Indiana families affected by pediatric home nurse shortage - IndyStar

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Throughout the pandemic, Ed Curtis and Regan Zwald shouldered the burden of care for their 11-year-old daughter Alia, who has complex medical needs.

Remote work allowed them to tend to the needs of their daughter around the clock. She has a rare neurological genetic disorder called Rett syndrome that leaves her unable to walk, talk, or care for herself.

But as life began to return to a semblance of normal and in-office work and afterschool activities for their two other children resumed, Curtis and Zwald realized they needed help to juggle all their responsibilities. So Curtis started calling Indiana home health care agencies, asking if they could provide a nurse.

He called one agency, but no one there could help. Then another. Another, another and another.

Within two weeks, Curtis had contacted 79 agencies. Not a one could help. They just didn't have any available nurses.

A shortage of pediatric home nurses

Curtis's experience reflects a reality all too familiar to families with children who need special medical care around the state. The pandemic has only exacerbated a pediatric home-nursing shortage that has existed for years.

By providing unskilled, exhausted parents with help from nurses or aides who have training in how to tend to children with special needs, home health care can help prevent emergency room visits and hospitalizations for these children. For infants with medical needs, this care may mean the difference between extended costly neonatal intensive care unit stays and heading home.

State officials say that they are exploring ways to improve Indiana's home health program and hope to have solutions in place by late next year, which could include increasing the reimbursement rates for home health aides and nurses.

With long waiting lists for nursing care, families often have to scramble to ensure their children receive the care they need. In many families, one parent has to quit work and quickly master nursing skills to look after their child full time.

"They say they put you on a waiting list but you never hear back from them," Curtis said. "The nurses aren't unavailable. They simply don't exist."

Several factors lead to nursing shortage

As is true in so many other aspects of life, it all comes down to money. Home health agencies pay far less than other employers, such as hospitals or travel nurse agencies.

Indiana's Family and Social Services Administration oversees the Medicaid program that makes it possible for children such as Alia to receive intensive nursing care without bankrupting their families. But the problem, many home health care advocates say, is that the funding the state provides does not provide sufficient incentive for home health care agencies to recruit and retain nurses of all skill levels.

This problem became even more acute during the COVID-19 pandemic when early retirements and resignations created an overall nursing shortage that led to hospitals and travel nurse agencies to offer significantly higher salaries than home health nursing in the hope of meeting their own staffing needs.

"Home health is not able to compete with our facility counterparts," said Evan Reinhardt, executive director of the Indiana Association for Home and Hospice Care. "That's definitely a piece of the puzzle."

While no entity keeps track of how many families who need care lack the benefit, Reinhardt said that metrics suggest the current situation is as bad as it's ever been.

Reimbursement rates for home health care have not changed significantly over the past 10 years, Reinhardt said. Although last year the state increased rates slightly, the addition only moved the "needle a little bit," he said.

Some agencies find the situation untenable, Reinhardt said, adding he knows of at least two fairly large home health care companies that are opting to leave the Indianapolis market.

Agencies do what they can to increase staff so when the calls come in they have a better shot of matching families with nurses.

Tendercare Home Health Services has two recruiters, does promotional events, and takes out ads on job boards as well as Google advertising, said Eric Deitchman, co-owner and director of business development of the Indianapolis based company.

Despite all this effort, the company, which serves about 250 patients, has another 85 on its waitlist. When families call to ask about a nurse, Deitchman can only promise that he's aware of their plight, but the fact is he just doesn't have enough staff.

"We may not have a nurse for you now but we'll be fighting to look for one for you," he said. "This is an unfortunate conversation we have to have on a daily basis."

Medicaid reimburses about $49 for registered nursing care and $34 for less skilled care, Deitchman said, and that must cover not just the provider's hourly rate but also agency overhead and insurance costs. Registered home health nurses wind up making about $30 an hour, while a typical rate for licensed practical nurses, who provide more basic care and do not have as extensive advanced training as registered nurses,would be closer to $22 an hour, he said. By contrast, a nurse who used to work for him signed a travel nursing contract that paid $160 an hour.

