Parents blast province over autism overhaul
Tory staffer resigns over changes to funding that include lifetime cap of $140,000 per child
The Ford government’s plan to overhaul Ontario’s autism program has sparked anger among parents — including a PC political staffer and father of two autistic teens who quit in disgust over the changes Wednesday.
Under the revamp, aimed at clearing a therapy wait list of 23,000 kids, parents will be given funding and the power to choose the services they want. But families will face a lifetime limit of $140,000 per child and high earners will no longer be eligible.
Parents, who say funding should be based on need and not on age or arbitrary cut-offs, were devastated by the move.
“In light of today’s announcement, I told my minister I did not feel I could continue in my role as legislative assistant,” said Bruce McIntosh, who joined Progressive Conservative MPP Amy Fee’s political staff when Premier Doug Ford’s government was elected last spring.
“This is just a huge disappointment,” said McIntosh, the former president of the Ontario Autism Coalition, a parent advocacy group that has pushed for more government support but has been critical of age-based funding.
“It’s taking the same amount of money and spreading it more thinly.”
Fee (Kitchener South—Hespeler) is parliamentary assistant for Lisa MacLeod, minister of children, community and social services, who announced the autism overhaul at Toronto’s Holland Bloorview Kids Rehabilitation Hospital.
Fee, the mother of two children with autism, spoke about her own family’s experiences during the news conference.
An estimated 40,000 children in Ontario have autism, a developmental disorder characterized by difficulties with social interaction and communication. About 2,400 of them are waiting for a diagnosis, 23,000 are on a wait list for behavioural therapies and just 8,400 are receiving services.
MacLeod said the government will double funding for diagnostic hubs to $5.5 million a year for the next two years, clear the therapy wait lists and ensure families get their funding within the next 18 months.
The program under the previous Liberal government was inefficient and did not address children’s needs, she said.
“We have lost a generation because of bad Liberal policies that were more about politics than they were about people … When you have a program that costs $321 million and 75 per cent of children who need support are excluded — we have to bring in some fairness and equity” and ensure the system is sustainable, MacLeod said.
The amount of funding families receive will depend on the length of time a child will be in the program, and support will be targeted to lower- and middle-income families, she added.
Under the overhaul, children up to age 6 entering the system will be eligible to receive up to $140,000 for treatment until they turn 18, while those entering after that age will receive up to $55,000. Families with annual incomes above $250,000 will no longer be eligible for funding, MacLeod said.
Julie Wormington of Whitby, who has three young adults on the autism spectrum and has received little government help over the years, said her 23-yearold son Jeffrey watched the announcement on YouTube and “immediately understood the implications.”
“He said it’s like closing food relief agencies in the Third World so they can give everyone in poverty a sandwich,” Wormington said. “By giving families a fixed amount, they are limiting the autism therapy or other services each family can get.”
Sandra Knof, whose 9-yearold daughter Sophie is non-verbal, intellectually challenged and needed a year of therapy just to become toilet-trained, doesn’t know what the future holds under a $55,000 lifetime cap.
“I am getting about $50,000 a year for two days a week of ther- apy and now I’m looking at going down to $5,000,” said the single parent of two. Their father died in 2013. “So today is a hard day.”
Knof, who works as a property manager and is “a financial person,” says she understands the government’s desire to do something.
“The truth is, there needs to be more money put into this. It’s an epidemic. Shortchanging all the kids doesn’t make sense,” said the Niagara-on-the-Lake mother.
Toronto parent Laura KirbyMcIntosh said the “childhood budgets” are an irresponsible way to spend taxpayer dollars because $140,000 will be too little for families who have severe needs, and could be too much for others. Cut-offs do not take need into account, either, she added.
“Lots of details are missing,” said Kirby-McIntosh, who took over as president of the Ontario Autism Coalition when her husband, Bruce McIntosh, joined Fee’s staff. “I am very concerned that in their attempt to clear the wait list, they are not looking at the importance of individual need.”
She said she’s “terrified” about means testing. Just because families are making more than $250,000 “doesn’t mean they have $80,000 lying around in the couch cushions,” she added.
On Twitter Wednesday, MacLeod’s chief of staff, Tim Porter, said he met with the autism coalition several times in the leadup to the announcement and that changes satisfy 14 of 19 demands the advocates made “that would keep them from protesting.”
“As for McIntosh — he was informed he could resign in December,” Porter wrote.
Liberal MPP and former community and social services minister Michael Coteau said the “results of these changes will be disastrous for many families, especially those who have children with complex needs. Parents told us again and again they did not want this, and experts agreed.”
Coteau called the funding inadequate, and said children “will see their support disappear and to make matters worse, the increase in demand for private services will result in increased prices for parents, further reducing how far the funding will go.”
Parents of children with autism launched protests against the previous Liberal government in the spring of 2016 when it announced that kids over age 5 would be cut off from funding for intensive therapy. The Liberals ultimately backed down and rolled out a new program, with no age cutoffs and a direct funding option to allow parents to either receive funding to pay for private therapy or use governmentfunded services. Wednesday’s changes announced by the PC government will include establishing a new agency to help families register for the program, assess their funding eligibility, distribute the money and help them choose which services to purchase.
Clinical supervisors will have to meet program qualifications by April 1, 2021, and the government will be publishing a list of verified service providers. Brampton mother Dianne Goulart-Nunes whose son Ethan, 6, was diagnosed at age 4 and waited 18 months for government-funded therapy, worries $55,000 won’t be enough to help him until he’s 18.
He is currently receiving 10 hours of therapy a week at a cost of about $24,000 a year, money she won’t likely receive for much longer under the new program, she said.
“We have to get children off the wait list, but the way to do that is not to take money away from children already getting help,” she said.
Bridget Fewtrell, president and CEO of ErinoakKids Centre for Treatment and Development, said her agency will be offering expanded services under the new program, although details are still being worked out.
“We share government’s goals of increasing access, getting children off the wait list and providing families with the support they need,” she said in an email.
Marg Spoelstra of Autism Ontario said families they have surveyed identify wait lists, financial challenges and schooling as their most pressing concerns. “For some families, this will be good news because they’ve been waiting,” she said. “Other families will be angry because the amount of funding that they need for their child will be insufficient.”
She was hoping the overhaul would include a plan for some co-ordination between ministries to help improve the system for families across all ages.
Spoelstra said it sounds like the government will clear the 23,000 wait list by “putting money in people’s pockets” — so parents can seek the services they choose — but she warned there aren’t enough professionals in the system now to provide services, especially in smaller communities.
“Part of our work will be to highlight where this is working, where it is not, and continue to raise those issues with the government,” Spoelstra added.
Editorial: Autism services, Ford’s clumsy bait-and-switch, A16