Tuesday, July 28, 2009

IBI Wait List Assessment at ErinOak: Part 2 (Heartbreak in an Envelope).

I have been waiting for three long months to find out whether or not Max is Autistic enough. Autistic enough to qualify for IBI funding through ErinOak. The assessment was horrible. I was made to feel like I was asking for something my child did not deserve, did not need. It was inferred that I was exaggerating when I spoke of Max's challenging behaviours, that I was somehow misrepresenting just how Autistic he is. And dog forbid if he was too Autistic. What then?

The envelope that arrived in the mail from ErinOak yesterday was big and thick. I suspected that meant we were receiving "good" news. Good in that he will eventually receive funding. Heartbreaking because the wait list for funding is 24 - 36 months, and we only started our waiting in December 2008. We spend $1000 a week on Max's therapy. We receive no help from the government. For all of my friends in the US who think we have it so grand up here in Canada with our public health care, let me tell you it isn't all it is cracked up to be. For all of my friends in Canada who think that just because the Ministry of Ontario website states there is funding for Autism therapy, let me tell you this is a bold face lie.

At a minimum, we have 1.5 years of waiting ahead of us before we receive funding for Max's therapy. I've said it before and I'll say it again: the key years for early intervention for children with Autism are between the ages of 2 and 5.  In the best case scenario (a mere 24 month wait) Max will be almost 6 years old before he receives funding. And that assumes that he is still considered "Autistic enough" by the time his name comes up on the long list of children desperately waiting for funding. The "risk" of paying for IBI therapy out of our own pocket is that he will progress too much while we wait for funding. Makes sense right? The very therapy he needs to learn is working, and if it is proven to work too well, the government will not fund it.  Excuse me while I go jump out my basement window.

But for now, I am relieved that at the very least he gets to stay on the wait list. Relieved yet heartbroken as I read Max's assessment which describes him as in the "Low range (less than 1st percentile)" for communication, daily living skills, socialization, and motor skills. If he is in the bottom percentile, why then was I made to think there was a real possibility he wouldn't be accepted for funding? Why would they do that to me? To Max? They didn't see his magic. The twinkle in his eyes, the joy in his smile was lost on them. They didn't see it.

My Max, you are an incredible little boy.  You are smart, and funny, and beautiful.  You have something special to offer the world and I promise you, I will never give up on you.  I won't let the system fail you.  I see your magic and I will make sure others do too.  Light of my life, I will get you everything you need.  I will find a way.


  1. This sucks a lot. They are all going to hell.
    But I know you will channel the rage in to something absolutely mind bogglingly creative and truly ground breaking for Max.

  2. @Stranded - you and me both sister.

    We will NOT fail our sons.

  3. I just don't get how they don't see ABA as an investment....these kids are going to cost the gov't a helluva lot more money in the long run if they don't get the help now. Sadly, it's great news that you got on the waiting list. Here's hoping you are not waiting too long.

  4. You are such a great mom.

  5. I am so sorry about this frustration - I can't even imagine what you're going through. You're such a determined person, though - I have no doubt you'll find a way around this.

    Not sure I understand one thing, though - Can ErinOak not tell you when you'll come up on the waiting list? Surely, they must have some idea from a planning perspective. At least it'll help you plan financially (and mentally!).


  6. My heart is breaking for you, Kat. I can't imagine how sad and frustrating the whole wait list process has been. I hope you know that you are not the only person that sees the sparkle and magic in Max. He is an absolute joy and we know that you will do what it takes to get him everything he needs.

  7. Anonymous8:37 a.m.

    Tell us more about Erin Oaks, Kat. Is it all IBI? Tell us about how it is different than what Max gets now that you have to pay for out of pocket... sigh, which is an injustice to say the least.

    I want to know more...


  8. ErinOak is the regional service provider for IBI therapy. They also provide speech therapy. When it comes to IBI, you can choose to either use ErinOak as your service provider, or you can choose to receive funding directly and set up a home based team or use a provider like blueballoon, which is what we do for Max. Except we have no funding, so we pay out of pocket.

