(Ontario’s Minister Of Child and Youth Services Michael Coteau (above) And Premier Kathleen Wynne called out on false statements regarding Autism funding by Ministry staffer)
A few months ago, the Ontario Ministry of Children and Youth Services announced plans to “restore” autism funding for intensive therapy. On the Ministry’s own website and press releases during this announcement the Ministry told the public that “all children with autism regardless of age will get the services they need at the intensity they need.” According to sources within the Ministry I spoke with today regarding getting my own son the therapy he needs, the ministry staffer acknowledged that statement provided by the Ministry to the public is indeed false.
My son who is now 11 received a recommendation by several specialists (to which is documented) for Intensive Behavior Intervention (IBI) therapy. That was in 2010. I called Kinark who handles the wait lists for IBI shortly after this recommendation in 2010 (my son was 5 at the time), and during that call we were put on the wait list and told we would have an assessment 6 months prior to receiving IBI. We were told the wait list was about 2 1/2 years so we should get a call within the 2 year mark.
In 2012 we didn’t receive word regarding any assessments from Kinark. I called to follow up only to be told we were not on the wait list. We went through the intake process for IBI yet again. At the time we were experiencing major anxiety issues and self-injurious behaviors with my son along with toileting issues. I asked Kinark if we there was any immediate support available, they told me no and to apply for Applied Behavior Analysis (ABA) until we received IBI. Once IBI was involved it would take over the ABA therapy I was told.
Between 2012 – 2013 we received ABA. ABA was 1 hour per week for 8 weeks, most of which was done without my son being observed, and mostly done with my wife and I at home while my son was attending school. The goals set out in the training as a result were not successful. As a result both my wife and I decided to not follow through with another block of ABA since we were not seeing the results and my son needed to be properly observed through a more intensive process. We wanted to wait until IBI was involved. In late 2013 we connected with Kinark again, to find out once again my son was NOT put on the wait list. We were assured that would happen for the third time.
Fast forward to last week. We still hadn’t heard anything from Kinark. I followed up with them, only to be told that my son is now 11 and does not qualify for intensive therapy anymore as per the new ministerial guidelines released to the public in June. They told me to connect with the Children’s Treatment Network to get on the centralized ABA wait list for the one hour per week sessions we had done before and were not successful.
With the help of the Ontario Autism Coalition (OAC) I forwarded off the medical documents from 2010 recommending my son to IBI with Kinark and basically stated what I had just written above to the Ministry of Child and Youth Services for investigation and follow up. I got a follow up call today from the Ministry.
Right from the beginning of that conversation I got the impression that they were not going to help, and they were even questioning whether or not we got the recommendation from our doctors and specialists for IBI, all while the staffer had the paperwork I submitted into OAC from the doctors for just that in front of him. It took him 5 mins to look through 8 pages, and he still disagreed with me regarding the recommendation stating he couldn’t “find it”. I pointed him to the page # on where the recommendation was and had him read to me line by line.
Once he got to the recommendation, the ministry staffer stated that regardless of what was on the paper, that the only thing Kinark had a record of was my call in 2012 for ABA. There was no record of my son on the IBI wait list. Say what? I asked the staffer what our options were, again I was told to apply for the centralized ABA wait list. I brought up my concerns regarding the one hour per week ABA therapy, only to be told that was our ONLY option.
I asked: “Are you telling me that Kathleen Wynne’s promise to get autism kids the therapy they need at the intensity they need is false and misleading?”
He replied: “Yes as it stands right now.”
He then stated that any issues between Kinark and my family regarding the wait lists were a private matter and the ministry would not intervene.
So with my son now hitting puberty and the accelerated behavioral issues that come with that stage in life, we still don’t have the intensive therapy that has been recommended by at least 4 specialists 6 ½ years ago and from what the Ministry has told me today, that’s not on the horizon either. Kathleen Wynne needs to explain to the people of Ontario who were behind the parents of autistic kids, exactly what the heck is going on, and why parents and kids months after this announcement are still NOT getting the services they need at the intensity they need, and why she has mislead the public in believing that this therapy was restored?
Author’s Note: I want to make it clear, that I’ve heard of several stories from specialists and from parents that Kinark is notorious for “losing” paperwork. I’m not the first one with this problem and it extends to other regional providers as well. This needs to be immediately addressed.
What our family desperately needs right now is a commitment that my son will get the therapy he needs at the intensity he needs at some point in the future, in writing from the Ministry with a date on when to expect it, so we can develop a support plan with my sons school, and support network who have been waiting for 6 1/2 years for this support to be in place. I did not get that commitment from the Ministry today, nor was any attempt made at resolving the lack of intensive supports for my son, nor given any direction on which to take to ensure my son at some point would receive the intensive therapy he needs as directed by documents submitted to the ministry and promised by the Premier.
As it stands right now, and from my conversations with the ministry and Kinark, my son will not be getting the intensive treatment he needs as promised by Wynne regardless of the circumstances, due to his age, and he’s not alone.