Early data from our Global Pediatric Epilepsy Surgery Registry shows that 90% of children after epilepsy surgery have individual education plans in school.

If your child has an individual education plan (IEP) after epilepsy surgery, by now you’ve probably experienced how challenging and overwhelming the process can be. But that’s just it – IEPs are a process. If you don’t understand the process, you won’t be able to advocate for an appropriate IEP for your child.

Improving educational outcomes for children after epilepsy surgery is a core strategic initiative for us, that’s why we arm you with knowledge so you can build an appropriate IEP for your child.

Before you start the process, watch our free IEP webinarsDuring these webinars you will learn detailed information about how you can build an effective IEP for your child.

After watching our webinars, you need to understand your procedural safeguards. IEP meetings often feel like a battle; your procedural safeguards are your sword and shield in the fight. Procedural safeguards are specific rights and protections for parents that are actually laid out in the Individual with Disabilities with Education Act. 

  • Understood.org: 10 key procedural safeguards in IDEA 
  • Center for Parent and Information Resources: Parental Rights Under IDEA
  • Independent Educational Evaluations: An important procedural safeguard if you disagree with the school’s evaluations. This video from our friends at Your Special Education Rights explains how you ask for an independent educational evaluation.
  • Prior Written Notice: One of your most important procedural safeguards is the right to prior written notice. Simply put, anytime the school says no to a request, or changes your child’s placement, or refuses to assess your child, they must give you prior written notice. Know this right inside out.

Advocacy Tip

Advocating for your child doesn’t mean you have a ticket to be rude, overbearing, or demanding. It also doesn’t mean you let a school district walk all over you because you’re afraid of hurting someone’s feelings or stirring the pot. A good advocate is a collaborator – you work with the school on the common goal of an appropriate IEP for your child.

Here are the steps.

Step 1 – Referral

Step 1 of the IEP process is referral to special education. If you suspect your child is not meeting certain functional or academic milestones, it may be time for formal assessments to determine if your child has at least one disability as defined in the Individuals with Disabilities Education Act that affects his/her ability to learn in an educational environment. In a public school, this is done if the child continues to achieve below standards and is not making sufficient progress despite adequate, research-based instruction.

The first step is to contact your school district and request an evaluation. Always do this in writing. This is called a referral.

If the school says no, they must give you prior written notice.

STEP 2 – Assessment

Step 2 in the special education process is assessment. The school district is required to provide a comprehensive educational evaluation which assesses your child in “all areas of suspected disability.” This is probably the most important part of the IEP process, as it helps the team understand the child’s strengths and needs. Know this step!  

If the school refuses to evaluate your child, the district must give you prior written notice.

If the district evaluates your child and you disagree with an assessment, or many of them, you can request an independent educational evaluation (one of your procedure safeguards). The school district must either agree to an independent evaluation or file due process against you to defend their evaluation.

STEP 3 – Identification

The third step in the special education process is identification.  Once the evaluations have been reviewed, a group of qualified professionals and the parents decide whether the child has at least one of the 13 disabilities listed in the IDEA. Federal law requires that parents be involved in this process

Reviewing the Assessments – Most school districts will hold a separate meeting prior to the IEP meeting to discuss eligibility.  At this meeting, the school district should explain the child’s assessment results to you. The child’s assessment should be explained by the assessors who evaluated the child. They should discuss what they did, why they used the various assessments they chose, the child’s results on those tests or other evaluation procedures, and explain what the scores mean when compared to other children of the same age and grade.

Some school districts may rush through the evaluation results at the beginning of the IEP meeting. This is unacceptable as it does not give you time to read through them, ask questions, or research whether the assessments used were appropriate for your child given other disabilities and challenges they may have. Always ask for a separate meeting to review assessments and eligibility prior to any IEP meeting.

STEP 4 – Develop the IEP

Now that you have assessments in all areas of suspected disability, and agree with what they conclude and recommend, it’s time to develop your child’s individual education plan! Review the assessments and highlight the areas of need. We suggest that you grab a highlighter pen and highlight your child’s areas of need in each assessment. The areas of need define the goals. The more areas of need your child has, the more goals will be in the IEP. The more goals, the more supplementary aids and services and related services your child will receive.

