The other curve — The one we want to steepen
The coronavirus has brought most things to a halt, and rightfully so. We all must do our part to “flatten the curve,” and to get through this as best we can. It’s not an exaggeration to say that lives are at stake.
As a subset to the global crisis, families with autistic children are facing a whole new set of challenges. Social/physical distancing can be a tough concept to explain to a child, especially for those with communication difficulties. Their hands may constantly be in their mouths. Proper hand washing may be a struggle.
Then there’s the complete drop off in therapy that many are experiencing right now.
After spending more than a year pleading with the Government of Ontario to make changes to the autism program, we’re in a state of limbo right now.
“For a lot of autism families it’s already been a really hard year of worrying about losing therapy. And then all of a sudden — we’ve lost it. And there was no transition.” — Janet McLaughlin
Autism therapy centers aren’t an essential service, and so they’re closed to help stop the spread of the virus. I think most would agree it’s the right call, but it certainly doesn’t make things easy for the families that were relying on, and seeing the benefits of, that therapy.
“Our support system is gone. We don’t have any income coming in. My son and my daughter are no longer in therapy because their therapy centre is closed and the progress they have made, we’re going to see regression.” – Kerry Monaghan
“His learning is based on a specific type of teaching that only a professional really should be doing,” says Garito, who worries Max will regress. “The hard work (done) over the last year, how much of it is he going to lose?”
This is a common concern.
Steepen the curve
While we want to flatten the curve of the coronavirus, there’s another curve that I’m sure is on the mind of many autism families right now: the learning and development curve.
In a very basic sense, it might typically look something like this:
Skills and learning develop over time.
For a child with a developmental disability like autism, we can expect that curve to be more gradual, with variation depending on severity. Skills are still gained, but not at the same rate as their neurotypical peers:
When a child receives therapy, the hope is that something like this will happen:
The goal is to steepen that curve, and help them develop and learn at a faster rate, giving them the individualized and targeted supports they need to thrive.
When your child has been making strides, then they have that therapy suddenly taken away with no transition, there’s always the chance of regression:
For those who were lucky enough to be in-service under the old version of the autism program, their therapy centres are temporarily closed, and their primary source of behavioural support has been put on hold – indefinitely.
For families who have received a Childhood Budget or one-time funding payment, they currently have nowhere to even try and spend that money they’ve been waiting so long for.
The learnings and development curve has been stunted, in a way that no one expected or could have anticipated.
When it’s clear that the early years of a child’s life are so critical to their development, this period will be a very difficult one for many families.
So what can we do?
We can try our best to support and teach our kids at home, but most of us are just trying to get through the day.
We are not therapists. We are not teachers.
It’s hard to know how long we’ll need to maintain this holding pattern, but it’s reasonable to think it’ll be months.
Will it be 2 months? 4 months? 6 months? Whatever the case may be, I’m not alone in wondering:
When we’re ready to return to typical life, will the system be ready for us?
What can the Ministry do?
For Minister Todd Smith and his team of bureaucrats at the MCCSS, they have an opportunity right now to hunker down and get the autism program figured out. I truly hope they’re taking advantage of this time.
Policy design can absolutely be done from a home computer, and it’s crucial that their work is continuing to progress.
As a reminder, there are several cohorts of kids for the Ministry to create plans for:
- The “legacy kids,” with their funding/therapy extended until transitioned into the eventual new program
- The kids who received a Childhood Budget, also considered “in service,” who will be eligible for a one-time funding payment at the one year mark from their budget cheque. In theory, they too will be transitioned into the new program.
- Then there is everyone else, who should have received an invitation to apply for a one-time funding payment (or should soon)
It wasn’t long ago that this statement was found on the ministry website:
This is no longer the case, as seen from this recent tweet below:
The wording in the Ontario Children Services tweet, and the retweet from the Minister, are actually speaking of two different things.
The former refers to applying for the Ontario Autism Program, while the latter is referencing the one-time funding application.
It’s really a 3-step process, as seen in this breakdown from the ministry website:
In essence, the Ministry is saying they’re extending the deadline for Step 1, because they’re unable to complete their work on Step 2 (to keep up with their previously self-imposed deadline) … but then Todd Smith is talking about Step 3.
We all know that clarity in communication has never been a strength of the current PC government. Transparency is also a major problem. I wrote about their transparency problem a few weeks ago regarding their monthly waitlist numbers:
Ultimately, we need the new program to be up-and-running as soon as possible.
All children in service deserve the same quality of care. They deserve to get the type of therapies they need, at the intensities they require.
Needs. Based. Therapy.
As families try their best to be patient during this temporary ‘new normal’ we’ve been thrust into, I hope the government is not squandering this time.
Five months ago the OAP Advisory Panel presented Todd Smith with a clear path forward. They gave our community a reason for hope.
It’s time for the government to finish their work on the new OAP.
While the world continues to flatten the curve, here’s hoping that once we’re out of the woods, and therapy centres can safely be opened again, that a program will exist for autistic children in Ontario to truly meet their needs.
It’ll be time to steepen the other curve.
