preschool or miss work altogether to attend to her daughter.

But Dana, a former respiratory therapist, says she is not qualified to address Abis complex medical needs.

When a nurse doesnt come, Abi misses not only school, but all the therapies, which she gets in the school, and she misses being around her friends, said Dana, who became a foster parent to Abi in 2014 and adopted her in 2016. She had already adopted Abis twin sister, Gabi, in 2014. Missing school affects her wellness and development.

State Sen. Vin Gopal, D-Monmouth, introduced a bill earlier this month calling for a $4 hourly reimbursement rate increase. That would raise the hourly rate for registered nurses to $65 and for licensed practical nurses who account for the bulk of private-duty care to $53.

The reimbursement rate rose by $10 in 2020 and again by $1 this year. But the rate had remained stagnant for more than a decade before the pandemic, making a long-standing staffing challenge even worse, industry insiders say.

The base rate, if its say $61, is not all for the RNs salary, Fitterer said. That rate has to cover everything. Out of that, the agencies [cover] training, supplies, benefits and supervision.

In 2021, the annual mean wage for registered nurses working in general medical and surgical hospitals was $85,020, according to data from the federal Bureau of Labor Statistics. Home health care registered nurses received an annual mean wage of $78,190, despite sometimes possessing even more specialized skills.

Meanwhile, home health care licensed practical nurses annual mean wage was $52,670.

Bayada Home Health Care has seen the number of nurses it employs drop 30% since 2019, leaving it unable to cover hundreds of shifts, said regional director Ali Genther.

We have nurses leaving us for a considerable amount of money and sign-on bonuses that we cant even begin to compete with, she said. Nurses were asking for double what we would normally pay and got that in hospital settings.

So families are scrambling for help.

This one poor woman had two disabled children, and each one [was authorized] for 16 hours of care a day, so youre talking 32 hours a day of care, Fitterer said. She was working with six different agencies to try to cover the care for her kids.

That would have been uncommon a few years ago, but now its pretty common. Its absolutely heartbreaking for these families.

Families like the Insleys.

Dana Insley, Abi's mother, knows the difficulties that arise when the girl has to go a day without a nurse. Abi cannot go to school or receive therapy without her private-duty nurses.Dave Hernandez | For NJ Advance Worth their weight in gold

Abi sat at the kitchen table in the Insleys two-story colonial home on a recent Tuesday with a nurse who has known her since she was an infant.

Wearing a bright yellow Minnie Mouse T-shirt emblazoned with Never Stop Dreaming, Abi chatted with Rachel Watson, often stopping to giggle. Her eyes lit up earlier in the day when Dana Insley told her that Watson, who works on Tuesdays, was going to stop by later and tuck her into bed at 9 p.m.

Asked what her favorite hobby is, Abi blurted, Snuggles!

Watson flashed a broad smile, remembering when Abi feared being touched.

I love that she loves to snuggle, she said, as she fed Abi macaroni and cheese. I think, Yes! I did that!

Watson was just a nurses aide when she first took care of Abi, then only a few months old, at a pediatric rehab facility. Abi had been abused by her biological parents, Dana Insley said.

At 2 months old, Abi and Gabi were brought to an emergency room in South Jersey. Although Gabi recovered, Abi had far more serious injuries.

Gabi, short for Gabriella, had suffered fractured vertebrae, a fractured femur and a broken occipital bone which forms the base of the skull all in different stages of healing, Dana Insley said. Abi, meanwhile, had been violently shaken, Insley said. Her prognosis was bleak, and doctors twice declared her brain dead.

Abi would likely never see, hear, walk, talk, eat or breathe on her own, doctors said. Abi cried when touched a reaction to the abuse, Watson believes.

But during her visits, Dana Insley sensed the doctors were wrong.

We noticed there was more to Abi than what they said. When Rachel walked in, she would turn her head. She doted on Abi, she said.

Over time, Watson gained Abis trust, cooing, singing and talking to her. She got the little girl to accept and return affection.

Abi has since blossomed in a loving home that includes five other children and pets and the familiar presence of Watson.

Families that rely on private-duty nurses say care at home offers the kind of emotional stimulation and warm setting that health care facilities lack. At-home care is also less costly to taxpayers, advocates say.

Abi Insley, 10, waits for lunch at home in Sicklerville.Dave Hernandez | For NJ Advance

But its not just the highly specialized skills that make private-duty nurses so valuable, families say. Its the bonds thy form with their patients.

Abis nurses often join the family for meals, birthday celebrations and even vacations.

Theyve become a part of the family, Dana Insley said.

It hurts when they lose them. And the Insleys have lost several nurses in recent years to hospitals and other employers.

We usually cry when they leave, because they become such an integral part of our home, Dana Insley said. But I cant blame them if theyre offered a full-time job with money thats significantly higher.

But Watson has remained a familiar presence.

