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Success Story:
Finally! This Tourette 8th Grader
is Getting an IEP

by Madelyn Stein


We were turned down twice for an IEP twice by our school district and once by a due process Impartial Hearing Officer.

The State Review Office decided he is eligible under IDEA.

Our district turned down my son for an IEP and a due process Impartial Hearing Officer turned down my son for an IEP. Finally, the State Review Office found my son eligible for an IEP under IDEA.

My son has Tourette Syndrome, ADHD, OCD, specific phobias, and anxiety. In elementary school he would act silly, distract his classmates, wander around the classroom, turn an occasional somersault across the carpet… and then whip through his worksheet in the last five minutes before lining up for lunch. Although he was not realizing his full academic potential, most of the time his work was messy but acceptable.

When his interruptions distracted others, the teacher would scold him and send him to the back of the room, to the hall, or to the principal’s office. This approach fueled his maladaptive behaviors and anxiety.

In fourth grade, he would no longer whip through classwork in five minutes. I began to have concerns about his academics. He got a 504 plan, but it wasn’t helping much.

First Request for FBA and IEP

At the beginning of fifth grade, I referred him for special education. I requested a Functional Behavioral Assessment (FBA) as part of the evaluation process.

The district responded that:

  • he wasn’t physically harming anyone, so he didn’t need an FBA, and
  • he wasn’t failing any classes, the 504 plan was sufficient to address his needs.

Eligibility for IEP: Denied

I filed for due process. I requested push-in and pull-out services to help with organization and written expression, enlarged worksheets, counseling and occupational therapy services, monitoring of behavior and engagement, and staff training about Tourette Syndrome.

The district agreed to give us all the supports I requested, but only if they added these supports to his 504 plan. They denied eligibility under IDEA. I accepted this compromise, and we did not go to a hearing.

But, there were 504 compliance problems. Not following the 504 plan resulted in nightmares, insomnia and school refusal, and set my child back with all his hard work in therapy.

I filed a discrimination complaint with the U.S. Department of Education’s Office for Civil Rights (OCR). Both sides attended mediation conducted by a special mediation team. The district and I signed a resolution agreement that called for a high-level administrator to be our point person and problem solver.

OCR Discrimination Complaint

In seventh grade there was less academic hand-holding. My son’s academics and behavior began to decline. His academic difficulties piled up and he became more discouraged. He paid less attention in class and his grades suffered. His behavior became more problematic.

The special education teacher who co-taught in his classrooms said since he was not an IEP student on her caseload, “he was not her responsibility.”

Our point person did not respond to email and told school staff not to respond to my email. During meetings he fiddled with his cell phone. He denied my requests for parent teacher conferences. We had less interaction with teachers. Compliance with the 504 plan suffered.

Retaliation: The District Shreds our 504 Plan

The district resented having to respond to information requests by OCR. They retaliated by convening a slash-and-burn 504 committee meeting. In that meeting, the district removed half of the accommodations and services in my child’s 504 plan.

I brought the following experts to the meeting:

  • my child’s treating therapist, a PhD in psychology with a specialty in ADHD and OCD, and
  • a representative of the Tourette Association of America, Greater NY State Chapter, an internationally recognized speaker, author, and trainer.

The district brought their lawyer to the meeting. He ran the show with a structured agenda that excluded my experts from the discussion. The district representatives dismantled my son’s 504 plan before our eyes, accommodation by accommodation.

We objected to the lawyer “gagging” us. She said the district could write whatever 504 plan it wanted. She said that Section 504, unlike the IDEA, contains no legal requirement for parent participation.

It was clear that the compromise agreement was no longer working.

Second Request for FBA and IEP

I made a new referral to special education and filed for due process.

I requested one combined special education impartial hearing to address both my 504 and IDEA concerns. In my hearing request letter, I reasoned that:

  • Under state special education regulations, the district should have conducted an FBA, since the child’s behaviors interfered with his own learning and that of others.
  • Under the Child Find requirement of the IDEA, the district should have noticed the child’s general decline in grades and should have found him eligible for an IEP.
  • Under Section 504 of the Rehabilitation Act, the 504 committee is supposed to include persons knowledgeable about the student. At our meeting, the district completely disregarded the student, invited experts, and parents.

I did not include a 504 non-compliance claim. If I had, OCR would have dismissed my pending complaint still under investigation.

The District Responds: Behavior problems? What behavior problems?

