Written back in 2019, when the new Government announced their, “new and improved” Autism Funding model. Ultimately, we got more than before, but we got nothing before. It was not a significant windfall but, it was better than nothing.
So far the new Ontario Autism funding program has been quite confusing for my family. Let me preface this by saying, that even though my son is on the Autism Spectrum, and the psychologist describes his autism symptoms as severe, we have received no actual funding from the Ontario Government. For various reasons we have never been on any list of financing, being screened out for any therapy and never put on a waiting list for any future programs.
When the new funding model was proposed a while ago, a great fury erupted in the Autism community. It was very vague on how funding would work, and many folks were hearing they would lose funding as the budgeted pot of money would be shared with more families, in an effort to reduce the waitlist.
For my family, we shrugged our shoulders, as we didn’t get any funding, we could only watch with envy finding out families were receiving upwards of 50K per year. After encouragement from our psychologist, we decided to play along with this new system. My wife is the one doing all this work, I am simply documenting it.
We called about the new program in April, and were told forms would be coming to us in the next two weeks to fill in. The forms finally showed up in June (after a lot of follow up e-mails and phone calls). My wife dutifully filled in the forms (the day they arrived) collected all supporting documentation and we scanned and emailed them back (that same day).
Near the end of August, we received a registration number (an exciting number) and a letter assuring us we are in the system. The wait list for getting a budget will be another 18 months, so again, we wait.
Autism Funding: Better? Worse?
If I see any money, I will be astounded. I realize some folks really need the money, and I hope they are getting it.
Currently, I pay a great deal of my income for my son’s education and other needs he has. After a lot of arguing with the CRA, I get a little help with tax credits (after a lot of arguing with the CRA), but all the money I am out of pocket is crippling my financial plans. I cannot retire, even though I can get a government pension. Still, we cannot afford all the help my son needs (occupational therapy, social interaction help, and other areas).
With all of that, we are lucky. My son may end up living independently, but I have to spend money now to make that possible.
Epilogue
We did get more funding for my son. For that I am thankful. However, I am not sure how this will work. Will I be hit with a, “Sorry we shouldn’t have sent that” message? The system seems to be in flux, what will happen in the future remains to be seen.
Alan – I am sorry to hear about your challenges with government programs and funding in Ontario, particularly with your recent changes there. We received an ASD diagnosis for my teenage son just under a couple of years ago in BC. While it is not perfect, I have been impressed with the financial support and programs here in BC and can appreciate the impact it would make for families without this support.
The most challenging part here was actually getting the assessment, took approximately 4 years of falling through the cracks in both the healthcare and school systems before we were able to get the attention of the appropriate professionals. Now that we have that assessment, the provincial programs and support have been excellent. I wish other provinces provided similar support.
Thank you for sharing your experiences, I have found it tremendously helpful as we navigate our new reality.
Andrew
@Andrew I have never received funding from the Ontario Gov’t so this is no big hardship, but it is annoying to hear about how things will get better, when they won’t.