Every year in America it is estimated that 50,000 people die
from epilepsy-related causes. It is the fourth most common neurological
disorder in the nation; behind migraines, strokes and Alzheimer’s. The
condition affects more than 65 million people worldwide and 200,000 people of
all ages in Illinois, including schoolchildren. One in three of these
individuals lives with uncontrollable seizures due to epilepsy.
The thought of a child being struck with a seizure while at
school is an issue of major concern to parents throughout Illinois, and it is
one which Rep. Terri Bryant (R-Murphysboro) had in mind when she introduced
legislation this spring to better prepare schools to assist a student having an
epileptic seizure.
The issue of seizures has been a
familiar one for Bryant. Bryant’s husband, Rick, has suffered from a seizure
disorder since he was 12. During her life as a private citizen, and then as an
elected official, Rep. Bryant has been a strong advocate for the cause of
epilepsy awareness. Earlier this year, she sponsored House
Resolution 128, declaring March 6 as Epilepsy
Advocacy Day in the State of Illinois.
But Bryant wanted to take another step to protect children
who might suffer an epileptic seizure at school. In January, after consultation
with the Epilepsy Foundation, she introduced the Seizure Smart School Act, House
Bill 1475, legislation which would require schools and parents or guardians
of epileptic children to consult on a seizure action plan for the student. The
parent or guardian would share information on epilepsy management during the
school day from the student’s health care provider, including instructions on
administering any prescriptions. The school would designate an employee or
paraprofessional as a “delegated care aide” to receive training in epilepsy and
be prepared to assist the student in implementing the seizure action plan.
“If we can help one person to recognize the symptoms, with
just one hour of training a year, it literally could save someone’s life,”
Bryant said in the Southern Illinoisan after presenting the bill in the House
Elementary and Secondary Education: School Curriculum and Policies Committee on
March 6.
The legislation also requires all school employees to
receive training in recognizing a seizure, and the appropriate first aid and
emergency protocols, consistent with best practices guidelines issued by the
Centers for Disease Control. “Grand mal” seizures can present symptoms such as
muscle spasms, but “petit mal” seizures which present much less observable
motion are more common in children. It is crucial that those nearby are able to
spot the warning signs and know what to do to help.
“It is to train those who are in education how to recognize
and how to deal with a seizure,” Bryant said while presenting the bill to the
House of Representatives on April 10, “to ensure the ability within a school to
have proper care given to students who have seizures. Seizures are very often
dealt with behind closed doors or in a very quiet way, it can be very embarrassing
if you have seizures and you don’t always want everyone to know that.”
Bryant said the bill was similar to existing state law
intended to help care for diabetic students while they are at school.
Also present in the committee hearing was Richard Stubblefield
of Mt. Vernon. He and his wife, Carolyn, lost their daughter Sarah to
complications from a seizure.
“I want to thank Mr. Stubblefield for coming up to
Springfield to advocate for such a worthy cause,” Bryant said. “I know that
Richard and Carolyn carry this banner very close to their hearts and I
appreciate their passion and support for this effort.”
As the bill moved toward passage, Bryant thanked the bill’s
bipartisan group of supporters for, “recognizing the need for schools and
parents to have a plan in place for students that suffer epileptic seizures
during school or during extracurricular activities.”
The Seizure Smart School Act passed the Illinois House 112-0
on April 10, and the Senate 57-0 on May 16. It was signed into law by Governor
J.B. Pritzker on July 12.