My name is Krista and Iím the proud mother of a little boy named Conor. Conor was diagnosed with autism spectrum disorder and global developmental delay when he was 2.5 years old.
With the diagnosis came relief because we could finally get him on the waitlist for the Ontario Autism Program to receive ABA services. That was in September 2017. My most recent call to inquire about the OAP waitlist was in October 2018 and I was told that they are currently servicing children from the summer 2015. That meant at least another 2.5 years on the waitlist for Conor.
In the meantime, we participated in an early intervention program. Conor made great gains during the 12-week period. He finally allowed us to play with him and he said his first word! I cried - it was one of the happiest moments in my life hearing his sweet voice. I still try to incorporate the techniques we learned from the program into his daily routine, but without further guidance, we are at a standstill.
In the 13 months since the program ended, he has never said another word. He receives government-funded speech therapy in blocks at 1 hour a week, but itís just not enough to help him. Conor remains non-verbal.
He has no sense of danger and is a flight risk. In fact, he is drawn to vehicles, which makes this combination especially difficult and dangerous. Heís prone to meltdowns that leave us confined to bed for up to an hour at a time. I canít leave or try to move him because it only makes it worse. He lashes out in anger and frustration because he can't communicate his needs with us. He needs assistance just to play with others and usually becomes upset when his dad or I try to engage with him. He has regressed from toilet training and is back in diapers because we couldnít risk what holding his bladder all day was doing to him. There are so many facets to autism that ABA therapy can assist him with, but now we'll never get the chance to figure that out.
With the changes that the government plans to implement, I fear that Conor, and others, will not receive the quality of life that every human deserves. I am devastated that he, nor I, will ever know his true, full potential because he will not receive the evidence-based therapy that he desperately needs.
Conor is now 4 and will be starting school in September. He has been waiting 545 days for service. I will gladly wait longer if it means that he, and others, are given ABA service that is delivered equitably. We live in a service desert and there are not enough therapists to go around. I have no idea what's going to happen, or how the government thinks everyone can be serviced at the same time because it's just not feasible.
This new program was supposed to give parents a choice, but there is no choice. We know that speech, occupational and physiotherapy are not a part of this new plan. All it will do is take away vital ABA therapy from families across the province by implementing arbitrary caps based on the childís age and family income. The planned program doesnít take into consideration the needs of the individual child. Itís dangerous and reckless and itís ripping opportunities away from the tens of thousands of children who have autism in Ontario.
There will be a ripple effect on the education system. Come April 1st, thousands of children with autism will be thrust into schools without a transition plan and without the proper supports that they need. This system is already overwhelmed and underfunded, teachers and SSPs canít take on the added burden without any assistance and the government hasnít offered any.
This is about fighting for our children. They are not numbers and we should be demanding better for them because they deserve better. They deserve more than what this government is offering. This is about getting them the help they need to learn even the most basic of life skills, so they can be independent one day Ė skills that will allow them to feed and clothe themselves or to learn basic communication skills. If we donít help them now, the province will pay for it later. As we know, children with autism grow up to be adults with autism because autism does not end.
My family is part of the 75% currently waitlisted and we are saying the government does NOT speak for us. This isn't what we want nor is it what we need. We need proper funding to acquire services that are tailored to the individual child and addresses their unique and specific needs. One size funding DOES not fit all. - "If you've met one person with autism, you've met one person with autism."