Organizing special needs medical records is a must

As parents of children with special needs, we make frequent visits to various doctors and service providers. To help our children to be successful and to eliminate additional stress in our life, good record keeping is a must.

I was first informed about keeping a medical binder on my daughter after her first surgery. She was one-year-old. One of my daughter’s nurses has a special needs child and suggested that I retain copies of all of my daughter’s medical records in a three ring binder. After my daughter (and I) recovered from her surgery, I took to heart what the nurse had said and started that binder.

I started collecting copies of labs, doctor write-ups, etc… Through the years, I had this binder (blue cloth zippered) and collected information, but, it never seemed to work for me. Every time I brought it to a doctor’s office, I couldn’t put my hands on the information he was requesting in a timely enough manner.

Last year, now ten years later and frustrated, once again, when I couldn’t put my hands on key documents, I set out to figure out a better way to do this. And I did! I bought a big 3” or 4” binder, with a clear pocket in front that I use to include a photo of my daughter. I then bought a divider package—the kind that has a blank table of contents—with 12 tabbed sections. The numbers/tabs are color coded so I can flip to a particular section. I wrote on sticky notes that I could take off and rearrange or reword. After I had what I wanted, I made a color copy so I wouldn’t have the sticky tabs falling off. The best part is….It works for me.

On the table of contents I listed the following:

• Pediatrician
• Neurologists
• Dentist
• Psychiatrist / Psychologists
• Geneticist
• Kidney doctor
• Therapy Evaluations:
(I tabbed these with those 3M post it tabs)
• Endocrinologists
• Craniofacial Team
• Educational Specialist
• Government Services SSI

I ask for copies of everything and file it under the appropriate tab, with the most recent information on top.

In front of the table of contents I have a clear pocket sleeve. On one-side, I have my child’s Provider List contact information and on the other side, I have her School Provider list contact information. I write in pencil in case provider’s change and the form is not ruined.

The new organized binder has been a godsend. I bring it with me to each and every appointment. It provides key information at my finger tips and reminds me to get copies of everything from her doctors and service providers.

We recently had to take my daughter to be examined by the Craniofacial team in Hollywood, Florida. During that visit, my binder turned out to be invaluable. The psychologist on the team was able to give me information and advise me regarding evaluations my daughter’s school had done. One of the doctors on the team wasn’t going to see us saying that our daughter was not his patient. Well, he almost fell out of his chair when I handed him documentation from his office with his signature. He did, in fact, see our daughter and our trip had not been a waste of time.

It happened again when my daughter was scheduled for a video-fleuroscopy. The doctor doing the test did not have the information needed and we would have to wait until documentation could be sent over from the other doctor’s office. We didn’t have to wait because I was able to provide the documentation.

Last, but not least, it again saved me when my daughter’s spot on the Med-Waiver waiting list was called into question for services. They said no paperwork had been filled out and filed on my daughter. I was able to prove to them that it had, in fact, been filled out and I faxed it to them with-in minutes.

Oh, being organized with this binder has saved me many times this year and made me feel a little more in control of situations that are beyond my control. I now started a binder for her school records as well.

Of course, how you organize your child’s medical records will depend on your own personal style. I am just sharing what works and has worked very well for me.

You may download My Child’s Provider List form by visiting under our previous issues Jan/Feb 2009; article“Good Record keeping is a Must”.

*Reprinted with permission from “Good Record Keeping is a Must” by Chantai Snellgrove, 2009. Parenting Special Needs Magazine, Jan/Feb Issue, Copyright [2009] by Parenting Special Needs LLC.