What exactly is the issue? It’s a common question I get when speaking to friends, colleagues, teammates, extended family, and neighbours on the ongoing autism protests since February 6 of this year.
Although there has been a significant amount of media coverage, I can appreciate the challenge in trying to unpack all the information thrown at you with a 2-minute media clip. Autism Spectrum Disorder (ASD) alone is a difficult one to explain to those not familiar with the disorder. But the changes to the Ontario Autism Program have so many nuances that explaining the issue in detail gets convoluted, causing confusion for the general public. They know this though, something is not right about this policy.
There will be significant media coverage stemming from the massive protest at Queen’s Park on March 7, therefore I’ve put together my FAQs that hopefully will help those outside the ASD community understand why we are relentless in fighting for what all our kids deserve.
Scott’s top 6 Frequently Asked Questions on the Ontario autism protests
- Why are parents so upset?
The bottom-line is that parents want their child’s needs to be accounted for by the Ontario Autism Program, not a financial supplement system that discriminates based on age and family income. The funding is a pittance, and most will receive only a portion of a pittance, while others will receive nothing. This cartoon editorial depicts the issue well:
2. Why can’t all the children be treated the same?
Autism is a spectrum of disorders with some kids needing intensive one-on-one support, while others require lower amounts of professional intervention, and everything in between.
3. Why did the government make this change?
There is a backlog of kids and teens who are on a waitlist for services. The government claims they want to clear the waitlist and put money into the hands of parents within 18 months. They claim the current program is bankrupt and broken and that those on the waitlist may never get any help at all without this change.
4. What’s the impact to the kids?
Kids receiving services today will go from having needs-based services, to having very little to no services at all.
There is no transition from services to financial supplement.
For example, a child under 6 with full-time services, may be reduced to 1 day a week of support, while older kids could get 1 day of support per month.
Many will have no choice but to enter the school system full-time without support, putting the kids at risk, and potentially other students and school staff. Make no mistake about it, this will impact all school children!
Waitlist parents that have been waiting 2–3 years for the services their child needs, will within 18 months receive a pittance, or possibly no financial support to purchase services. So, more waiting, only to receive assistance that won’t meet their needs.
5. What is the societal impact to Ontarians if most kids’ needs aren’t being met?
Financially it’s Pay now or pay later according to experts. The long-term costs can be significant as the kids enter adulthood. Many with ASD are vulnerable, without the proper supports, they may find themselves in the precarious position of unemployment, getting into trouble with the law including imprisonment, long-term psychiatric care, sexual exploitation, or living in government care homes for the rest of their lives. Those costs far exceed the investment of proper evidence-based childhood supports.
The impact to our ethos is disturbing. Many say the greatness of a society can be measured by how it treats it’s most vulnerable. The moral and ethical costs of society not taking care of it’s most vulnerable are profound. We must do better.
6. I keep seeing stories claiming the government has been misleading and hiding facts, is that true?
It’s hard to keep track of because there are so many contradictory statements and falsehoods coming from the government. Here are just a few of the many:
The media has substantiated that the government froze waitlist entries into the Ontario Autism Program in the fall of 2018, and that the Ministry instructed service providers to hide this from parents. Many speculate the government was trying to artificially inflate the waitlist numbers as they instructed behavioural analysts to perform clerical work instead of taking on new kids for therapy.
The government has said the program wasn’t working, yet they did not bother substantiating with service providers the effectiveness of those receiving services. It’s true that the waitlist was moving slowly, however its misleading to suggest there was no churn. Many children exited the program and entered the school system, while others are making gains and charting closer to typical peers, which proves the program’s effectiveness. It’s imperfect, can definitely be improved, but not broken.
The government has misled on the Autism budget, often contradicting statements they make themselves. They’ve claimed the program is bankrupt. However, there’s a lack of transparency with the budget and actual costs, and it raises concerns given the government’s credibility on this issue.
Special thanks to Kristen Ellison for her contributions to this article.