Safer Schools for Kids with Uncontrolled Epilepsy
We are a grassroots parent-led initiative dedicated to protecting children with uncontrolled Epilepsy in Ontario schools. Join us in ensuring safe, supported learning for every child
What We are Advocating to Change
My son Charlie is five years old and lives with drug-resistant epilepsy. He cannot advocate for himself, and his seizures are frequent, unpredictable, and sometimes subtle. Despite clear medical guidance from his care team at SickKids, Charlie’s 1:1 support was removed by his school board following a review, leaving him at serious risk of cluster seizures, delayed access to emergency medication, and SUDEP (Sudden Unexpected Death in Epilepsy).
The death of Landyn Ferris, a child who died after being left alone in a school sensory room is a devastating reminder that gaps in supervision and unclear policies can have serious and irreversible consequences. No family should have to experience a preventable loss because protections were inconsistent or unenforceable
PPM 161 was an important first step in recognizing the needs of students with epilepsy, but for children like Charlie, it is not enough. Medically fragile students still face gaps in supervision and enforceable policies. School boards interpret the guidance differently, leaving families to fight alone for their child’s safety.
We are advocating for specific, enforceable changes to PPM 161 that can be implemented quickly to protect children like Charlie and other medically fragile students across Ontario.
PHASE 1: Immediate Actions
Formal SUDEP Risk Assessment in Plans of Care
Each child’s Plan of Care should include a dedicated section addressing SUDEP risk, completed collaboratively with the child’s neurologist, primary care provider, and parents or guardians. Supervision requirements must be clearly connected to the child’s identified level of risk.
Direct, Line-of-Sight Supervision for High-Risk Students — Including Rest or Sleep Periods
Students identified as high risk must not be left unattended. This includes classrooms, transitions, and any rest or sleep periods. Monitoring must allow staff to recognize subtle seizure activity immediately and ensure proper documentation and follow-up after a seizure.
Updated Plan of Care Forms with Enforceable Expectations
Plans must include clear instructions, defined responsibilities, timelines, and accountability measures so all staff — including occasional or substitute staff — understand exactly how to respond during an emergency. A formal SUDEP-risk acknowledgment checkbox or signature could help strengthen accountability.
Consistent Province-Wide Protocols
Student safety should never depend on the district or individual school. Medically fragile students deserve consistent, enforceable standards of supervision and care across Ontario.
Phase 2 Considerations (Longer-Term Planning)
Comprehensive staff training in seizure recognition and response, emergency medication administration, CPR/First Aid, and AED use is essential for long-term safety. Implementation may require coordinated planning with school boards and sustainable funding models to ensure appropriate supervision levels and ongoing training.
These changes are about more than one child. They are about protecting Charlie, honouring the memory of Landyn Ferris, and ensuring that every child living with epilepsy can attend school safely. Safe at School Ontario is committed to meaningful action, accountability, and ensuring that every child is truly safe at school.
About Safe At School
Our Mission
At Safe at School Ontario, we are committed to protecting students with uncontrolled Epilepsy. Our goal is to ensure proper supervision and enforceable safeguards in schools across Ontario
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