There is no expiry date for ABA



I hate that I have to address this, but given the recent changes to the parameters surrounding accessibility of funded services for children on the autism spectrum, I feel I must.

For those currently unaware the new parameters limit the scope of early intervention, such that children over 5 are no longer eligible for IBI. Wait times for diagnosing autism can vary but are generally not terribly efficient due to lack of awareness, specific training and a myriad of other barriers. At best, kids are diagnosed between 2-3 years, which leaves a small window of time for our kids to get assessed for IBI eligibility (a diagnosis of autism isn’t enough, kids have to be moderate to severe at the discretion of the evaluator) and approved for service, get onto the waitlist and are eventually called up for intervention—only to be told once they are 5 (which could be only 6 months later) they are out of the system.

An approach rooted in the science of learning, IBI is an application of ABA which occurs intensely, 20 hours or more per week. This therapy provides children with autism the best head start they can get, but is a costly prescription costing parents 40-60k per year or more depending on the provider. The reason for the expense is that IBI occurs intensely and at a 1:1 ratio; as a result, staffing and supervision costs are high. In an ideal world, if financials were no obstacle, kids with autism would get 100% of their schooling (into adulthood) within an ABA (not always IBI, but sometimes) framework. There is no expiration date on ABA services; they work as long as the individual maintains a learning profile which benefits from it.

Now because of new rules, students over 5 can no longer receive the funded version of this service. The decision to limit the scope of funded services comes from interpretation of research conducted on the most optimal years for IBI. The problem is that these new parameters are based on researchers’ interpretations of results. Science practitioners understand that interpretations may vary; unfortunately, the same can’t be said for those who created these barriers to services.

With the promise of creating a new revamped service for the kids who now sit in limbo, parents are left wondering what the future has in store for their kids. Families kicked off the wait list have been offered 8k as compensation, which has left a sour taste in their mouths; 8k is a mere drop in the ocean compared to the 40-60k is costs for the intensive therapy their kids have been deemed eligible for.

All of the kids kicked off the waiting list (over 5) were told at assessment that their kids are eligible and therefore it’s a natural extension to say that they NEED the therapy (based on the parameters previously established by the funding bodies). The new parameters surrounding service would have us believe that the older they get, the harder it will be to make gains (after all, isn’t that their whole platform?). If it’s the case that the older you are the harder it is to make gains, how are they justified in giving small bursaries (8k) and sending the kids who will have the hardest time (by their owns standards not mine) on their way? Worse yet, these kids are just supposed to wait around and see what the new revamped ABA (not IBI) service will be?

In a population already faced with barriers far beyond what many of us could understand, there is now increased uncertainty about the future. Bottom line is, Autism doesn’t end at 5. I won’t accept that this is the best we can do for these kids.


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