One of Susan Simpson’s scariest moments as a parent came when her diabetic preteen daughter’s blood sugar became dangerously low while on a tree planting field trip and neither she, nor any classmates, nor teachers had a snack that would prevent a health emergency.
Simpson, who monitors her child’s blood sugar levels from her laptop or phone, was close to calling 911 but managed to get a teacher on the phone and they rounded up the whole class, got on the bus and drove to a gas station so her daughter could get a source of sugar.
Simpson and other parents whose children have Type 1 diabetes are urging the Ministry of Education to create a provincewide standard of care for diabetes in schools, so it doesn’t vary from classroom to classroom, school to school, or board to board.
“For anyone with kids, you just want your kids to enjoy their childhood, be enriched through school or extracurricular activities and be safe while they do those things,” she said.
“Our kids are not safe right now.”
Technological advances in the management of Type 1 diabetes mean that most kids wear a pump that administers insulin so separate needle injections are not needed, and kids can wear a continuous glucose monitor so they can keep track of their blood sugar levels, as can their parents, remotely through an app.
But that doesn’t mean kids can manage diabetes on their own, especially young students or kids with cognitive disabilities, parents say.
Alana Diening’s seven-year-old son, for example, needs help doing the math to count the carbs in his food at lunch and inputting them into his pump. Accidentally putting in the wrong number could be life threatening.
“It’s a scary condition, but with the technology that we have, it’s totally doable,” she said. “The kids can thrive, but you can’t do stuff like not help them with their insulin.”
When blood sugar gets too low it can lead to symptoms such as confusion, weakness and shakiness, and even loss of consciousness.
Diening’s son has had reliable support at school through a publicly funded registered practical nurse, who would come to school at lunch to help him, but when the primary nurse went on leave, the care became sporadic and Diening was being told less than an hour before lunch period that no nurse was available that day.
“You talk to the nursing agency and they just say, ‘We don’t have nurses, what do you want us to do?”‘ she said.
“Then you talk to the school and they’re like, ‘We can’t engage in any part of your son’s care, so there’s nothing we can do.’ And then you go to the school board, and they’re like, ‘Oh, that’s the Ministry of Health.”
Diening reached out to her member of provincial parliament and heard nothing. She said she notified the Ministry of Education and heard nothing. Diening then reported the nursing agency to the Children’s Aid Society and that led to more stable care for her son, she said.
“We’ve resolved our situation for the moment, but … at no point do I have any assurance what will happen next week,” Diening said.
Ontario has a policy stating that all school boards should develop and maintain policies to support students with asthma, diabetes, epilepsy and who are at risk for anaphylaxis.
A spokesperson for Education Minister Paul Calandra said the ministry is currently reviewing that policy.
“As part of this review, the ministry will be evaluating implementation of the policy and hosting engagements with academic/clinical experts, condition-specific groups, parents, and education partners to help ensure students have access to a safe, healthy and inclusive learning environment,” Emma Testani wrote in a statement.
The policy is too vague, Diening and other parents say, and should include specific policies on issues such as who will support students with insulin administration, allowing students to keep their cellphone with them because it reads the glucose monitor and taking diabetes kits on field trips, among other measures.
Diabetes Canada is calling on all provinces and territories to implement a standard of care, saying only Nova Scotia, Prince Edward Island and British Columbia currently have standards that closely align with the national diabetes organization’s guidelines.
Having those types of policies standardized across the province would save parents from fighting individual battles, parents say.
Catherine Grixti’s son was lucky to have a wonderful educational resource worker, who provided reliable care for most of his time in school, she said. But Grixti said a lot has changed now that he is in high school, where most kids have a certain level of independence.
In addition to having Type 1 diabetes he has autism and is not always able to independently make sure his blood sugar is at a safe level, Grixti said. She is almost constantly watching his numbers remotely and messaging or calling him when he needs to take action.
“If he doesn’t pick up on his watch, and if I see that [his blood sugar is] dropping, I’m running to that school and I’m making sure I get to him in time, and if I don’t get to him in time, then I’m calling 911,” Grixti said.
“They have a right to an education … We’re not asking for much. We just want a policy that [schools] have to follow.”
