There are several good reasons to organize the paperwork you have about your child’s diagnosis or disability:
- Applications for some government programs require detailed information about a child’s medical history and treatment. It will be easier to find and refer to information if you keep it in one central location.
- Sometimes when you are advocating (speaking up) on behalf of your child, you need to prove there is a need. Keeping your records and reports organized will help you with this. Also see Speak Up for Your Child on this site.
- Sharing information between educators and doctors is important for the coordinated care of your child. It is easier to make sure everyone has the latest plan, progress report or test if you have it handy.
Begin keeping and filing material when your child is young. The key to holding on to the paperwork is organizing it in a way that is meaningful to you. Some people scan the documents and store them on their computers.
Other people prefer to stick with old-fashioned paper in a notebook. If you are creative, you can have fun decorating the notebook cover and divider pages. Also see Make a Child Info Toolkit on this site.
No matter how you choose to collect the information, here is a list of the things to keep:
Important dates—Include dates of surgeries and diagnostic procedures (and what they are). Also make note of the days you call to inquire about getting services (some programs call this the date of referral). Always ask for and write down the name of the person you talk with.
Consent forms—Include consent forms to allow professionals to exchange information about your child and consent for evaluation forms.
Medical test results—Often when your child has a medical procedure or test you get the results over the phone. Ask the office if you can receive a written report. If not, enter the results in your records.
Developmental or educational results—Usually with educational testing you will receive a copy of the results as part of the planning process. If educational professionals conduct informal observations or assessments, ask for a written report.
Hospital discharge plans—Discharge plans include medications and instructions for follow-up appointments.
Medications—Whenever your child is prescribed a medication, record the name of the drug, the dosage and how often your child is supposed to take it. Also record the name of the doctor who prescribed it and the date, and be sure to keep track of any reactions your child has to the drug.
Specialists—Keep their names and contact information handy. Some people keep specialists’ business cards to organize this information.
Financial information—Keep records for how much you have paid or owe on medical, therapy and other expenses. This can help determine your eligibility for certain programs, or the amount you have to pay to receive services. It may also help with your year-end taxes.
Intervention or treatment plans—Keep the current plan and one or two older ones. If older than three years, move to a historical folder.
Progress notes—These can be helpful when you and your child’s care team are evaluating how treatment plans are working.
Plan revisions—This is important if plans are changed due to progress not being made or when progress happens much faster than anticipated.
Several websites and applications can help you organize your child’s information, whether you use a notebook or a computer:
Download Packaging Wisdom, A Family Centered Care Coordination Notebook (PDF), a guideline and template from Wyoming Family 2 Family Health Information Center. It can help you start organizing information regarding your child’s health condition and medical history.
Visit Building Your Care Notebook, from the National Center for Medical Home Implementation. It has loads of downloadable forms you can use for everything from tracking appointments and care to keeping records of school communications.
Also see How to Talk to Your Child's Doctor on this site.
View a video for information on how the American Academy of Pediatrics Medical Home Initiative offers support resources and information to pediatricians.