Tuesday, January 25, 2011

reassessment for the erinoak ibi waitlist.

Max has been on the ErinoakKids wait list for IBI/ABA funding for over 25 months.  For those of you who are unfamiliar with the situation around funding for Autism therapy in Canada, I'll give you a bit of background.  Max was officially diagnosed with Autism in December 2008 at the age of 32 months.  Once he had his diagnosis, he went on a wait list for therapy.  Since the key years for intensive behaviour intervention therapy are between the ages of 2 and 5, waiting to start therapy until he came to the top of the list (projected to be sometime this summer, after his fifth birthday) was not something we were willing to do.  Instead we have gone heavily into debt, remortgaged our home twice and relied on the incredible generosity of our families to provide Max with the life saving therapy he requires to even have a chance at a life where he can be happy and successful (whatever that looks like for him).  Last year Max's total therapy bill came to over $52,000.  This year it will be more in the range of $70,000. 

As part of the ErinOakKids waitlist, Max was initially assessed in April 2009.  The experience was down right awful and I let it be known not only on this site, but via email and phone conversations with the powers that be at ErinOakKids.  When I found out that Max needed to have another assessment, this one in our home, I was very apprehensive.  All sorts of thoughts scurried through my head.  What if he no longer qualifies for funding because he has had so much progress? Not that progress is a bad thing, but we are barely hanging on right now, we can't keep up the payments for therapy if he doesn't qualify.  Also, I will lose my sh!t if that same "doctor" who did the initial assessment thinks he is stepping foot in my home.  What if Max won't cooperate?  What if for some reason he acts totally normal and they think he is "cured"?  To say I didn't sleep very well on Sunday night is putting it lightly. 

Fortunately, the in home assessment is a lot more laid back than the first one.  A very nice Senior Therapist, Chris Bruce, from the ErinOakKids Autism program arrived at our home and introduced himself.  Max started objecting to his presence immediately, but Chris wasn't phased and was able to coax Max into cooperating enough that he was able to do the testing he needed to do for the assessment.  Add to that, he was kind.  And he listened to what I was saying.  He didn't get defensive when I made comments about our previous experiences.  And the best part, was he was very excited about Max.  For the first time in this journey, someone said to me "do you know what the best thing about Max is? He picks things up really quickly." 

Do you know what the best thing about Max is? 

This therapist, who had only met Max that morning took the time to point out something very positive to me about my son. To say I was blown away puts in mildly.  I'm used to getting letters that inform me that "Max is in the bottom percentile for his age" and "Max had a difficult time doing xyz".  It lifted my spirits for someone to see Max's strengths and to so generously share them with me. 

As Chris was leaving, I thanked him for not having two heads.  He gave me a funny look, and I explained that with all of the hoops we have had to jump through to get Max funding, we haven't always been treated well.  I appreciated that he was kind and listened and really saw Max for the wonderful little guy he is.  Now let's hope that funding comes through soon!

8 comments:

  1. Good luck, Kat! Thanks for sharing that. :)

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  2. NicoleM12:41 PM

    It's amazing how impactful a little kindness can be. So little effort to give and yet our society focusses on the negative and rarely dishes out any positive.

    I remember the pyschologist who first diagnosed Jacob with ADD. She showed kindness to us during the discussions about the challenges we had been facing and I almost cried on the spot out of sheer gratitude.

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  3. Anonymous1:32 PM

    Our son was on the wait list (with Erinoak), we had to wait for 34 months, we too remortgaged our home during the wait. We are now into a year of funding but we are still out of pocket since the funding we got (21 hours a week) is not enough to support a clinical program. Wynberg vs Ontario (2006) determined we have no appeal to the amount of funding. We had the reassessment as well and Erinoak is now using third parties for this (better since they are not under the gun to worry about budget - which seems to be a primary criteria). I cannot offer any prediction on when funding will start for you since wait list movement defies any form of predictive analysis. That being said, the reassessment is the first step to the start of funding – how long to the second step (getting funding) can be a crap shoot (there are two waitlists, one for DSO and one for DFO, if offered a DSO spot and you turn it down and there is no DFO spot you may have to wait longer – our decline of DSO had us wait five extra months). In the workings of Erinoak this is good news.

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  4. Anonymous5:15 PM

    Thank you for your post regarding this. I have friends and family that don't believe the waitlists are that long. We are in durham and the waitlist is 3-4 years long. We have just started private therapy with our 2.5 year old.
    -kally-

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  5. Katrina, I too hope your funding comes in soon! However, you should be aware that they fund at the rate of $39/hour... but you have to pay your senior therapist and psychologist out of that too... so you may still be on the hook for some of the cost given your current provider. I am pretty sure ErinOak caps out funding at 21 hours per week maximum, and you will probably have to withdraw Max from school to get the money (which is a whole other issue).

    Kally, the waiting list varies WIDELY depending on the region. Durham is serviced by Kinark, and Kinark has the worst waitlist in the province at 3 to 4 years, plus the lowest hours at 18 hours per week. If you are willing to relocate to the Southwest region your wait will be considerably shorter.

    Know what else is great about Max? He inspires me all the time and give me so much hope when I see everything he has accomplished!

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  6. Anonymous10:14 AM

    One other thing to be aware of - Erinoak's $39 per hour is paid quarterly based on EVERY month being four weeks so they ACTUALLY only fund 48 weeks of a 52 week year, each quarter's payment is the same (unless they claw back unused amounts). You can not carry over unused amounts from one quarter to the next so if you do not spend all the money for a quarter it is deducted from the following quarter. It is a fair assumption that families will use all the money but timing of say a vacation could result in unspent funds, just something to keep in mind so planning spends every penny.

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  7. hi guys which ibi provider you guys have used...I have difficulty determining good from bad and rates they offer vary a lot too. Right now I am looking at following: Toronto IBI (39/hr), Alphabee(44/hr), Behavior Innovation (48/hr)

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