One of the big balancing acts of being a special needs parent is budget. Everything costs a lot and for William, he needs a lot. From airvo supplies and feeding tube supplies, to all the seating and positioning equipment, it’s a lot.

Don’t get me wrong,

living in Canada and having health care and coverage for medications along with some access to different funding opportunities is helpful and appreciated but it doesn’t begin to level the playing field of supporting a child with special needs.

And each step of the way there are decisions to be made about how to best use resources and what the priorities are versus what William can live without.

William has been using a commode since he was about 5 years old. This piece of equipment allows him to use the bathroom like a big boy and it doubles as a shower chair. It is used multiple times a day and is not something he should have to live without – he hates relieving himself in his diaper. I remember when we first went through the process of getting him one. We made the trip to Vancouver to fit him for it, we got a couple of price quotes – each with different supportive options, and then we had to collect all the documentation needed to submit the request for coverage to our extended health provider. Then we wait and follow up and follow up again to see if there will be any coverage.

It’s years later now and William has used his commode to the point of break-down and he has outgrown it. We did our best to extend the life of it by making small modifications, but it was time to go through the process of getting him a new one.

Again, we trialed the bigger size which took months – waiting for one to trial, getting it delivered and then actually allowing him to be in it and deciding what we could transfer from the old one to the new one to save costs. And this isn’t the only piece of equipment that we go through this process with.

Once we evaluated the actual need, we got the quote, paid the quote and submitted to extended health. I received an email back saying that a note from a medical professional was needed to support the purchase.

Now, I know that support letters are needed by extended health for them to make sure it’s a medically necessary purchase. But it’s still a pain in the arse having to get that letter and jump all the hoops and deal with all the delays for things that will always be medically necessary for William.

With everything that families with special needs children face, providing adequate equipment that provides access, to everyday things most people take for granted, should have an easy acquisition process.

And honestly, maybe it’s just me, but

why would I want to purchase a commode if it wasn’t absolutely necessary? Why would we purchase feeding tube supplies if they weren’t necessary? Why would we want to purchase a wheelchair if it weren’t necessary? Why would I want to deal with this process if it weren’t necessary? Challenge accepted, begrudgingly, after years of jumping through hoops.

I will always jump the hoops for William and I will continue to advocate for what he needs. I will get the letters of support and I will always re-use and re-purpose things to save money.

But I will always wonder why our system doesn’t have a better and more supportive process for parents that are facing so much. These hoops take time away from families caring for their children and it’s exhausting always having to prove a diagnosis and prove needs especially when you’ve already proved it a million and one times.

We pay into extended health every month, we never exhaust what is supposed to be covered and I don’t ask for coverage that isn’t needed. There are lots of things that aren’t covered by extended health so

it would be nice if I didn’t have to jump hoops for the few things that are supposed to be covered.

~ Keely

Keely is an author and advocate for children living with disabilities. She lives on Vancouver Island in beautiful British Columbia, with her husband, her son William who has cerebral palsy, her two daughters and several four-legged friends.