What should a 504 plan or IEP look like for a child with epilepsy?

Published by Unseen Progress, an independent publisher of caregiver research. Last reviewed 2026-05-10. Part of the epilepsy caregiver research overview.

Short answer. Most children with epilepsy need three documents at school: a Seizure Action Plan (SAP) describing what to do during a seizure, a 504 plan providing legal protection for physical accommodations and emergency response, and — if seizures or medication are affecting learning — an Individualized Education Program (IEP) under IDEA. The Epilepsy Foundation provides free SAP templates that the clinical literature endorses as the operational document; the 504 and IEP are the legal scaffolding around it (Epilepsy Foundation, 2023; Wagner et al., 2010; Wodrich et al., 2011).

The three documents and what each does

The most common confusion in epilepsy school planning is treating the three documents as interchangeable. They are not.

  • Seizure Action Plan (SAP). A one-page operational document. Describes what a typical seizure looks like for this child, what to do step by step, when to call 911, who to contact, and what to record. It is the document a substitute teacher or aide uses in the moment. The Epilepsy Foundation template is free, clinically endorsed, and used by most pediatric neurology programs.
  • 504 plan. A legal accommodation plan under Section 504 of the Rehabilitation Act. Covers any student whose disability substantially limits a major life activity (which epilepsy generally does). Provides legal protection for physical accommodations: rest after seizures, water access for hydration, medication administration during school hours, alternative test-taking arrangements after a postictal day, no penalty for absence on seizure days. Does not require demonstrated learning impact.
  • IEP (Individualized Education Program). A legal plan under the Individuals with Disabilities Education Act (IDEA). Covers students whose disability affects their ability to learn — and therefore requires specialised instruction, not just accommodation. Triggered when epilepsy or its treatment is producing measurable academic impact (ASM cognitive effects, frequent absences, postictal recovery affecting attention).

Many families need both a 504 (or IEP) and the SAP. The legal plan creates the obligation; the SAP makes the obligation operational.

What goes in the Seizure Action Plan

The Epilepsy Foundation's template structures the SAP around the actual decision points a teacher faces. The minimum content the clinical literature supports (Wagner et al., 2010; Hartman & Devore, 2016):

1. What a typical seizure looks like for this child. Specific to this child's semiology — staring spells, focal motor, tonic-clonic, drop attacks. "Looks like X for Y duration, followed by Z postictal pattern." 2. What to do during the seizure. Stay with the child, time it, protect from injury, do not restrain, do not put anything in the mouth, place on side after the convulsive phase ends. 3. When to call 911. Standardised thresholds: a single seizure lasting 5 minutes or longer, or a second seizure without recovery between them (status epilepticus criteria), or the first seizure of a new type, or a seizure causing injury, or a seizure in water. 4. Rescue medication, if prescribed. Diazepam nasal spray (Valtoco), midazolam nasal spray (Nayzilam), or rectal diazepam (Diastat). Dose, route, when to administer, and what to do after. School nurse and trained staff need explicit authorisation and training. 5. After the seizure. Quiet rest space, monitoring during postictal state, who to call (parent first, then second contact). Whether the child can stay at school or needs to go home — and the criteria for that decision. 6. Contact information. Parents, neurologist's office, and the school nurse if separate from the responder.

The SAP must be updated any time the medication or dosing changes. A stale SAP is one of the most common preventable causes of school seizure mismanagement.

What goes in the 504 plan

A 504 plan is the legal vehicle that requires the school to actually implement the SAP and the surrounding accommodations. Common 504 provisions for epilepsy, based on Epilepsy Foundation guidance and clinical literature (Wodrich et al., 2011):

  • Implementation of the SAP as written, including authorisation to administer rescue medication
  • Permission to keep water at the desk (hydration and medication side effects)
  • Permission to leave class without delay for the bathroom, the nurse, or rest space
  • Rest space available for postictal recovery, not the hallway
  • Excused absences for seizure days, neurology appointments, and EEG monitoring, with the right to make up missed work
  • Extended time on tests scheduled after a postictal day, or rescheduling
  • Notification to parents the same day, not the next day, when a seizure occurs
  • Safety accommodations for high-risk activities: swimming with one-on-one supervision, no climbing apparatus without spotter, bike helmet required in PE
  • Training for all staff who supervise the child — including substitutes, lunchroom aides, recess monitors, bus drivers, and field trip chaperones
  • No academic penalty for missed work due to seizures, side effects, or medical appointments

The plan should specify who is responsible for each accommodation — not just that it exists. A 504 that names roles is operational; one that doesn't drifts into "we have a plan but no one knows what's in it."

