A Whitehorse mother is calling for reform after the Yukon education department refused to provide her five-year-old daughter, who has type 1 diabetes, with an educational assistant (EA) to help manage the disease.
Jamie Trainor said the situation was “deeply disappointing” and had disrupted his daughter Sadie Rae Trainor's plans to enrol.
“You should enjoy the summer as a family instead of constantly worrying that your child might not be able to start kindergarten in August,” Trainor said in an interview.
Sadie Rae was diagnosed with type 1 diabetes when she was 13 months old, a chronic disease that requires careful management of blood sugar and insulin levels, which are affected not only by food and medication but also by other factors such as activity levels, temperature, stress and other illnesses.
Levels of either that are too high or too low can be life-threatening.
Trainor said support workers have helped Sadie Ray participate in early learning and day camp programs, and the family held a positive transition meeting earlier this year to discuss how they could support her as she started kindergarten, including allocating an EA to address her health needs.
But Ms Traynor said she was told a few weeks ago that Sadie Ray's school had received its EA allocation for the school year and could not take any more.
Ms Traynor said she was “deeply upset” when she heard the news.
“My child is a warrior and I know that if ABCD and E don't happen he will become seriously ill, but he's only 5 and can't handle it on his own,” she said.
Staying healthy for Sadie Rae involves careful carbohydrate counting, sometimes down to a quarter of a sandwich. Even though she uses a continuous glucose monitor and insulin pump, there are still times when she needs to prick her finger to check her blood sugar or manually measure and inject insulin. Trainor said it's unfair to ask a 5-year-old, or a teacher of 25 other kids, to do all that.
Not all EA requests are approved
The Department of Education did not make anyone available for an interview, and spokeswoman Sophie Best declined to comment on the details of the situation, citing privacy concerns, in an email.
“Managing a student's wellness is a very individualized process based on each student's unique needs,” Best wrote.
“To achieve this, the Department of Education and schools will work directly with families to find ways forward that meet students' needs and keep them safe.”
Best wrote that the department has more than 200 EAs for the 2024-25 school year but can't always accommodate all of the requests. He also pointed to the department's student medication management policy, which outlines the roles and responsibilities of parents and the department when a student is “at risk for a serious or life-threatening medical condition.”
CBC News The policy was reviewed.applies to students with a variety of illnesses, including diabetes. It does not have specific language about who will monitor children with diabetes during school hours, but it does state that in some cases, staff must be specially trained to administer medication to students who are expected to need it.
Best added that the province is working with the Ministry of Health and Social Services and the Yukon Type 1 Diabetes (T1D) Support Network on several initiatives.
But Marnie Paradis, executive director of the Yukon T1D Support Network, said in an interview that children's lived experiences show that medication policies alone aren't enough.
“We had kids go blind. We had kids that ended up in hospital for three weeks with diabetic ketoacidosis,” Paradis said.
“Obviously, it's not all the schools' fault … but schools have an important role to play.”
He said faculty have been slow to respond to the organization's recommendations, such as implementing specific policies to support students with Type 1 diabetes and ensuring that students who cannot manage the disease on their own have a full-time EA.
“January marks the seventh year that we've been meeting regularly and going to the department and very little has been done,” Paradis said.
“It's frustrating… and indeed, to deny EA to this sweet, precocious 5-year-old is an insult to all of us who have worked so hard to make the changes we need.”
While Paradis said he believes the Department of Education is well-intentioned, he described the department as a “dumpster fire” with employees “being pulled in literally a million directions.”
“Do the right thing for these kids.”
Paradis said not all students with type 1 diabetes need full-time support. For example, a teen may be able to be largely self-sufficient while in school. But there are no guarantees for a student to be self-sufficient. The network and parents have been able to lobby in the past to have individual students assigned an EA, Paradis said.
But the support a child receives should not depend on how much time and effort parents are able to devote to advocating for their child's case – implementing a dedicated policy would remove that uncertainty, she said.
“Please do the right thing for these kids,” Paradis said.
Mr Trainor, who has worked closely with advocacy networks, said he supported calls for policy change.
“The day Sadie Rae was diagnosed, I was diagnosed with a voice,” Trainor said.
“It's a lot of work, but we're doing it for all the kids in Yukon who are struggling to get help.”
Ms Trainor said she had not received any updates from the Department of Education and would personally support Sadie Ray in lessons if necessary.
But she said it shouldn't have to be that way.
“I would love it if the people making this decision would come to my house, go to Sadie's day camp and walk with her for a few hours and then tell me she doesn't need support,” she said.
“I'll try twice.”