Care Notebook

Families of kids with special health care needs get information and paperwork from many sources. This Care Notebook is designed to help organize the information in one place to help both families and providers. It is available in English and Spanish.

Care Notebook

The Care Notebook is available to download, or you can create your personalized book by choosing just pages you need. The PDF forms are fillable, so you can enter your child’s information on a computer or smartphone if you wish and save it online, or you can print out the pages and enter your child’s information by hand.

Follow These Steps to Set Up Your Child’s Care Notebook

  • Step 1: Gather information you already have
    • Gather up any health information about your child you already have. This may include reports from recent doctor’s visits, recent summary of any hospital stays, this year’s school plan, test results, or informational pamphlets.
  • Step 2: Look through the pages of the Care Notebook (see below)
  • Step 3: Decide which information about your child is most important to include
    • What information do you look up often?
    • What information do people caring for your child need?
    • Consider storing other information in a file drawer or box where you can find it if needed.
  • Step 4: Put the Care Notebook together
    • Everyone has a different way of organizing information. The only important thing is to make it easy for you to find again. Here are some suggestions for supplies used to create a Care Notebook:
      • 3-ring notebook or large accordion envelope to hold papers securely.
      • Tabbed dividers. Create your own information sections.
      • Pocket dividers. Store reports.
      • Plastic pages. Store business cards and photographs
Care Notebook (PDF Document 1.0 MB)
Use selected pages or the entire notebook – customize
For additions to your Care Notebook, see the Forms for Education and Planning for Emergencies pages.

Sections of the Care Notebook, English

Care Notebook: Español

Al cuidar la salud de su niño con necesidades especiales, usted puede recibir copias e información de muchas fuentes. Un Cuaderno de registro le facilitara a organizarse mejor con la información más importante. Con un cuaderno de registros le será mucho más fácil para usted encontrar y compartir una porción de información con otros quienes son parte del equipo del cuidado de su niño.
Ésta es una versión anterior del Cuaderno de cuidados en español. Pronto estarádisponible una nueva versión, junto con enlaces a las secciones y páginas individuales.

Other Sample Notebooks & Care Forms

  • Building Your Care Notebook (AAP) The American Academy of Pediatrics provides a central place with links to several forms from many states. For families that are new to making care notebooks, we suggest you pick one form and try filling it out before downloading other forms.
  • Focus Sheet (Word Document 27 KB) This form helps parents decide what they want to focus on during the appointment with the doctor and includes places for questions (behavior problems, family needs, etc.); places for things to bring (lab results, reason for visit, etc.); and places to write thing to remember after the appointment (next visit, treatment plan, etc.).
  • My Health Passport (FCIC) (PDF Document 539 KB) This passport can be filled in with important information to help health professionals.
  • Mi Pasaporte de Salud (Spanish) (PDF Document 621 KB)

Apps and Technology

Cellphones and Tablets have changed the way we keep and view information. These days not many people leave the house without a cell phone, which makes them a great tool. Many families are using app technology instead of paper to keep track of their complex child’s needs and information.

Smartphones

There is a standard medical ID built in on newer smartphones (Apple IOS and Android models) that could be used for teens and young adults. It has an area for medications, doctors, and emergency contacts. While this will not be a complete medical record, there is a surprising the amount of information available, including a link to medical records. The information is for the owner of the smartphone, so this option would be for teens and young adults and might encourage them to take a more active role in their health.

Apps

Here are a few examples of health tracking apps. By searching your app store, you may find more are being developed all the time.
  • Caremap developed by Boston Children’s Hospital is a secure place to put the most critical information about your child’s health, emergency care, allergies, and medical history. It is shareable with family members, teachers, and caretakers. For Apple devices only.
  • Medical ID is a standard Medical ID that could be used for teens and young adults to take an active role in their health care. It is available for Apple or Android phone and keeps records of medications, doctors, and emergency contacts. While this is not a complete record, it is a good basic summary with links to medical records. It is designed for the cell phone owner.
  • Child Health Tracker The Child Health Tracker APP by Healthy Children (a branch of the American Academy of Pediatrics) is handy because it stores your child’s medical information, healthcare providers, and a medication tracker. It also has information from AAP about immunizations and more. For Apple devices only.
  • epsy is a free seizure tracker for epilepsy. It helps you track and manage seizures, triggers and medication for more clarity in everyday life. It is HIPPA compliant and a great tool to share important information with your child’s neurologist.

Authors & Reviewers

Initial publication: June 2008; last update/revision: September 2021
Current Authors and Reviewers:
Authors: Medical Home Team
Gina Pola-Money
Reviewer: Tina Persels
Authoring history
2007: first version: Barbara Ward, RN BSR; Juan Carlos VasquezR
AAuthor; CAContributing Author; SASenior Author; RReviewer