Mother argues for basic diabetes care in schools
A St. Albert mother is pushing for a provincewide solution to gaps in the health and education system after a seven-month struggle to get her daughter essential diabetes care during school hours.
Deanna Emberg said she was baffled by the difficulties her family faced after her daughter’s Type 1 diabetes diagnosis at age 6, specifically when it came to getting help to deliver insulin injections at school. It’s a strain that prompts some parents to dash to schools at lunch, or even quit their jobs, to check their kids’ blood sugar levels and inject insulin.
“I don’t want other families to go through this,” Emberg said. “A lot of parents just give up.”
Diabetes Canada and the Canadian Pediatric Society are lobbying for a mandatory standard of care in Alberta schools for children with diabetes. Five other provinces already have guidelines spelling out how school staff should help manage students’ diabetes and respond in an emergency. About 4,000 children and teens in Alberta live with Type 1 diabetes, according to Diabetes Canada.
‘PARENTS ARE GOING NUTS’
When Emberg ’s daughter Natalie was first diagnosed, staff at the Stollery Children’s Hospital’s diabetes education centre encouraged the child to learn to test her own blood sugar.
They said school staff may refuse to use the device, which draws blood with a sharp poke to the finger.
In people with diabetes, the pancreas is unable to produce enough of the hormone insulin, which prevents blood sugar levels from rising damagingly high.
An endocrinologist prescribed Natalie a long-acting form of insulin her parents could inject in the morning to help control her blood sugar throughout the school day. It’s an older therapy and a not ideal for everyone.
On the long-acting therapy, Natalie had problems at school. She was thirsty, moody and had trouble concentrating, her mom said.
Failing to keep blood sugar under control is critical for long-term health, said Joan King, who works in government relations for Diabetes Canada in Western Canada. Frequent bouts of high blood sugar can lead to kidney failure, blindness, heart disease, stroke and limb amputations in later years.
“That’s why these parents are going nuts trying to keep that daily management under wraps, so their children aren’t seeing these awful complications in early adulthood already,” said King.
Emberg told her school principal she wanted to switch Natalie to a form of insulin that requires several injections throughout the day. That request prompted a seven-month bureaucratic backand-forth with the school, the St. Albert public school district, Alberta Health Services (AHS), the provincial education ministry and Natalie’s endocrinologist. At issue was who should give the insulin shots, and who was willing, or qualified, to train school staff.
Frustrated with the lack progress, Emberg filed a complaint to the Alberta Human Rights Commission last September, alleging the school district, education ministry and AHS were discriminating against her daughter on the basis of a disability.
PRIVATE NURSE
In February, the St. Albert school board hired a private nurse to come to Natalie’s school every lunch hour to administer insulin. Natalie checks her own blood sugar while an educational assistant supervises, and staff ensure she eats all of her food.
The compromise will cost the board $8,800 by the end of the year, St. Albert Public Schools spokeswoman Paula Power said in an email last week. Administrators are talking to colleagues from other school boards, too.
AHS home care workers will come into schools to aid some students with complex medical needs, Power said. Right now, those workers are not trained to help with diabetes care.
Alberta education representatives have recently met with Diabetes Canada and parents to discuss how the ministry can improve school supports for kids with diabetes, the minister’s press secretary, Lindsay Harvey, said in an email last week.
School boards are best positioned to decide how to meet students’ needs, she said.
AHS is working on a policy for schools to help manage children’s diabetes, said spokesman Kerry Williamson in a recent email. The health authority also provides training sessions to school board employees three times a year.
Emberg said many parents are qualified, and willing, to teach school workers how to inject insulin. “Insulin equals life. Therefore, you find a way.”