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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How to Have a Successful PPT (Planning and Placement Team) Meeting

Parents: Homework is the key to a successful Planning and Placement Team (PPT) meeting.  If you do your homework properly, you will come to the meeting fully prepared and ready to do business.  You will feel empowered and you will become a better advocate for your child.

School Records

This is one of the most important things you can do to prepare for a PPT meeting: get a copy of your child’s school records. And read them.

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