Education support limit frustrates parents with type 1 diabetic children

Every day and every night, Alana Marshall is monitoring her son's type 1 diabetes.

"When you have a child with type 1, it's a financial cost, it impacts your employment, you have this mental load, day and night, you lose sleep a lot of times," she said.

For the beginning of her son Declan's schooling in Capel, about 200 kilometres south of Perth, he has received extra support in the classroom.

In WA, individual disability allocation funding for children with type 1 diabetes is provided until the end of year two.

Ms Marshall said it was frustrating to be told her son would have to manage his condition on his own at the age of eight.

Schools can apply for funding extensions, which consider medical evidence and circumstances on a case-by-case basis. 

Policy 'unfair'

Ms Marshall said extra support for Declan was approved for year three, but the school would need to apply for the funding each year for ongoing support.

She said the policy was unfair for families already under pressure.

"He [Declan] has an implant in his arm … that takes a blood sugar reading every five minutes and sends that data to his phone," she said.

"My husband and I wear watches and the teacher has a watch which shows his levels because his blood sugar can drop really quickly if he's exercising, if he's playing soccer or something. 

"If his blood sugar gets too low, that's when he can become unconscious, have a seizure and without intervention, that can be fatal.

"To have this on top of … OK, well now your child's turned eight so each year we need you to justify why he should get support, when it's a lifelong chronic health condition that adults struggle to manage, it felt really frustrating."

Support funding can be used by schools for an education assistant to help staff classrooms and with diabetes management.

A petition for change

Ms Marshall created a petition that will go to WA parliament, calling for the removal of the year two cut-off and extension of funding until the end of primary school.

The petition has attracted more than 800 signatures.

WA Shadow Education Minister Liam Staltari, who is facilitating Ms Marshall's petition, said the policy was outdated.

"The truth is with modern devices, these kids absolutely need the help," he said.

"What we can't have is kids being forced to manage a potentially life-threatening condition on their own, in busy, complex classrooms."

Perth Children's Hospital diabetes clinical lead Dr Craig Taplin said managing type 1 diabetes had significantly changed with advances in technology, including insulin pumps and continuous glucose monitoring. 

He said families and children living with type 1 made hundreds of decisions a day, including calculating nutrients, carbohydrates and administering insulin. 

"It really is a 24/7 condition for children, adolescents and their parents and caregivers who are taking on a lot of that cognitive burden or cognitive load," he said.

"We do know that pumps and continuous glucose monitoring takes a significant proportion of that cognitive burden and offloads it some degree to an automated system.

"But there are still many, many interactions and points during a normal day in a healthy, active child where they still require thought and interaction."

Mr Taplin said there were about 1,300 children and adolescents with type 1 diabetes in WA, with three to four new children or adolescents diagnosed every week on average.

Review of policy in 'near future'

WA Education Minister Sabine Winton said support funding could be extended beyond year two.

"With each application on a case to case basis, considering the student's circumstances and supporting medical evidence," she said.

"I have asked the Department of Education to provide me with further advice on what the extension process involves, and how schools support families throughout this process."

Ms Winton said students' health care needs were managed in accordance with a departmental policy that was due for review in the "near future".