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 in Delaware: Super-mom Kateri Morton Advocates on ABC and in Dover

Mom Kateri Morton (right) was featured on ABC-47 with son Joey (left) to advocate for increased funding for DE’s PDN program

Hearts for Home Care super-advocate and super-mom Kateri Morton was recently featured on ABC-47 alongside her 8-year-old son Joey and his long-time nurse Diane to advocate for better state Medicaid reimbursement rates. To date, Delaware has not raised reimbursement rates for the state’s private duty nursing (PDN) program in 16 years. As funding for this important program falls behind rising costs of living and providing healthcare services, it’s families like Kateri’s that ultimately suffer.

“Most of our nurses have either left or stopped working in that area because of their own health factors. Or they had to go to different jobs for employment,” says Kateri. Home care agencies rely on the state’s reimbursement rate to provide nurses’ wages, supplies, training, and benefits. The 16-year stagnation has driven nurses to seek employment in hospitals and other facilities that can afford to pay nurses more in wages. As agencies struggle to recruit and retain enough caregivers, families experience more unfilled nursing shifts, sleepless nights, and struggles maintaining employment.

The COVID-19 pandemic has only exacerbated the issue, as staffing issues have limited nurses’ ability to care for high-risk clients and as precious personal protective equipment (PPE) has raised providers’ everyday costs. Nurse Diane says, “We’re struggling. We can’t retain our nurses, and with COVID going on, more and more families are being touched by home care nursing.”

One of the most compelling aspects of the reimbursement rate issue in Delaware and across the US is that increasing families’ access to home care would save state Medicaid programs significant funding dollars that currently go toward care that residents receive in ERs, hospitals, and other facilities.

The key to getting this issue on the top of legislators’ minds is to increase the number of affected family members who speak out and advocate on behalf of themselves and their children. Kateri’s network of DE moms and other guardians have shared their unique stories and struggles with one another, and with Delaware’s decision-makers. Recently, Kateri secured meetings with Delaware’s Medical Advisory Committee and the Department of Health and Social Services. “Advocating for Joey has empowered me. Without nursing, I can’t provide financially, physically, and emotionally to my fullest,” says Kateri. “As mothers of medically fragile children… when there is an opportunity to show an elected official how important this care is, that story paints a picture that a million facts and statistics cannot.”

Kateri recently created a Facebook group for DE families interested in advocacy. Check out her group and Hearts for Home Care to join others in advocacy opportunities today!

2019 National Ambassador of the Year: Shelby Myers

Advocacy became part of the culture at BAYADA Home Health Care a little over 10 years ago out of a need for a collective voice to speak on behalf of our clients, families, and field staff who are impacted every day by home care. As Chief Government Affairs Officer Dave Totaro, likes to say, “If you want to go fast, go alone. If you want to go far, go together.” And that’s what we did. We banded together a voluntary group of advocates within the company with the single purpose of acting as a voice for those in the home care community that may not have had the opportunity otherwise ─ they are our Hearts for Home Care Ambassadors. 

Our ambassadors serve as the liaison between the Hearts for Home Care advocacy team and their co-workers and home care community. Their primary responsibility is to develop and foster relationships with their direct-constituent legislators to spread awareness and advocate for better wages for field staff, more approved hours for clients, and the overall governmental investment in the home care industry. Year after year, our ambassadors go above and beyond to ensure legislators are aware of the crucial importance of home care for so many families across the country. 

A few weeks ago, Hearts for Home Care presented the 2019 National Ambassador of the Year award to Shelby Myers for her role as a dedicated, passionate, and influential ambassador. As an ambassador in New Jersey, Shelby’s advocacy efforts were abundant ─ She developed her own platform to share client and employee stories through a podcast, Clayton’s Voice, she arranged home visits in which she invited legislators into the home of a client to showcase the everyday process of care, she arranged legislative roundtables with office staff and key decision makers, and she also met with many legislators individually advocating on her own.  For these reasons and many more, Shelby was the clear choice as the 2019 honoree.

Shelby Myers:

“This award is truly a culmination of efforts by so many individuals. Although I humbly accept it, by no means am I the primary recipient – that honor should be given to the families I was privileged to represent. Their powerful and sometimes heartbreaking stories, were the driving force behind legislation in New Jersey. I have no doubt that their voices were echoed in the ears of our lawmakers as they were voting on important home care legislation. Our role as ambassadors is essential to the well-being of our clients, families, and the compassionate field staff that takes care of them. Hearts for Home Care offers something that many of them have lost – hope. H4HC shifts the impossibility of their situation to a probability of hopeful change. Not only can we evoke change legislatively, but we empower families by showing how even the smallest of voices can create the largest of changes ─ I truly held this privilege in the highest regard. As Emerson so eloquently expressed in his description of success, “To know even one life has breathed easier because you have lived. This is to have succeeded!” I feel enormously blessed and grateful for every family I met, every story I heard, and every hand I held this past year. Additionally, I want to thank all of the BAYADA employees who gave me the opportunity to meet their clients and families, to the Hearts for Home Care team for the advocacy experiences you foster to elicit change, and to all of my mentors – thank you for changing my life.”

