Parents urge province to create standards of care for Ontario students with diabetes

One of Suzanne Simpson’s scariest moments as a parent came when her diabetic 15-year-old daughter’s blood sugar dropped dangerously low during a plantation field trip and neither she, any classmates, nor teachers had a snack that could have prevented 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 entire 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 for diabetes care in schools, so it doesn’t vary from classroom to classroom, school to school, or board to board.

“For those who have children, you just want your children to enjoy their childhood, be enriched through school or extracurricular activities, and be safe while doing those things,” she said.

“Our children are not safe right now.”

Children need help with diabetes techniques

Technological advances in the management of type 1 diabetes mean that most children wear a pump that administers insulin, so there is no need for separate infusions, and children can wear continuous glucose monitors so they can keep track of their blood sugar levels remotely via an app, just like their parents.

But that doesn’t mean kids can manage diabetes on their own, especially young students or those with cognitive disabilities, parents say.

For example, Alanna Dunning’s seven-year-old son needs help counting the carbs in his food at lunch and doing the math to put them into his pump. Accidentally dialing a wrong number can be life threatening.

“It’s a scary situation, but with the technology we have, it’s entirely possible,” he said. “Kids can move on, but you can’t do things like not help their insulin.”

When blood sugar drops too low it can cause symptoms such as confusion, weakness and tremors, and even loss of consciousness.

Parents say child was left without support

Dunning’s son received reliable support at school through a publicly funded registered practical nurse who came to school at lunchtime to help him, but when the primary nurse went on vacation, care became sporadic and less than an hour before the lunch period, Dunning was being told there was no nurse 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?’ He said.

“Then you talk to the school and they say, ‘We can’t be involved in any part of your son’s care, so we can’t do anything.’ And then you go to the school board, and they say, ‘Oh, it’s the Ministry of Health.’

Dunning reached out to her member of provincial parliament and heard nothing. He said he informed the Education Ministry and heard nothing. Dunning then reported the nursing agency to the Children’s Aid Society, she said, and that led to more stable care for her son.

“At this point we have resolved our situation, but … I have no assurances at any point about what will happen next week,” Dunning said.

Ontario reviewing policy for students with diabetes

Ontario has a policy stating that all school boards must develop and maintain policies to support students with asthma, diabetes, epilepsy and those at risk for anaphylaxis.

A spokesman for Education Minister Paul Calandra said the ministry is currently reviewing that policy.

“As part of this review, the Ministry will evaluate the implementation of the policy and host engagement with academic/clinical experts, condition-specific groups, parents and education partners to help ensure students have access to safe, healthy and inclusive learning environments,” Emma Testani wrote in a statement.

Dunning and other parents say the policy is too vague, and should include specific policies on such issues as who will support students in insulin administration, allowing students to keep their cellphone with them as it reads glucose monitors and carrying diabetes kits on field trips, among other measures.

3 provinces have standards of care

Diabetes Canada is calling on all provinces and territories to implement a single standard of care, saying that currently only Nova Scotia, Prince Edward Island and British Columbia have standards that closely match the national diabetes organization’s guidelines.

Parents say standardizing these types of policies across the province would save parents from fighting individual battles.

Katherine Grixti’s son was fortunate to have a wonderful educational resource worker who provided reliable care for most of his time at school, she said. But Grixti said a lot has changed now that she’s in high school, where most kids have a certain level of independence.

In addition to having Type 1 diabetes, he also has autism and isn’t always able to independently make sure his blood sugar is at a safe level, Grixti said. She is almost constantly watching his numbers from afar and texts or calls him when she needs to take action.

“If he doesn’t pick up his watch, and if I see (his blood sugar) dropping, I’ll run over to that school and make sure I get to him on time, and if I don’t get to him on time, I’m calling 911,” Grixti said.

“They have the right to education… We are not asking for much. We just want a policy which (schools) will have to follow.”