Dear Chair Conlon and Members of the House Committee on Education,
My name is Amanda McClary and I live in Essex Junction, VT. I am the parent of a child living with epilepsy, and I submit this testimony as an Epilepsy Foundation New England volunteer advocate in support of H.617.
Epilepsy is a neurological disorder that causes recurring seizures and affects people across the lifespan. It presents in many forms and can result from a variety of underlying causes, including traumatic brain injury. According to the CDC, one in twenty-six people will develop epilepsy during their lifetime. Thousands of Vermonters are currently living with epilepsy.
My son was homeschooled for much of his early education. During the final months of eighth grade, he was diagnosed with epilepsy following a head injury that significantly affected his neurological functioning. As I prepared for his transition into public high school, we believed that clear medical documentation and a Seizure Action Plan would be enough to ensure his safety.
It was not.
We were initially told he would “only need a 504 plan,” despite the complexity of his medical and neurological needs. What followed was about five months of delay before he finally received an IEP in February 2026 — more than halfway through the academic year. During that time, and even recently, we have encountered an inconsistent understanding of epilepsy in the school setting, including limited recognition of warning signs such as extreme fatigue, confusion, and altered responsiveness — symptoms that can precede more serious seizure events.
This past week alone, no one informed me that my son was exhibiting neurological signs at school. That lack of communication resulted in our family being in multiple emergency rooms within days. We have already endured a near-fatal seizure event in May 2025. I am not willing to see my child come that close to losing his life again because warning signs were missed or dismissed.
Additionally, unclear standards around access to prescribed rescue or bridge medications have created significant distress for our family during already vulnerable moments. Medical protocols should be straightforward and consistently applied, not subject to district-level interpretation or disagreement.
If Seizure Safe Schools protections had already been law, this transition would have been collaborative instead of adversarial. Staff would have received standardized seizure recognition and response training. Seizure Action Plans would have been implemented consistently. Access to rescue medication and clear parent notification protocols would have been clearly protected.
As a parent of a child living with epilepsy, I urge you to pass this legislation on behalf of the hundreds of children in Vermont who deserve to feel safe at school. Students with epilepsy should be able to focus on learning, building friendships, and reaching their academic potential without their safety depending on how persistently their parents are able to advocate.
Seizure Safe Schools protections should be enacted proactively, not in response to a preventable tragedy. I respectfully ask this committee to move H.617 forward before a crisis forces the issue.
Thank you for your time and consideration.
Sincerely, Amanda McClary