An open letter to Kathleen Wynne, Premier of Ontario

Dear Mrs. Kathleen Wynne,

First, l would like to say, “Congratulations” on your political victory !

I have been legally allowed to vote for the past 14 years, but I have to admit, that this is the first time I have ever voted in an election.

I have never followed politics, nor had I ever had any interest in voting.
It was your promise for additional support and shorter wait times for special needs that caught my attention.

I am a stay at home Mother of 3, and my first born child is on the Autism Spectrum.

Before my son was diagnosed, I knew very little about Autism, so I’m going to assume that you know as much as I did.

I will do my very best to explain the process to you.

The first thing you will be told after a diagnosis, is that early intervention is vital.
They recommended that the child start Autism intervention as soon as possible. The quicker you start behavioural intervention, the better the outcome for the child.

This part is so important in fact, that we had our son start therapy, even before he had his official diagnosis.
We didn’t want to waste our “critical window of opportunity” (that is, intervention for a child before the age of 6), sitting on a multitude of wait lists.

Our son was diagnosed with Autism when he was 3.5 years old.

When we mentioned our concerns about his development at his 18 month wellness appointment, we were referred for a speech assessment.
Our son was put on a wait list at the CTC in our district, and we had to wait 10 months for that assessment.
After the speech evaluation, they recommended he be assessed for Autism Spectrum Disorder.

Our name was placed on another wait list, and we were finally called for our appointment one year later.

Once we had our official diagnosis and we were deemed eligible for Autism therapy coverage (some families are not deemed eligible, which is another big concern), we waited close to three more years before funding was actually available to us.

That is almost five years of waiting.

Five years that would have been lost during the “critical window of opportunity”, had we not taken matters into our own hands.

We remortgaged our home, we cashed in our RRSP’s and we emptied the account of funds we had set aside for our children’s post secondary education.

That sounds like a heck of a lot of money, right?! That’s because it IS.

Autism Intervention is expensive.

The annual cost is $40,000+ (for part time), and $80,000+ for full time (40hrs per week) therapy.

The minimum number of therapy hours recommended for a child with Autism Spectrum Disorder is 25 hours.
With the average cost of an instructor therapist and the minimum number of required therapy hours, a family is looking at approximately $50,000 each year.
If they continue therapy up until the child is 18 years old, it will have cost the family $900,000.
That is for the minimum number of therapy hours recommended.
Full time therapy will cost a family $1.4 million+ over 18 years.

Lucky for us, our personal funds carried our son through part time therapy until exactly one month before we received assistance from the ministry.

Of course, we will never retire.
Or pay off our house.
Or be able to fund post secondary education for any of our 3 children.

But hey, our dollars brought us to the end of the ministry wait list !
What a relief that was !

After 5 years on our own, having used up all our financial resources, we finally had some help !
Except that the average family receives only two years of therapy coverage, before they are once again on their own.
2 out of 18 years.
(Then from 18 years for the rest of their lives, because there are no supports in place for adults with Autism either.)

Let me just say, a child with Autism is in no way “rehabilitated” after two years.
There is no known cure for Autism, but children can “recover” with the proper supports in place. They can get to the point that they don’t require full time care. They can graduate high school, forge ahead to post secondary education, live independently and become contributing members of society.
It IS possible.
But not without continued support.

Financial support being number one.
We can’t have our children sitting on wait lists for years at a time without intervention, and families simply can not take on the financial burden of Autism.
It’s too much !

You plan to spend an additional $5 million dollars to support families of special needs and reduce wait times.
But that is $5 million dollars split amongst 20 ministry funded children’s treatment centres.
That is an additional $250,000 per year, per centre.
The cost of part time therapy for a child with Autism is $50,000.
An extra $5 million dollars invested into the 20 CTC’s will help 5 children at each centre.

Sadly, hundreds of children are waiting for intervention.

You are the only political candidate that acknowledged the wait times and lack of support for special needs families.
You pledged to invest $5 million dollars in additional support for special needs, and though that is not nearly enough, it is a start.

So, you got my vote.

And now that you are fully aware of the actual cost and wait times for Autism intervention, maybe you can find a little extra wiggle room in that budget of yours. 😉

Pretty please.

Sincerely,
Sara Park

Imagehttp://www.autismspeaks.org/science/science-news/lifetime-costs-autism-average-million

http://www.asatonline.org/resources/clinician/earlydetection

 

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8 thoughts on “An open letter to Kathleen Wynne, Premier of Ontario

  1. Another thing to keep in mind is that Autism does not go away at the age of 18, regardless of what policy planners seem to think. I am quite high functioning, but have had a lot of trouble maintaining employment and there are exactly ZERO programs within a 5 hour drive that can help me EVEN IF I AM ABLE TO PAY FOR THEM. We have one really good program for children with autism that is free to parents, but the wait list to get through takes about 2-3 years. We do not so much as have a counselor or therapist with any specialization in adults with autism.

    I completely agree that we have to help children with autism, and I really like how clearly you made these numbers in this post, but don’t forget that these children will grow up. Many of us on the spectrum are capable of working (I have a Master’s Degree and start my PhD in the fall), but I have been fired from service jobs for not smiling appropriately and have had to quit jobs in my field for things that wouldn’t really bother most people (because the photocopier was too loud, because I cannot work in cubicle-land with people on phones around me, because of lighting or smells, because uniforms are too scratchy. My current boss has taken steps to try and help – letting me work from home when necessary, having maintenance install a dimmer switch in my office because of lighting, etc) – things that can easily be fixed if we decide that grown ups matter too!

  2. As a mother of a young man also on the spectrum, I couldn’t have said this better. I am glad that you were able to get money together to at least cover some sessions, I unfortunately cannot. My son has been on 4 waiting lists for almost 4 years for different things and was recently approved for special services at home which is also wait listed and we won’t reach the top unless funding is available. Thank you for writing this post, I am sure others will finally realize what families go through.

    • Thank you for sharing.
      I know there are many families that do not have the financial means to fund ANY therapy for their children.
      All the more reason why we need coverage for all of these kids !
      (Without the criteria that is currently in place, deciding whether a child is eligible or not.) 😦

  3. Great letter….this is why the monies need to be in the hands of the parents. There is tooooooo much government and not enough service. Too many layers and too many waitlists. I ran my daughters IBI program. I chose direct funding. It was more cost effective however the government agencies do not want DFO it competes with their program. They want to keep the funding to themselves.

    • Agreed ! We chose the DFO as well. We had already established a home team on our own while we waited for support. So it made more sense to continue with that option.

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