What this article is about: This article provides a brief overview of organizing your child’s records and provides links to resources where you can find more information and support.
Make a one-page fact sheet about your child’s condition, and keep it on hand electronically and hard copy. The fact sheet should include:
- overview of the condition
- how the condition affects your child
- links to further reading
You can pull out this fact sheet whenever someone asks about your child’s condition — at an IEP meeting, with a new nurse or therapist, or when you are contacting an elected official.
Create a timeline of medical events in your child’s life. This should be as brief as possible (easier said than done), and like the one-page fact sheet, it will make it easier to communicate to individuals who are trying to help you.
Create a care binder to organize all of your child’s medical information including your fact sheet and timeline. Seattle Children’s The Center for Children with Special Needs offers this downloadable kit.
Make a list of all of the advocacy and research organizations for your child’s condition and get to know the staff. Once you make your own list, find out if these groups have State and regional contacts in your area and reach out to them. Often, these groups have employees or volunteers that are dedicated to helping parents solve problems related to access to care. Sign up for their newsletters and find them on social media.