The government of Ontario has infuriated some parents of children with autism with its plans to stop funding intensive behavioural intervention (IBI) for children older than five. This means children with autism will be eligible only for applied behaviour analysis (ABA), a second form of government-funded treatment.
But what are ABA and IBI? And why does the government think it’s a good idea to limit IBI therapy to kids under a certain age?
Applied behaviour analysis
Applied behaviour analysis uses scientific principles around learning and behaviour to teach people how to develop socially valuable skills such as how to play and communicate with others, and reduce problematic behaviours such as physical aggression. ABA techniques include positive and negative reinforcement, breaking down skills into small tasks for easy learning and prompting specific actions through verbal, visual and other cues.
For example, a child who needs help learning to brush his or her teeth may first practise unscrewing the toothpaste cap, and move on to learning to squeeze the tube only once that step is mastered. A parent or therapist might encourage the child with prompts such as pointing at the toothpaste or moving the child’s hands to unscrew the cap.
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While ABA is most associated with autism it can also be used in other situations such as helping people with attention deficit hyperactivity disorder or substance abuse problems, and improving productivity in work settings.
In Ontario, ABA therapy for those with autism typically lasts two to four hours per week for two to six months. In that time, the focus is on improving a specific skill. Once a period of ABA training ends, the child may reapply to continue working on a skill or to learn a completely new skill. ABA techniques are used by medical professionals, but can also be applied in the home by parents and in school settings by teachers.
Intensive behavioural intervention (IBI)
“Intensive” is the key word here. IBI is based on ABA principles, but instruction generally lasts 20 to 40 hours a week instead of less than four hours. This method also normally takes place over two to three years instead of the two to six month timeframe under ABA.
IBI is delivered by a trained professional one-on-one or in a small group, whereas ABA techniques can be used by people in the autistic child’s life at home and at school.
The goal of IBI is to help children with autism catch up developmentally with their peers. “IBI aims to increase the rate of a child’s learning, to bring their skills closer to those of typically developing children, to decrease the symptoms of autism, and to prepare them for an appropriate school setting,” according to the Children’s Hospital of Eastern Ontario.
Why is the government limiting IBI?
Research indicates that IBI is largely ineffective after the age of five.
A 2014 report commissioned by the Ontario government on autism services included a review of scientific literature. Most studies indicated that IBI has the best chance of success at an early age, and that the measurable benefits drop significantly if a child undergoes IBI after five years of age.
At the same time, the government is facing a serious backlog for IBI treatment, with a waiting list of more than 2,000 children as of late 2015.
The government is arguing that to address both the growing need for autism services and the backlog in IBI and ABA treatment wait lists, it needs to focus resources on those kids most likely to benefit. Therefore, any child age five and older is being removed from the IBI wait list and given a one-time funding grant of $8,000 to purchase eligible community services and supports for autism. Kids over the age threshold currently receiving IBI will eventually be transitioned out of it. ABA services will still be available for children and youth over the age cut-off.
If IBI rarely works for those older than five, why are some parents so upset?
Parents’ reaction to the announcement has been mixed.
Autism Ontario, a group that speaks for members of the autism community, welcomed the government’s promise to invest $333 million over five years for autism services and said the intent to significantly reduce waiting times for assessment and treatment is very good news for parents of young children with autism.
But for families with slightly older children, it added, “this time period may feel heartbreaking and uncertain.”
CBC reports that 1,377 Ontario children over the age of five are receiving IBI, 835 children in that age group are on the wait list, and 1,331 younger children are expected to turn five while still on the wait list.
For the families of those 3,500 kids, many of whom have been on the IBI wait list for some time, the prospect of being denied funding for an intensive treatment that has helped some children succeed in school and life is too much to bear, even if the evidence indicates their children are now likely too old to get much benefit.
At a Queen’s Park media event last week, parent Heather Bourdon gave an emotional account of the sacrifices her family has made to pay $5,000 a month in private IBI therapy for her son with autism, Jacob, who turns five this month.
"We sold one of our cars, some of our furniture, used all our savings, liquidated the equity in our home, and moved our family of five into a one-bedroom apartment," she said.
The government’s announcement has come under fire from its provincial advocate for children and youth, Irwin Elman. He said that while he understands the rationale for phasing out IBI treatment for children older than five, the way the government has decided to implement its plans “does little to engender trust, hope or confidence to families who watch their children inch closer to aging out of a program dependent on early intervention.”
He added that the $8,000 being offered for children no longer eligible for IBI is inadequate compensation and that the government needs to be clearer on what the treatment alternatives will be for these children.
“With respect and with the best interests of children in mind,” he said, “the government should grandfather children who were on the IBI wait list and extend the May 1 date of the implementation of its plan until a time that children and their parents can be assured that they will have what they need, when they need it.”