What Is the Cerebral Palsy Family Network Care Guide?

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The Care Guide is a tool for organizing and tracking all the health care information needed by medical staff and caregivers of a child with special health care needs. It’s packed with forms to record and track your child’s important health care information such as doctor’s visits, supplies, medications and more. The notebook is designed so that pages can be filled out and updated right on your computer screen. The pages can then be saved or printed so that home health nurses and family members will have your specific instructions and contact information at their fingertips.

Download a Care Guide

How Will it Help Your Child?

When your child has CP, you are dedicated to helping them achieve the best future possible. Thankfully, there are countless available treatments, specialists, medicines, and therapies that can help them live a life that’s as stress free and comfortable as possible.

In addition to keeping track of the many opportunities that can help your child reach their potential, you also need to continually monitor your child’s medical journey, growth and development, and challenges along the way. It’s a lot of information to keep track of—so much that it can often feel overwhelming. But even though raising a child with cerebral palsy often requires extra consideration and thoughtful planning, it doesn’t have to be difficult.

The goal of our Care Guide is to make finding and using this information easier. It’s a one-stop resource for all the information you need to carefully monitor and plan your child’s health and growth for a positive future. From forms that track doctor’s visits and appointments to logging supplies, medications, hospital stays, and more, the Care Guide keeps all of this important information in one place that’s easy to retrieve and share with others.

The Care Guide also serves as a “communications guide” for other caregivers and family members who interact with your child. From family members and home health nurses to physicians and school administrators, everyone will have important instructions and contact information at their fingertips. This centralized plan streamlines all the important information and players involved in your child’s CP treatment plan, ensuring that your child can live the best life possible.

What Types of Information Will it Help Organize?

The Cerebral Palsy Family Network Care Guide is an invaluable resource that combines all of the medical and personal information regarding your child’s health and wellness. The guide makes it easy to keep track of appointments and medication, notify school administrators or doctors, and plan for the future. You’ll find forms for a variety of information including:

Emergency Information

  • Contact information for primary care doctors and specialty physicians
  • Records of past medical diagnoses, procedures, and physical exams
  • History of immunizations

Medical/Health Care Team

  • Local hospital and clinic information
  • Pharmacy records and contact information
  • Contact details for:
    • Public health providers
    • Dental care providers
    • Home nursing providers
    • Therapy providers or agencies
    • Family support providers
    • School contacts
    • Special transportation services
    • Child care providers and agencies
    • Respite care providers and agencies
    • Resources for children with special needs, including national organizations


  • Medications list
  • Equipment list
  • Supplies list

Appointments/Tracking Logs

  • Appointment tracking for medical visits and hospital stays
  • Logs for lab work, tests and procedures
  • Growth and diet tracking

Medical Bills/Insurance

  • Medical bills tracking logs
  • Insurance information and funding sources

Family/Child Information

  • A care profile to give to providers, medical professionals and school administrators that gives in-depth information regarding the following:
    • How your child communicates with others
    • Your child’s likes and dislikes
    • How your child reacts to stress and the best methods for helping comfort
  • Family profile
  • Your child’s contact list

Everyday Living Instructions

  • Child’s everyday activities
  • Care summary daily schedule
  • Summary: Nutrition/gastroenterology/respiratory
  • Summary: Sleep and downtime/playtime

Disaster Preparedness

  • Comprehensive planning checklist in case of a natural disaster or other event

Download a Care Guide

Was Your Child's CP Preventable?