With the announcement of the changes to the Ontario autism program I would like to take a minute to explain the effect that this will have on our family, school, community and most importantly our son Gavin.
Our son Gavin is turning six years old. Gavin has been diagnosed with severe autism, global developmental delays and is mostly nonverbal. He is a bright, happy and intelligent boy who is always eager to impress. He has an amazing aptitude for patterns, numbers and the alphabet, in more languages than one. We often say, he’s by far smarter than we’ll ever be. Unfortunately, Gavin struggles with anxiety, frustration, self regulation, socialization, and can be a danger to himself or others, just to name a short list. It’s a big world out there and Gavin is fully aware that he is unable to navigate it and not everyone understands his needs or communication. Because of this he has a debilitating fear of leaving the house without mom or dad.
With Gavin’s level of severity, IBI was recommended at 28 hours per week. Speech and occupational therapy were also recommended as well as physical therapy. As Gavin was due to enter his first school year, we were recommended to hold him back until behavioural therapy was in place. Gavin needed coping skills with his self regulation issues, as his language barriers and low skill set easily frustrated him. January 2017, Gavin came off the wait list, in which we were able to access direct funding. We started therapy based out of his school, where they were able to offer a private area for him to work with an IBI therapist. This school year, Gavin has been integrated into the classroom for at least 50% of the school day. This would absolutely not have been possible without IBI therapy. In a years time we have seen progression that we never thought possible. He now has a many independent skills, such as dressing and undressing, is now toilet trained, has verbal skills as he can respond yes or no when asked a question and even respond back when someone addresses him. Gavin loves school and this is all because of intensive behavioural therapy.
With the recent changes to the OAP, Gavin with now go from intensive therapy at 28 hours a week down to $5000 or less a year till he is 18. To give you an idea of therapy costs; IBI is $55/hr, speech, physical and occupation therapy are about $110/hr. Gavin requires all of these. Under the new program, IBI will not be viable and O/T, P/T and speech will not even be an eligible expense. As these are the most valuable supports our son needs this program has done nothing to reflect the needs of “our” family as well as any child that is unfortunate enough to be on the low end of the spectrum.
The immediate impact this will have on Gavin will be devastating. The skills he has worked so hard to gain in the last year, will diminish quickly without constant skill building reinforcement. Without ample time to prepare with these changes, financially we are unable to to continue this program which ends on April 14th. This inconsiderate transition from therapy will have a traumatic affect as we are left scrambling in the next up coming weeks. Gavin has worked with one main therapist from the beginning. She is his best friend. With her, Gavin is fearless, confident and relentless to learn. It took months for him to accept and have confidence to work with other therapists. Gavin has a fantastic classroom with great teachers but that could never replace the wholistic, behaviour support that a full team of therapists provide. Although education is of high importance, our sons quality of life far exceeds the support we need.