Next, write one area of need on one index card, or use our goal tracking spreadsheet. Organize each area of need under the following categories: Vision, Hearing and Listening, Academics, Gross Motor, Fine Motor, Orientation and Mobility, Speech & Language, Behavior and Attention, Social/Emotional, Self Care, and Other.

Write a letter of parental concerns: Now that you understand your child’s areas of need, write a letter of parental concerns to the IEP team. This letter should lay out the areas of need you want addressed by this year’s IEP goals. The IEP must address all concerns in this letter, so don’t skip this step!

Step 5 – Placement

Placement is the very last decision that is made about the child. It is made by the IEP team, or in some states, another group of people. It is based on the student’s service needs. In other words, now that the IEP knows what services your child needs, the team must decide where your child will receive those services. 

Placement does not necessarily mean an actual place or physical location but rather the type of placement. The IEP team must consider a continuum of placement options that can meet the needs of each student with an IEP and it must include any needed supplementary aids and services. However, a student does not have to try all the possible placements first. 

Step 6 – Review

The annual review of the student’s IEP is step 6. By this point, your child’s IEP contains:

You’re done, right? Not exactly… The next step in the IEP process is to review the IEP at least annually in an IEP team meeting. However, the parent can – and should – call an IEP meeting at any time they have concerns. The primary questions in these annual reviews are:

Step 7 – Re-evaluation

The IEP team requires current data that accurately describes your child’s grade-level performance in all academic areas as well as their functional skills. This is needed to develop a meaningful Present Levels of Academic Achievement and Functional Performance (PLAAFP) statement in your child’s IEP. The PLAAFP statement details your child’s needs and drives the decisions in the rest of the IEP process: goals, services, accommodations, and placement. 

At least every 3 years – or more often (even annually) if needed -(or more often if warranted), your child must be re-evaluated in all areas of suspected disability. This triennial review determines if the child continues to be a student with a disability as defined within the law and their educational needs. 

However, three years is a long time, especially for young children or those with very complex needs. Depending on your child, you may choose to request evaluations more often. 

  • No more than once a year, with exceptions – the student can be re-evaluated more than once a year if the parents and district agree, and depending on which measures are used (some measures are invalid if repeated within 12 months, but other measures to assess the same set of skills can be used);
  • At least every three years, with exceptions, such as:
    • When the student’s parent or teacher requests it – consider re-evaluation when:
      • there is a change in your child’s medical status (additional brain surgeries, major medical interventions such as a shunt, or setbacks such as a status epilepticus event);
      • new behaviors or other concerns arise (loss of skills or lack of progress);
      • at times of transition (entering kindergarten, middle school, or high school, and before exiting high school);
      • if the district wants to stop providing an educational or related service;
      • the previous evaluation was incomplete;
    • If the district determines that the student’s educational/related service needs warrant re-evaluation (such as improved or declining academic achievement and functional performance); 
    • If the district feels that the student no longer qualifies as a student with a disability, they must evaluate the child before removing any eligibility category;
    • Some states require more frequent evaluations for the most severely impaired child or children with intellectual disability – check with your state’s department of education.
    • For more information about re-evaluation, go to https://sites.ed.gov/idea/regs/b/d/300.303.

I know this information can feel like’s its coming at your like water in a fire hose. The steps above are laid out in detail on our website. Set aside some time each week to learn them. Chunk your learning. And in the next few weeks, we’ll be hosting intensive IEP workshops where you can learn about IEPs on your own time at your own pace. We’re here to help your child reach full potential after epilepsy surgery by arming you with the knowledge you need to be a powerful advocate.

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About the author

Audrey Vernick is the Director of Patient and Family Advocacy for The Brain Recovery Project. She is the parent of a child who had hemispherectomy for seizures caused by stroke. Ms. Vernick holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates and is certified by The ARC in future planning. She represents The Brain Recovery Project in the Rare Epilepsy Network‘s Adult Transition Taskforce and serves on the Youth Advisory Council HOBSCOTCH (HOme Based Self-management and COgnitive Training CHanges lives), a behavioral program designed to address memory and attention problems for people who have epilepsy.