Parents of Children with Autism (ASD) Unite Against Ford Government's Changes to the Ontario Autism Program

What is Wrong with this Plan?
1. One-size-fits-all. Any proper treatment (whether medical, psychological, etc.) should be individualized based on a clinical assessment. Kids with autism are very heterogeneous. Some have intellectual disabilities, mental health and behavioural challenges, as well as autism. Research clearly demonstrates that a lot of kids will benefit from highly intensive (i.e., 25-40 hrs/wk) behavioural intervention based on Applied Behaviour Analysis (ABA) for 2-3 years in the preschool period, after which a good percentage will be OK in school. But some will always need a high level of service. These more severe kids will be extremely negatively impacted by this new plan. Apart from human compassion considerations, this is a very short-sighted plan economically, as these children and adolescents will end up costing society far more later in the psychiatric system, justice system, residential care system, educational system etc.

2. Financial Limits. While "up to $140,000" may sound good it is important to understand that there are age and family income criteria. The "up to $140,000" is per child up to the age of 18, for the lowest income families. We don't know how much middle income families will receive. Furthermore, there are annual caps of $20,000/year for younger kids (2-5 years) in low income families which will only pay for maybe 8-10 hrs/wk of the 25-40 hrs they need of ABA (Notably, 10 hrs/wk of ABA has resulted in no or little change to children's outcomes).
Children 5 to 18 years, regardless of their level of need, will receive only a maximum of $5,000/year with a total limit up to $55,000, again for those in lowest income bracket.

3. Wait list of 23,000 and only one-quarter of kids being served. What wait list does this refer to. There are several wait lists; one for initial diagnosis, wait lists for intensive behavioural intervention (ABA) in each of the 9 regions and wait lists for the less intensive behavioural services of various types. It is unclear what waitlist it is that has 23,000 children on it. The Minister speaks as if there are 23,000 kids who have received no service at all (and how cruel that is...). This is a prime example of manipulating numbers to substantiate your changes and is very misleading.

4. Capacity, Expertise, and Choice. Telling parents they can choose their provider may sound good in principle but there are two major issues with this:
a) some families do prefer a private model, which has been an available option since the beginning of the autism program in 2000, but most do not (historically the majority have opted for the public service). Many parents are just not equipped for the complex job of finding and managing private services either due to stress, language barriers, economically disadvantaged etc.
b) there are not enough trained ABA professionals (whether public or private) to serve that many kids. Even private agencies have waiting lists. The obvious result of this will be untrained or poorly trained people "hanging up a shingle" claiming they can do behavioural treatment for autism. This is an obvious risk to an already vulnerable group.

5. Nature of the Interventions Funded. Autism has always been a magnet for fad treatments. Applied Behaviour Analysis (ABA) based interventions generally, whether intensive/comprehensive (25-40 hrs/wk targeting many areas of skill development and behaviour problems) or focused (fewer hours, one or a few specific target areas) have, by far, the greatest body of evidence. The proposed new program no longer ensures that families will acquire any behavioural services at all. It allows them to choose what they want including respite care and "technology", which are not treatments. Respite care is very important for families but it does not treat the child's autism in any way. Giving kids an iPad without training and programming in how to use it to teach skills, is useless or maybe even detrimental. iPADS that are treated as toys or reinforcers can lose their potency as communication tools, virtually “stealing” one of the few communication systems available for some of the most profoundly affected children.

6. Implementation & Logistics. There are very few details on the obviously very complex transition process from the old to new program. What is proposed sounds completely inadequate and unrealistic. It is set to begin April 1, less than 8 weeks away. Government says they will establish a new agency to administer the program but they provide no details on how that could possibly be done for the whole province (there are currently 9 public programs doing the administration and oversight of the direct funding, while also providing direct service, family support, etc.) in such a short period of time.