Mom who quit job to care for son with autism questions Trudeau about national 'crisis'
Published Tuesday, January 9, 2018 8:04PM EST
Last Updated Tuesday, January 9, 2018 8:46PM EST
A Nova Scotia mother forced to quit her job to care for her son because of his violent outbursts called on Prime Minister Justin Trudeau to fix Canada’s “fragmented system” of supports for children with autism.
Trudeau visited a high school in the Halifax suburb of Lower Sackville on Tuesday. It was Trudeau’s first stop on a Canada-wide series of town hall meetings, touted by the prime minister as an opportunity for Canadians to challenge him on issues.
One of the first questions came from Carly Sutherland, who shared her story with Trudeau. Her 9-year-old son, Callum, is so severely impacted by autism that he often lashes out in violence. Sutherland had to quit her job to oversee his care, and friends crowdfunded money to help her and her husband keep their house.
At the moment, supports for children with autism vary drastically from province to province. For example, in Ontario, children with autism receive behavioural support until they’re 18. In Nova Scotia, that assistance ends at the age of six.
“How does your government plan to address this crisis, and where do they stand on a national autism strategy?” she asked.
Trudeau said the federal government invests “significant amounts of money” into the Canadian Institute for Health Research, which supports autism research, and that health care delivery comes down to the provinces.
However, Trudeau said “there is more the federal government can and is doing on the research side, on the advocacy side, on the support side.”
“I look forward to continuing to work with groups and families like yours across the country to give you the kind of support you need, and you can have, to ensure that Callum has a great future and opportunities, while giving you the proper respite as well,” he said.
In an interview with CTV’s Power Play earlier Tuesday, Sutherland explained that her son’s behaviour hasn’t always been violent. The outbursts began last summer when Sutherland and her husband noticed that Callum, 9, began struggling to communicate.
Her child’s behaviour, which included kicking, punching, head-butting and biting, escalated to the point that his school called 911. Callum then spent six weeks at the IWK Children's Hospital.
“I can’t go near him without a support person present. He physically assaults me when I come near him. He punches holes in his walls. I used to say we took it day by day, but now we’re really just taking it minute by minute,” Sutherland said.
Without provincial dollars for the behavioural support workers her son desperately needs, Sutherland relies on respite funding from Nova Scotia’s community services to help offset the costs. The cost of caring for Callum far exceeds those supports.
“Traditionally, respite would be, here’s some money, hire somebody to take your child to the playground or the pool for a couple of hours so you can put your feet up. Callum’s behaviour is so severe that he’s not able to participate in any of those activities,” she said.
The solution, according to Sutherland, would be for the federal government to step in and build a national strategy for supporting children with autism. She also wants to see the government reallocate money for autism research to aid for families, such as money for behavioural support workers.
For the moment, every province and territory is “working in silos,” Sutherland said.
“The federal government is investing some money in research, but research is not really helping families on the ground, like mine, who desperately need help yesterday,” she said.
The federal government has been confronted for its lack of support in the past. In 2007, the Senate released a report that, in its very first sentence, declared that “families with autistic children in Canada are facing a crisis.”
The report, titled “Pay Now or Pay Later,” called on the federal government to establish a national autism strategy.
Eleven years later, Sutherland says she’s waiting for action.
“We need to establish a policy, we need to establish best practices, and we need to demand that children in need receive those supports, because those children and their families should not have to live this way,” she told CTV’s Power Play, adding that the problem has become “a human rights issue” in Canada.
“I believe that we are neglecting a huge segment of our population by allowing families to flounder alone.”