Whitehorse 5-year-old with Type 1 diabetes denied educational assistant for kindergarten

A Whitehorse mom wants change after the Yukon education department denied her five-year-old daughter with Type 1 diabetes an educational assistant (EA) to help her manage the disease.

Jaime Trainor said the situation is a "huge disappointment" and has thrown a wrench into plans for her daughter, Sadie Raye Trainor, to start school. 

"As a family, we should be enjoying the summer instead of me constantly worrying that my child might not be able to attend kindergarten in August," Trainor said in an interview. 

Sadie Raye was diagnosed with Type 1 diabetes when she was 13 months old. The chronic disease requires careful management of blood sugar and insulin levels, which are impacted by food and medication but also other factors like activity level, temperature, stress and other illnesses. 

Too high or low a level of either can be life-threatening.

With a support worker, Trainor said Sadie Raye has been able to attend early learning and day camp programs. The family had what seemed like a positive transition meeting earlier in the year to discuss how she could be supported going into kindergarten, including assigning an EA to her health needs. 

However, Trainor said she was told a few weeks ago that Sadie Raye's school had received its EA allocation for the year and wouldn't get another.

Trainor said the news left her "very upset." 

"My child's a warrior and she knows that she will get very sick if A-B-C-D-and-E don't happen, but she can't manage this by herself because she's five," she said. 

Keeping Sadie Raye healthy involves careful carb-counting — sometimes to within a quarter of a sandwich — and while she has a continuous glucose monitor and insulin pump, there are situations where her blood sugar needs to be checked via a finger prick or her insulin manually measured and injected. It's unfair, Trainor said, to expect the five-year-old, or a teacher responsible for 25 other children, to do all of that. 

Not all EA requests are granted

The education department did not provide anyone for an interview. In an email, spokesperson Sophie Best declined to comment on specifics of the situation, citing privacy concerns. 

"Managing a student's medical condition is a highly personal process, based on the student's unique needs," Best wrote. 

"To do this, the department and the school works directly with families to find a path forward that meets their students' needs and keep them safe."

The department has more than 200 EAs for the 2024-25 school year, Best wrote, but requests for one are not always possible to fill. She also pointed to the department's Administration of Medication to Students Policy, which lays out the roles and responsibilities of parents and the department when a student is "at risk from severe or life-threatening medical conditions." 

CBC News reviewed the policy, which applies to students with various diseases including diabetes. It does not contain specific wording about who is to monitor a child with diabetes throughout the school day, but it does specify that in some cases staff may need specific training in administering medications to students who are expected to need it.

Best added the department has been working with the Department of Health and Social Services and the Yukon Type 1 Diabetes (T1D) Support Network on several initiatives. 

However, Yukon T1D Support Network president Marney Paradis said in an interview that the lived experiences of kids shows that the medication policy alone isn't enough. 

"We've had children who have gone blind. We've had children who've ended up in hospital for three weeks due to diabetic ketoacidosis," Paradis said.  

"And I mean, it's not all on the school, of course it's not… But the schools do have a key role to play."

The department, she said, has been slow to act on the organization's recommendations — among them, implementing specific policies on supporting students with Type 1 diabetes and guaranteeing that students who can't manage their disease on their own get a dedicated EA. 

"This coming January, it'll be seven years of us having meetings, regularly going to the department… and very, very little has been done," Paradis said. 

"It's frustrating…  And in fact, by refusing an EA for this sweet, precocious little five-year-old, it's a slap in the face to all of us who have been working so hard to make these necessary changes."

While Paradis said she believed the education department is well-intentioned, she also described it as a "dumpster fire," with staff "absolutely being pulled in a million directions." 

'Do what's right for these kids'

Not all students with Type 1 diabetes need full-time support, Paradis said — for example, teenagers may be mostly self-sufficient while at school. But for those that do, there are no guarantees. The network and parents have been able to advocate for individual students to get EAs assigned to them in the past, she said.

However, the support a child gets shouldn't be dependent on how much time and effort their caregivers can put into championing their cases. Implementing dedicated policies, she said, would eliminate uncertainty.

"Do what's right for these kids," Paradis said. 

Trainor, who's been working closely with the support network, said she backed the call for policy changes. 

"The day that Sadie Raye was diagnosed, I was diagnosed with a voice," Trainor said. 

"And it's hard, very hard, but … I'm doing it for all the children who are in the Yukon who are struggling to get support." 

Trainor said she hasn't heard any updates from the education department, and that she would support Sadie Raye herself in class if that's what it takes.

However, she said it shouldn't have to come to that. 

"I would love it if the people who are making this decision would come over to my house or go to Sadie's day camp and just walk with her for a couple hours and then tell me that she does not need support," she said. 

"I double dare."