Newton aims to keep students with epilepsy safe and ready to learn

Colleen Kelley, advocate of The Seizure Safe Schools Act, speaks at a hearing in Washington, D.C.Jack Hartzman

Newton Public Schools has implemented its own system for ensuring the safety of students with epilepsy, ahead of proposed legislation at the state level, according to the city’s director of School Health Services.

The proposed legislation, known as The Seizure Safe School Act, currently filed in Massachusetts would ensure school personnel — including nurses, teachers, and volunteers — are not only prepared but also can recognize and respond appropriately and efficiently to the student experiencing a seizure.

Ruth Hoshino, a nurse who is the director of School Health Services for Newton, said school nurses in Newton train staff, bus drivers, coaches, and cafeteria staff about what a seizure is and how to do a “seizure first aid.” She said nurses in the district also develop “individual health plans” for students diagnosed with epilepsy.

“Every student with seizures has a unique profile and a specific management plan,” Hoshino said. “Nurses work with families and health care providers to make a plan that serves the needs of each student.”

Once a plan is in place for a student, Hoshino said, they share details with teachers, principals, aides and others in the school to ensure they are aware of the student’s diagnosis.

“For students who may need medication at the time of a seizure, plans are made to have a nurse available throughout the school day, which includes field trips and after school activities,” Hoshino said. “The goal is to keep students safe and in school ready to learn.”

Schools hang up posters describing first aid for seizures in health rooms to identify common symptoms and follow first-aid steps, Hoshino said.

Newton’s standard practice for managing seizure care in schools is consistent with the legislation, Hoshino said.

“There is a Newton program called Understanding our Differences that has a unit on special medical conditions that includes seizures,” Hoshino said.

In the epilepsy module of the program, Hoshino said, students are shown a video of tonic-clonic seizure and learn how to help and be a friend to someone who is experiencing one.

William Murphy, director of Advocacy and Public Policy for the Epilepsy Foundation of New England, said the legislation is made up of three main components: providing staff with seizure recognition and first aid training, sharing access to needed medications, and having a seizure action plan.

Murphy said the legislation started as a grass-roots movement. Parents went to state Representative Shaunna O’Connell, a Republican who represents the Third Bristol District, to describe the challenges children with epilepsy are facing in schools. O’Connell introduced the bill in June before the Joint Committee on Education in Massachusetts.

At the first hearing last month on the bill, Murphy said, students and parents testified about their struggles with epilepsy in schools.

“We hear school situations where it’s not going so well, the seizures are dealt with inappropriately, the children have been isolated, removed from class or an activity because of their seizure disorder,” Murphy said.

Following the hearing, 16 state legislators cosponsored and signed the bill, Murphy said. The legislation already has passed in Texas, Illinois, Indiana and Kentucky.

“Epilepsy is a very common neurological disorder, 1 out of 26 Americans will be diagnosed with the disorder,” Murphy said. “It’s much more common than people think yet it’s so misunderstood and there is a lack of general information about it.”

Representative Kay Khan, who represents the 11th Middlesex District, said public education about children with epilepsy creates less stigma around the disability.

“The more people understand their differences the more we can do to make people understand that they can live with the disability they have,” Khan said.

After the hearing, Khan said, the bill is put under a legislative review process where legislators exam the bill and do further research.

Colleen Kelley, 23, who lives in Walpole and is one of the main advocates of the legislation, said her life fell apart after she was diagnosed with epilepsy in middle school.

Within the first year of her diagnosis, she was transferred to a different school in Walpole and put in an inclusion program where she was paired with an aide that was with her all day.

“If I were to have a seizure, I would be put in a wheelchair either for the day, or they would send me home,” Kelley said. “I didn’t have the type of seizure that I needed to be sent home; they just thought it would be easiest for them if I just wasn’t there.”

Kelley said the situation became so extreme when she started high school she was placed in a wheelchair the entire school day and pulled out of her mainstream classes. She spent most of the day in the same classrooms and at one point, she said, they told her she could not eat with her classmates after experiencing a seizure at lunch.

“I was extremely isolated, which led to being bullied,” Kelley said. “It led to me thinking I should isolate myself all the time, so that’s how it led to extreme anxiety and depression.”

Kelley traveled with other students to the District of Columbia to speak in front of Massachusetts representatives in Congress. In order to create change, she said, they had to show Congress they were people with real stories.

“If you hear from someone that has actually gone through it and see them actually talking about it they understand how important it is,” Kelley said. “It’s like you can see their mind change.”

A First Aid Poster from the Epilepsy Foundation.Ruth Hoshino