One solution to the current autism funding crisis

Posted on February 27, 2019 in Child & Family Debates

Source: — Authors: – Opinion/Contributors
Feb. 26, 2019.   By

When it comes to the current crisis regarding the provincial government’s “new model” of support for autistic children, there is a serious omission in the angry and defensive public discourse.

Without question, my heart aches when I listen to the family stories arising. I have witnessed up close the stress and pain associated with the special complex needs of the youngest of our young. And as a former public servant, I can also understand the difficulties governments face with a program that has ever growing demands that carries serious unpredictability when it comes to short, medium and long range costs.

In my view, the root of the current problem is moving to serve many more children and families while the service delivery model and resources available are held constant. Dealing with the more than 20,000 children on the waiting list for services is a noble and important goal. But unless the methods of service delivery are altered, indeed disrupted, we are left with the forced choice of doing fewer things better or all things less well for our children.

In the case of autism spectrum disorder (ASD) therapy, the high costs are a result of the over-reliance on professional-only approaches. While we absolutely need the over-arching leadership of highly qualified therapists and researchers, we should be aggressively exploring alternative ways to provide high quality sustainable supports to the many in need at the same or even less public expenditure. I am surprised that re-engineering the “how” of service delivery hasn’t been at the forefront of the current discussions.

Back in the early 1970s I experimented with a train the trainer model with groups of families at the Montreal Children’s Hospital. The assumptions were simple.

First, it is not difficult to train lay people — parents, guardians, siblings and others — in the basics of applied behaviour analysis (ABA). The working notion that everything relies on direct delivery by professionals for three upwards to 40 hours a week, needed to be challenged.

Second, engaging all significant others who live with, and interact outside the home with the child, places the child in a wraparound program in which one person takes the lead to coordinate with others, consistent ABA practices with the child, thus providing a total immersion world that continues in perpetuity.

Success was based on a combination of skillful intensive training at the outset by professionals, sharing techniques used by parents and progress with other families and ongoing check-ins over time with a para-professional assigned to each cohort of families. The peer support and ongoing sharing of ideas, successes and progress, along with various degrees of ongoing oversight by a professional therapist, was key.

That was then. Is there anything taking place more recently that shows the efficacy of how we can de-professionalize various aspects of ASD therapy delivery? Of course. For example, under the previous government, Minister MacLeod’s own ministry put out a request for proposals in the summer of 2015 to test some alternative models of delivery. Various approaches to be tested in four different Ontario jurisdictions, were funded.

Through this initiative, these parent-mediated models have been running since 2016, with regular reporting to the ministry. In many cases, parents and toddlers are making significant gains. While these particular models may not be the solution for all children and families, the resource efficiency of parent-mediated models makes this an appealing approach worthy of further investment and exploration.

Funding demonstration projects that further test the cost-effectiveness of various alternatives to the status quo of delivery, that build on work already underway, should be a top priority.

I am confident that there are provider organizations and individual behavior analysts who would leap at the chance to experiment with their delivery approaches if proper resources were provided. I also think there are many families who would jump at the chance to participate in these pilots.

One thing is indelibly obvious. Holding constant how things are done while spreading thin the same resources for more and more children and families, is not the answer.

Charles E. Pascal is a professor at OISE/University of Toronto and a former Ontario deputy minister.

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