Prime Minister Justin Trudeau held a public town hall in Lower Sackville, N.S., on Tuesday evening where he was questioned about the country’s position on autism care by activist Carly Sutherland.
Sutherland is the mother of a little boy named Callum, a 9-year-old with autism who is prone to aggressive and violent fits.
The mother held a press conference at the Nova Scotia legislature in November asking the government to provide support for families in situations like hers, and she also sent Premier Stephen McNeil and ministers a letter detailing life with a child like Callum.
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Sutherland cannot interact with her son without help and she said it could take years before her son would be accepted into an appropriate group home in the Halifax region.
"We're living in a nightmare," Sutherland said at the meeting. "I can't hug him. I can't touch him. I listen to him scream upstairs and punch holes in the wall all day."
She advocates for the need of nationwide, standardized support for people with autism — for care that is not paid for by the provinces.
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"Families like mine should not have to subsidize health care and education for their disabled children," Sutherland told the prime minister. "This is a fundamental human rights issue."
The #Sackville Town Hall with @JustinTrudeau is tonight!
— Darren Fisher (@DarrenFisherNS) January 9, 2018
You can RSVP on @darrellsamson's website: https://t.co/l5YvqreJMv
Great opportunity for folks to ask the PM questions!
Hope to see you there! pic.twitter.com/qtp8x4aZNy
Provinces are responsible for education and healthcare delivery, Trudeau said, but he acknowledged the federal government could do more research and advocacy, and provide more support.
"I can't imagine how difficult things must be for you," Trudeau 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."
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Trudeau said the government is investing in autism research at the Canadian Institute for Health Research (CIHR).
CIHR invested $44 million from 2000 to 2012 in autism research, according to Canadian Institutes of Health Research.
In 2017, the National Institutes of Health in the US awarded research grants that totalled almost $100 million over the next five years for the Autism Centers of Excellence (ACE).
In the UK, research suggests that autism costs the country more than heart disease, cancer and stroke combined. The London School of Economics and Political Science estimated in 2014 that autism costs the UK at least £32 billion per year in treatment, lost earnings, care for people with autism.
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