South Carolina Families Struggle Due to Lack of In-Home Nurses

William Walker is pictured with his parents Christina and Aaron. The Walkers are looking for an in-home nurse so that they can finally bring William home.

Just like many new parents across South Carolina and the US, Christina and Aaron Walker are excited to bring their newborn baby boy–William–home from the hospital. But unlike most other new parents, they can’t. That’s because William was born a little more than three months early, with medical complications.

But it’s not the complications themselves that have restricted William to the NICU–but rather, the lack of in-home nurses in the state. Baby William is medically cleared to go home, but the hospital cannot discharge him until an in-home nurse is available to care for him at the Walkers’ Bradley residence.

“The State hasn’t increased funding for the Private Duty Nursing (PDN) program in more than a decade. As a result, agencies that hire and provide in-home nurses to families like the Walkers can’t recruit and retain enough nurses to keep up with the demand,” says BAYADA Government Affairs Director for South Carolina Melissa Allman.

In the past decade, costs of living have gone up tremendously, and so home care agencies are struggling to pay nurses fair wages and stay sustainable as the funding has stagnated. PDN program funding must cover nurses’ wages–plus training, benefits, supervision, and supplies. Rates are so low, that many agencies have even left the state entirely.

Moreover, nurses are attracted to institutions and other settings–such as nursing homes, hospitals, and doctors’ offices–where they can earn more in wages. “The backwards part is that the state can save money and keep families together by keeping medically-complex residents at home and out of institutions. It’s a win-win,” says Melissa.

Christina and Aaron are celebrating every milestone that William reaches in the hospital. At five months, they are more than ready to take their baby boy home. Children deserve to grow up at home among their peers and loved ones. But if the state does not address PDN program funding in a way that ensures agencies can stay sustainable and raise nurses’ wages, then there will be more cases like William’s, where parents must continue to visit the NICU or another facility to see their son or daughter.

Read more about William’s journey here. If you know of a qualified nurse that is interested in caring for William, contact BAYADA Home Health Care at 864-448-5000. If you would like to learn about ways in which you can advocate for better nursing wages in South Carolina or elsewhere, contact Hearts for Home Care at advocacy@bayada.com

States Struggle to Recruit and Retain In-Home Nurses Due to Low Reimbursement Rates… But Advocacy Can Help

Home health care companies around the country struggle to recruit and retain enough qualified workers to support the growing number of children, adults and seniors that want to be cared for in their own homes. Recruitment and retention issues stem from a number of reasons, including the nationwide nursing shortage, low US unemployment rates, and inadequate Medicaid reimbursement rates that leave home care providers in a position where their wages cannot compete with those of other settings and industries.

BAYADA Home Health Care was recently featured in a Wall Street Journal article for the company’s efforts in solving for this by recruiting nurses from Puerto Rico to fill open nursing positions in Minneapolis. The island’s unemployment rate, currently at 10.8% is much higher than that of Minneapolis, which is currently listed at 2.4%.

A 2.4% unemployment rate is low even compared to the US rate, which is currently at a 17-year low of 4.1%. This low unemployment rate is compounded by the fact that in many states, Medicaid reimbursement rates are too low for home care providers to be able to recruit and retain workers, who can be paid a higher wage in other settings, like hospitals, and industries, like fast food and retail.

And it doesn’t end with a lack of workers for home care providers. This lack of caregivers can lead to an access to care issue in which individuals who can be cared for at home are left with no option but to receive care in a hospital or institution. Finding qualified caregivers is often cited as home care providers’ top challenge, and future estimates show that demand for in-home care will continue to grow due to the aging of baby boomers at alarming speeds.

What can you do to help? Share your voice. Reimbursement rate review and adjustment decisions are generally made in state capitols when legislators determine that such a need exists. This need must be communicated to legislators so that they understand the pressing nature of the issue and what could happen to the state’s Medicaid population if the issue is not addressed.

We can help you reach your legislators to let them know what increased reimbursement rates mean for you and your community. And if you would like to make an even bigger impact, consider meeting your lawmakers in-person at our Lobby Day. We take care of the scheduling and preparations- all you need to do is show up and share your voice. Upcoming Lobby Days are as follows:

Minneapolis, Minnesota: 3/6/18
Dover, Delaware: 3/14/18
Columbus, South Carolina: 4/4/18
Harrisburg, Pennsylvania: 5/22/18
Raleigh, North Carolina: 5/30/18
New Jersey: District office visits 4/20-5/4/18
Maryland: TBD

Contact Rick Hynick to find out what you can do to advocate, whether it be sharing your personal story, contacting your legislators, or participating in an upcoming state Lobby Day!

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.