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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Angela Ortiz: A BAYADA Home Health Care Parent’s Journey into Advocacy

Home care advocate Angela Ortiz delivers the keynote address at a legislative reception held in the Massachusetts State House.

Angela Ortiz is a fierce advocate for her medically complex daughter, Ayla, and for other medically complex children and adults across Massachusetts.

Earlier this month, Angela delivered her keynote address at the 40th Annual Legislative Reception held by the Massachusetts Developmental Disabilities Council and The Arc of Massachusetts.

Angela’s inspiring speech, delivered in front of over 200 people, including several state legislators and Massachusetts Governor Charlie Baker, was met with uproarious applause and overwhelmingly positive feedback.

Angela stated, “One mother shared with me that she used to have that fight and fire within her when her daughter was younger, but that her flames had since burned out. She shared that my speech really spoke to her and reminded her of how important it is to find it again. I hope that sharing my story and my journey will inspire others to take action… No matter how slow-seeming your journey may be, it’s important we remember why we advocate: To give a voice to those without one.”

Angela is the founder of the Massachusetts Pediatric Home Nursing Care Campaign that was launched in April 2016 to address the longstanding crisis families have been in struggling to find and retain Continued Skilled Nursing to properly care for their loved ones with complex medical needs at home.

Below is the full transcript of her keynote address.


*Arc/MDDC 40th Annual Legislative Reception Keynote*
Angela Ortiz
March 7, 2018

Next month will mark two years since I entered the State House with a group of parents from the Mass Families Organizing for Change Leadership Series. I was a mother desperate to improve the quality of life for my daughter, Ayla, who was just two at the time, and very sick.

I was drowning in my own worries and fears that came with her complex medical needs, but more so in the inability to access vital home care services she was approved to receive yet didn’t come.

Imagine being thrown into the deepest of seas and when you call out for help there aren’t enough life vests to go around or enough lifeboats to bring you and your family to safety.

I felt so powerless…until…I entered this building. It’s the day I became an advocate!

I was equipped with a vision for my daughter and new tools and the confidence to be a part of some kind of change to address a burning need that affects her life and so many other medically fragile children and adults in the Commonwealth.

That day ignited a flame so deep within me…and I’ve been “FIRED UP” ever since.

I’ll never forget a moment I shared with Ayla shortly after her heart surgery. I put my index finger in the palm of her tiny hand, we locked eyes seeing past all the tubing and drains, and she wrapped her fingers around it and squeezed with such intensity. Wow! At just 3 days old…my fragile and recovering newborn showed her FIRE and fighting spirit…that energy moved me. It strengthened me. It gave me hope that things would work out and be okay.

You see, we all have it in us…this FIRE!

And today, I want to remind you of that and call attention to it in hopes that each of you will set out to find what it is that sparks or rekindles the flame within you. Because when it happens, it’s an unstoppable force, you feel you can move through anything, no hurdle is too high no matter what your life circumstances are in that moment. You find a way! It’s so deeply rooted in love, you can’t help but burst into action and be a part of something bigger than yourself and your own lived experience.

There is no greater time to awaken your inner fire and unleash that advocate in you than when your life or the life of a loved one depends on it. And that time is now! 

I’m counting on all your flames, and more importantly, the disability community is counting on them because it’s in our collective energy, strength, and spirit where I believe the resolve lies as we blaze through every obstacle that aims to unravel and weaken the civil rights of people with disabilities that so many before us have fought so long and hard for.

Yes, we face an uncertain future, but the one thing we have control over is our own certainty of being there, in some way, to do something; to take a stand; to have a voice; to be ready to take action to defend the current laws and protections in place while we also continue to advocate and lay the groundwork for new laws and protections that keep us moving forward.

Each one of you has a place and purpose on this advocacy journey! Whether you are just stepping on it for the first time or you’ve been paving the way for years, as Ayla’s favorite song demands…“This little light of mine, I’m gonna let it shine”. DO JUST THAT…let your light shine, let it shine, let it shine.

You will be a moving force…we will be a moving force… and the future will be bright.

Thank You


For information about how you can begin your journey into home care advocacy, contact advocacy@bayada.com.

Additionally, follow our Facebook and Twitter to keep up with regular updates about how you can get involved.