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Learning Supports for Children and Young People with AE

Learning Supports for Children and Young People with AE

May 8, 2019  |  Alison Westerkamm and Missy Simpson

After a diagnosis of Autoimmune Encephalitis many children and young people will need specialized learning supports to enable them to succeed at school. This blog post explains what Alison Westerkamm discovered when navigating her way through the learning support maze for her daughter in the United States.

Thanks to the guidance and support IAES gave us during my daughter’s Individualized Education Program (IEP) process, our second meeting with the school was much more productive and they incorporated all of our requests!

We were finally able to get a bus home at 1:30pm that drops off at our house. During the first meeting, they couldn’t help us at all with transportation and we had to fight just to get noise canceling headphones for testing. Not signing the initial proposed IEP, was powerful in getting our concerns addressed. Schools often say they can’t when, in fact, legally they can and are REQUIRED by law.

Here are some other tips:

  1. Request a special education evaluation, as soon as possible and submit your request in writing. Schools have 50 school calendar days to complete it. The clock starts when they receive your written request. Once the evaluation is completed, they will schedule a case conference meeting to determine eligibility for services. The information you provide during the evaluation is equally as important as individual test scores. Don’t forget that evaluation results support eligibility for services and drive IEP goals. Also, request a copy of the school psychologist and any other evaluation reports, prior to the case conference meeting.

  2. Get letters from your child’s doctors supporting need for services. Provide information and articles about AE – but most importantly educate about AE and how it personally impacts your child’s daily functioning.

  3. AE should be covered under the designation of ‘Other Health Impaired.’ Schools may do a 504 Accommodation Plan first, but file under the Individuals with Disabilities Education Act (IDEA). The required IEP under IDEA carries more weight and has to be followed. Our daughter started 9th grade at her new high school in January, because she was hospitalized for so long during the fall. She started on a modified schedule with a 504 Accommodation Plan. We couldn’t request testing until she was a registered student at the school and started her first day.

  4. Familiarize yourself with special education laws and your parent rights before the case conference meeting. Consult with a local advocacy group.

  5. Know what kind of accommodations you want for your child, before going into the case conference meeting (e.g. audio/digital texts, magnetic locker key, teacher notes, chunking, testing free from distractions).

  6. Take notes or record the meeting. Everything you say does not always end up in their transcription of the meeting. It’s good when they know you are paying attention to everything and documenting it. I brought my laptop into the second meeting.

  7. Don’t feel pressured to sign the initial proposed IEP if it does not adequately meet your child’s needs. Tell them you need time to review it. Write a letter of parent exception to the proposed IEP. In it, state what you want for your child and why – support with articles/links. Make sure they respond to each of your concerns, within a 5-10 day time frame and include your letter in the second IEP meeting documentation. Don’t sign the revision IEP, until you see that it reflects the changes you want.

  8. If the meeting gets tense, it can feel like the school vs. parents. Definitely advocate for your child, but do so in a way that is respectful and courteous. Remind them that we all want the same thing, for my child to have the necessary tools to be able to learn and be as successful, as students who do not have a medical condition or disability. It’s important to say that even though my child may not appear sick, these are the symptoms and deficits he/she struggles with on a daily basis and what it may look like in the classroom. Liken it to the struggles of students with TBI and how the recovery process is similar.

I hope my experience can be helpful to someone else in our AE community.

When Alison initially posted the above information in the IAES Face Book educational group for patients with a diagnosis and their loved ones, another member, Missy Simpson added the following.

Really good information. Thanks for sharing.  A couple of clarifications worth sharing

  1. AE itself is not a qualifier for special education, even under “other health impaired”. The student must be functioning below grade level as a result of the AE to be eligible for special education. For example, a child with severe fatigue issues and seizures may still be working on grade level, but may very well need some assistance to maintain those levels.

  2. Many of our “AE kids” are more likely be eligible for a 504 plan, with accommodations needing to be put in place to meet their needs. Schools are still required to follow these plans! And if one accommodation doesn’t work – try something else!

  3. Be prepared to present accommodations that you know work for your child! There is a good chance the school may not have thought of some of the strategies that work for your child. Always think outside of the box when it comes to accommodations. As a former Assistive Technology Facilitator for a school system, I speak from personal experience.

  4. Recording the meeting is a great strategy, so that you can go back and listen later, rather than getting caught up in taking notes, and missing important dialog – but, you have to let the school know your intention is to record the meeting.

  5. Centers for Independent Living (CILs) exist in all 50 states, and include advocacy as one of their services, free of charge. Many CILs will provide advocacy services for parents of children with special needs. Find your local CIL and ask them!

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As an advocate, I was once asked by my former co-workers, “Why are you on that side of the table?” that was exactly why! There should not have to be a us/them at the table. We should all be there for the same purpose. Sometimes you just need to drive that point home a little harder than others.

Websites that may help:

What is an IEP?

National Council of Independent Living 

A Guide to the Individualized Education Program U.S. Department of Education


International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.

You generous Donations allow IAES to continue our import work and saves lives!

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.

International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

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