Up until 28 months of age, our son Teo met all of his developmental milestones. Then we began noticing deterioration in many of his communication and social skills. Our pediatrician also noted these changes in our son and placed him on a waitlist to be tested for Autism Spectrum Disorder. After a considerable period of inaction, and the looming uncertainty and worry, we sought private diagnosis. This was the first of a series of events that made clear to us that diagnosis, therapy, as well as education and training services for our son were frustratingly uncertain.
Our son was officially diagnosed with Autism Spectrum Disorder in October 2017, he is non-verbal, and requires specialized developmental assistance in order to provide him with the opportunity to meet his highest potential. All children deserve this opportunity. However, here we are a year and a half following diagnosis - still waiting for ABA therapy.
Growing impatient and losing confidence that ABA therapy would be available within a time line that would be of greatest benefit to Teo, we as parents took up the challenge of aggressively advocating for our son. Feeling helpless at the time, we felt we had to start somewhere - making calls, knocking on doors and whatever we could do to bring attention to Teoís needs. All parents should advocate for their children, but advocating for a child with autism is much harder than it should be and is a constant stuggle. Our children with autism are special, with different needs and they deserve much better support than they are currently receiving.
It is recommended that Teo receive twenty four hours of ABA therapy per week. With the new OAP announcement the government will provide a percentage of $20,000 for a child of Teoís age, depending on your income based on a sliding scale. In order for Teo to receive his recommended hours of therapy, this would require our family to pay an additional sixty thousand dollars annually. A decision to spend this amount of money on any other annual expense would be simple. No! We canít afford it. In addition to the negative developmental impact this will have on autistic children, it also puts tremendous financial and emotional pressure on families, resulting in collateral damage to siblings, and parents. This is not a trivial outcome for families.
On a separate but related issue, Sudbury does not have the capacity to serve all of the children that will require therapy. As well as not having the capacity, we have no French Board Certified Behavioral Analysts that can provide ABA therapy.
With the recent changes to the OAP, the school boards throughout Ontario will be affected to ensure the will have the proper supports in place for our special needs children. As of April 1, 2019, the children that were previously receiving full time ABA therapy will shortly return to the classroom setting and we are hopeful that the school board will be able to accommodate all of these children.
On February 6, 2019, like many other families across Ontario our family was greatly affected. We are hopeful that we are able to provide the proper therapy that he deserves.