Ontario’s autism program should emphasize early intervention but also include funding caps on services for children and youth to ensure it survives into the future, an expert panel recommended Wednesday.
The province’s Progressive Conservative government went back to the drawing board earlier this year after its original plan for autism services sparked waves of protests. One of the most contentious aspects of that plan was a service funding cap that families said offered too little money to provide meaningful amounts of therapy.
Panelists reluctantly included annual limits on the amount of service kids could receive in their report, describing those limits as unavoidable for the foreseeable future and calling them necessary to ensure the province’s autism program remains sustainable.
“We struggled with that,” said Laura Kirby-McIntosh, the president of the Ontario Autism Coalition who sat on the panel.
The caps envisioned by the panel would be a far cry from the previous, income-based maximum of $20,000 a year for kids under six and $5,000 per year until they were 18. But the panel recommended that the exact amounts should be determined later by an implementation committee and by a child’s care providers, Kirby-McIntosh said.
“What they gave was sub-clinical therapy amounts to everybody,” she said. “This puts the clinicians in the driver’s seat.”
Children, Community and Social Services Minister Todd Smith said the panel’s recommendations will provide a “strong foundation” for the new program. He has already promised the government’s next effort will be based on the needs of children and their families, and will come with a $600 million budget – nearly double the old funding envelope – but said he requires time to review the report before finalizing the program’s details.
“Every government over the last 30 years really have not quite landed in the right place when it comes to autism and that includes our government,” Smith said. “One of the commitments that we made was, let’s work directly with the community.”
The panel, which included parents, autistic adults, psychologists and behavioural analysts, recommends some time-limited early intervention for kids under six when they register for aid. Currently, children wait months or potentially years to qualify for full core services.
Smith said the early years are key, and the push for prompt intervention is one recommendation the government could enact quickly.
Lisa MacLeod, the previous minister responsible for the autism portfolio, was demoted after a disastrous roll-out of the government’s initial plan earlier this year. Members of the autism community said Smith has helped the relationship turn a corner.
The move took a page from the playbook of the previous Liberal government, which also shuffled ministers to put a friendly new face on a new autism program after protests forced it to backtrack on its plan.
Families had largely said they were happy with the Liberals’ second attempt, which allowed them to access any services their children needed on the government’s dime. But the wait list grew, and that meant some kids were waiting years to get in treatment.
The Progressive Conservative government justified its plan under MacLeod by repeatedly saying it needed to clear a backlog of 23,000 children on the wait list. But the panel said that evidence-based and clinically appropriate care should not be sacrificed at the expense of addressing the wait list.
The panel also recommended that:
– Kids who need it should receive short-term mental health services before they reach the top of the wait list for core services.
– Core services should include applied behaviour analysis, speech language pathology services, occupational therapy, mental health services, and technological aids.
– Service caps should be loosened once wait times have eased.
– An independent care co-ordinator should help families navigate services.
NDP Leader Andrea Horwath said the report tells the government the same thing the official opposition was saying a year ago.
“We need a needs-based program,” she said. “That’s what families deserve, that’s what children deserve. Instead, the government cruelly ripped away services from families. They made things so bad. It was a horrifying thing to watch.”