Daniel’s life–and the lives of all those who are connected to him–changed today. He walked into IBI for the first time.
For most parents, Intensive Behaviour Intervention (IBI) is the therapy that they want their kids to get because quality peer-reviewed studies have demonstrated its effectiveness. While it does not work for everyone, the methods and outcomes have been replicated over and over again demonstrating its success. A number of studies have also shown that starting IBI as early as 2 or 3 years of age can be of greater benefit to children than waiting later.
In Ontario with children routinely being diagnosed at ages 2 or 3, early intervention is beyond the reach of most families. It is expensive therapy. I have heard some families pay between $70,000 and $100,000 a year and that is not covered by insurance. At least 26 American states require insurance companies to pay for autism therapy, but in Ontario IBI is largely delivered publicly. There are two options for parents to select when their child’s turn comes up on the waitlist: they can go with direct service (DSO) or direct funding (DFO). Direct service means that an organization contracted by the province is paid by the province to provide therapy. Direct funding means that the province provides $39 an hour for parents to find their own service. I have heard that that amount provides less than half the amount required to pay for therapy. I have also heard some parents pay even more, up to $150 per hour for service. $39 doesn’t go very far.
The waitlists vary from region, even though the province provides the funding and sets minimum standards.
For instance, in Daniel’s case, he was offered a space in IBI for June that was the direct funding option. When he moved in the summer, he moved to an area less than 2 hours drive away where he was placed higher up on the waitlist because of his diagnosis date.
Another thing that varies from one region to the next is that the measurement tools used to determine when IBI should end. A child in one region may have service stopped sooner than would have been the case if the child lived in a different region because there is no uniformity in which metric is used.
This situation all seems a little bizarre and it might even seem a little amusing if it were part of some movie or novel.
The whole strange situation came home to me last night while I was in a meeting with a group of people who want to find a way to support families of kids who do not qualify for IBI.
There were six parents in the meeting. My son was the only child who is receiving IBI. As we went around the table and talked about our kids, I felt very pleased that Daniel was starting IBI. Then it sunk in–Daniel had won the IBI lottery. I was reminded of the anxiety of waiting to find out if Daniel was going to be allowed on the waitlist for services. I hadn’t thought about that in ages and yet here were five other parents who could very well think of it all the time.
Everyone around the table was pleased to hear that Daniel was starting his therapy. All those parents have kids with needs as great as or greater than Daniel’s. Autism has become more formally known as autism spectrum disorder because there is great variation among individuals affected by it. Yet, we will provide services to only some children who fit a set of criteria that has more to do with geography in Ontario than logic it seems.
It’s difficult to rule out that chance has no impact on which child in this province receives funding for IBI.