Using a Care Notebook
WHY USE A CARE NOTEBOOK?
What is a Care Notebook?
Children with special healthcare needs may visit numerous doctors, have multiple surgeries, procedures and medications, and also have special arrangements with schools and child care to keep track of. The Care Notebook is designed to help organize medical history, current information, appointments, important contacts and other relevant information to assist families, caregivers and providers. It is a convenient organizing tool to keep many sources of information all in one place – easy to grab to bring to appointments and to share information.
What are the Benefits of a Care Notebook?
Being in control of recordkeeping for a child with special medical needs can reduce stress and can help save time, energy and money. It can contribute to improved health, more efficient and effective medical appointments, better education outcomes and quality of life.
Here are some of the many ways that an organized, up-to-date Care Notebook can help you:
- It provides a central place to keep information.
- Important phone numbers are readily available for you and for other caregivers.
- It helps with sharing information with others.
- It can be used to track changes in medications and treatments.
- It can help you prepare for speaking with physicians or other providers.
- Tracking medical expenses and appointments can help you in dealings with insurance companies or applying for assistance.
- It makes it easier to share health history with doctors, school personnel and others.
- It can help to improve communication with healthcare providers about current issues.
- If you move, change doctors or seek another opinion, you will have the information you need on hand right away, even if you don’t have your official records.
HOW TO SET UP YOUR NOTEBOOK
Personalize It!
- Make it your own – choose the forms that will be most helpful for you.
- You can rearrange sections or create your own. When organizing, think about what information you tend to look up or need the most. Also think about what information is most important to share with others caring for your child.
- Include your own resources, such as interesting articles, photos or informational sheets.
How to Make It Easier:
- Take the Notebook (or specific pages) with you to school meetings, such as IEP meetings, and have the staff fill out their own contact information or other details. You can also ask staff at medical visits to fill out important information.
- Ask for business cards at meetings and appointments that you can attach for contact information.
- Use the pockets to keep documents from schools and healthcare providers, as well as bills and receipts so you will have them all in one place.
- Add new information as soon as you can so that you don’t forget and you don’t create a backlog of information.
- Print additional pages from SBRN’s website as needed.
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This Care Notebook was created for you to personalize for your child, yourself and your family. Some of this information was adapted from the Care Notebooks from the Seattle Children’s Hospital’s Center for Children with Special Needs, and the Spina Bifida Association’s Health Guide for Parents of Children Living with Spina Bifida.
A Quality of Life Grant from the Christopher and Dana Reeve Foundation with additional support from the Provident Bank Foundation helped support this work.
Care Notebook Materials
Appointment Log
Bowel Movement Tracking Form
Create a Contact List for Your Child
Equipment – Supplies
Family Medical History
Getting to Know Me
Growth Tracking Form
Health Care Providers
Hospital Stay Tracking Form Non-Surgical
Hospital Stay Tracking Form Surgeries
In Case of Emergency
Lab Work – Tests – Procedures
Medical – Surgical Procedures – Outpatient
Medical Bill Tracking Form
Medications
Past Surgical History
Personal Family Info and Insurance Funding Sources
Pharmacy
School – Child Care Info
Spina Bifida Medical History
Urinary Tract Infection Tracking Form