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 drives 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.

 

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Champions for Coverage

Champions for coverage
Call to Action-Last 10 Days
This is it – the final countdown!! Less than 10 days remain before the Jan. 31 deadline for people to sign up for coverage.

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Barriers for Individuals with Disabilities in Getting Access to Healthcare

Even after children and adults with special needs have enrolled in a healthcare plan through a State or the Federal Marketplace, some are having difficulties accessing care.  In this blog, we summarize some of the obstacles and how they can be addressed.

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