Derek Weidl is a marketing strategist who lives in Ontario with his wife and two children. His eldest son, Desmond, was born with Down syndrome and a complex colorectal condition called Hirschsprung’s Disease. In an open letter for Yahoo Canada, Weidl shares how recent cuts to Ontario healthcare and education have impacted his family and countless others across the province.
It's been quite a time to be a parent of a child with disabilities in Ontario. Our seven-year-old son Desmond has Down syndrome and Hirschsprung’s Disease resulting in a permanent ostomy bag.
Two weeks ago, we took Desmond off of our private benefits package due to the changes Ford's government made to OHIP+. While the private benefits have never covered Desmond's meal replacement formula that is his exclusive source of hydration and nutrition, the latest changes mean OHIP+ will only cover prescriptions if the child isn't on a private benefits plan.
I actually didn’t believe that any kind of policy could be written in such a backwards way and got into an argument with both my wife and our pharmacist about it, thinking they had to be wrong, until I was proven incorrect.
In the end, we had to decide whether to pay $800/month in formula or give up Desmond's private benefits like dental, glasses, and most importantly his therapy coverage. The therapies covered by the private benefit plan are the kind that allow him to thrive in our society, which would likely result in a reduced reliance on government support over time. Desmond’s meal replacement formula costs are greater than out of pocket therapy costs, so the equation was pretty straightforward, even if the policy isn’t. For others, that calculation is much more challenging.
With $1 billion slated to be cut from social services, we, along with thousands of other families, held our breath to hear the fate of Special Services at Home (SSAH), a source of funding to help with respite, therapies, and many other ways to help our families support our kids with what they need. We breathed a sigh of relief to know that SSAH was merely frozen instead of cut (for this year at least), at a $95 million budget, meaning that it still seems like we will get our funding however thousands of other families remain on the waiting list. The funds remain frozen, meaning that many families are already out of pocket thousands of dollars, and there are still rumours that the program could be axed in this budget.
For us, losing this program would be really challenging, but for other families it would be catastrophic. For many still, it’s completely inaccessible as they continue their multi-year wait. Meanwhile, I'm sure those families are happy to hear that the horse racing industry is getting an extra $10 million, that we now have buck-a-beer and that we’re rebranding our licence plates.
We still are absolutely terrified of what the education cuts will mean for Desmond's life at school. If funding cuts continue, Desmond might not have a full time Education Assistant (EA), which at the most basic level means that when he randomly decides to run away (a real thing that happens with terrifying frequency) he won't have someone ensuring he doesn't escape school, run on to the street, or get taken advantage of in many different possible ways. This doesn’t even account for the actual one-on-one teaching component that an EA provides.
I don't think we can reasonably send him to a school situation without that level of support, which means keeping him home, depriving him of the many friends he's made, the learning progress, life skills acquired not to mention the positive impact he has on so many people, both students and teachers, at his school. But you know what? This is what they are counting on, parents like us choosing our child's safety and removing the "problems" from school. I can’t really concentrate enough to think about the different ways this might all play out as the possibilities induce a pang of fear in my stomach.
This is what the Ford government is calling “modernizing education”: reducing support for the kids who need it most, by reducing teachers and increasing class sizes. If this is modern, please give me an old school education.
The point of this letter isn't to make you feel sorry for us. We are but one of the thousands of families who are affected by decisions like these, and many of them much more affected than us to the point that people are taking out extra mortgages, selling homes, changing jobs and other extreme measures in order to support their families needs. If anything, we have it easy in comparison.
The point of this post is to make this real for you, to help you understand the ways that budget decisions like these actually impact real families. Politics, voting, budgets all really matter. It has real impact on real families.
A guiding light for our parenting philosophy is "kindness.” We don’t always succeed with that philosophy, but when we don't know what to do, kindness usually provides a good direction. Kindness means acceptance, it means people caring for each other and it means doing the right thing for everyone.
This isn't a government or a budget of kindness nor is it promoting a society of kindness. The pillars of education and health care are being stripped, the institutions that define us most as Canadians that helped build a society of kindness. If you don't think this is happening right in front of your eyes, then you aren't paying attention.