By Cara L. Coleman: For More Info, Go Here…
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 complex medical needs requiring technology, home health, and numerous interventions throughout her life.
Nearly 40 years ago, the Beckett family of Iowa worked to bring their daughter with multiple health care and technology needs home from the hospital to continue her care, leading to a fundamental and radical shift in Medicaid policies to favor home care as the norm for children and youth with special health care needs. This shift also gave rise to family-centered care and family-professional partnerships across health, educational, and other systems of care that further changed the landscape of how and where care is provided.
However, decades later, families still report feeling invisible: relied upon to provide care but largely ignored as equal partners and a vital part of the labor force. The home health care picture for children and youth with special health care needs is different by state, but the challenges that families identify are universal: a lack of home care and respite providers, lack of care coordination, non-existent communication between home health and other providers, unreliable providers, lack of privacy, long waits for durable medical equipment, poor quality of home care supplies, and problems with transitions, all of which impact a child’s quality of life and family well-being.