Now that summer break is over, it’s time to think about your child’s return to school. Parents of children who have had brain surgery for epilepsy might wonder, “How can I make sure my child is receiving the supports and services they are entitled to?”  This may be a time of excitement, anxiety, worry, hope, or mixed feelings for you and your child. 

If your child has an Individualized Education Plan (IEP) or 504 Plan, there are some things you can do now to help ensure a smooth start to the school year. 

New to IEPs or need a refresher? Watch our three-part video series on how to build your child’s IEP after epilepsy surgery.

We all want reassurance that the required supports and services will be in place to help our children learn and grow this school year. There are also steps you can still take if your child did not receive all of their services or if they failed to make progress on any of their goals at any point during the pandemic.

Consider writing a letter requesting an IEP or 504 team meeting at the beginning of the school year. This is a great way to ensure that all members of your child’s IEP or 504 team are on the same page about what will be provided to your child, especially if the student will change teachers, classrooms, or schools since last year.

Did you know that you can call an IEP meeting at any time? You don’t need to wait until your child’s annual IEP meeting.

  • School districts must ensure that each child with an IEP is provided a “free and appropriate public education (FAPE),” which may require the team to amend a student’s IEPs several times throughout the year to ensure that the appropriate services and supports are in place.
  • If this is not possible, or in addition to this more formal meeting, it’s a good idea to set up a meeting with your child’s classroom teacher to discuss the classroom set-up and any necessary accommodations for the student’s visual, auditory, sensory, orthopedic, behavioral, social-emotional, medical, or other considerations (as outlined in their IEP or 504 Plan).
  • Many parents like to provide a one-page student profile, which a substitute teacher or paraprofessional could review to get a quick but detailed view of the child’s needs throughout the school day.
  • Other families and schools use communication logs to ensure good back-and-forth communication between school and home.
  • Before you meet with the IEP team, share your parent concerns and any updates from summer therapies or new areas of need.

If you have concerns about your child’s needs that are not spelled out in your child’s IEP (yet!), ask yourself these questions:

A great way to learn about this topic is to review our step-by-step process, Seven Steps To Build Your Child’s IEP After Epilepsy Surgery. 

Remember that the IEP must be based on the child’s Present Levels of Academic and Functional Performance (PLAAFP), which is based on all of the various assessments that make up that comprehensive evaluation in all areas of suspected disability. Some assessments might need to be done yearly rather than every three years due to our kids’ atypical trajectories or medical setbacks. 

Never skip assessments! Having current, valid information about your child’s strengths and needs is essential.

If the school’s evaluations were not comprehensive enough to get a true, complete picture of all of your child’s needs, you might consider requesting additional evaluations or an Independent Educational Evaluation (IEE) at district expense. 

Once new evaluation reports are complete, call another IEP or 504 team meeting to review the findings and recommendations and make needed changes to the IEP. See: How to get your child’s IEP revised after evaluation.

If your child had any private evaluations over the summer, you can also call an IEP or 504 team meeting to discuss those assessment reports.

Parents are central to the development of the IEP. 

You can get “parental input” into the IEP by writing a letter of parental concerns.

Consider our free School Training, available to help your school team understand the implications of your child’s specific epilepsy surgery. 

Your child’s school team may require training in his or her seizure action plan and appropriate rescue medications, or other health related needs.

Teacher training might also be needed, and you can ask for that as part of the IEP process. While teacher qualifications overall have been reduced nationwide, IDEA has not changed – a child with a disability must still have qualified teacher to instruct them.

The IDEA regulation §1462.(a)  requires that schools have:

Personnel development to improve services and results for children with disabilities… To ensure that those personnel have the necessary skills and knowledge, derived from practices that have been determined, through scientifically based research, to be successful in serving those children.

See How do I get 1:1 support for my child at school? and consider writing a letter to your school team highlighting the reasons that 1:1 support across the school day is needed. We have a sample letter here.

Before school starts is a great time to pull out that IEP and review their goals and progress. Look at their previous IEP goals to track progress over time. 

  • Note which goals your child made progress on and which ones they didn’t make progress on.  
  • Were all of the goals being worked on? 
  • Were services provided as written in the IEP? 
  • If the school says your child is making progress, do they have data to support this (such as teacher notes, logs, test scores, writing samples, etc.)?
  • Document what you observe at home – yes, it does count!

