Not Just Along For The Ride: Families Are The Engine That Drives Pediatric Home Health Care

Families of children and youth with special health care needs and disabilities are the engine that drive home- and community-based services for their children. They are not passive observers in the pediatric health care system; they become specialists in medical care, advocacy, and public health, uniquely qualified through their lived experience of providing care across multiple systems to their child—a “certification” only they can hold.

I know because I was the mom, primary caregiver, chief communicator, and care coordinator for one of my daughters, Justice Hope, before she died at the age of 11. Justice was born with congenital anomalies that did not tie up neatly into one overarching diagnosis but that led to multiple disabilities and many...