Janet McLaughlin’s son Sebastian, who has autism, has been on a waiting list for almost three years to receive Intensive Behavioural Intervention treatment or IBI. But recent changes to autism treatment announced by the Ontario government means Sebastian, who is turning five this summer, and over two thousand other children in the province are now not eligible for this therapy.
“To be honest, I have lost hope,” McLaughlin tells CBC’s The Morning Edition host Craig Norris. “We were expecting some therapy to be given to Sebastian, but it wasn’t nearly the intensity and length we were hoping for. And all of these years, this is what we were counting on, and other families too. Now we’re being told there is no expected therapy, IBI, coming.”
The province is limiting the treatment to children between the ages of two and four, which means even though Sebastian was diagnosed at age two and has been on a waiting list since, he will soon be too old under the province’s new rules.
But the Ministry of Children and Youth Services said children like Sebastian will enter what they believe is a better program that will address the individual needs of each child.
‘We feel his entire life will be affected by the change and that’s devastating to us.’– Janet McLaughlin, whose son Sebastian has autism
“All of our actions are really grounded in what the clinical experts say about what the right developmental window is,” Tracy MacCharles,the Minister of Children and Youth Services told CBC news. “What the right age range for children to actually have better outcomes from particular therapies. So, not taking this action, the cost of that is, quite frankly too high.”
The government’s new $333 million funding model has been applauded for expanding services to reduce wait times and focus new programs on earlier autism intervention. Under the governments new plan the IBI and Applied Behavioural Analysis or ABA will eventually be combined into a single program, once the plan is fully implemented.
Waiting too long
“After waiting almost three years we’re now being told, ‘Sorry, your child is too old to be receive the therapy you’ve been waiting for,'” said McLaughlin. “This is just devastating to us because all of this time we’ve been expecting to be receiving this therapy. We’ve been told it’s his best hope of fulfilling his potential in his life.”
McLaughlin explained her son, who turns five at the end of August, could be taken off the waiting list as early as May and possibly receive four to six months of treatment in the IBI program.
According to the province, families like McLaughlin’s with children five and older who are on the wait list for IBI will get $8,000 to pay for treatment as they are cut off the list.
“So that’s different than what they’re getting now, which is waiting,” said Minister MacCharles. “They’ll be able to purchase behavioural services or other services they wish, respite services or speech language. Whatever they feel is appropriate in their community.”
“They will continue to stay on the ABA list which will be an expanded behavioural analysis wait list. Most of those families, my sense is they’re already on that list. So by the time the $8,000 is [spent] they should be at or near the top of the list.”
IBI is an effective therapy
Intensive behavioural intervention is seen as the most effective therapy for children with autism. The treatment has therapists and psychologists spend one-on-one time with the child for at least 25 hours a week. The yearly cost for the entire program is $50,000 per child. Parents with autistic children in Ontario have been petitioning the government for gradual implementation of the program to make sure a cohort of children don’t miss out on the treatment.
“IBI is the proven method to help these children to learn other things that kids like my daughter can learn so easily,” said McLaughlin. “It’s shocking to see our 20-month-old daughter master skills with ease that our son, who’s nearly five, struggles with every day. Things like waving, pointing and other social cues, self-help skills like dressing, brushing teeth.”
“Children with autism can learn, but they need the proper support to do so,” she said.
“We were counting on the program to give our son potential,” McLaughlin said. “We feel his entire life will be affected by the change and that’s devastating to us.”