When to push for an IEP instead of a 504

The 504 covers accommodations. The IEP covers specialised instruction. Triggers for moving to an IEP, based on the academic literature (Wagner et al., 2010; Berg et al., 2008; Reilly & Neville, 2015):

  • ASM cognitive side effects affecting processing speed, memory, or attention to the degree that standard instruction is no longer effective
  • Frequent absences such that pace-based instruction is creating cumulative gaps
  • Specific learning disabilities co-occurring with epilepsy (common — pediatric epilepsy has elevated rates of co-occurring ADHD, learning disabilities, and language disorders)
  • Postictal patterns affecting full school days, not just hours
  • Cognitive decline associated with specific syndromes (Landau-Kleffner, Lennox-Gastaut, electrical status epilepticus during sleep)

The trigger for IEP eligibility is documented academic impact, not the epilepsy diagnosis itself. The family typically requests a full educational evaluation through the school district; the evaluation determines whether the child qualifies under IDEA's "Other Health Impairment" category (which is where epilepsy usually fits).

The meeting that produces the plan

The plan emerges from a meeting — a 504 meeting for the 504, an IEP meeting for the IEP. Both follow a similar structure, and the clinical literature consistently identifies caregiver preparation as the strongest predictor of an operational outcome. What to bring:

  • The current SAP from the neurologist's office, with the most recent date and any rescue medication orders
  • A seizure log showing frequency, semiology, recent breakthroughs, and any school-occurring events
  • A medication list with cognitive and behavioural side effects documented
  • Specific examples of where current school accommodations have broken down, with dates
  • The list of accommodations being requested, in writing, before the meeting
  • A second adult — partner, friend, or epilepsy parent advocate — to take notes and ask the question you forget

The meeting produces a written plan. The plan is reviewed annually at minimum, and re-opened any time the medication, seizure pattern, or school setting changes.

What the research says about school knowledge gaps

Multiple studies have found that teachers and school staff systematically underestimate what they know about epilepsy, often overestimating risks (the child will die during a seizure) while underestimating frequency-management needs (Bishop & Boag, 2006; Bannon et al., 1992). The implication for the family: do not assume the school knows. Walk every responsible adult through the SAP in person at the start of the year, after any medication change, and after any significant seizure event. The Epilepsy Foundation offers free Seizure Recognition and First Aid Certified training that schools can take.

What the research suggests doing

1. Get an updated SAP from the neurologist's office at every appointment, with the date visible. 2. Request a 504 meeting at the start of each school year. Bring the documents listed above. 3. Push for the SAP to be operationally distributed — printed, laminated, posted in the classroom, in the nurse's office, in the substitute folder, and in field trip materials. 4. If cognitive side effects, absences, or learning gaps are showing up, request a full educational evaluation in writing. The school has timelines it must follow once a written request is on file. 5. Re-open the plan after any medication change, any new seizure type, or any school-occurring event. Stale plans are the single most common failure mode.

Related questions

References

  • Epilepsy Foundation. (2023). Seizure Action Plans. https://www.epilepsy.com/preparedness-safety/action-plans
  • Wagner, J. L., Smith, G., Ferguson, P., Horton, S., & Wilson, E. (2010). A hopeful, therapeutic approach to childhood epilepsy: integrating school nurse training. Journal of School Nursing, 26(4), 279–289.
  • Wodrich, D. L., Jarrar, R., Buchhalter, J., Levy, R., & Gay, C. (2011). Knowledge about epilepsy and confidence in instructing students with epilepsy: teachers' responses to a new disease-specific questionnaire. Epilepsy & Behavior, 20(2), 360–365.
  • Berg, A. T., Smith, S. N., Frobish, D., et al. (2008). Special education needs of children with newly diagnosed epilepsy. Developmental Medicine & Child Neurology, 47(11), 749–753.
  • Reilly, C., & Neville, B. G. (2015). Academic achievement in children with epilepsy: a review. Epilepsy Research, 112, 7–10.
  • Bishop, M., & Boag, E. M. (2006). Teachers' knowledge about epilepsy and attitudes toward students with epilepsy: results of a national survey. Epilepsy & Behavior, 8(2), 397–405.
  • Hartman, A. L., & Devore, C. D. (2016). Rescue medicine for epilepsy in education settings. Pediatrics, 137(1), e20153876.

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