An open letter to Kathleen Wynne, Part 2.

Oh, KathleAllYouNeedIsen. What. Have you. Done ?!

After hearing the recent changes announced by the Liberal government, regarding the Ontario Autism Program, I felt inclined to write to you again. Forgive me for having not written sooner, but you dropped a bomb on us Kathleen. I needed some time to crawl through the rubble.

I am the mother of a child with Autism, and I first wrote to you back in June 2014.

Kathleen, you humiliated me. You humiliated all of us that believed you, when you promised additional support and shorter waitlists for our children with special needs.

My husband and I tuned into our local news station, along with other eager parents in the Autism community, on March 29th. The $333 million in funding sounded promising ! I mean really, how could an announcement for additional funds towards supporting our children with Autism, be bad ? But it was. It was so bad.

You didn’t help Kathleen, you made it WORSE.

What was the ultimate cost of this additional funding ? Our children.

Half of these kids have been dropped from the waitlist indefinitely. Another allotment of children will receive a short round of therapy, before they too will be dismissed. Then, the remaining children will sit on that waitlist of yours and their parents will pray that they make it to the top, before their fifth birthday. The children that you ousted, were the kids that you allowed to sit on the waitlist. Some of them have waited years for the intervention that now, will never come.

I am writing to you as a parent of a child that is NOT, directly impacted by the recent changes to the IBI program. I guess you could say that our family dodged a bullet, because we were one of the “lucky families” that were discharged from government funded IBI, before the big announcement.

Our son is nine years old now. He was 6, when we finally received government funding, so he would have been one of the children left behind, according to the new rules. He was capable of learning at 6 years old and he is still capable of learning, in the present day.

Families are made to jump through hoops, when seeking a diagnosis and support from the Ontario government and it is extremely frustrating !

My husband and I knew that our son wasn’t developing typically by 18 months old, but even after expressing our concerns, we sat on a waitlist for two more years, waiting for him to be assessed.

Do you know what hurts more than hearing your child has a lifelong disorder, Kathleen ? Finding out that the therapy they need, is not covered by the Ontario Health Insurance Plan.

Do you know what makes that pain even worse ? Hearing that extended health care plans, don’t cover the therapy either.

But that’s okay, right ?! Because there was funding available to these ASD children, through the Ontario Autism Program ! Well, not all of them. Only some of the children that were diagnosed, were ever eligible for government funding. Then, even if a child was fortunate enough to be deemed “eligible” for treatment, their name was placed on a waitlist. That list, is where their name remained for several years, waiting on intervention. My son waited almost three years for government funded IBI.

We, like so many other families, emptied our accounts to fund his therapy privately, while we waited for his name to reach the top of the list. We remortgaged our home, borrowed money from family, withdrew our RRSP’s and spent the savings that we had set aside for our children’s education and let me tell you Kathleen, it was a hell of a lot more than the $8,000 consolation you are offering these families! We exhausted all of our financial resources to pay for our son’s private therapy program and ran out of personal funds, the month before the government was able to offer their assistance. All our money and investments were gone, but we still had hope! We knew that at the end of the deep, dark tunnel, there would be light, and that the government funded IBI program would be there for us to lift the financial burden. Even if only for a little while. Except, now it won’t be.

For so many families, THAT. WAS. THEIR LIFELINE ! You took it away.

It was a broken system yes, but you just smashed it to smithereens !

I feel the pain of these parents, I do. I am absolutely devastated for them ! You’re not devastated for the situation they are in, I can see that. It’s because you think that this decision will only impact the Autism families, but you’re wrong.

This decision impacts all of us !

These children with ASD, having had little to no intervention, will be sent into the school system by the hundreds, over the next 5 years. Your decision will affect the thousands of typical children that attend school, likely now overlooked, because their classmates with exceptionalities have needs that are greater than theirs. This is the school system that is already struggling to keep up with the existing number of special needs children in their care.

The health care system will also suffer the consequences of your actions.

The parents of children with ASD are worn out. Their constant fight for services and the demands of caring for their kids, have left them exhausted. There is no lifeline now. They did their part. They waited their turn. Then, they were rewarded with abandonment by their Liberal government. I hope you took into account the number of parents that will need to seek out mental health services, for themselves. Their psychological and physical well-being will suffer, as a result of your decision. They have reached their breaking point.

The children with Autism whose services you denied, will grow into adults. Their parents will no longer be capable of caring for them and most, if not all of those grown children, will require full-time care. There are not enough resources for adults with Autism now, can you imagine the impact on the provincial economy when thousands of adults with Autism are in need of services, all at once ?

To say that I am disappointed in you and the Liberal government, would be an understatement, Kathleen.

You made the wrong decision and you know it.

The children and families that were waiting for services deserve to be reinforced for the undeniable amount of patience they have shown over the years. The way to do that, is by providing the children with the IBI services that they were entitled to.

It’s not too late to make it right.

Sara Park

CarterandMeBookLowResolutionboy and mehttps://www.facebook.com/CleverCarterAStoryAboutAutism/

www.clevercarter.ca

 

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7 thoughts on “An open letter to Kathleen Wynne, Part 2.

  1. Dear Sarah, Thank you for sharing your letter to the Liberal Government, Kathleen Wynne. Also, thank you for sharing your stories about your son Carter which I enjoy reading. I have a 3 year old granddaughter Caitlin that has been diagnosed 13 months ago with autism and like many, many parents and grandparents with children on the spectrum we were devastated when we learnt about the changes the Liberal Government has made to the Ontario Autism program. Our little Caitlin has been on the waiting list since her diagnoses and we are very concerned that she might not receive the treatment by the time she turns 5 years old. Once again, thank you for continuing to fight the Liberal government and being the voice of children with autism.
    Sincerely,
    Desiree Johnson

  2. Sarah: A beautifully written letter which echoes the thoughts of so many parents of children with autism. Well done. I wrote my MPP this week and we are on the same wave length. You are right. The Liberal government is not looking at the long term implications for families and their communities. My son also will not be affected as he is in the last stages of his IBI therapy. IBI has been a lifesaver for our family. However, we must stand with the families who are affected and demand change. Autism does not end at 5.

    Heather Mackenzie

  3. I am so sad. Sad for everyone. Sad that money is misspent/allocated, promises are broken and that people, especially children suffer. I wish that I had the magic bullet. But I don’t.

    And so I hope that people will find the hope and money that they need so that their children, families and society as a whole can flourish.

    Besos, Sarah
    Journeys of The Zoo

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