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Organizing information about your child with special needs - Part 1 of 2

Prepare an agenda of the points you want covered before going to any meeting about your child. You can use the agenda to jot notes
Prepare an agenda of the points you want covered before going to any meeting about your child. You can use the agenda to jot notes
US Department of Education on flickr

As parents of children with special needs we end up with lots of paperwork. Managing this paperwork is often overwhelming. This two-part series gives you tips on the types of information you need and how to organize it. When your child's information is organized, you are better prepared to advocate for your child at important events such as school meetings and medical appointments.


Your first step is getting information about your child from her school, doctors and other medical providers. Here are some tips on the type of documents and information you need to get.

Information about your child’s special needs

Many of us parents hit the internet to learn as much as possible about our child’s special needs. If you have done this, you probably came across loads of information. You don’t need to print out all this information, but you should print:

  • A fact sheet or overview of your child’s disability
  • Information on how your child’s disability affects her education and learning
  • Tips for teaching children with your child’s type of disability
  • Articles that you consider particularly helpful

Make sure you get this information from reputable websites. For example, the National Institute for Neurological Disorders and Stroke publishes a fact sheet on autism and the Centers for Disease Control and Prevention publishes a fact sheet about Attention Deficit-Hyperactivity Disorder (ADHD).

Legal Information

Parents must learn what their children’s legal entitlements are regarding education. You do not need to look up the actual laws. Your goal is to find a reputable site that provides a good summary of the laws that affect children with disabilities where you live.

For example, in the US parents should understand section 504 of the Rehabilitation Act of 1973 (Section 504), the No Child Left Behind Act of 2001 (NCLB) and the Individuals with Disabilities Education Act of 2004 (IDEA). These three acts are federal laws that apply to the whole country. The US Department of Education is one website that includes information on these acts. Individual states may also have laws that apply to your child.

Medical/Psychological Records and Information

Gather all medical records on your child that relate to her disability including:

  • Referral letters for assessments and treatments
  • Occupational therapy records
  • Physical therapy records
  • Behavioral therapy records
  • Speech & language therapy records
  • Psychological records
  • Psychiatric records

It is a good idea to get a copy of all your child’s medical records, but you do not need every record for your work as your child’s advocate. The records you need for this task are evaluations, test results, assessments, reports and recommendations.

Education Records

It is extremely important that you keep all documents you receive from your child's school. The types of documents you need include:

  • Correspondence to/from your child’s school
  • School handbook or document(s) that describes the school’s policies on issues such as inclusion, disabilities and special education, individual education plans (IEPS), homework, assessments, testing, bullying, restraints, etc.
  • Progress reports
  • Report cards
  • Standardized testing results
  • Notes from parent/teacher meetings
  • Any medical or psychological records done on behalf of the school
  • Draft and final individual education plans
  • Notes from IEP meetings

For more organizational tips, click on the short slide show above.

The second part of this series shows you different ways to organize these records. To get the next installment automatically, click on the subscribe button above.

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