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 is HealthChoices Delayed?

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

As many may know by now, the Department of Human Services recently announced they would delay and stagger the implementation of the new HealthChoices contracts. This was due to several bid protests and court battles currently working its way through the system.

This pushes the implementation to January of 2018.  The current plan is to rollout the new HealthChoices contracts:

January 2018                Southwest & Northwest

March 2018                   Northeast

July 2018                       Southeast

January 2019                Lehigh/Capitol

This will make the staggered roll-out similar to the Community HealthChoices implementation plan.

But why the delay?

Simply put, there are billions of dollars at stake.  The total funds available for HealthChoices are  estimated to be over $12 billion. So those organizations that do not win bids miss out on one of the largest state contracts in the US.

Number of Regions in Old ContractNumber of Regions in New Contract
Centene33
Health Partners12
United50
UPMC for You54
Keystone11
Gateway25
Aetna10
AmeriHealth32

This could also be one of the reasons why DHS is staggering the roll out. With the staggered roll out the Lehigh Capitol region transitions in January of 2019. This means that United and Amerihealth will get to keep their consumers for almost two years longer than originally anticipated.

We are still expecting court challenges which could delay the implementation further.

For your reference, I have included charts which details what MCOs were awarded what regions and the number of regions they were awarded.

GAO continues to monitor this situation and will update the pediatric leadership as more information becomes available.

 

 

 

 

 

Bills in Motion at the NC General Assembly

Submitted by Lee Dobson, Area Director, NC Government Affairs (GAO)

  1. Certificate of Need (CON) under Attack  In the course of 48 hours 4 bills related to CON were filed to either eliminate or modify CON law. As any changes to CON will negatively impact our existing Medicare offices, our GAO Advisory Council identified protection of CON as a 2017 legislative goal. GAO continues to meet with the various bill sponsors to educate them the negative impact such changes would have on the home health industry. We continue to work behind-the-scenes to prevent their enactment.
  2. Medicaid Reform under Review  While the Medicaid Reform 1115 c Waiver application is being reviewed by the Centers for Medicare & Medicaid Services (CMS), there is discussion of a new model emerging from Governor Roy Cooper’s office in conjunction with the General Assembly. GAO continues to work with legislative leaders and the department to ensure quality access to care exists in whatever model emerges.
  3. Trillium LME/MCO Proposed CAP-C/DA Pilot  Senator Michael Lee sponsored a bill to allow Trillium Local Management Entity/Managed Care Organization (LME/MCO), a managed mental health, substance use and intellectual/developmental disability payor, to administer a CAP-C/DA pilot in the coastal area. Analysis of the bill indicates this pilot would have a negative impact on recipients. GAO is working with the bill sponsor to explain the pitfalls of moving coastal recipients into a pilot when these individuals are currently transitioning into a new waiver.
  4. Opioid Bill’s Unintended Consequence  Representative Gregory Murphy sponsored a bill to tighten opioid prescriptions. While we support increased oversight for misuse of prescriptions drugs, the bills language, in its current state, will create a safe-haven for pillpushers. AHHC is taking the lead to work with the bill sponsor to modify the language to eliminate the loop-hole and craft a meaningful bill, as intended.

Breakfast With A Purpose in North Carolina

Submitted by Lee Dobson, Area Director, NC Government Affairs (GAO)

To commemorate the start of the 2017-2018 regular session, our staff attended an annual breakfast in Raleigh on January 11.  As hosts of the event, staff had a 30 minute private mingle with members.  We were able to thank lawmakers for the nursing increase last year, and to discuss the less-than-adequate aide rate and the overly burdensome and varying administrative requirements of Local Management Entity/Managed Care Organizations.  Further, Senator Shirley Randleman, a home care supporter, thanked us for keeping her in the loop on a constituent issue where a medically fragile child is in jeopardy of losing his private duty nursing.  To which Randleman said, “For the insurance company to say this baby is stable and doesn’t need home health care is unbelievable.”  She is willing to help in any way possible.  Events like this allow us to continue to build relationship with lawmakers.  Click here for photos.   Special thanks to the following staff members who represented BAYADA:

  • Chad Shore
  • Dena Hinkle
  • Donna Heatherly
  • Elizabeth Goad
  • Trip Smithdeal

Photo: BAYADA advocates at the Women in Politics breakfast on January 11.