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Build Your Own Care Notebook
What is a Care Notebook?
The Care Notebook has multiple uses. A major role of this
notebook is to help parents/caregivers maintain an ongoing record of their child's care, services, providers, and notes. This 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 this 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?
The 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.
Find out more about how to use the Care Notebook web site to create your own personal care notebook by taking the Care Notebook Online Tour.
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. Your computer must have Microsoft Word software to open and use the Word documents or to delete, modify, or add your own text to reflect the information you want to include in that particular section of your Child's Care Notebook. You will need the free Adobe Reader on your computer to open and view the PDF documents. You can fill-in and print completed PDF forms from the web site or print blank forms and complete them manually. You cannot save completed PDF forms unless you purchase and have Adobe Acrobat software on your computer. Most people will want to fill-in and save the Care Notebook documents and this is most easily done with the word documents. However, those who do not have Word software on their computer 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.
Complete Care Notebooks to Review as Examples
Child's
Health Record (English Version) and Child's Health Record (Spanish Version) Developed by The Alameda
County Medical Home Project 
Care
Notebook - Center for Children
with Special Needs: A Program of Children's Hospital &
Regional Medical Center of Seattle, Washington.
Available in English only.
Care
Notebook and Estate Planning Guide | Worksheet
for Costing Out Expenses
Life
Planning Checklist -
Front Page of notebook Color
Key - Second Page of Notebook
The Center for Infants and Children with Special Needs:
Children's Hospital Medical Center of Cincinnati and The
Arc of Hamilton County.
This care notebook assists parents/caregivers in maintaining
a medical record while
also providing guidance on more emotional, future planning
and estate issues. 
Children's
On-line Medical Organizer-Developed
by Children's Hospitals and Clinics, Minneapolis and St.
Paul, MN
This organizer is a free on-line 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.
Use the Organizer to record and store your child's - and
your family's - medical and health information in one place.
Whether your child has a complex medical history or goes
to the doctor only occasionally, you are in charge of the
information. Put in as little or as much as you want.
Care Notebook Utah Care Notebook
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. 
Purpose: Physicians and
parents with children with special health care needs developed
the CHSA. The CHSA is a comprehensive, portable medical
record. The CHSA is used to monitor a child’s health
status so as to communicate timely and accurate information
to health care providers. The CHSA provides a convenient
and effective way to organize information for children with
special health care needs. Available
in Spanish.
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)
Directions: Resources for Your Child's
Care, Second Edition, 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.
- To provide resources and specialized information about
caring for
child with special health care needs.
- To improve communication among families, health providers,
and
health plans.
To download Directions in English and Spanish from the
Internet,
visit www.mass.gov/dph/fch/directions
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. www.vanderbiltchildrens.com/interior.php?mid=564
Last Updated
May 8, 2008
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