Guest Commentary: For sake of the medically fragile, keep nurses in home care


Karen James is the mother of a medically complex child. She and her family reside in Hockessin.

Within a month of my daughter, Natalie’s, birth, my husband and I learned she had a genetic condition called trisomy 9 mosaicism — a complex medical diagnosis that impacts her physically and intellectually — and requires her to have round-the-clock skilled nursing care.

While we were initially concerned that her needs would require her to live outside of our home in a skilled nursing facility for children, we were relieved to learn that Natalie would be able to grow up at home with us, thanks to private duty nurses who take care of her in our house.

Such nurses are provided by a state-based program that allows children and adults with medical needs to live at home with skilled nursing care delivered to them in their own homes.

Natalie is now 12 years old and has been able to live at home, thanks to her team of dedicated in-home nurses. Natalie’s nurses also accompany her to school. Without them, she is not able to attend school and receive her physical, speech and occupational therapies that help her thrive.

But, sadly, the future for Natalie and hundreds of children and adults with complex medical needs, is uncertain — and there’s no relief in sight: There’s a tremendous decline in the numbers of professional nurses and caregivers who choose to work in home care. The bottom line is this: Delaware’s home care nurses need to make a fair wage, and home care programs need better funding and support from the state.

Before 2022, Delaware’s home care programs had not seen any funding increases in more than a decade. This left agencies that provide home care services from being able to compete with the state’s nursing homes and hospitals, which have the resources to pay caregivers more in wages. The state has recently made much-needed investments to these programs after COVID-19 put a spotlight on this essential, patient-preferred and more cost-effective care option. But proper maintenance of the state’s home care funding formula is critical: As costs of care and inflation have continued to rise, for the sake of thousands of children and adults like Natalie, it’s critical that Delaware makes a further investment in these important programs.

Home care is best and least expensive option

Just recently, Natalie’s three-day-a-week nurse left to become a traveling nurse. Her departure meant that Natalie missed 15 days of school in one month. There’s a domino effect, too: I also can’t work a full-time job because I have to make up the gaps and be Natalie’s full-time caregiver — instead of focusing on being her mom. Natalie’s 16-year-old sister has been trained on how to use the suction and oxygen machines for Natalie, so she can help me take care of her sister when there’s no nurse available for days or weeks. Parents and families walk the line between being mom, dad or sibling versus acting as their child’s nurse.

Home care is not only the best option for most children like Natalie, but it’s the least expensive option for the state — which would end up paying for much costlier care for Natalie if she were in a long-term care facility.

Through the pandemic, we have collectively learned the value of keeping our loved ones at home. But, as a society, by paying home care nurses the least, we are telling them that they are less valuable than their counterparts that work in facilities. Now is the time to flip the script and really prioritize home as the best setting for health care delivery.

The home care workforce shortage is solvable, as is the ensuing access-to-care issues faced by families like mine. I urge Delaware’s lawmakers to increase funding for home care. Better, more adequate funding would ensure that caregivers can make a more competitive wage in home care and would ensure that more quality, reliable nurses are attracted to the field.

I encourage policymakers and legislators to visit the home of a medically fragile resident in their community to see how important it is for their health and well-being to be at home. As society recognizes the importance and urgency of being cared for at home, so, too, must lawmakers act to ensure that in-home caregivers feel valued and incentivized — and that families can live and thrive together in a safe and healthy manner, in their own homes.

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