Organizing Medical Records: Creating a Care Notebook

Do you struggle to locate medical information for your child’s doctors and therapists? Or find yourself answering the same questions again and again from caregivers or teachers? Your child might see many doctors, therapists, and other professionals over the years.

It helps to keep medical records and other important things about your child’s care in one place. We’ve heard that many parents find a care notebook to be the best way of keeping everything organized. Think of a care notebook as a 1-stop shop containing everything that family, doctors, therapists, and members of their school or care team would need to know about your child. It’s simple and easy to carry to doctors’ offices, day care or school, and other places you go with your child. It can even be kept on a tablet or phone.

Ready to get started? Well, read on!

What Is a Care Notebook?

A care notebook is a place to keep:

• Medical records.
• Medication changes.
• Treatment plans.
• Other key information for caregivers, doctors, therapists, and others who work with your child.

Many people also use a care notebook to organize things like:

• Important phone numbers.
• Notes from doctor’s visits.
• Hospital stays.
• Medication schedules.
• School strategies and contacts.
• Transition plans.
• Developmental checklists.
• And more!

Having a care notebook is a good idea regardless of your child’s age. Even if your child is a teenager, keeping a care notebook will help you and the care team as your child grows and has new or different needs. A care notebook is a very helpful tool for anyone. Don’t forget that a care notebook will probably contain very sensitive information that needs protecting, such as Social Security numbers or Medicaid ID numbers.

Why Should You Create a Care Notebook?

• A care notebook will help you keep everything important organized and easy to find. When you’re away (or short on time), the care notebook will give caregivers the information needed to best take care of your child.
• If your child has an emergency, the notebook can help first responders know important medical information, such as whether they have a feeding tube, communication device, or other equipment.

How Do You Get Started?

• Make a list of the things you refer to most about your child, such as reports from their doctors, lab results, vaccine records, care plans, hospital stays, school records, etc. Remember to include information most often needed by doctors, caregivers or respite providers, school staff, and others on your child’s care team.
• Decide how you want to organize it. Some parents use a 3-ring binder, while others prefer a virtual care notebook on their laptop, tablet, or smartphone. Do what works best for you and your family. Keep in mind that, due to concerns about computer viruses or security and privacy issues, you can share your care notebook as a hard copy instead of an electronic one.
• There are many free online tools that allow you to download or print templates for your child’s care notebook. See some of them at the links below.

Being Prepared for an Emergency

• Remember to include in your child’s care notebook what to do in an emergency. You can use this emergency information form for children with special needs created by emergency room doctors and pediatricians. Similar forms can be found online, or you can always create your own.
• Have a plan for what your child would need in an evacuation that would keep you and your family away from home for more than 3 days. Download this helpful emergency plan for people with disabilities.
• The care notebook should include a copy of any legal documents you have about your child’s medical care such as a medical power of attorney, a living will or advanced directive, or a do not resuscitate (DNR) order. Learn more about this on our Legal Toolspage.

Suggested Links to Additional Resources

• The American Academy of Pediatrics has helpful ideas and templates for creating a care notebook.
• Mommies of Miracles has forms and templates for care notebooks.
• Texas Parent to Parent has documents you can download with tips about care notebooks.
• This helpful video about emergency plans is especially for people with disabilities and special health-care needs.
• Remember to include in the care notebook what to do in an emergency. You can use this Emergency Information Form for Children with Special Needs created by emergency room doctors and pediatricians. It includes a place to list doctors, diagnoses, medications, allergies, and other important medical facts about your child.