Keeping track of your child’s records

binders_thmWhether your child has a medical condition, disability, receives services through the Early Intervention Program or Special Education, one of the best things you can do is to keep all of your child’s records well organized.

Why is this so important?

If your child is in the early intervention program for babies and toddlers or if he is receiving services through your local school system, you will find that you will amass an enormous amount of paperwork. Keeping it organized will help you tremendously when you need to find documents for IFSP or IEP meetings, visits with other doctors or specialists, and if you need to apply for other programs or services. It is very important that you keep all evaluations and test results so that future specialists can see the history of your child when he evaluates him. Having orderly records will also help you if you need to speak with an attorney in an attempt to try to obtain services you feel your child should rightfully receive.

How should you get organized?

My favorite way to do this is to get an old fashioned three ring binder and put each item in it in chronological order (date order). Put the oldest one on top and the newest one at the bottom (so it reads like a book). You are going to need more than one binder as your child grows, and each one can be labeled a different year (2013, 2014, etc.). This binder method will allow you or your child’s doctors to review your child’s history in a beginning-to-end format. It will also give you a “big picture” of your child, and help you put the details of all the different moving parts into one coherent whole.

What should you put in the binder?

Put everything that is related to your child’s health, disability and education in the binder. This would include:

• Medical records – beginning with your child’s birth (and even your pregnancy if it is applicable or if you have it)
• All evaluation reports
• Your child’s ISFPs and/or IEPs
• Report cards
• Educational test results (such as standardized tests)
• Your notes from meetings or phone calls with school personnel, doctors, or other individuals, with dates
• Notes from your child’s teacher
• Samples of your child’s work
• The business cards of all of your child’s doctors. You can either put them in plastic business card holders, or create a master list of all the doctors with their contact info.
• CDs or thumb drives of electronic information that is on your computer (always back up files!)
• A list of all the medications your child is taking, with the dosage, frequency and prescribing doctor.

Some experts say that it is also helpful to create a one page summary sheet, which is almost like a table of contents. It should list each document, the date the document was created or received, and a brief description of what it is (eg. “John’s neurological evaluation, 2009,” “IEP for 5th grade,” “notes from team meeting on January 12, 2011,” etc.).  This will help you to locate valuable information when you need it quickly (such as right before a meeting or a visit to a new doctor). The more organized you are, the easier it will be to manage your child’s journey.

Some people don’t like the binder method. If you find this does not work for you, then you might find it easier to put all of the above items in a file cabinet (in file folders) in chronological order. Whichever method you choose, just be consistent and label your folders so that you can find things when you need them.

When should you stop keeping these files and records?

Besides needing these records for early intervention or school based services, you may need these records for the high school years and beyond graduation. For example, you may need these records in order for your child to qualify for accommodations for college based entrance exams, such as the SAT or ACT. You will also need these records to support a request for testing accommodations at college. Lastly, many of these records will be required to apply for government benefits, such as Supplemental Security Income (SSI).  So, I suggest that you keep your file system going for as long as your child (or later as an adult) has special needs.

Where can you get more help with this?

I often recommend that parents see the NICHCY legacy information now on the CPIR website,  as they have a Sample Record-Keeping Worksheet. In addition to CPIR, you can also go to Wrightslaw, an extensive website dedicated to helping parents navigate the maze of special education.  They offer concrete advice on how to advocate for your child with special needs. They also have great articles on how to organize your child’s records.  

Bottom line

If you begin your record keeping early, you will not be overwhelmed by the avalanche of papers that will undoubtedly come your way. But, if you did not have a method of record keeping before today, don’t worry. Simply start with today and you can go back and organize prior paperwork another time. Being organized will cut down on the stress that occurs when you feel like you are buried beneath a mountain of paper. You have enough to tend to with your child – it is helpful if the paperwork does not get in your way but rather helps you achieve your goals. Of course, the best part of all is that you will feel more confident and in control of your journey.

Let me know if this helps or if you have other suggestions. What has worked for you?

Have questions?  Send them to AskUs@marchofdimes.org.

Note: This post is part of the weekly series Delays and disabilities – how to get help for your child. It appears every Wednesday, and was started on January 16, 2013. Feel free to go back to look at prior posts as the series builds on itself. As always, we welcome your comments and input.

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