Friday, May 01, 2009

IBI Wait List Assessment at ErinOak.

Max had his long awaited assessment at ErinOak yesterday for the IBI wait list. I had been dreading this day since it was scheduled over a month ago. It should be noted that Max was referred to the wait list at the beginning of December. It took 5 months for him just to get seen to confirm that he is what ErinOak deems as an "appropriate" candidate for publicly funded IBI therapy.

I timed our arrival time perfectly so there would be no waiting. Two clinicians arrived in the waiting room and escorted Max and myself to a room filled with different functional and imaginary type toys. Max immediately sat down at a the pound-a-ball toy (we have the exact same toy at home) and started playing with it. One of the clinicians was a "Dr.Factor", the other's name escapes me. I wasn't given any business cards as part of the introduction (huge pet peeve of mine as I like to have this type of document should I need to refer back to it at a later date). Dr.Factor immediately informed me that he has been double booked and that he can only stay for a half hour of the 90 minute assessment. How about that, eh? We wait 5 months for this assessment, and he is double booked. He seemed non-plussed by this as his counterpart would be continuing on where he left off and they would videotape the assessment should they have any questions. I was not impressed with the fact that he was going to base his assessment of Max, and make a decision that will affect our family's ability to survive financially under the huge burden of IBI therapy on only a half hour of face time with Max. He should have rescheduled one of his double bookings. Max deserves better.

Dr.Factor proceeded to ask me a series of questions about Max's behaviour. I made sure to answer 100% honestly, as much as it killed me to once again highlight that Max cannot count, identify letters, point, make verbal requests, pretend play, engage other children, eat with a fork, and the list goes on. What really upset me was being told that if Max truly "stimms" (Max exhibits typical hand flapping and wiggles his fingers in front of his eyes when he is over or under stimulated), that he would be exhibiting this behaviour all the time. The fact that Dr.Factor did not see Max "stimming" as I was reporting, meant that he didn't truly stimm. This was after only 10 minutes of observation. Max also did not bang his head during the assessment, so I must be lying about the fact that we get woken up multiple times a night to the sound of him pounding his head against the wall so hard that he shakes the house and the neighbours can hear it. He didn't tear at his face with his hands either, so I must also be lying about the fact that Max harms himself when he gets upset.

Dr.Factor also asked me many of the questions multiple times, rephrasing them, and inserting incorrect information (example - after I had said Max maybe has 10 words that he uses echolalicly, but they are very inconsistent, he came back a few minutes later with "So, Max has 20 words?"). I got so irritated by this that I finally pointed out "You already asked me that, no, 10 words". I am not sure if he was trying to trick me, or was just scatter brained. Even better, when I described Cameron as appearing "neurotypical", I was told that parents don't normally use this term, as if I'm not smart enough to use clinical jargon.

I was then informed that should Max be accepted onto the wait list, it is 3 years long, and they are only accepting the most extreme cases of Autism. I was already completely stressed out, so having this information relayed to me (and from what I know, this information is inaccurate) did not help. The truth, according to Pauline Eaton, the AIS Program Manager, is that the wait list is now 22 to 26 months. Also, from what I know just from speaking with other parents of Autistic children, they do not accept the most extreme cases, they accept moderate to severe cases, which Max certainly is. I think that ErinOak could do a much better job of helping parents through this stressful process. Perhaps a Program Coordinator could meet with parents for a few minutes before the assessment to answer these types of questions, and let the clinicians, who lack any kind of bedside manners or soft skills, do their assessments.

I was so upset about this meeting that when I got home, I immediately called MPP Kevin Flynn's office to let him know (as he had requested) how the assessment went. I called and left a message for Kim Pace at Blue Balloon to get her take on what had happened. Then I called Pauline Eaton to discuss the assessment with her and to share my feelings on how it was handled. Apparently we can have Max reassessed if he is found ineligible. I'm not sure whether to laugh or cry about that. We won't find out for at least 3 months as to whether or not he has been officially accepted onto the wait list. If you're doing the math with me, that is 8 months from the date he was referred. Eight months of waiting just to find out if we get to wait some more!

On a positive note, I received the most wonderful email from Kim Pace, (that she sent at 10:41pm!) that proved once again that we have Max in exactly the right place for his therapy. I really believe that Kim is my personal angel, sent to me to help guide me through this journey with Max. I hope she doesn't mind, but I am going to share her email:

Katrina ... you are one incredibly talented, special person and don't you forget it! You inspire me daily!

I am sorry you had a crappy experience at Erinoak today. I am especially sorry that you had that experience on your birthday.

