A local parent is putting the heat on the public school board and the provincial government for greater support for kids with epilepsy through a new initiative.
Amy McQuaid of Brighton has recently launched “Safe at School Ontario” a grassroots parent-led campaign to change PPM 161, the Epilepsy Plan of Care policy, to include sudden unexplained death from epilepsy (SUDEP) risk assessments and enforceable rules for one-to-one supervision for children with uncontrolled epilepsy.
This is a personal cause for McQuaid, who says her five-year-old son Charlie no longer has one-to-one support after having it last year for JK and for the first half of this school year.
“He has no ability to self-advocate, he has no recollection of seizures, and he has no ability to administer his own emergency meds,” McQuaid explained in an interview.
She emphasized the need for consistent, province-wide policies and mandatory first aid training for teachers, something that parents say has been ‘lacking,’ particularly in the 2024 death of Trenton’s Landyn Ferris from Dravet syndrome, a rare type of genetic epilepsy that can cause seizures.
“There are these gaps in policy, because you don’t know until you know. I think a lot of parents navigating the system realize they are not in the black and white category, and they’re in this sort of gray area,” McQuaid explained.
“It turns out, unfortunately for us, that my son is in a gray area, and I don’t think that that’s fair, because he is not the only kid in Ontario who has uncontrolled epilepsy, and all children deserve to be safe at school.”
McQuaid added he hasn’t been able to go to school since his support resources were removed, as she will not send him without them.
“Not all parents have the flexibility of being able to stay home with their kid. I have my own business. I am my own boss, and I work my hours around my child. But if I was a single mom, or if I was working like a job where it was an hourly rate and you had to be in the office, I don’t know how we as a family would be able to manage that,” McQuaid acknowledged.
“That makes me think of those families when I’m thinking about Charlie, because it can’t just be about Charlie. It has to be about all of the other kids and all of the other parents that are dealing with this. They feel like they’re alone and are at risk of losing their house because they can’t pay their mortgage and their kid can’t go to school or (they are) sending their kid to school in an unsafe circumstance because they have no choice.”
On a positive note, McQuaid said she and the campaign group have made progress with the Special Education Appeal Board committee.
The board classified Charlie with ‘multiple exceptionality’ (children who exhibit both high learning potential and one or more special educational needs or disabilities) and two of the three board members have said that the school board should reinstate his support, though that is not an enforceable decision.
Additionally, McQuaid said she and other parents on board the campaign are continuing conversations with advocacy groups such as Epilepsy Ontario and reaching out to other provincial bodies that deal with epilepsy advocacy.
“Hopefully by March, when the government is sitting again, they will consider these changes, because it’s a lot safer when you have a provincial policy that’s clearer for all.”
You can find more information about Safe at School Ontario at the corresponding link.
