From our report and recommendations to the Ontario government: Early childhood programs and services

We are blogging each section of our Report and Recommendations to the Ontario Government’s Autism Advisory Committee. Read the full report here: Ontario Recommendations- Inclusion is the New Gold Standard

Diversity of Services
Sadly, segregation of autistic preschoolers is the norm in some regions of Ontario, where they are streamed into full-time “intensive” ABA centres that remove them from their peers, even as their neighbours are developing the beginnings of lifelong friendships.

When the children go to school, in some sense their lot is already cast. The autistic children, having spent their days in ABA centres, are not familiar with the social world of their peers and likewise the neurotypical children are not used to including autistic peers in play. Segregation in the early years is thus a setup for more segregation in school years, when autistic children are stigmatized as outsiders within their own community.

This is in contrast to countries such as Scotland, who do not generally use segregated facilities for autistic preschoolers and have lower rates of special education referrals in the school years as a result.

Families Who Did it Differently

There are families in Ontario who chose not to put their children in the centres. However, under the former government, there was no funding for alternatives to ABA, such as developmental therapies (e.g., RDI,  DIR Floortime) or programs like the SCERTS program , or even services like Occupational Therapy (OT) and Speech Language Pathology (SLP).

These families were sidelined from funding and sometimes even stigmatized by schools—some paying out of pocket for services that helped their children. Some families also home educate their children because they don’t want ABA-mandated EAs for their children at school and no alternatives or flexibility are allowed at their local schools.

Although a fraction of the cost of ABA, alternatives to ABA were only available to families with disposable income to pay out of pocket, since the former government did not fund them. Families without the means to pay for these crucial services were left to DIY their children’s services or move to another province.

Testimonial
Two of our parent auxiliary members (married), who chose to remain anonymous, spoke of their efforts to include their son in the community by choosing different services than the IBI centre.

“We were told to send our son to an ABA centre. They said that he would never learn life skills without it. When we visited the centre we didn’t like what we saw at all. Then we learned that there was no funding for the services he did need, like OT and SLP. We were lucky to be able to pay out of pocket for them.

“By the way, he learned all his life skills [without ABA]! We hope the province will understand there are different ways than ABA and they work. I hope they will fund services like OT and SLP for families who can’t afford them. They should be given a chance because they work.”

Problems and Challenges
There are many families in Ontario who have wanted choices other than ABA. They have been wrongly stigmatised for making those choices by being told ABA was the “only evidence-based” method.

Also, many were unable to get enough of the supports they needed due to the funding monopoly of ABA services, where it was the only service covered. Families with wealth had good coverage –and non-wealthy families had to DIY, got patchy service, or even do without.

Some families ended up choosing ABA because it was their only “affordable” option since the government would cover the costs which, ironically, are higher than alternatives to ABA.

Services like OT and SLP typically do not mandate full-time, institutional settings but are done clinically, at far less expense than IBI. It would save parents and taxpayers money to explore alternatives to ABA.

It is also the right thing to do, because families deserve the right to make choices other than ABA.

Solutions

  • End the ABA service monopoly and fund AAC, OT and SLP for autistics of all ages, as needed. Educate developmental pediatricians in the province on the benefits of these services and where/how to refer for them.
  • Explore alternatives to ABA such as the SCERTS model and others (Halton School District has recently done SCERTS training).
  • Consult with nonspeaking adult autistics and those with high support needs about what needs to change for autistic children with high support needs.
  • Promote community inclusion of autistic children through an awareness campaign in partnership with the private sector.
  • Study best practices in Scotland, England, Ireland and other jurisdictions who use alternatives to ABA.