Building Your Care Notebook

building your care notebook
What is a Care Notebook?

A care notebook has multiple uses. A major role of a care notebook is to help parents/caregivers maintain an ongoing record of their child's care, services, providers, and notes. This care notebook is a great tool in empowering families to become the experts on their child's care. It is also a way to maintain the lines of communication between the many providers and services that help care for a child and their family.

Health professionals recommend that parents/ caregivers bring a care notebook to all medical appointments, therapies, care conferences, on vacations, etc. Health professionals can encourage the use of these notebook by either having them available at the first office visit, upon discharge from the hospital or in the waiting room on a resource table. This notebook should be a team responsibility. Office staff should offer families assistance in filling out the various forms. Medical offices can copy visits, check ups, immunization records, specialist reports, clinical pathways, and give them to families to insert into the notebook.

Why Build Your Own Care Notebook?

A care notebook is an organizing tool for families and will help you keep track of important information. Care notebooks are very personal to your child and ideally should be customized to reflect your child's medical history and current information. For this reason, this Web site has been developed to allow you to build a care notebook that best meets the need of your child.

How Do I Build My Own Care Notebook?

Twenty Care Notebooks have been divided into sections with similar content and made available in both Microsoft Word and PDF formats. You can fill-in and print completed PDF forms from the Web site or print blank forms and complete them manually. Most people will want to fill-in and save the Care Notebook documents and this is most easily done with the Word documents. Those who do not have Word software are able to use the PDF format version with the understanding that the forms cannot be altered (or changed). It is recommended to view the online examples before building your own care notebook.

What Are Some Other Care Notebooks Examples?

All About Me!—Epilepsy Care Notebook
Developed by the Epilepsy Foundation of Florida through a grant from the federal Health Resources and Services Administration
This Care Notebook is dedicated to children with epilepsy that includes a comprehensive care plan and home medication list plus space for documentation of pediatric and neurological consultations. Download each of the following files and place them in a notebook binder separated with tabs.

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The Center for Children with Special Needs
Seattle Children's

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Child's Health Record PDF (Spanish PDF)
Developed by The Alameda County Medical Home Project

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Children's On-line Medical Organizer
Developed by Children's Hospitals and Clinics, Minneapolis and St. Paul, MN
This organizer is a free online medical record that sets up a personal Web site - available from any Internet capable computer. You identify who can look at it, add to or change the information. You can access and print information that you need from any Internet-capable computer. You can also set up access for other family members or providers.

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Directions: Resources for Your Child's Care, Second Edition (Spanish | Portuguese)
Directions is a resource manual for families of children with special health care needs. The purpose of Directions is to help families organize health records and information in order to optimize contact with health providers and health plans, provide resources and specialized information about caring for child with special health care needs and improve communication among families, health providers, and health plans.

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Family Information Notebook (FIN)
FIN fin(fin) n. 1. a fish uses its fin to balance, steer, and avoid obstacles as it moves through the water.
The FIN Project is an information exchange system for use among caregivers and health care, educational, faith-based, recreational, and other community systems that care for a child with special health care needs.

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Make a Care Notebook For Yourself or Your Child
Vermont Family Network

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Packing Wisdom: A Family-Centered Care Coordination Notebook PDF
Wyoming Family-to-Family Health Information Center
This care notebook was developed to help parents and caregivers organize information regarding a child’s chronic health condition. A care notebook can help to record important information about a child’s health care, and can make it easier to keep track of changes, share information with a child’s care team, child care, school, and family members.

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Utah Care Notebook (Spanish PDF)
This care notebook is an organizing tool for families who have children with special health care needs. Utah created the book to help families keep track of important health care information, list providers and community organizations contact information, prepare for appointments and file and share health history. Utah Family Voices shared this guide so that other resource centers may use this as a template when developing similar tools.

The assessment index includes:

  • Emergency Information Form For Children With Special Needs (2 pages)
  • Smart Card (1 heavy sheet)
  • Tips on Preparing to See the Doctor (1 page)
  • Commonly Encountered Medical Terms (6 pages)
  • Measurement Terms and Abbreviations Chart (2 Pages)
  • Insurance Worksheet (1 page – print same chart on back and front of sheet)
  • Children’s Health Guide (1 page)
  • Spina Bifida and Latex Allergy Links (2 pages)
  • The Oral Allergy Syndrome (1 page)
  • Telephone Directory (4 pages)