NJ Mom Dana Insley: Support Children like Abi: Raise Wages for Nurses who Care for New Jersey’s Medically Fragile

NJ Blog Takeover: Dana Insley writes about her medically-complex daughter, Abi’s, story—and how NJ’s Private Duty Nursing (PDN) program has helped her overcome her circumstances.

Abi Insley relies on in-home nursing to stay safe and healthy at home

My 8-year-old daughter Abi had the unfortunate circumstance to be born into the wrong family. After a perfectly healthy start with her twin sister, they were saved from their parents’ abuse at two months old: broken, beaten, and shaken within an inch of their lives. After months in the hospital, we were able to bring Abi’s twin sister Gabi home to be adopted, while Abi’s condition continued: She was declared brain dead twice, was dependent on a ventilator to breathe, and we were told she was 100% deaf and blind, and that she would never eat, speak, or breathe on her own.

It took two years of fighting until we were finally able to bring her home with pediatric skilled nursing home care services—a benefit that she receives under New Jersey’s private duty nursing (PDN) program. Without this program, Abi would likely still live in a full-time skilled nursing facility today. It is because of these incredible nurses that Abi has been able to beat her original diagnosis—she is thriving at home alongside her parents, siblings, and nurses, who are like family to us. But every day remains a challenge—Abi needs round-the-clock attention for her medical complexities, and yet we are unable to fill all the nursing shifts that she is prescribed and medically authorized for. When even one shift is missed, that means that my husband and I, who are not medical experts, must act as her nurses. We often miss out on sleep, and on caring for our other children. We consistently struggle to fill five or more shifts every week, and this not only puts Abi’s health in danger, but also puts her at risk to end up back in a facility, or worse.

The problem lies in low state funding rates for the PDN program, which has not been increased in over a decade. In that same time frame, costs of living and wages for nurses in other settings, like hospitals and nursing homes, have steadily risen. Now, nurses are leaving the home care industry to take jobs at facilities where they can earn more and better support their own families. BAYADA and other home care providers struggle to hire and keep enough nurses to meet the demand, and as a result, families like mine suffer. 

Abi has overcome so much, but her abusive past has left her medically-complex for life. Amongst her myriad of health issues, she is legally blind, suffers from a rare life-threatening form of epilepsy, and she requires special medical equipment to eat. This is not a child that we can simply hire a babysitter for. Her high level of care and constant need for monitoring makes it impossible to have any sense of normalcy without capable & consistent nursing support.

Abi’s nurses and their presence in our lives, have impacted our whole family. The all-consuming task of caring for a medically fragile child requires specially-trained, consistent, reliable, skilled nursing care. Her incredible nurses have become an integral part of our home and of her care. Because of her nurses’ attentive care, many health issues that have arisen have been addressed early, rather than mounting into serious ones. Her nurses have been with her through countless sicknesses, surgeries, therapies, and more doctor appointments than we could possibly count. But as home nursing wages have remained stagnant over 10+ years, we can’t blame the nurses that have had to take full-time positions elsewhere. But we are constantly hoping and praying for some relief.

No child deserves to grow up in an institution.  My precious daughter brings many challenges to our home, but it would be heartbreaking to have to put her in a facility for lack of nursing support. I urge the state legislature to consider increasing funding to the PDN program. Competitive wages would bring stability to her home care nursing and allow our family and families like us to stay together and thrive. Please choose to make a difference.

-Dana Insley, Sicklerville

About the NJ Blog Takeover: For the next few weeks, Hearts for Home Care will be featuring posts authored by NJ families affected by the state’s shortage of in-home nurses and home health aides to showcase the need for increased funding for New Jersey’s Private Duty Nursing (PDN) and Personal Care Assistant (PCA) programs. For more information on how you can get involved and let your elected officials know why increased in-home nursing availability is important to you, email advocacy@bayada.com

Why Client Advocacy Matters

Submitted By Rick Hynick, Director, Government Affairs, Client and Family Advocacy

At BAYADA, we often see that many of the government reimbursement rates for programs such as Medicaid are low and have not been increased in long periods of time.  The difficult effect this has on our revenue then carries over on our ability to offer pay rates that are attractive to nurses and aides seeking employment.  They sometimes accept other offers because of this, making recruitment a challenge and also making open shifts more prevalent.

There are ways that we can work together to combat this challenge.  Our service offices have wonderful relationships with our clients and family members. It is these people who we provide services to who have the best understanding of what it is like to live minute-by-minute with complex medical needs.  Government Affairs and service office staff working together have the best opportunity get the voices and real-life experiences of our clients out to our legislators who can make a difference.

Our legislators have the responsibility to represent the people who live in their districts and also to control the reimbursement and regulatory matters of most of our government funded programs. Our goal is to show the true needs that exist by getting voices of the clients to them so when it is time to vote or make a decision about an important topic such as reimbursement, they will do so with the best information possible at hand. -Over time, this will lead to higher reimbursement rates and better living wages for our staff allowing us to better align with The BAYADA Way and help more people.

A BAYADA client advocates for better HHA wages with legislators and families looking on.

The daughter of a BAYADA client and a BAYADA nurse at an advocacy event.