If progress is not being made, review My Child Is Not Meeting IEP Goals, Now What?

The school is also required to provide measure of progress in both the general education curriculum and their unique IEP goals. How well is your child progressing in the general curriculum? Did you get report cards and updates of progress on goals at least 3 times last year? 

If the answer to any of these questions is “no” consider bringing up these topics with your child’s educational team.

If the school district was unable to provide all the services, supports, interventions, and instruction that were required in your child’s IEP (especially “related services” such as speech, occupational, and physical therapy, behavioral supports, etc.) then the school may be required to provide makeup services for those missed services. This is called compensatory education.   

The Individuals with Disabilities in Education Act (IDEA), the federal law that protects students with disabilities,  does  not  include  the  concept  of  compensatory  education.  However, if a school fails to provide FAPE to a student the school may offer a ‘remedy’, or a parent may request this from the district (sometimes this needs to be resolved through mediation). 

  • During the pandemic, the federal government has put funding and practices in place to allow schools to offer ‘makeup services’ to students who lost learning during COVID. 
  • Even when schools were closed due to COVID, the law says that students with an IEP are still entitled to FAPE.

A child might be entitled to compensatory or makeup services if:

Generally, compensatory education will be decided at an IEP meeting. In order to start this conversation with your school team, gather your thoughts and your data, and then collaborate with your child’s educational team on a possible solution. If the IEP team agrees that additional services are necessary, then an IEP should be developed that includes services and supports to help the student bridge any gap in performance between where the student is now and where the student was expected to be.  

In addition, all educational services provided to students without disabilities must be made available to their disabled peers. For example, if the district offered a summer reading maekup program for general education students who experienced “learning loss” during the pandemic yet they did not include your student in that program, ask the team how they are going to remedy that error.

There is no “one size fits all” approach for special education programming and services.  You may request additional or different services or supports than proposed by your school district.  Your knowledge of how your child learns at home is essential knowledge. Share with your team what works best for your child and be a part of the decision making process on the IEP team.

If you need more support or have any questions, join us for Power Hour!

 

Back-to-school checklist

  1. Set up a meeting with your child’s teacher(s) to discuss classroom set-up, accomodations, their seizure action plan, or other concerns.
  2. Prepare a one page student profile for the teacher, related services providers, paraprofessionals, substitute teachers, etc. 
  3. Request an IEP meeting – in writing, always!
  4. Be sure to include your letter of parental concerns. 
  5. Request any needed assessments or IEEs. (Check in with your child’s neuropsychologist about when a re-evaluation makes sense, or ask the school to provide this assessment.)
  6. Create a new IEP binder or spreadsheet for the year with a focus on student work and progress data.
  7. Pull together any new assessment reports, summer tutoring data, private therapy updates, changes in medications, or health updates and highlight recommendations from any new reports (neuropsychology, audiology, vision, literacy, etc.). 
  8. Provide copies of any evaluations that you wish to discuss in advance, and, if possible, invite the evaluator to attend the IEP meeting – be sure to notify your school team first!
  9. Two weeks before the IEP meeting, ask the school to provide the draft IEP, all assessments, proposed goals, and any other data they are using to determine your child’s IEP needs and services.
  10. Record your IEP meeting if your state allows it – notify your school team first. 
  11. For every “no” from the school district, they must provide Prior Written Notice (PWN). Make sure you understand PWN! ALWAYS ask for any district, local, state, or federal policy IN WRITING
  12. Review Seven Steps To Build Your Child’s IEP After Epilepsy Surgery

Print out all relevant Brain Recovery Project guides and organize into a binder for the teacher (such as An Introduction to Cortical Auditory Impairment After Hemispherectomy – includes impact from any surgery that removes a temporal lobe); Vision After Hemispherectomy, TPO Disconnection, and Occipital Lobectomy; Education After Hemispherectomy; and Quick guides: Strategies For Cortical Auditory Impairment After Hemispherectomy, Helpful Educational Strategies For Children With Homonymous Hemianopsia, etc.)

Resources:

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 for 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.