Changes to Ontario’s autism program need to be put on hold and the system redesigned to better serve children and be more cost-effective, experts and parents said at a press conference Thursday.
They also said girls and children living in rural areas will lose out on the bulk of the provincial funding under the new plan — which is based on age and provides more money to families with younger children — because they are typically diagnosed later, said Mike Moffatt, a father of two daughters on the autism spectrum who is also an economist and professor at Western’s Ivey Business School.
“Girls get diagnosed significantly later than boys — even when they have the same symptoms,” he told reporters at Queen’s Park.
“Girls will receive substantially less funding than boys simply because they are girls.”
In rural areas, Moffatt added, “there are less existing health services … they are going to get less money from the program because they are not living in downtown Toronto or Ottawa.”
However, that means the thousands of families currently receiving services could see drastic cutbacks.
Families will be eligible for up to $20,000 a year for each child under 6, to a lifetime maximum of $140,000, and can be used for a number of different services of their choosing. Children older than that can access up to $5,000 a year up to age 18, to a lifetime maximum of $55,000.
For children with intense needs, therapy can cost up to $80,000 a year. Funds are allocated based on income, with higher-income earners ineligible.
“Our reforms to the Ontario Autism Program were developed with a belief that all families of children with autism deserve support from their Ontario government,” a spokesperson for MacLeod said Thursday.
Three out of four children with autism “were not accessing service” when the PCs took office, said Kitchener South-Hespeler MPP Amy Fee, a mother of two with autism and a former advocate.
“We had to get them something, and that is why we went forward with this plan to try and make sure every child … gets some help from the provincial government,” she said Wednesday at an event in Cambridge with Premier Doug Ford.
But critics have said the plan should be based on need, not age or family income, and is not nearly enough to cover the type of intensive therapy some children require.
“This is done correctly in many jurisdictions, for a fraction of the cost,” said behavioural therapist Louis Busch, pointing to U.S. states where “services are provided directly on the need of each individual, assessed by qualified clinicians” and followed-up by an auditing process that ensures quality, and value-for-money.
(In Missouri, where health insurance companies must cover autism services, families can claim up to the equivalent of about $61,000 Cdn per year for a child, with the annual average being less than $6,700.)
He also warned that as many as 1,500 jobs will be lost across the province because service providers are dealing with uncertainty under the new program.
Laura Kirby-McIntosh of the Ontario Autism Coalition said “it isn’t ever too late for a government to press pause.”
School boards are expecting an influx of about 1,000 students with autism into schools as families lose funding and turn to local schools for help. Boards across the province have expressed concerns about having enough money and resources to support them.
Kristin Rushowy is a Toronto-based reporter covering Ontario politics. Follow her on Twitter: @krushowy