Parents protest in front of Queen's ParkWhy we are (still) here

The OAC mission is:
1. To promote public awareness of provincial government policy issues related to autism;
2. To advocate for publicly funded, accessible and evidence based services for individuals with autism and their families;
3. To educate and empower parent- and self-advocates;
4. To assist families and individuals in navigating the system of autism services and resources;
5. To assist with policy development on issues related to children, students and adults with autism;
6. To cooperate with other organizations and advocates for other disabilities where possible;
7. To assist with and support the efforts of parents, caregivers and professionals to meet the needs of people with autism; and
8. To ensure accountability and transparency

Families and friends of children with autism are furious after the provincial government’s announcement that Intensive Behavioural Intervention (IBI) therapy will now be cut off for children five and over. Parents of children with autism of all ages and their service providers have begun a campaign to force the government to reverse the decision.

Kathleen Wynne, Premier of Ontario

Kathleen Wynne, Premier of Ontario

Since coming to power 13 years ago, the government has utterly failed to reduce waitlists for the IBI program. They are trying to disguise their announcement as an attempt to do so, in a press release cruelly timed for release just days before World Autism Awareness Day. What they didn’t say is that they plan to do this by denying children over five access to therapy that is intense enough to work for them.

(Now former) Minister Tracey MacCharles has misinterpreted the report of her hand-picked panel of experts. The government’s promise of “more clinically appropriate” 2-4 hours of weekly ABA service for children five and over is not supported by any research, including the work that her panel cited. It is widely accepted that this proposal is sub-therapeutic, and does not result in meaningful outcomes according to the literature review conducted by the government’s own Expert Panel Report.

As a consolation prize, the government promised to provide a one-time payout of $8,000 for families cut off from IBI, saying that they can use it to purchase “other approved services.” Families know that a full time ABA program costs between $50,000 and $75,000 a year. “This is nothing more than hush money,” says Shawna Thornberry of Grimsby, a parent of a 5-year-old boy who has autism. This money is barely enough to get a program up and running. After that, we have no way to maintain it.” Far from managing to hush parents, this week’s announcement has them howling.

Autism experts, service providers and other advocates have been quick to condemn the government’s new “strategy.” Dr. James Porter, an expert in ABA, IBI, and Autism, and Past President of the Ontario Association of Behaviour Analysts (ONTABA), says “with the proposed change in funding, this government has acted in a manner contrary to the values of Ontarians … the value that Ontarians place on caring, supporting and investing in the most vulnerable members of our community … this government will be haunted by this shameful legacy.”

Other advocates expressed profound disappointment that the new “autism strategy” announcement Parents protestingcontained no details whatsoever for either school or adult programs. “As the mother of a teenage boy with ASD and as a teacher myself, I know that programs in schools for our kids are hopelessly inconsistent. Despite the heroic efforts of teachers and EAs who work with our kids in the classroom every day, there is simply not enough

training and support. They’re being asked to teach our kids—who are challenging at times—while also struggling with cutbacks and ever-increasing demands on their time. It’s not fair to anyone,” said Laura Kirby-McIntosh, Vice-President of the Ontario Autism Coalition. “And there wasn’t a single word in this announcement about adults with autism. I personally found that shocking.”

A letter writing and social media campaign was initiated, protests were held, and petition signatures collected, across the province. The petition was be presented to the Legislature by New Democrat MPP Monique Taylor.  Parents, family members, people with Autism, service professionals and a wide range of angry citizens voiced their frustration with the government’s announcement.

Michael Coteau, Minister of Children & Youth Services

Michael Coteau, Minister of Children & Youth Services

As a result, Minister MacCharles was replaced by Michael Coteau, and the government walked back its original announcement. We are now waiting, and watching, for the new plan to emerge.  The Ministry has convened a new panel of expert advisers, and the OAC has a seat on that group. At this time the future remains very uncertain, and we will be ready to react to whatever comes next.