Logan Jost, director of the Indianapolis pediatric office of Bayada, a home health care company headquartered in Moorestown, N.J., has a list of about 60 to 70 families who have called for help who he has not yet been able to match with a nurse. The wait for a match varies widely depending on the family's need and location, with the nurses in shortest supply being those who will work at night. Finding nurses for families who live in remote areas is also a challenge.

"The demand is greater than the availability," Jost said.

Knowing the situation, some families have given up all together on the idea of finding care for their children with special needs.

Fort Wayne resident Carrie Le's 7-year-old son, Hawk, has a kidney disorder and eats food through a g-tube. For the past six years, home health care nurses have helped Le and her husbandcare for her son. That's been helpful because their 10-year-old son Jet has cerebral palsy and also needs a lot of attention.

This year, their nurse quit without warning. They haven't been able to find a nurse since, which means they cannot both accompany their older son to appointments or spend time together focused on his needs.

"We were left in the lurch," Le said.

'Roadmap' for solutions may be coming

State officials recognize the current system could use an overhaul to address the home health nursing shortage.

Working with the Indiana Department of Health and the Indiana University Bowen Center for Health Workforce Research and Policy, FSSA recently launched a "home health redesign project," said FSSA acting communications director Marni Lemons.

By the end of the year, the project aims to produce a roadmap for home health, including reviewing reimbursement rates for nursing. The plan is to implement the new system mid to late next year.

In another move to address home health nursing services, FSSA has doled out more than $176 million in federal money from the American Rescue Plan of 2021 to home and community-based services providers that they have spent to recruit staff with bonuses and benefits, Lemons said.

However, Indiana has a long history of lacklusterspending on facility care that may prove difficult to overcome. Indiana Medicaid spends about $2.67 billion annually on nursing facility care, according to the Kaiser Family Foundation. Only two other states — New York and California — spend more than Indiana. But, both those states spend far more on home health and personal care than on facility care. Indiana, on the other hand, spends less on such care than on facility care, just under $1.8 billion.

The lack of available home health care can put families in a bind.

Before the pandemic, a nurse met Anne Wilson's son Miles every afternoon at his bus from North Central High School and spent the next few hours with the boy, who has complex cerebral palsy, is nonverbal, and dependent on others. This allowed Wilson, a Butler chemistry professor, and her husband, a graphic designer, to work full-time jobs.

When school went remote because of COVID-19, the nurse came to the house on school days. But when Washington Township resumed in-person classes in the fall of 2021, the nurse retired. The home health agency Wilson had used could not find a replacement.

Her husband wound up quitting his job and finding another position that allows him to work from home. The family still had about five hours of home nursing care a week, which they used to go to the grocery store and attend their younger son's cross country meets.

About a month ago the agency which provided them with nursing care closed its office and Wilson finds herself at least temporarily without any care for her son, who recently turned 21.

"I think we don't value home health care workers the same way we value other workforce members," Wilson said. "I think it's very difficult to get good people across the board in these kinds of service jobs, we don't pay them anything."

'Living day by day'

Alia's parents are just hoping that they can receive some care soon to help them tend to their daughter's needs, which have grown more complex as she has grown older. For now, said Curtis, they schedule any activity other than caring for her around her days in school at Northview Middle School.

One of them must always be with her, to help with feeding, bathing and going to the toilet. They have to juggle this along with parenting their two sons, a high school sophomore and second grader. "I try not to look into the future very much," Curtis said. "It's just living day by day."

They try not to think about what they will do if Alia's needs increase as she grows older and they still have not secured professional help. Zwald, who works as an advocate for families like her own, has heard of at least one family where the parents could not bring their newborn home from the hospital because they needed nursing help and there was none available.

"The state's promise to families is that we don't have to put our medically complex family members into nursing homes," Zwald said. "But for a lot of reasons the state has failed their end of that promise."

Contact Shari Rudavsky at shari.rudavsky@indystar.com. Follow her on Twitter @srudavsky.