Mother tells Trudeau autism care is a 'human rights issue'

A Nova Scotia activist and mother of a nine-year-old boy with severe autism asked Prime Minister Justin Trudeau about his government's stance on setting up a national autism strategy during his town hall meeting in Lower Sackville, N.S., Tuesday evening.

Carly Sutherland's son, Callum suffers from violently aggressive fits. She has said she can't hug or touch her son. She said he screams and punches holes in the wall all day.

She has been advocating for nationwide, standardized support for people with autism, making up for aspects of care that are not paid for by the provinces.

"Families like mine should not have to subsidize health care and education for their disabled children," Sutherland told Trudeau. "This is a fundamental human rights issue."

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Trudeau said while education and health-care delivery "are very much a responsibility for the provinces," there's more the federal government could be doing in terms of "the research side, on the advocacy side, on the support side."

Ottawa is investing "significant amounts of money" in autism research at the Canadian Institute for Health Research, he said. 

"I can't imagine how difficult things must be for you," he said. "This is something so many families across this country face in dealing with autism spectrum disorder and it's something we all have to do a better job working together to address." 

'A really desperate situation'

Sutherland has been working to make changes in Nova Scotia to help families in similar situations. She held a press conference at the provincial legislature in November asking the government to take action, and has written a letter to the premier and other ministers outlining what her life has been like living without the proper supports.

Ahead of the the town hall meeting, Sutherland told CBC Radio's Maritime Noon autism is a federal issue.

"There's no cohesive leadership to set policy on how we deal with our assistance with autism," she said.

While a national strategy "will probably be too late for Callum," Sutherland said it could be helpful to other families.

"We need improved educational options for our children, we need evidence-based therapies to be provided. Families should not be subsidizing these kinds of costs. Right across the board it's a really desperate situation," she said.

Defending decisions

Ahead of the meeting, Trudeau defended axing electoral reform.

Trudeau told CBC Radio's Information Morning that proportional representation was a "potential threat to the country" that "would have been damaging to our stability."

"My responsibility as prime minister is to make sure that I'm doing things that help the country," he said. 

"And moving towards proportional representation, as a few people wanted, would have been damaging to our stability, to our electoral system. And when it was obvious that that was really something that was a potential threat to the country, I decided that instead of ticking off an electoral box, I was going to stay focused on the things that actually matter."

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In the lead-up to the 2015 election, Trudeau vowed that a Liberal government would ensure a new electoral system was in place for the next federal vote, but he later backed down from that pledge.

Trudeau said he has "always been very open" to the idea of a ranked ballot, where voters mark their first, second and subsequent choices.

"But when it was obvious that there was a whole bunch of a very strongly vocal but very much a minority of Canadians who were going to accept nothing else but proportional representation, which I think would be bad for the country, and I've always said that, it was obvious there was no path forward," he said.

Government bills

During the five-minute interview, Trudeau also addressed his government's apparent slowness in passing bills. The Liberal government has passed 34 bills during its first two years in power, compared with the former Conservative government's 61 during the first two years of its most recent mandate.

"If people actually compare the impact of what we've done with what the previous government actually got done, people are really feeling the difference," Trudeau said.

As examples, he cited lowering taxes for the middle class and raising taxes for the wealthiest Canadians, strengthening the Canada Pension Plan, increasing the guaranteed income supplement for seniors and reducing poverty through the Canada Child Benefit.

"We've done really, really big things, and we've done them in ways that respect Parliament, that have a more independent Senate, that yes, perhaps pose certain challenges in terms of the pace of things through the House, but the size of the things we've done have made a deep and lasting impact in the opportunities that Canadians and their families have."