In May I blogged about the introduction of Massachusetts House Bill 635, the Seizure Safe Schools Act. This proposed legislation requires that school staff and families collaborate to develop a doctor-approved seizure action plan for how to respond if a child has a seizure at school. The act requires public schools have at least one staff member who is trained to administer a seizure rescue medication and a manual dose of the vagus nerve stimulator. The Act also requires epilepsy awareness training for staff and students using a curriculum consistent with Epilepsy Foundation of America guidelines. The Epilepsy Foundation of New England, or EFNE has championed this bill for many years. They crafted the bill’s parameters, found legislators to co-sponsor it, and got constituents to submit written testimony. That’s where I was drawn in.
In May, I emailed written testimony supporting the bill to my state Senator, Pat Jehlen, and asked for a meeting with her. We met a month later via Zoom. I explained the bill’s impact on public school children with epilepsy. “Those students’ teachers will know what to do if their students have a seizure during the school day,” I said. “They can take what might be life saving measures to keep the child safe, and explain what’s going on to the other students, to keep the classroom calm. This is leaps and bounds better than how my teachers reacted when I had seizures at school.”
When I grew up, the vagus nerve stimulator didn’t exist. Seizure action plans that might include rescue medications weren’t required of school administrators. If I had seizures during class, teachers often overreacted. I had focal impaired awareness seizures. They were disruptive, as I lost awareness and control of my body. Although the seizures were noticeable to those around me, they didn’t require medical attention. But they were unnerving for my peers and teachers to watch. Witnessing a person unable to control their body is scary, so it’s not surprising that I had teachers who wanted to unnecessarily call ambulances. This response only further disrupted the day and drew more negative attention to my condition.
That scenario can be avoided by implementing HB 635/SB 422, An Act Relating to Seizure Disorders in Schools, outlined above. The bill will increase epilepsy awareness in schools and instantaneous treatment access for Massachusetts students with epilepsy. Passage of this act will allow students with epilepsy to avoid the awkward embarrassing situations I went through during my school days. Twenty-four states already have bills like the Seizure Safe Schools Act. The provisions seem so commonsensical it’s surprising that Massachusetts hasn’t passed one yet.
Apparently, Massachusetts’ legislature considered something similar in 2023, but the bill died in committee. While I’m pleased Senator Jehlen agreed to co-sponsor the bill, I’m afraid that the 2025 Seizure Safe Schools Act could have a similar fate. To prevent this, I joined a dozen local Epilepsy Advocates on July 21st at the State House. Each of us gave a 60 second testimony before the Joint Committee on Education about the bill’s importance. I promptly followed up with emails to all 17 Committee members, thanking them for their time and asking them to pass the bill in committee. I received a couple of automated responses plus one that looked like it was written by a human. Last week, I sent a second follow-up note to all 17 legislators, expressing fear about the bill dying in committee and re-requesting that they pass it. I heard back from two of them, including Senator Jehlen’s assistant, who assured me that Senator Jehlen appreciated our June meeting and my advocacy. She also promised that Senator Jehlen would see my latest email.
Those of us following the Massachusetts epilepsy advocacy news are waiting with bated breath for the Joint Committee to vote on the Seizure Safe Schools Act. Even if the Committee passes the bill, that’s just one of many subsequent required steps before the bill becomes law: Both the state Senate and House of Representatives must separately review, debate and vote on the bill. If both chambers approve the bill, it goes to Governor Healey for final approval. During any of these steps a majority “no” vote, or a gubernatorial veto would decisively kill the bill. Sometimes bills die less dramatically in committee, due to lack of action. I fear that could be the fate of the Seizure Safe Schools Act, which is why I’m urging everyone to reach out to the Joint Committee members and ask them to pass it (see below action call).
Given all the required steps, I was disheartened but not surprised to learn that during Massachusetts’ 2023- 2024 legislative session, approximately 7,500 bills were introduced and only 139 passed. This 2% success rate drives me to write multiple newsletters and send repeated messages to Joint Education Committee members, urging them to pass the Seizure Safe Schools act and keep it alive. As I advocate, I’m reminded of School House Rock’s I’m Just a Bill ditty, which outlined the process for passage of federal level bills. Broadcasted decades ago, during Saturday morning cartoons, the animated bill (pictured above) sings yearningly about his desire to become a law, and the long onerous journey through Congress, which is remarkably similar to the Massachusetts state legislature’s. “And if he [the president] signs me than I’ll be a law…. How I hope and pray that he will, but today I am still just a bill.” The cartoon song culminates with the president signing the bill into law, the state-level fate we want for the Seizure Safe Schools Act.
Pressure from constituents keeps bills on legislators’ radar. If you live in Massachusetts, please contact the Joint Committee on Education at jointcommittee.education@malegislature.gov and ask them to pass the Seizure Safe Schools Act. Be sure to include the formal title of the bill and the bill numbers: An Act Relating to Seizures Disorders in Schools, HB635 and S422.
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