Experts Question Ontario's New Autism Policy In Scathing Letter

The Ontario Association for Behaviour Analysis (ONTABA) issued a scathing letter (see pdf below) to Tracy MacCharles who is Ontario's Minister of Children and Youth Services over the latest policy to strip intensive behavioural therapy from thousands of Ontario kids over 5.  ONTABA is an organization representing Ontario's behaviour experts, and these are the experts that Ontario would be relying on heavily in their new policy.

During questioning at the Ontario legislature last week on the new autism policy to strip kids over 5 of intensive behavioral therapy, MacCharles heavily relied on a government panel of "hand picked experts" to reaffirm the position of the Ontario government regarding changes to autism services.   It appears the real experts in behavioural analysis don't agree with the 2013 consultation findings that lead to this new policy change.  The ONTABA was neither consulted nor invited to take part of the initial consultation and has put the report delivered to the legislature by the government's expert panel into question.  In the letter to Minster MacCharles ONTABA asked for "clarification" on 5 key points.  One of those points the ONTABA stressed inconsistencies of the panel’s research:

"Our concern stems from the fact that unfortunately, many of the reviews and meta-analyses cited in the January 2014 report titled Autism Spectrum Disorder in Ontario 2013 conflate studies of ABA interventions with studies of other intervention models that are sometimes described as “behavioural” or “based on ABA” but do not have the well-established defining characteristics of ABA or comparable supporting evidence. Although there is some published, peer-reviewed research on these packaged, mixed-method early intervention programs for young children with ASD (such as the Early Start Denver Model), there are many more studies demonstrating the efficacy of highly individualized intensive, comprehensive ABA interventions that are designed and overseen by professionals with documented training and competence in behaviour analysis (see Eldevik et al., 2009 and 2010 for meta-analyses of multiple published studies of genuine early intensive ABA). Further, unlike other early intervention models, the wide array of procedures for building functional skills and decreasing problem behaviours that comprise intensive, comprehensive ABA intervention have been evaluated in many hundreds of scientific studies. This supporting research does not appear to have been considered in the January 2014 report."

The letter goes on to state:

"ONTABA members urge the Ministry to enlist expert behaviour analysts to assist in reviewing the published scientific research on ABA interventions separately from the research on developmental and mixed-method intervention models. Behaviour analysts are ethically obligated to use and recommend interventions that have proved most effective in scientific research and are eager to serve as a resource."

Only a very "small subset" of individuals "self-identified" themselves as behavior experts in the committee report presented to the legislature in 2014.  I've watched and commented on a large amount of committees and expert panels at the federal level on different issues and unrelated topics in my time. The exclusion of ONTABA from any consultation process considering the recent changes in policy will rely heavily on their members is a fact I find extremely interesting.  The exclusion of the Ontario Autism Coalition who has a very high profile background on bringing parents’ concerns to the legislature (regarding the system in place now) from the consultation process is yet another fact I find extremely interesting.

ONTABA in its letter also urged the government to act immediately to develop support in the school system for those who have been on the wait-list for intensive behaviour therapy. ONTABA stated:

"One of the immediate implications of the plan to transition children five and above who are on the waitlist or who are currently receiving IBI to different service options is an increase in the number of children with ASD who will be entering the school system over the next 6-12 months. Further, as the changes to the Ontario Autism Program are expected to roll out over several years, these children (many of whom have been waiting for, or recently started receiving, evidence-based behavioural services) may not have immediate access to appropriately individualized, effective behavioural service options. Our membership and stakeholders are concerned about the potential effects of these changes on children and their families. ONTABA advocates for an approach that is consistent with our ethical obligation to protect the best interests of our clients."

I would also add to this statement that school boards and the ministry of education do not have a very good track record when it comes to money being allocated for social programs or accounting for the money used in those programs.  I have a blog forthcoming on that very issue. There may be a strong need here to set up a watchdog to keep track of the programs in the schools independent from the ministry and the legislature to ensure that kids who need behavioral based services are actively getting it in the schools, and that the level of service remains constant throughout different regions of the province and through different school boards.  A point echoed by the ONTABA to some extent when requesting that ABA services be regulated:

"In light of the plan to invest significant efforts and money in improving and expanding the Ontario Autism Program, we believe it is critical to initiate appropriate regulation of practitioners of ABA in the province as soon as possible. In order to protect the public, build capacity, and ensure that all consumers have access to ABA services delivered and overseen by qualified providers, it is essential to set standards that are consistent with the Behavior Analyst Certification Board credentialing requirements as well as recommendations from the 2015 SEG report commissioned by MCYS and stakeholders surveyed for the Autism Spectrum Disorder in Ontario 2013 report. ONTABA is eager to work with MCYS on this process."

Speaking as a parent with an autistic son; it takes a small village to raise a child.  It takes a small army to raise a child with autism in the current system. Parents are constantly fighting the system; fighting to get on wait lists, fighting to get the right specialists involved, fighting to get a case worker to navigate the system, fighting for funding, navigating through an enormous amount of red tape, even fighting to get a small break once in a while.  It's not easy, and sometimes exhausting and extremely frustrating.  This is a system that isn't set up to be user friendly. Many like me have sacrificed a career, money, and style of living to dedicate themselves to the care of their kids and family.  The people of Ontario are owed an explanation as to why a proper consultation process wasn't commenced with these recent policy changes to begin with.

The system has been in need of desperate repair for a long time.  Premier Wynne ran on fixing this system in the last election.  Shouldn't the most effective way at fixing the system include ALL stakeholders in an open consultation process, and a balanced approach put forth on policy as a result of scientific evidence and user feedback?

The Wynne government doesn't seem to have attempted this to the extent its needed judging from the outrage the recent policy announcement has caused, and now experts are refuting the government’s own reports as a result.  Whether the exclusion of such a balanced approach to policy in this case was intentional or just plain carelessness is something I will leave it to you too judge.  For those using the system however, it is not fair to families dealing with autism to put forth policy that puts us all in a position of fighting yet again to get the services our kids need.  It shouldn't be a battle to get the government on our side as a result of the problems we face in the current system. We have enough to worry about regarding the care of our children. We need a government in place that understands our side of the system and the problems within it, rather than one that makes a mockery of the challenges this system faces thus sets a pretty good example to tax payers of what we all have to deal with as parents who care for autistic kids.

It's not just the policy that needs to change, it's the culture around autism our policy makers have that needs to change.  Only then can we develop meaningful, sustainable, and reliable systems of support inclusive to all age groups who are on the autism spectrum.  I would hope that all stakeholders commit to a more open consultation process to discuss the problems this system faces in the near future.  Anything less would be a great disservice to the most vulnerable this system is set up to support and to the tax payers of this province.