Organizing medical information for children with special needs

Organizing Medical Information for Your Child with Special Needs

By: Stephanie Lageman – Early Interventionist

It can be a whirlwind. Suddenly, your child has 12 different doctors, an EI, several therapists who seem to keep changing; and it’s easy to get confused and overwhelmed and to feel like you’re being overrun!

Let’s break it down. Organizing can seem like another daunting task, but it’s one that will bring a degree of peace and freedom once it’s in place. Having your ducks in a row will also help you advocate for your child. Remember, your EI is here to help!

Below we will explore several ways to organize and keep track of information. We’ll cover:

Important Basics

Sharing calendars with other caregivers

Therapist communication book

What to do with all those paper records

Important Basics:

The first thing that I would suggest, would be to sit down and make a list of all of the professionals involved with your child. This includes the pediatrician, other specialists, EI, therapists, home nursing, medical supply company, pharmacy, etc.

After your list is complete, you can begin finding contact information for all of these providers. You can use this printable to make a paper list to keep in the car and at home – in case someone other than you needs to reference the list. Now would also be a good time to check that each provider is entered correctly into your phone contacts.

Also, please go ahead and make a page with current medications. This will be handy to take with you to doctor’s appointments, so that every doctor you deal with will be aware of all of the medications your child is taking. You can use this printable to keep it organized.

Sharing Calendars:

In order to keep track of your child’s appointments, I recommend sharing calendars with others in your family or others who provide care for your child – such as in-home nursing, or PCAs. Some parents love using a dry-erase calendar, which they update each month. Others love to use technology. Google Calendars can be shared, as well as iphone calendars. also offers an online calendar system and has won awards for being a great family organizer. They offer an app for iphone and android.

Therapist Communication Book:

Organizing a therapist communication book can be especially helpful if therapists are seeing your child while you are working during the day. Use a 3 ring binder and make a divider for each therapy and EI services, and place a few sheets of notebook or blank paper in each section. Your Ei will be able to clip the yellow copy of her summary into the correct section. Speech, OT, and PT will be able to write you a note in their section about that day’s therapy session.

You might decide to keep a paper copy of your child’s evaluation results and plan of care for each therapy, as well as the current copy of your child’s IFSP from the EI in each section.

Organizing paper records:

Some of us love to hold paper in our hands when we are working on something. To tame that box of papers, you could get a large 3 ring binder (or binders) and make a divider for each professional on your contacts list from the first step. Behind each divider, clip in the records. Try to keep them in order, with the most recent on top. If you don’t have records for some doctors, please ask your Ei. Your Ei may already have a copy of the records you need; and if not, they will be happy to request them for you.

You may also be able to access records online through your local hospital system. For example, Greenville Health System, in the upstate, uses a secure online system called MyChart. You can access medical records and even send secure email to your doctors to ask questions, request medication refills, or set up appointments.

You Can Do It – We Can Help!

Don’t forget that your Ei is there to support you – and that can include getting organized! We want you to understand everything that is happening with your child and feel confident in advocating for them. Please let your Ei know if you need help organizing – we aren’t afraid of paper cuts!

Blog Printable 1

Blog Printable 2

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