We need to design, fund our social systems around the idea that disabled children turn into disabled adults

This piece originally published on May 31, 2022.

This opinion piece is by John Loeppky, a disabled artist and freelance writer/editor in Regina. It's part of a series called Taking a Sitting Stand about disability issues, and is a partnership between CBC Saskatchewan and CBC's Creator Network.

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Flipping through old photos of me as a kid, it's easy to see why the first time I made a media appearance was as a small child, on a BBC program about disability treatments. This experience isn't unique to me;children are often the face of government announcements and charity campaigns related to disabilities. We make excellent fodder for inspirational posters.

At 28, I'm well past the cute kid stage but surprise I still have cerebral palsy, and the multitude of access needs associated with it. What I could benefit from is cradle-to-grave carethe concept that social systems should care for people from birth to death. Right now, at their core, they're not fit for this purpose for disabled people in Canada.

I was one of the first kids in the U.K. to be given Botox to counteract spasticity.I had the opportunity to be educated in a specialized British school with access to physiotherapy. My parents chose to keep me in the regular school system instead, and they were provided with supports and equipment for my disability, like a standing frame.

What the system fails to understand is that my brain damage didn't magically disappear when I became an adult.- John Loeppky

When I turned 18, after we had moved to Canada, those low-cost supports turned into out-of-pocket expenses.If I wanted a wheelchair that fit me well, my parents had to pay for it. I went for a bone scan to confirm that I wouldn't grow any further, and I know many people who watch their weight for no other reason than to make sure they don't lose their wheels. Sure, I could use a free model, but I'd have to wait for repairs, deal with ill-fitting equipment, and pine for an easy-to-maneuver chair that would increase my quality of life beyond a Band-Aid solution.

• The 'crip tax': Everything has a cost, but for people with disabilities that's quite literally the case

What the system fails to understand is that my brain damage didn't magically disappear when I became an adult.

Government support of people with disabilities tends to be skewed toward children or those who are institutionalized. For the rest, our care system often maintains the status quo if that. It's a system that's underfunded and is reliant on the charity model.

When I graduated from high school, I found out the only way to get a wheelchair that fitme properly, without using a loan program or the bank of Mum and Dad, was to apply to a telethon.

The difference in care depending on age can be experienced as early as adolescence. For instance, the Saskatchewan government increased funding for autistic children in 2021, but only for those up to age 11.

If navigating the bureaucracy of disability support is like trying to stay afloat in a tiny raft, aging out of the youth system is a bit like finding yourself in another ocean entirely.Our care systems are precarious and can be ripped out from under us.

We need to better design and fund our social systems around the idea that disabled children turn into disabled adults.- John Loeppky

Take the Saskatchewan Assured Income for Disability program as an example.It provides a monthly allocation for people with "significant and enduring disabilities." Moving cities can mean a decrease in funding, as the amount is tied to location.

How far that money stretches is also at the whim of the economy, as the program was never indexed to inflation. Every year disabled advocates ask for money to make up the shortfall and every year they are ignored. The latest provincial budget boosted funding by $19 million, but that is mostly aimed at covering more people who will be coming onto the program rather than raising the baseline rates.

Disabled adults are, broadly speaking, expected to struggle. And there are a lot of them: one in five Canadians has a disability.

Advocate Jonathan Marchand is a notable example of this. In 2020, the Quebec resident, who is in his forties, won a long-fought battle to live in his community with supports instead of in a long-term care home. He went so far as living in a cage outside of the legislature for five days to advocate for himself. His living arrangement is still only a pilot project, as if he doesn't know what's best for him.

It doesn't have to be this way. We need to better design and fund our social systems around the idea that disabled children turn into disabled adults.We need to increase support for social programs. We need to cover various therapies regularly and for all ages. We need people not to be reliant on crowdfunding for medical devices.

Let's strive toward disabled people thriving rather than just surviving. "Till death do us part" should not just be a slogan at the altar, but one reverberating in the heads of all when it comes to disabilities support.

Read more in the series:

• Spoon theory: How a cutlery metaphor can help explain the energy it takes to live with disabilities
• The 'crip tax': Everything has a cost, but for people with disabilities that's quite literally the case