Look past it all - into the future .. several years maybe but there it is....do you see it? That beautiful, smiling, happy boy! That's MAX. That's MAX's voice! That's MAX talking! That's MAX playing with toys! That is MAX calling you "mama".

Visualize it - each and every day and that is what WILL be. Believe it with every ounce of strength you have and there will be no other alternative. I am living proof of this.
Happy Birthday!
Kim

15 comments:

  1. Anonymous11:59 AM

    A few medical professionals (and I use professionals rather loosely here) are so insecure that the only way they can deal with human beings is to put on a cloak of superiority which they like to think of as objectivity. No, you are not allowed to use a term that indicates you are well informed. It is easier for them to carry out their charade when they can see you as ignorant and treat you accordingly. Unfortunately, bad beside manner is not something any board takes seriously as a patient complaint. However, they do take seriously this double booking/billing issue. (Apparently this makes them look bad but being jerks doesn't?) I hope this doc doesn't get to bill OHIP for a full consult! I would insist on a new and full consultation now, or go to the college and complain.

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  2. Unfortunately this is a case where I need them more than they need me. ErinOak controls the purse strings for all publicly funded IBI therapy in Halton Region. We are just one of thousands of families who need their services. They get to act however they want, and to a certain extent, we have to accept that, and with a smile. I'm hoping that blogging about my experiences will force them to clean up their act, or at least be accountable. Hey, I can dream...

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  3. Ugh. Kat, that sounds like an awful experience. There are definitely doctors out there who believe they are the end-all-and-be-all, and for all practical purposes they can be, sadly. But so many are just threatened by parents who actually have a little knowledge. They like to think we just show up and they wave their Sceptre of Authority and we kowtow and la la la. They don't want to "partner" with us in our child's care...they think we don't know anything worth knowing. And that attitude I think goes back generations, especially in neuropsychology and pediatrics.

    This attitude permeates medical schools, universities and hospitals. the authority is the doctor, everyone else is secondary. Being someone who doesn't do well with authority flaunted in my face, I really empathize here.

    The motto from many of the practitioners we have seen is:

    Doctor is God.

    If you disagree, read it again.

    T.

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  4. Anonymous2:32 PM

    " deep sigh..,...tears of frustration....cursing, banging the computer mouse, yelling out WTF!!!!
    It sucks, this whole damn curse sucks and at the expensive of our beautiful, innocent children ! This is the second blow to the head ,roll my eyes in disbelief story I am reading/hearing about today. What's really pathetic is that although I am in rage right now, why am I not surprised? Sorry , just having a moment...pass the Vodka please!
    xTag

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  5. Anonymous6:27 PM

    I wish I could tell you that your experience is an exception, but I'm afraid it's all too common. We went through the same thing with Toronto Preschool Autism Services a few years' ago, except we had to wait two years for the eligibility assessment. It's inexcusable, however, to make you wait so long for the results. All they have to do is add up the test scores which they could do in about five minutes. I suspect there is something else going on here. Did you tell them you wanted to go with the DFO? That's a fatal mistake.

    At the moment only 20% of all children with autism receive the government funding for therapy (this number is based on government statistics). At this time of year the regional centres are looking to cull the numbers of the waitlists and provide as few children as possible with funding. The reason for this has to do with when and how the centres receive funding from the government. Essentially they are trying to grab as many tax dollars as possible.

    Also, I'm not sure about Erinoak, but the Clinical Directors of most regional service providers are psychologists, not MDs. The other person was probably a psychometrist -- someone with an MA at most.

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  6. I don't understand why saying you want to go DFO is a fatal mistake. One third of the spots are DFO in Halton. How it works is that when your turn comes up, they let you know if it is DFO or DSO and then you can either take what they offer you or wait until the next spot comes up that is your preference.

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  7. What the %$$*&?? I feel so angry just reading this. We have only just begun, but one of the private professionals I met told me after meeting Khaled that he will most likely not get funded (because he does not exhibit a lot of problem behaviors - even though he cannot count, eat with fork, understand a lot of basic instruction etc etc etc)

    I feel so disheartened, but I am so glad you write about your experience, so I can be mentally prepared for what is to follow.

    It must have been hard sitting there trying so hard not to make a mistake and feeling like these "doctors" are almost trying to trump you so you they can make you seem like a lying dumb person who is making things up to get money for therapy. How truly unfair.

    I would start looking for a lawyer just in case.

