Families to get autism funding directly in bid to help wait-list
But critics fear province’s plan goes ‘from one mistake to another’
The Ford government is planning to overhaul children’s autism services by taking money away from regional agencies and putting funding directly into the hands of families to choose the care they want, the Star has learned.
Major autism service providers have already been informed of the changes that will also address the massive waitlist of 23,000 children and target money and services to those under the age of 6, which research has shown to be the most crucial time for treatment.
Funding will not be cut, but redistributed, sources told the Star. An announcement is expected in the coming days.
“I would applaud them — early intervention is really important,” said one service provider. “These kids get on a wait-list, and they miss a key window.”
“Everyone in the sector would be happy to support something that improves the wait-list,” the provider said.
“But we are not sure how they are going to change the waitlist,” the provider said.
Senior government sources told the Star the Ministry of Children, Community and Social Services is going to focus on the wait-lists — for diagnosis, funding and treatment — as well as providing more equitable services and better oversight of therapy providers.
“The scope of the problem we inherited — this was a significant problem,” said one source, noting three of four children are currently not receiving the autism supports they need, calling the wait-lists “unconscionable.”
“Those are valuable days, weeks, months, and the one piece of science we know in this area … is that having behavioural intervention below the age of 6 is when you make the biggest impact and have the most likelihood to make a difference,” said the government source.
Many parents like the idea of choosing where the funding is spent, rather than having to deal with service providers who can be in a conflict-of-interest when they control the funding. The current system is a mix of the two, with agencies controlling the wait-lists and who gets the money.
But rumours the Ford government is planning to move back to funding based on age have struck fear in both clinicians and families, said Tracie Lindblad, clinical director at Monarch House, an Oakville clinic that offers services for children with developmental disabilities, including applied behaviour analysis (ABA) therapy for kids with autism. Lindblad says Monarch House, which also has clinics in Waterloo and Ottawa, as well as British Columbia and Saskatchewan, has experience working with families in B.C. where the government imposes arbitrary funding caps based on a child’s age. And, she says, the approach is failing.
(In B.C., children under 6 diagnosed with autism spectrum disorder receive $22,000 a year for autism services; those between 6 and 18 get $5,000, regardless of their needs.)
“We know it’s not working there. Why would the Ford government want to bring it here?” she asked.
Lindblad said the previous Liberal government was “on the right track” when it increased funding and extended eligibility for ABA beyond age 5, and allowed parents to choose between agency-based therapy or privately purchased services. Milton mom Maria Garito doesn’t like the current system — she does not believe service providers spend money efficiently — but nor does she think moving to a direct-funding model for parents is the answer.
Her 4-year-old son, Max, has been on a wait-list for more than two years and right now her family can’t afford the behavioural therapy he needs, so she takes time off work to care for him and they pay out-of-pocket for speech therapy and other programs. A direct-funding system means “some children get many hours of service, and many children get none,” said Garito, who believes it is open to abuse. She also doesn’t think there are enough services as is for families to spend any money they receive.
“The worst part of this model is that many of the private centres sign off on unnecessary services, because they (stand) to make profits knowing full well the government” will pay hundreds of thousands of dollars, she added, wondering if money would be better spent on more staffing and programs — and better oversight — of government-funded regional centres. New Democrat MPP Monique Taylor, her party’s children services critic, said direct funding is not an option for everyone. “In northern Ontario — the services just would not be available … they have nowhere to spend (the money). That’s a real issue in smaller communities in the North.”
And she said stressed families don’t have the time, knowledge “or the energy to be an employer,” which is what the directfunding option would essentially entail. “For a lot of reasons, a lot of families just won’t be able to manage. It’s very concerning.”
Lindblad said the new Ontario Autism Program, introduced by the former Liberal government, while successful in some areas, failed to provide government regulation of autism professionals, no quality assurance oversight or peer review of outcomes. But those are things that could have been fixed, she said.
“I am concerned we’re going to go from one mistake to another mistake and not achieve our goal of ensuring all individuals achieve their best out- come,” she said.
A PC government source said oversight of professionals will be part of the coming changes. “There’s no list that says where you should go for service” as there is in other jurisdictions like B.C.
In 2016, the Liberals had pledged $533 million over five years for autism.
Minister Lisa MacLeod announced $100 million in emergency funding after the PCs took office, to keep the system going, which government sources describe as “verging on the brink of bankruptcy.”
“The most responsible way to use publicly funded dollars is to consider each child’s need,” said Nancy Marchese, a psychologist and ABA therapist in Richmond Hill, adding that a “rate card” for services would protect families and ensure public funds are spent responsibly.
The parent-led Ontario Autism Coalition stormed the Legislature in 2016 under the previous Liberal government over age-based funding caps, and coalition president Laura Kirby-McIntosh, said her group will fight any provincial move to the B.C. model.
Rumours the Ford government is planning to move back to funding based on age have struck fear in both clinicians and families