This is my beautiful 6 year old son, Anthony. Anthony is like any regular boy - he likes trains, cars, legos, and puzzles. He enjoys outdoor play, such as riding his bike and going to the playground. He's also a loving and affectionate big brother to his 3 year old sister, Audrina, and soon to be baby sister (due in May). Despite all the things that make him a "normal" 6 year old boy, there is one thing that makes him different: Anthony was diagnosed with Autism Spectrum Disorder when he was 3 years old.
We started noticing some challenges in Anthony's development when he was about 18 months old. He still hadn't spoken his first words, he wasn't pointing, he was spinning his toys, he wasn't able to hold his utensils by himself, and he engaged in a lot of sensory movements, such as flapping. We also noticed his tantrums were getting worse and much more aggressive. It was very difficult for us because we didn't know if this was normal toddler behaviour or if it was something different (he was our first child after all, and we didn't know anything regarding 'normal' childhood development).
The journey to get Anthony diagnosed was a long and stressful one. We had special support at Anthony's daycare, who was great, but wasn't able to confirm or at least 'red flag' us that Anthony was probably autistic.
ErinOakKids kept inviting us to special 'weed out' sessions to determine if he should remain on the wait list, but never provided us any answers or diagnosis. We then started our blocks of Speech Therapy with ErinOakKids. After 6 weeks of 1 hour sessions per week, our block would finish and we would have to wait another 6 months to receive any care. These were the worst because we started to scratch the surface, and then the block was up, and would have to start all over again once we received another block of therapy months down the road. There were also hours of parent education sessions in which we attended - all of which helped a little bit - but was nothing significant enough to make real change in our family. Meanwhile, Anthony was getting older and the challenges were still there.
After being placed on a wait list for 1.5 years at ErinOakKids for a diagnosis (with no end in sight), we finally decided to go private and had him diagnosed within a month of seeing a private psychologist. We were one of the rare lucky ones because at this point, it was 2016, and the new and improved Ontario Autism Program was finally implemented (this came after much fight from families with the previous Liberal government). Anthony JUST made the cut to be a part of the transition group (the group that was previously going to be kicked out of services at the age of 5 under the Liberals' first attempt of building the OAP program), he was immediately enrolled into the OAP and started to receive IBI therapy for 27 hours per week (this amount was based on Anthony's clinical assessment).
Over the past few years, my son has made incredible gains. He’s now verbal (talking in sentences, and slowly beginning to engage in conversation), potty trained, is able to regulate his emotions (as much as 6 year old can), and have seen an incredible transformation in his social skills (he has friends at school, and has been invited to a few birthday parties this past year). Anthony’s beautiful personality began to bloom for all of us to see. IBI therapy has built a bridge between my son, his educators, and his family – the gains he made, and continues to make are truly priceless.
That said, his autism support doesn’t come cheap. Our IBI therapy costs us $60,000 per year to give Anthony the support he needs (that’s 3 full days per week). The OAP funded that cost. It didn’t cover everything though – Speech and Occupational Therapy costs $14,000 per year, in which we only pay for Speech Therapy ($7000/year) because we can’t afford Occupational Therapy.
We have made progress in Autism support in Ontario, but the Ontario Autism Program is far from perfect; there are still lagging wait-lists (23,000 children still lag on the waitlist), there are major pockets of therapy that isn’t covered (as mentioned with Speech & OT not being covered), Regional Providers (such as ErinOakKids) have been given too much power (resulting in waste, bureaucracy and lack of accountability), our Ministries still operate in silos between healthcare, Education & Autism Support, and children are continuously being denied the right to an education by not integrating ABA into the classroom (Anthony is pulled out of school 3 full days a week so he can receive IBI therapy).
There was a lot of hope when Minister Lisa Macleod was appointed Minister of Children, Community and Social Services. After 15 years of fighting with the previous Liberal government to get the funding & services we need for our kids, we felt that Lisa – who fought with us in our protests – understood our issues and was going to build on the newly created OAP platform. The new OAP changes were nothing but sheer disappointment, frustration and shock. By trying to address the lagging wait lists, Lisa built a ‘one-size-fits-all’ to funding so that every child has access to the same amount of funds with an attempt to remove the 23,000 from the wait list. That sounds great as an outsider, but for families with autistic children, it is a disaster. Here’s why:
• Children under age 6 will receive $20,000 per year, regardless if you are on the mild or severe end of the spectrum. Total lifetime funds: $140,000
• Children over age 6 will receive $5,000 per year, regardless if you are on the mild or severe end of the spectrum. Total lifetime funds: $55,000
• The funds mentioned above are based on income, so the more you make, the less you receive. If you receive >$250,000, you are completely cut off.
To repeat, Anthony’s care costs $60,000 per year. Based on Anthony's age and our income, we are now getting less than $2,000 per year. This won't even cover an hour a week of ABA therapy. The “choice” (that’s how Lisa Macleod is spinning it) that is offered to us with this funding is either ABA (can’t afford), Technology (like an Ipad) or respite care (someone coming into our home and helping us out from time to time to provide us some relief). It doesn't come with Speech or Occupational Therapy to at least offset some of our costs.
Needless to say, because we cannot afford the gap in therapy for Anthony, we have to remove Anthony from IBI therapy all together when his current behaviour plan expires (April 26th). He will then be put in school full time as of April 29th. His school will not receive any additional support to help manage this. So essentially, Lisa Macleod is clearing the waitlist by not providing adequate funding which will remove children from care, forcing the problem onto the (already broken) education system. 100% of kids will receive subpar care or no care at all.
The next few months deeply worries me. Although Anthony has made incredible gains, his biggest struggle is change and transitions. And boy are we in for changes: on April 29th, he will no longer see his ABA therapists that he's developed a strong bond with, he will be at school a lot more often than he's used to, the new baby will be born, and then "BAM!" summer holidays will start and will be at home with mom and baby all the time, and then "BAM!" it's September and will be thrown back to school full time - in Grade 1 - with a new teacher and a new way of learning. For neurotypical people, this is quite manageable, even for a 6 year old. For a child with autism, well, this is enough change to be categorized as evil.
Throughout all this change, we are expecting to see some aggressive behaviours (meltdowns, hitting, kicking, biting), regression or may see some new unwanted behaviours. Throughout it all, Anthony will have zero professional support, leaving his parents and teachers (not therapists) to try to manage it the best we can.
Although I typically vote Conservative, I have no problems putting politics aside and saying that this government has got this wrong - completely wrong. And although I do understand the financial mess we are in and the need to fix it, we cannot do so by shortchanging our most vulnerable and expect great outcomes.
Right now, by trying to be equal, Minister Lisa Macleod has created the most inequitable plan. We should be building on this platform, not taking away. Anthony's continuous development depends on it. His ability to succeed in an education with his neurotypical peers depends on it. His ability to become a productive and healthy adult depends on it. Our family's financial future depends on it. Our family's mental health depend on it. To Doug Ford, Lisa MacLeod, and every PC MPP: I beg you, please do the right thing and support Anthony and thousands of other children with Autism Spectrum Disorder. Pause the plan and go back to the table with parents and experts. Build a plan where, not the 25% or the 75%, but 100% of ASD kids have the ability to thrive in Ontario.