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  8. Sandra Bradley8:55 AM

    Hello. My son is now 20 years old and was only 27 months old when we found out he has autism. I just wanted to say a few things about Dr. David Factor. My son was once a client of Thistletown Regional Center. Dr. Factor was one of the many lovely people on staff there. I have nothing but high praises for this man. He did many assesments of my son over the years and althought he may have seemed fluster at times he always had my son, and any other children I knew of best intrests at heart. Yes he is busy, yes he sometimes gets double booked, but when you are as good as him with the many years of expereince behind you, sometimes you get overbooked. He truely does try his best and I am sorry to hear that you didn't like his style. He know a lot about autism and pdd. He is truely a man that is worth having on your side.
    thanks,
    Sandi
    pccbradley@yahoo.com

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  9. Anonymous11:12 AM

    Yes, it would be good to have him on Max's side!

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  10. How disturbing and disheartening. I'm so sorry you had such a bad experience. You're right, Max, and all of our children deserve better - and these days parents are fed up and motivated enough to create change. Things must and will change.

    Sharon

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  11. Sandi - I have no doubt that Dr.Factor is a qualified and has an amazing amount of knowledge regarding Autism and PDD. My issue is that he is assessing Max to determine if we will eventually receive funding for IBI therapy. We waited 5 months for this appointment. There were supposed to be 2 people in the room assessing Max - one to ask me questions, the other to observe Max and attempt to get him to interact, etc. With Dr.Factor only staying for one third of the appointment, the other person was left to interview me, and Max was left on his own, with nobody working with him to see if he could or would exhibit some of the behaviours we were discussing.

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  12. I am sorry you have to struggle through this right now. The email from Kim gave me the chills. What a positive and supportive person! Good to have those on your side.

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  13. I found your post through the autism Ontario yahoo message board - I too remember this doctor when my son was assessed 4 years ago (we waited on the wait list 2 years) and he was turned down, as he was too high functioning. Dr. Factor suggested medication -- and that's about it! I'll never forget some of the testing, a bunch of plastic spoons and forks were dumped out, and he was supposed to identify the spoons from the forks....there is no doubt in my mind that he COULD do it, but he WOULDN'T do it....they decided that he could not perform that test -- I suggested that perhaps the fact that he WOULDN'T and/or COULDN'T perform that test might indicate his need for IBI therapy ---
    At another point in the testing at Erin Oak's offices, my son was playing (for a few seconds) with a toy that spins, and Dr. Factor made a point to comment to his associate "he's interested in spinning toys" and they recorded this -- yes, he was, for a few seconds, just like most children that this toy was built for would play with it.....toys spin for a reason, not just to entertain all the autistic children! I found the whole thing laughable -- if I knew then what I know now.....

    Dr. Factor was quite different --- as I've continued our autism journey (my son is 8 now) I've discovered that many, MANY professionals that are dealing with autism are "different" -- perhaps not so far off of the spectrum themselves? It's very difficult to not get the help you need, especially at the age your son is now....but it does get better -- just keep educating yourself, keep fighting for his rights, and keep believing in him, even when the "experts" don't.....it makes a world of difference! The changes my son has made since age 4 to now are phenomenal, despite the lack of help I've received from the government experts!

    Sue

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    Replies
    1. Anonymous11:09 AM

      I definitely understand all of your frustrations. I can only imagine what it is like to have to wait such extreme lengths of time to have your child's needs addressed. I also agree that there are many doctors who lack bedside manner and a personality in general;however, I have worked alongside several healthcare practitioners at two of the children's treatment centres in Ontario and there is an extreme lack of resources in these publicly funded centres. There are far more children awaiting services than there are clinicians who can serve them and still, jobs are being cut. Wait-times are on the rise and are soaring to ridiculously lengths of time. The clinicians who are working at these centres truly have their hearts in the right place and would like nothing more than for every child to receive the timely treatment they deserve. I have witnessed first hand how overburdened these employees are. I am not a parent, and if I were, I would certainly be feeling similar feelings to what you are all expressing, but cut Erinoak some slack. They are servicing one of the most populated areas in Ontario and the deficiency in resources is really out of their hands. The Ontario Association of Children's Rehabilitation Services is actively proposing budget increases but it is ultimately the government that decides where money is allocated. The system is flawed, the employees are overworked and they are doing the best they can. I also think that it is wonderful that you all are very educated and informed on ASD, but keep in mind that doctors and other medical professionals can only see so much in the limited time they have to assess your child which makes it extremely difficult to come to any definitive conclusions. I'm not trying to make light of how the doctor treated you in your long-awaited assessment, but try to put yourself in their position. Ultimately, at the end of the day, you are the sole expert on your child and the primary advocate for them so don't stop fighting for your child. Maybe just try to consider all of the facts before you start pointing fingers at individuals who are truly trying to do the best they can under the circumstances.

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    2. janet dunster10:49 AM

      I know David Factor very well.

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