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Letter: Where is Ontario's needs-based Autism program?

Sudbury parent asks how much longer does Ontario's Autistic community have to wait for services

I recently received confirmation that Phase 1 of the "needs-based therapy" program the government is implementing isn't therapy, it's parent training, etc.

The regional providers, such as Child & Community Resources, are expected to find money in their existing budgets for Phase 1, which is called Foundational Family Services, to run.

This, along with months of silence from MCCSS, pushed me to write some of my thoughts down.

Would you like to know why my fellow autism advocates and I keep fighting for needs-based funding for autism therapy here in Ontario? Do you know what's happened since this government has come into power? 

Autistic children have been given money for therapy and services based on their age and not based on their needs. This funding is for one year only … one year. 

Now we're all sitting here waiting for a needs-based program that was supposed to be implemented already, but has been pushed again to March 31 2021. What that program is going to look like, we don't know. 

It is guaranteed however, that needs-based will not be everything our children need to thrive. So back on a waitlist we go.

There has been money allocated for the Ontario Autism Program. This government continuously states how much money they're giving, except there's no proof of it all being spent, it's nowhere to be found. 

How are they possibly going to spend the rest of the budget by the end of the fiscal year?

They are rolling out this Needs Based Program very slowly.

The first phase is Foundational Family Services, which includes, for example, parent training, toileting/hygiene skills etc. This is not to be mistaken for scientifically based therapy options that our children desperately need and have been waiting years for.

These new service options (which aren't actually new in many cases) are not receiving any new funding to implement. Regional providers are being asked to find money in their existing budgets to offer these services to families.

This means that depending on where you live in Ontario, the continuity of service is going to be different. That is not acceptable. 

One year of therapy does not constitute supporting autistic children. One year of therapy does not a needs-based program make.

Here in the North, our wait times for diagnosis are long. Children in the North on average are diagnosed between the ages of 5 and 7. And we know that early intervention is key to successful outcomes. That's not opinion, it's fact.

For example, this means our children not being able to express themselves and their thoughts and feelings for much longer, if at all.

Can you imagine how frustrating that is? When people around you don't understand what you need, not even want, NEED. Not being able to speak for yourself.

We are also struggling from Sudbury to Rainy River to maintain the capacity for services we need to help our children learn and become independent, to avoid self-injurious and harmful behaviours to name a few.

We are struggling to keep therapists in the North so that all communities have access to services. Struggling to bring people into a field that is so uncertain without a stable funding PLAN.

There is still NO PLAN!

Today, I am angry. I am angry for my child, and all Autistic children. I am angry for parents, caregivers, loved ones of Autistic people.

I am angry for Autistic adults and self-advocates who want nothing more than to be listened to and have a seat at the table and a voice. 

A very important voice, to say what is best for themselves and their community. They deserve it.

I am a relatively level-headed person and what is happening to the Autistic community in Ontario has me frustrated, angered, sad, mad.

How much longer do our children have to wait?

This is why we haven't backed down. This is why.

Sara Kitlar-Pothier