Current Events, Perspiration & Butterscotch — April 7, 2016 at 1:09 pm

The Changes to Autism Funding in Ontario

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Big changes to autism funding in Ontario hit the news last week, and while it doesn’t really affect the teens or adults, I think it’s worth discussing.

The Changes:

  • $333 million dollars will be invested over the next 5 years.
  • Time between autism diagnosis and treatment will be decreased.
  • IBI (Intensive Behavioural Intervention) funding will only be provided to children between the ages of 2 and 4 years.
  • Children 5 years and older will be transitioned to more clinically appropriate Applied Behaviour Analysis (ABA) services.
  • As of May 1, children who’ve reached the age of 5 will be removed from the wait list  – $8,000 will be given as one-time funding to immediately purchase community services or supports.
 ABA vs. IBI
First, it’s important to know with the difference between ABA and IBI:
  • ABA (Applied Behaviour Analysis) is the science of systematically applying behavioural principles to change behaviour for the betterment of the individual. It can be used in any avenue of life, from parenting to business.
  • IBI (Intensive Behavioural Intervention), sometimes called  EIBI (Early Intensive Behavioural Intervention), utilizes the principles of ABA and requires 20 – 40 hours per week of intensive 1:1 teaching, this teaching is done by a trained professional, and the program is generally supervised by a psychologist.
    • Currently, IBI is the only treatment for people with autism that is “evidence-based”. Evidence-based practice means that the treatment is not just theoretically helpful, but that multiple experimental studies have been completed, and the results have been replicated to prove consistency.
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The Good:
  • Currently, the average wait time for IBI treatment is two years, and as much as 4 years in some rural areas.* This infusion of cash is projected to halve those wait times over the next two years, and get them down to six months by 2021.  Which means faster treatment for more kids.
  • More ABA services are needed for families who don’t have access to IBI; 8,572 children received ABA in 2014 compared to the 13,966 on the wait list.** If the new plan is set to provide more ABA support for those on the spectrum, that should certainly be counted as a win.
The Bad and Ugly:
  • IBI will only be provided for 2 years maximum
  • Children who receive late diagnosis, or who have already aged out on the wait list, will not be granted government funding for IBI
  • Funding IBI personally is not a viable option for most families. “Annual IBI costs range from $40,000 to $75,000 per child in 2003 Canadian dollars, depending on the number of treatment hours provided and other factors, including administrative costs and training.”***

It’s understandable, given that IBI is so expensive, that the government needs to find a way for all children to get treatment on a budget. It’s not preferable, but I could get behind a plan that limits funding to a certain number of years it if meant that all children in Ontario diagnosed with ASD would have access to treatment quickly – especially if there were more ABA programs and supports in place to help the children who aren’t transitioning into a typical classroom. I can’t get behind the age restraints; this plan seems to have put its sights on economization, and forgotten that these are actual people.

Even if the research the Ontario Government used to determine the “appropriate developmental window” was correct, and children between two and four years old really do make the most progress, it is a crime to deprive children a treatment that will benefit them significantly because they have passed the period deemed to help the most.

This document forms the base for how Ontario Government came to the decision in question. It looks professional, and proceeds logically, but it seems a lot like a witch hunt.  They were looking for a specific answer (i.e., that there is an age in which IBI is most effective) and they were out to find it. They even call the research “targeted”. The problem is that the information they’re looking for isn’t available on the basis of science. Nancy Marchese, who was a professor of mine at George Brown, said it best on her post on and ONTABA Facebook group on April 6th:

“They drew conclusions from studies that can’t be drawn. For example, the only real way to demonstrate that children under 5 years progress better than children over 5 in a group study would be to take a bunch of two [year-olds], match them all on the same profile (e.g., IQ, adaptive, etc). Then split the group in three, one gets IBI at 2 years old, one group […] gets it when they turn 5 years old, and one doesn’t get it at all. […]. Obviously, there are massive ethical issues in doing this so it won’t get done.”
Her point is that ethically, we can’t actually perform the research required to scientifically measure what age group is best suited to receive treatment. These studies the Ontario Government used to make their decision show the progress of many different children at many different ages, but all that they can tell us collectively is that children from different ages, all benefited from IBI to differing degrees. The children in each study can not be reliably compared to each other scientifically since they were never intended to be. The result is that in trying to ascertain the “appropriate developmental window”, the Ontario Government overlooked the glaringly obvious: all of the research shows that, regardless of age, IBI benefits children. The “appropriate developmental window” is backed up by nothing more than an educated guess.
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What now?
  • If you currently have funding, don’t know how your funding will be affected, or want to register for “online engagement sessions”, click HERE.
  • For information on protests related to the funding changes in your area, click HERE.
  • For the petition to MPP Monique Taylor, click HERE.