The Insleys ran into her one day after they were authorized to foster Abi. Watson decided she needed to join Bayada and provide in-home care to the girl.

The nurse also works bedsides at Weisman Childrens hospital in Marlton to make ends meet.

In hospital work I make more, Watson said.

Nurses are assigned to care for Abi on weekdays and some evenings, but weekends go uncovered because of the staffing shortage.

Like many families, the Insleys cant fathom a long-term facility as the answer to their struggles. They saw firsthand how Abis emotional and developmental needs went unmet before they gave her a home.

Theyre terrible for children, Dana Insley said. She didnt change developmentally the whole time she was there. It took years and years of speech therapy to help her talk. When we first brought her home, shed make a noise, Id make the noise back. Then Id make a noise, and she started making the noise back.

The Insleys have cobbled together a network to address Abis myriad medical and developmental needs.

They placed her in the HollyDELL School in Sewell, which caters to special needs kids. Classes are kept small Abis has only five students and children also receive therapy.

Nurses are key to providing continuity for kids like Abi, who see a dizzying array of specialists, Dana Insley says. Since they accompany Abi to school and medical appointments, they acquire an overview of the girls care and ensure nothing falls through the cracks.

The nurses are worth their weight in gold, Bill said.Hope and heartbreak

The recent bumps in reimbursement rates have somewhat helped the recruitment and retainment of private-duty nurses, experts say.

But the crisis is only getting worse.

There havent been nearly enough nurses to meet families ever-growing needs, according to Todd Thiede, the chief financial officer of Preferred Home Health Care & Nursing Services, an Eatontown-based home health care agency serving New Jersey, Pennsylvania and Delaware.

Weve never seen a greater demand for our services, he said. The supply-demand imbalance is the worst its ever been, without question.

State officials say they will continue to examine ways to address the shortage.

The governor recognizes the valuable services private duty nurses offer patients and families throughout New Jersey… Murphy spokeswoman Christi Peace said in a statement. As with other shortages of health care professionals, the Administration will continue to seek solutions to help build our health care workforce.

More than 20% of LPNs licensed in New Jersey work in home health, according to the 2022 Nursing Data and Analysis report by the New Jersey Collaborating Center for Nursing. There are more than 23,500 active LPNs in the state. Just under 6% of RNs work in home health out of the 137,838 active licensees.

But still, there arent enough.

The most recent state budget approved by the Legislature and signed by Governor Murphy included $210 million in new state and federal funding to raises wages for direct care workers, including raising the reimbursement rate for private duty nurses to as much as $61 per hour, a spokesperson for the state Department of Human Services said in a statement. These direct care workers are the backbone of New Jerseys care economy … as always we continue to consider options and ways to support these invaluable workers and thus the people they serve.

Until more help comes, residents like Anthony Devergillo will have to navigate the near-constant turnover that threatens his continuity of care.

The 29-year-old Bedminster man was born with Duchenne muscular dystrophy, a rare genetic and progressive muscle degeneration disease. He has lost several private-duty nurses to better-paying jobs.

Its been at its worst this year, said Devergillo, who works remotely managing communications for a rare disease pharmaceutical company.

Abi Insley, 10, smiles with her long-time nurse Rachel Watson, who has cared for her since she was an infant.Dave Hernandez | For NJ Advance

Devergillo, who lives with his parents, relies on nurses to get out of bed, dress, take medication and maintain his feeding tube. When an evening nurse doesnt show up, his father must sleep near him, repositioning him about five times throughout the night, Devergillo said.

I cant be left alone, he said, expressing angst over the burden he feels it places on his parents. If a nurse cant come, my mother has to take off work, or ask to work from home. When my father has to sleep downstairs near me, hes sacrificing his sleep. He needs to sleep to do his job the next day.

Devergillo is able to lead a productive life thanks to the private-duty nursing he is able to secure. It was an at-home nurse who encouraged him long ago to set ambitious goals and chase a career.

Michael Fiore, whose disabilities include blindness, recently lost a nurse who had been caring for him for more than a decade. She found it impossible to continue living in New Jersey on private-duty wages, Tara Fiore said.

She coordinated care for him, said Fiore, a project manager for an architectural business who also has a 15-year-old daughter, Ava. When she left, it was like cutting off my right arm.

It was heartbreaking for our whole family. My son adored her. And it was heartbreaking for her.

At one time, 12 nurses worked different shifts to care for Michael.

Now there are only six.

Enhanced government funding will help, Fitterer and Thiede said. But both stress that greater efforts must be made to encourage people to enter the field.

What we need to do is show nurses that there is a career path in home nursing, Thiede said. With home health care, you can pick your own schedule. You have one-on-one care. It can be a legitimate career path.

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Elizabeth Llorente may be reached at ELlorente@njadvancemedia.com. Follow her on Twitter @Liz_Llorente.