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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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