We need to design, fund our social systems around the idea that children with disabilities grow into adults with disabilities

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

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

At 28, I’m well past the cute kid stage but, surprisingly, I still have cerebral palsy and the multitude of access needs that go with it. What I could benefit from is cradle-to-grave care – the concept that social systems should care for people from birth to death. Currently, they are basically not suitable for this purpose for people with disabilities in Canada.

I was one of the first children in the UK to receive Botox for spasticity. I had the opportunity to be educated in a specialist British school with access to physiotherapy. My parents opted to keep me in the mainstream school system instead, and they received supports and equipment for my disability, such as a standing frame.

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

When I turned 18, after we moved to Canada, those low cost supports turned into personal 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 gain any more weight, and I know plenty of people who watch their weight for no reason other than to make sure they don’t lose their wheels. Sure, I could use a free model, but I would have to wait for repairs, deal with ill-fitting equipment, and look for an easy-to-maneuver chair that would increase my quality of life beyond a bandage solution.

What the system doesn’t understand is that my brain damage didn’t magically disappear when I became an adult.

Government support for people with disabilities tends to be biased towards children or those who are institutionalized. For the rest, our healthcare system often maintains the status quo – if that’s the case. It is an underfunded system and dependent on the charity model.

John Loeppky (right) grew up in the UK with his family. There, they felt they had access to a number of supports for Loeppky’s disabilities. After moving to Canada and Loeppky turned 18, many expenses became the family’s responsibility. (Submitted by John Loeppky)

When I graduated from high school, I found that the only way to get a wheelchair that fit me properly, without going through a loan program or mom and dad’s bank, was to apply. at a telethon.

The difference in support according to age can be felt from adolescence. For example, the Saskatchewan government increased funding for children with autism in 2021but only for children under 11.

If navigating the bureaucracy of disability assistance is like trying to stay afloat in a small raft, aging out of the youth system is like ending up in another ocean. Our healthcare systems are precarious and can be ripped away from us.

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

Take the example of Saskatchewan’s Assured Income for Disability program. It provides for a monthly allowance for people with “significant and lasting disabilities”. Moving cities can mean less funding, as the amount is tied to location.

Saskatchewan Assured Income for Disability monthly rates vary depending on where you live in the province. For example, a single adult would receive $1,064 in Estevan but only $931 in Pelican Narrows. (Jamie Hopkins/CBC)

How far that money stretches is also at the mercy of the economy, as the program has never been 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 increased funding by $19 million, but this is primarily to cover more people who will participate in the program rather than increasing base rates.

Inflation rates have been rising in Canada in recent years, but Saskatchewan’s insured income disability rates have remained stagnant, something users of the program criticize. (Jamie Hopkins/CBC)

Adults with disabilities are generally expected to struggle. And there are many: one in five Canadians has a disability.

Lawyer Jonathan Marchand is a notable example. In 2020, the Quebec resident, who is in his forties, won a long-standing battle to live in his community with supports rather than in a long-term care home. He went so far as to live in a cage outside the legislature for five days to defend himself. His lifestyle is still just a pilot project, as if he doesn’t know what’s best for him.

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

Let’s strive to help people with disabilities thrive rather than just survive. “Till death do us part” shouldn’t just be a slogan on the altar, but a slogan that rings in everyone’s head when it comes to supporting people with disabilities.

Read more in the series: