Getting Organized

It can be a challenge to organize and store the accumulating amounts of paperwork related to your child’s disability. Here are some ideas on how to tackle and organize that huge pile of papers.




Getting Started

Wait to sort through all that paperwork until you have a block of time to organize it. In the meantime, place all the information in one place – a box, a container, etc. This will help reduce the chance of misplacing an important document and will keep your home from being overrun by paper.

Purchase a separate file cabinet or large container that will be used exclusively for your child’s paperwork and keep this information separate from the rest of the household documents. Office supply stores carry home-friendly systems to organize information within the cabinet or container. Get one that allows room for growth over time.

A personal copier and fax machine is not necessary, but can save time and trips to the local copy center.

Keep a 3-ring binder with blank pages divided into categories: school, medical, government programs, etc. Use this as a phone log to keep track of conversations. Be sure to wright down the date of the conversation and whom you spoke with along with important details of the call. A 3-ring binder will allow you to add extra sheets as needed. You can also include important email correspondence. It is so much more efficient to have all of this information in one place and not on little pieces of paper, on the backs of envelopes or on something that might be thrown away by mistake.

Staying Organized

In the front of each section, list contact names along with mailing addresses, email addresses and phone numbers.  This will save valuable time and energy wasted tracking down this information when you need it. Don’t forget contact information for the pharmacy and other medical suppliers.

Get in the habit of asking for business cards when you have appointments. If you are at a doctor’s office, jot down the names of key people (nurses, assistants) on the back of the card so you can call them directly in the future.  This is a great way to begin to establish relationships that may become valuable later on.

Do not write on original documents – make a copy and jot down notes and other pertinent information on the copy.  Label the copies with "original (date)" and "working copy (date)" so as to avoid confusion with multiple copies of the same document.

If your child has multiple therapies or doctor visits scheduled, it is important to have a method of keeping track of them.  It can be as simple as a wall calendar with times listed on it or a more sophisticated system for techno-savvy parents.  Be aware of any cancellation policies medical providers may have to avoid unnecessary charges.

Keep a journal for your child.  Include information on their general disposition, illnesses, changes in mood, sleep, and behavioral concerns.  For some children, keeping track of what they are eating is necessary. Over time, a journal may give valuable information in spotting patterns linked to changes in behavior. For example, you may see changes when school starts, at daylight savings time or during spring and fall allergy seasons.

Post a list of emergency contact information in a prominent place for caregivers

Having this information located in one convenient location could be invaluable in the event a caregiver needs to step in quickly to care for your child. This list should include:

What to put in those files


  • Copies of all medical records (letters, chart notes, test results) from your child’s medical providers.  Be sure to request copies of these documents at every appointment.  Because of HIPAA privacy laws, you may need to sign a release of information to get this information.

Medical offices are not required to keep records for non-current patients indefinitely.

  • A list of all prescriptions and non-prescription medications and supplements your child is taking along with dosages. 
  • Assemble a 3-ringer binder that includes copies of all medical records. Divide them by specialist or test (i.e. Neurologist, Endocrinology, and EEG’s) and organize them by date. Keep the originals in a safe place. For each appointment, copy pertinent information to give to the doctor for his/her records. If there is a lot of information to share, organizing them in a format similar to the way suggested above will help the doctor look through the information quickly and efficiently.

Doctors really appreciate patients being given copies of medical records to keep for their files.

  • Medical insurance information, including information on in-network providers, co-pays, deductibles and contact information.
  • Explanation of Benefits (EOB) Forms – EOB Forms are sent by your child’s insurance providers and explain services provided, how much was charged, and the amount paid. 

EOB’s are not required by participating providers who receive full reimbursement directly from the insurer.

  • Copies of immunization records
  • Therapy progress reports
  • Journal articles or other information pertaining to your child’s disability. If your child has a rare or complex condition, this information can be helpful to share with medical providers. 


Keep copies of all Individualized Education Plans (IEP’s), 504 Plans, Evaluations, Progress Reports, Standardized Test Results and other pertinent correspondence with school staff.  See the Education Section for more information on these documents.

Periodically, visit the school and review your child’s educational records, called a cumulative file, to make sure they are accurate and current. You are entitled to view and have copies made of your child’s records; however there may be a charge.

Government and Financial

It can be helpful to reference the previous year’s documents in filling out ones for the current year.  Request electronic versions of forms to keep on your computer so information just needs to be updated each year.

Depending on your child’s individual situation and programs they are utilizing, the documents you need to save will vary. Organize and store them by year and/or by program or agency.   

Guardianship and conservatorship reports need to be filed annually, so mark the date on your calendar. It is important to file these documents with the court on time, and the County does not send reminders when they are due. The forms need to be notarized.  Your local bank or city office may notarize documents at no charge.

Supplemental Security Income (SSI) Representative Payee Reports need to be filed annually. A form will be sent by the Social Security Administration asking for an accounting of how your child's benefits were spent. Save your receipts!