We Need In-Home Nurses to Get Our Babies Home!

Two Pennsylvania mothers share how more needs to be done to ensure all medically-complex families can stay together at home

Leena Stull is safe, healthy, and happy at home after spending her first 9 months in CHOP’s NICU

Parents of medically-fragile children face so many challenges throughout their lives, and 15-month-old Leena Stull’s parents fear for the future: As medical technologies enable hundreds of thousands of individuals live better, longer, healthier lives, they also create new challenges that the healthcare world must address. As the mother of a baby that has graduated from Children’s Hospital of Philadelphia’s (CHOP) NICU with home care nursing, Alexis Stull is advocating for Leena—and for the many children like her that have yet to be born.

Leena was diagnosed with IUGR in the womb and was delivered at just 27 weeks, weighing less than two pounds. She was diagnosed with bronchopulmonary dysplasia, meaning that her lungs are not fully developed and that she will need special medical care and equipment for the foreseeable future. She was immediately put on oxygen and ventilator support and placed in York Hospital’s NICU for more than 3 months, awaiting transfer to CHOP. Once a bed opened for Leena in CHOP’s NICU, Leena was there for 9 weeks until she and her parents were able to get to the Progressive Care Unit (PCU), where they were to be intensively trained on how to care for Leena medically for the remaining 3 months of her stay. “Because they know it would be difficult for us to find enough in-home nurses, they trained us to stay up for 24 hours straight,” says Alexis.

“Because they know it would be difficult for us to find enough in-home nurses, they trained us to stay up for 24 hours straight,” says Alexis.

Alexis and husband Daryl were completely trained by mid-June, but were unable to take Leena home until proper nursing coverage was secured for her in her hometown of Chambersburg in Mid-August. It took nine weeks and three home health care agencies, plus CHOP’s case management team, to finally find a nurse that could care for Leena in her own home.

Now home for six months, Leena is thriving alongside her caring parents and their two dogs, Gabby and Meeko. But finding enough in-home nurses to cover the shifts that Leena needs remains a challenge. “Leena is authorized for 112 hours of skilled in-home care per week, and we can’t access even close to that much.” Currently, the Stulls are functioning with one available night nurse, and many of their nursing shifts aren’t covered. “We have four nurses and no back-ups if there is a call-out. On nights when [night nurse] Jess isn’t here, I will stay up to monitor Leena until 3am, when I will switch with Daryl and sleep until 5:30 before it’s time for me to wake up for work,” explains Alexis. “The lack of nurses puts Leena in danger, and it also affects our ability to provide for Leena as fully-functioning parents.” 

“The lack of nurses puts Leena in danger, and it also affects our ability to provide for Leena as fully-functioning parents.” 

Part of the reason there aren’t enough nurses to be in home care is because of the lower wages in home care, and the nature of the job. PA hospitals can offer higher wages for RNs and LPNs, which creates a recruitment and retention gap for providers like BAYADA that can only compete for a small portion of the nursing workforce. Additionally, medically-complex clients like Leena—who has a trach, vent, and feeding tube—require special skills and one-on-one care. Typically, such skills can allow a nurse to make more in wages at a skilled nursing facility. However, home care providers are limited by the state’s Medicaid funding formula, which does not reimburse additional funds for highly-trained nurses that can take on more difficult, higher acuity cases.”

Gemma pictured here leaving Geisinger Hospital and coming home with mom & dad. Her shirt reads, “Peace out NICU, I am moving in with my parents.”
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Advocacy Key to Getting Hospitalized Children Home

Increased wages for pediatric home nurses can bring more hospitalized children back home to their parents.

ThinkAdvisor recently published an article about numerous cases across the country in which hospitalized children are cleared to return home but cannot due to the severe shortage of home care nurses.  This means that these children must live in the hospital or other institution until they can get the nursing care they need at home. This lack of available skilled nurses has created a huge financial and emotional strain on these children’s parents and families.

So where are these nurses? Making higher wages in other settings and industries. Even though home nursing is almost always less expensive than hospital care, private insurance rarely covers the service and Medicaid pays very little for it. This leaves few nurses willing to work for these low wages, especially when they can receive higher pay in other settings or other industries entirely.

But it doesn’t have to be this way! Increasing the reimbursement rate for in-home nurses is possible, and increased wages increase parents’ access to in-home nursing care for their child. In Pennsylvania, for example, BAYADA home health care employees, clients, and clients’ family members advocated for a pediatric nursing rate increase and received a $5 per hour increase. BAYADA saw open hours for the program decrease by nearly 50% for one of our largest payors.

A parent coalition in Massachusetts successfully advocated for increased reimbursement rates after over a decade of stagnant rates. But in Massachusetts, the increase still is not enough—parents say that the wages remain too low to attract and retain enough home nurses for their state’s medically complex pediatric population.

In Pennsylvania, Massachusetts and in other states around the nation fighting an in-home nursing shortage, advocacy is the key. It’s important that we raise our voices about this issue so that legislators can understand what home care means to parents of medically complex children.

If you are interested in finding out what you can do to help bring these children home, let’s chat! Shoot an email to advocacy@bayada.com.

Pediatric Nursing Shortage Featured in Two TV News Stories

Submitted by Laura Ness, Director, Government Affairs (GAO)

 It takes a special and highly trained individual to become a pediatric nurse.  You need to have the heart, be able to work independently and respond to the needs of your clients at a moment’s notice.  Because of the difficulty finding nurses to care for medically fragile children, families often have services from more than one agency, open shifts, or in some cases stay in the hospital longer than needed.

Recently, two regional news states featured two families whose children were not able to come home because of the lack of skilled nursing available.

Click the photos below to watch their stories.