  9. Gah, I'm so frustrated on your behalf. I will be sending my prayers and good thoughts that... well, I don't even know what the best outcome is right now, short of a miracle, but I guess I can pray for a miracle. And strength for you. The whole thing just really sucks. :(

  10. We're just starting on this journey with our son Tristan. And I just got our letter from ErinOak telling us we now have to wait for the assessment to see if he's autistic enough. It's so incredibly frustrating. Its absolutely criminal that our kids have to wait for this vital therapy. Can you imagine if a hospital made a child with cancer wait to have the cancer assessed to see if it was bad enough and then wait some more to get treatment? I wish no one had to go through this, but in a way its nice to know I'm not alone.

  11. Jennifer J8:25 p.m.

    I can only imagine how very frustrating this must be, Kat. This gov't of ours needs to step up so these waiting periods don't turn into missed opportunities for early intervention for families who would struggle to pay out of pocket. (which would be most families considering THAT cost!) It doesn't seem fair.

  12. Anonymous9:57 p.m.

    I already said this to you on twitter, I wanted to say it again - I totally hear you about the wait list issue, I know it really sucks. It would be awesome if every eligible child could get the intervention they need right away.

    In Ontario, IBI is not considered a health entitlement in the same way that, let's say, pap smears or colonoscopies are. (No idea why I went down there! Anyway!) That's an issue to be concerned about - why is IBI considered a social service rather than a health service?

    If we maintain that IBI is a social service, then please, please put a caveat on this post. The Ministry of Children and Youth Services funds childhood autism therapy. The Ministry of Health and Long Term Care funds health services, mental and physical.

    I just worry, at this time of debate in the US, that Americans are going to read this and condemn a public/single payer system without understanding the complexities. We should all remember that you were able to give birth to your wonderful son without incurring a $30K bill after. You are able to meet your families' physical health care bills without declaring bankruptcy.

    The health care system in Canada is nowhere near perfect - but at least the fundamentals of it are that health is a human right.

    I'm sorry that you have to wait so long, though, I really am.

  13. I am not going to put a caveat on the post. I agree that healthcare is a human right. It is my belief that the Canadian government has specifically decided to fund IBI therapy through The Ministry of Children and Youth Services so that they can keep a cap on the spending for healthcare for children with Autism. If they funded it through the healthcare system, they would have to cover it for all Autistic children, because as you said, healthcare is a human right.

    I am not able to meet my families' physical health care bills. I have remortgaged my home, and I will likely not be able to keep up Max's required level of therapy on my own.

    Healthcare is a human right, and the Canadian healthcare system is failing my son. Just because they decide to define IBI as a social program and not healthcare does not put them in the clear.

  14. Anonymous10:58 p.m.

    You know what, I had this reaction when I read your post, because I tend to think in the macro, like 'noooo noooo don't codemn health care right now!' because it just feels so senstive because of the US debate right now. Like, I know it's not perfect but isn't it so much BETTER and can't we focus on that.

    But this isn't about that. Your post is not about the macro stuff and the health care debate. It's about a family trying to do the best they can for their son, and coming up against too many road blocks. Sorry for my knee jerk reaction.

  15. I know exactly how you are feeling. My son has been on wait list for past 2.5 years and I am still waiting. Apparently he is now in 25 top kids waiting. I am as frustrated as you can imagine. I absolutely hate it

  16. Our daughter, 22 months, has just been diagnosed with autism. We are waiting for an assessment, but if we are not approved for funding we are going to Alberta or BC, where the programs are much better. BC funds $20,000 per year to every autistic child until age 6, and then $6,000 per year to age 18, regardless of how "autistic" they are, and you can spend it on a variety of therapies including IBI. The problem is that Ontario caps the program at a certain amount of money regardless of the number of children needing help. BC just pays a little more when one more child needs the help.

    Of course, it's just sad we might have to leave our family to go across the country because we happen to live in the wrong place. But that's what you get when health care is provincially managed.

  17. i am very disturbed to hear that. but hats off to you that you are doing it for your son because our kids are precious and we love them.