Students with TBI: Learn About the IEP/504

Brain Injury Partners: Navigating the School System
Students with TBI: Learn About the IEP/504

Know Your Rights

The Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act make broad statements and promises for services for children with special needs in the school system. However, the federal and state funding to back up these promises has not always followed. So it is often up to parents to know both the rights of their child and their rights as parents under the law.

The first step in navigating the special education system is to learn the laws. There are some excellent web resources that can explain, in easy-to-understand terms, what your rights are. Below are a few:

  • US Department of Education - "Promoting educational excellence for all Americans." Sections for students, parents, teachers and administrators.
  • National Dissemination Center for Children with Disabilities - Scroll down on the page for a pull-down menu of states. This will enable you to find resources specific to your geographic area.
  • Wrightslaw Special Education Law and Advocacy  - "Includes information about IDEA topics, including child find, eligibility, evaluations, reevaluations, high-stakes testing, IEPs, IEP teams, IEP meetings, accommodations, alternate assessments, placements, transition, parental rights, and more.”
  • Parentpals Special Education Guide - A special education community where parents and professionals share information and offer support. Included are teaching games, message boards, tips and products. Includes a Traumatic Brain Injury section.

Be an Effective Advocate for Your Child

The laws on education are like a life jacket — they will help you stay afloat but you have to do the paddling to go anywhere. Parents who have positive experiences working with school systems offer the following suggestions for becoming an effective advocate for your child.

Before you meet …

  • Prepare for every meeting. This includes formal meetings as well as informal conversations by phone or at school with teachers and staff.
  • Identify your concerns and expectations at the beginning; be clear about why you are meeting and what you expect to happen.
  • Develop a positive approach by focusing on your child’s needs, not what is “wrong” with the teachers, school, classroom, homework, etc.
  • Prepare examples to use at the meeting that show how your child learns best, including what strategies, reminders, and assistance you give at home.
  • Prepare specific examples of difficulties caused by the brain injury and show how they affect your child at home and in school.
  • Be flexible — decide what is most important for you and your child to get out of this meeting.

Many parents find that formal meetings of the special education or 504 team can be intimidating when they are surrounded at a table of educators, therapists, administrators, and specialists. It is easy to feel outnumbered even when everyone is there to help your child. These suggestions come from parents with many years of experience in meetings at school.

When you meet …

  • Bring a relative or friend with you for support. Another set of ears helps.
  • Present a short summary of your concerns and requests at the beginning of the meeting.
  • Ask permission to tape-record the meeting so you can review it later and listen at home with other family members.
  • Have a written list of questions and check them off as you ask them or they are answered.
  • Be specific by asking “W” questions: Why is this needed? Who will be responsible for making it happen? When will it happen?
  • Listen carefully to identify who best understands your child’s strengths and needs.
  • Be assertive but not argumentative.
  • Identify your child’s strongest allies at the meeting.
  • Thank those who support your position and speak up for your child.
  • Ask how you can help make the plan work at home and after school.
  • Request a timetable with dates for the next steps and monitor its progress.
  • Ask for regular meetings and updates as you and your child need more information or help.
  • Sign any papers only after you have carefully reviewed them and agree with the content.

Document, Document, Document

If there is one rule to follow, it’s this: Get everything in writing! Keep copies of all documentation, because you never know when you — or your child — may need it. As a school professional told us, “It is vital to keep information and contacts summarized. Recently I had a student I worked with who is now fourteen years post-injury and six years post-high school graduation call me because she is trying to get benefits and has no documentation of her injury.”

Find Another Parent

Every state has a Parent to Parent Program. (The program in your state is listed on the State Resource Sheet produced by NICHCY or found at State Resource Sheets. This free program matches parents whose children have similar disabilities, conditions, and needs. It is a way that parents who are just figuring out the special educational system can learn from parents who have more experience. Another parent can help you locate information, provide emotional support, and give you tips based on their experience. As you enter the world of special education, who better to learn from than a parent who has already been an advocate for a child for many years?

Ideally, this program will match you with a parent of a child who also has a brain injury and who has similar needs. However, if this is not possible, you can still benefit and learn from a parent whose child has a different condition or disability. You have experience with brain injury, but another parent will have experience with special education. Together you can make a great team.

Posted on BrainLine June 21, 2010.

From Brain Injury Partners: Navigating the School System, the Oregon Center for Applied Science, Inc. Reprinted with permission.

Comments (2)

Please remember, we are not able to give medical or legal advice. If you have medical concerns, please consult your doctor. All posted comments are the views and opinions of the poster only.

My dtr had a 504 plan. Was doing poorly in grades due to missed classes and her TBI. The guidance counselor "recommended" we voluntarily withdraw her and do home school to "preserve her GPA". I was naive enough to agree. 6 months later, we are struggling with online classes and don't know what we are doing. I've contacted school district but help is slow coming. Beyond frustrated.

Have you considered homebound services? My daughter is currently receiving homebound services for her ongoing fatigue from brain injury and it has worked out well.