As the parent of a son/daughter with an autism spectrum disorder or other special needs, you are often coordinating various activities, information and input from a range of professionals in your son/daughter’s life. You will frequently need to refer to and provide information and written documentation for a variety of situations (e.g., camps, school programs, various therapies, assessments etc.). When applying for various programs (e.g., Medicaid waiver, insurance coverage, etc.), you will likely have to provide disability related information regarding your son/daughter. Organizing and staying organized with all this information and paperwork can make you more effective in sharing information as well as advocating for your son/daughter, and can facilitate better coordination of services. You are empowered when you can easily find the information you need while saving time and lowering stress.
There are various ways to organize your paperwork. Some parents will use their smart phones, computers or electronic tablets to store their son/daughter’s information and records. Most still use three-ring binders, file cabinets, accordion file folders, or a series of big envelopes to keep track of all the paperwork. Regardless of the system you use, it is most beneficial for you and your child that you have ways that are effective to save, store and share information. Organizing this information, in a way that works for you and your family, so that it is easy to use is a key. How you organize your child’s paperwork will depend on your own personal style. Most important is getting started. Do not put it off.
You may need to start by gathering all existing paperwork in one place. Collect reports, records and information including:
- Educational records such as Individuals Family Service Plans (IFSPs), Individual Education Program (IEPs), 504 plans, behavior plans and/or other reports or paperwork from the teacher and other staff at your son/daughter’s school or program;
- Therapy records from private providers such as developmental therapists, speech language pathologists, physical therapists, occupational therapists, music therapists, recreation therapists, ABA (Applied Behavior Analysis) providers and mental health therapists;
- Medical records such as hospitalizations, surgeries, tests and procedures, reports, immunization record, medication record, doctors visit information, and any dental or vision clinic visits;
- Insurance and Healthcare Plan records including information on insurance plan coverage and explanations, paid medical bills, and healthcare denials and appeals (may be combined with medical records for some); and
- State and Federal Programs and Benefits records including Medicaid waiver, social security and Medicaid paperwork; copies of applications filled out by you and any attachments you sent as well as any information you received.
After collecting all paperwork, decide on how to store and organize. It can seem overwhelming especially if you have several years of information. No matter when you start, it is important is to get started to organize the information. If you cannot decide on a system, try one that many families have shared works well for them; a 3- ring binder system. If you already have a lot of paperwork collected and/or if you may have much more paperwork in the future, you could consider starting separate binders. Each binder would hold current information for just one or more of the life areas mentioned above.
In addition, it can be very beneficial to start a school portfolio for your child. A portfolio is a sample collection of work completed by your son/daughter. Samples of routine work, tests, and other papers that show his/her ability and/or needs in the classroom should be included. You could also start a portfolio for activities outside of school such as art and music classes and/or recreational therapy and camp programs.
If you are using a binder, or series of binders, you can use dividers with tabs for better organizing the information within each binder. You can start by looking above at the different records you might include in each binder. What else do you want to include? You can color code the binders. You can add folders with pockets to the binder, if that helps you organize.
In each of the five 3- ring binders you can include a 3- ring spiral notebook that fits inside the binder. This is very helpful for recording notes when you have conversations, in person or by phone or email with various professionals. Record important pieces of information including:
Name of the person and agency:
Date and time of contact:
Issues discussed and include:
Information you gave:
Information they gave:
Next steps include:
Who is responsible:
At the end of this article, you will find a form you can fill out and use for sharing current information on supporting and interacting with your son/daughter in a variety of settings. You will be sharing information about your child for a long time. The Current Information form below is devoted to listing all current information about your son/daughter. This (or parts of it) can be given to respite staff and other caregivers as well as staff at school, camp, and residential and employment settings. To keep this information current, make copies of the pages in this section then fill out and share as needed.
Wheeler, M. (2021). Organizing records and paperwork: Proactive tips for parents of children with special needs. Retrieved from https://www.iidc.indiana.edu/irca/articles/recordkeeping-for-parents.html.