Ontario is not the only province where children and adults with autism are struggling for support, says a national alliance that is calling for a federal strategy to address the neurological disorder that affects one in 66 children across the country.
Improved federal disability tax credits, supportive housing, employment programs, public awareness and research are among the measures Ottawa can take immediately as part of a national co-ordinated approach, the Canadian Autism Spectrum Disorders Alliance says in a blueprint released Monday.
“Autism is not just a provincial responsibility or a federal responsibility — it is a Canadian responsibility,” Sen. Jim Munson told an Ottawa news conference.
Munson, an honorary member of the alliance, spearheaded a 2007 Senate report, “Pay Now or Pay Later: Autism Families in Crisis” that urged Ottawa to act more than a decade ago.
“The ‘later’ has certainly arrived,” he told reporters. “And the missing link is a national autism strategy led by the (federal) government.”
Under the revamp, which took effect Monday, families will receive “childhood budgets” of $20,000 a year up to a lifetime maximum of $140,000 for children under age 6, and $5,000 a year for those between age 6 and 18 to a maximum of $55,000.
However, therapy can cost as much as $80,000 a year for children with severe needs, leaving many families scrambling.
Despite Ontario’s recent decision to double provincial funding to $500 million a year and to extend existing funding for six months, critics say the changes still mean cuts for those already receiving services and insufficient funds for those coming off the wait list. Meanwhile, educators are predicting chaos in the classroom as children with autism enter the school system without necessary therapy and support.
Lisa MacLeod, Ontario’s minister for children, community and social services, said she will spend the summer consulting with families on more needs-based funding. Her ministry will also work with the minister of education and minister of health to expand services for “better wraparound” support, she said last week.
MacLeod may have more to say about Ontario’s interest in a national strategy at a news conference in Toronto on Tuesday to mark National Autism Awareness Day, a spokesperson said.
Alliance chair Cynthia Carroll said the uproar in Ontario has inspired “a call to action … that is being heard across this country (but) is not unique.
“Every single province and territory across Canada is facing the exact same challenges when it comes to addressing the complex issues pertaining to autism across the lifespan,” said Carroll who is also executive director of Autism Nova Scotia.
“We need a truly national approach that puts people with autism at the centre and provides equitable access to support and services and information,” she said.
An estimated 500,000 Canadians have autism, Carroll added.
Ottawa parent Andrew Kavchak, whose 18-year-old son has a severe form of autism, said he was disappointed the alliance’s blueprint doesn’t address funding for applied behaviour analysis (ABA) therapy, the most researched treatment for the disorder.
“Across the country, none of the provinces treat intervention therapy for autism as a medical service covered by medicare,” Kavchak said. “This should be the core of any national autism strategy and it’s up to Ottawa to bring provincial health ministers together around this.”
Laura Kirby-McIntosh, president of the Ontario Autism Coalition, the parent group behind a Queen’s Park rally in March against provincial changes and almost daily picketing of MPPs offices, also questioned the absence ABA therapy, but welcomed more federal input.
“This blueprint paints a picture of the really important role Ottawa can play,” she said. “But calls for a national autism strategy are far from new, so it’s absolutely time.”
The alliance is calling for a national strategy, anchored in federal legislation, to be developed in partnership with the provinces and territories, Canadians with autism, their families, experts and clinicians serving the community. And it is urging all political parties to endorse the idea in the run-up to this fall’s federal election.
Munson, who called addressing the patchwork of autism support across the country a “matter of human rights,” said political parties have a “moral obligation” to include a national strategy in their election platforms.
A spokesperson for federal Health Minister Ginette Petitpas Taylor said the Liberal government “will continue to work with community groups, caregivers and all others to ensure Canadians with autism get the support they need.”
With files from Kristin Rushowy
Laurie Monsebraaten is a Toronto-based reporter covering social justice. Follow her on Twitter: @lmonseb