The district held a Committee on Special Education (CSE) meeting to revisit eligibility under IDEA. Here is the district’s point of view:

  • Behavior problems? What behavior problems? We have never suspended this student!
  • We only do FBAs on students who are seeking classification as “emotionally disturbed,” not as “other health impaired.”
  • The student was taking “accelerated” math and had no F’s on his final 7th grade report card. His disability did not have an adverse effect on his education.

Again, they found him ineligible under IDEA. We proceeded to schedule the impartial hearing.

Due Process Hearing

The hearing officer ruled for the district.

He wrote a slapdash decision full of spelling, grammar, and factual mistakes. It supported the district’s positions - hook, line and sinker.

I could find no indication that he had considered (or even read) my closing argument. In his analysis of the case, he simply parroted all the district's arguments.

The hearing officer stated, “Courts in the Second Circuit have uniformly held that ‘an adverse effect on a student’s educational performance’ encompasses only academic performance and does not encompass social/behavioral functioning.”

I appealed the decision. New York is a two-tier state, meaning that a parent may file for state review, in a quick process that involves no new evidence or testimony. The state must make the review decision within 30 days. My decision arrived three days early.

Successful Appeal

The review officer found my son eligible under IDEA.

Unlike the hearing decision, the review officer clearly explained her decision. She catalogued the relevant conflicting points of evidence and testimony. She explained how she weighed these points with specific citations.

She did not find a Child Find violation. In other respects, the appeal was a complete success.

Review Officer: “The student’s 504 plan was a 504 plan in name only”

What was the review officer’s reasoning?

It was clear from his 504 plan that the district recognized the student’s needs. The plan included such accommodations as frequent breaks, fidget items, enlarged worksheets and tests, OT services, counseling, Support Lab, and one-on-one instruction with alternative.

The district acknowledged that the student’s impairments “substantially limited the student in the areas of organization, concentration, attention, and behavior by adversely affecting age appropriate participation in school-aged activities.”

“Given the array of supports and services the student required,” as evidenced in the Section 504 plans developed by the district, the student should have been found eligible under IDEA in the eligibility meeting.

The Keys to Our Success

  • Documentation of behavior problems: My husband collected and elicited key emails going back to kindergarten. In the hearing, we presented district records that documented a history of behavior problems and increase in classroom removals.
  • Independent evaluations: The independent evaluators had predicted the student would have certain types of academic difficulties in middle school, and this is exactly what occurred. One of the independent evaluators testified at the hearing, further strengthening the case.
  • Tourette representative’s meticulous reporting: The Tourette Association representative had filed yearly reports of her observations of the student in school with precise descriptions of symptoms she observed. At the hearing, she carefully explained the connections between the behaviors she observed and the child’s diagnoses.
  • Staff descriptions of problem behavior: Despite the district strategy of sweeping the student’s problematic behaviors under the rug in their evaluations and reports, some honest descriptions of the student’s symptoms did appear in almost every piece of district evidence. The Review Officer saw them and cited them in her decision.
  • Enriched 504 plan: The district lawyer’s decided to provide a wide array of supports under the guise of an enriched 504 plan. This decision came back to bite her later. The review officer found that the extensive set of supports provided in the student’s 504 plans constituted an acknowledgement of the student’s special education needs.

I have filed a Freedom of Information Act request for the district’s legal invoices.


The following resources helped me through this process.

Pam and Pete Wright’s websites, books and DVD Surviving Due Process.

Pennsylvania’s due process ConsultLine and Parent Guide to Due Process Hearings. (These don’t exist in New York.)

Dorene Philpot’s Do-It-Yourself Special Education Due Process, An Educational Guide.

Perry Zirkel’s review article about Second Circuit special education legal decisions.

Sounding board support from Lloyd Donders, Esq., a special education attorney I found through the Wrightslaw New York Yellow Pages for Kids.

Tourette Canada’s online support forum.

Susan Conners, an internationally recognized speaker, author, trainer, consultant on management of Tourette’s in the classroom, and provider of in-service trainings in schools about Tourette Syndrome and associated disorders. She is founder and president of the Greater New York State chapter of the Tourette Association of America.

Self-Advocacy: The Student Speaks Up

I will let my son have the last word. Here is a short audio recording he made for the eligibility meeting. He explained in his own words why the school should reinstate nine of the removed 504 accommodations. I added the visuals to enhance the recording.

(embedded video: temporary location is https://youtu.be/qjZDgnBj4LI)

Madelyn Stein can be reached via the Greater New York State Chapter of the Tourette Association of America. Madelyn also posts on the Wrightslaw Way Blog as Sophie.

Created 03/02/17

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