PPCC Care Plan Book and PPCC Lightning Bug App

The PPCC Care Plan Book is an organizational  tool and reference guide for families and caregivers as they manage all aspects of care for a child with medical complexity.

Click HERE for the Care Plan Book

PPCC’s FREE Lightning Bug app was developed through a collaboration of  web developers, medical professionals, parents, and caregivers to help manage day-to-day medical details for the child with medical complexity. We invite you to download and utilize this free resource.

Click HERE for the Lightning Bug App

PPCC Contact Guides

• As you return home, it may be beneficial to alert community service providers of your child’s special needs. In case of an emergency, the notice will help service providers including EMS, police, fire departments, and utility providers of your child’s conditions, needs, and ways of communication.
• At the link, you will find sample letters you can use as a guide when you write to your community service providers.

Click HERE to download letters from the PPCC Care Plan Book

Conversation Project

The Conversation Project aims to guide conversations about healthcare wishes. These guides can help start conversations and take the stress out of the equation. Some of their free guides are attached or you may find their additional resources on their website at the link.

Click HERE to learn more

Voicing My Choices

A planning guide for adolescents and young adults to voice their preferences in treatment

Click HERE to download the guide

Courageous Parents Network — Advocating for Your Child

This resource gives tips on how to use your voice to communicate goals to help deliver the best care.

Click HERE to learn more

Living Well With a Serious Illness by Robin Bennett Kanarek

This book is a practical guide for understanding how palliative care can improve quality of life for patients and their caregivers.  
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Click HERE to order

Know your Rights Links

• Americans with Disabilities Act
• Individuals with Disabilities Education Act

Family Voices Website

Family Voices is a national family-led organization of families and friends of children and youth with special health care needs (CYSHCN) and disabilities.
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Click HERE to learn more

Polst: Portable Medical Orders

The POLST program encourages patients and their healthcare professionals to talk about the treatment patients want as they decline in health. Treatment choices can then be documented as medical orders on a bright pink form that follows patients across care settings

Click HERE to learn more