Monday, January 31, 2011

IBI waiting lists = denial of therapy

I haven't written a single post for a long time. The reason was, I had couple of unpleasant things happen, and I was postponing writing about them since spreading my misery is not my favourite pass-time anymore. Procrastination is my faithful although irritating companion, so days became weeks and weeks became months. Things were happening, Holidays came and went, and I was waiting for a whiff of inspiration. And waves of it were coming periodically, but none of them powerful enough to knock me out of my sluggish ways. Untill yesterday that is.

I heard a knock to my door, and there he was: the young father of a two year old boy who was diagnosed with autism just few months ago. He lives just couple of blocks down the street. He had noticed my car window sign, and decided to came and ask "What is it all about?" I saw in his eyes pain and shock, disbelief, and despair, and I also saw strength and determination and love for his little boy. He reminded me of my own self from six years ago. I was moved and at the same time shaken a little.

Why? Because nothing has changed in six years. The difference is, my neighbour was told he will be waiting for two and a half years for the therapy, whereas I was originally told that we would only have to wait a year. As it turned out for us, Sebastian got funding for treatment two years after he was first diagnosed. And we were lucky since a lot of children were waiting even longer. So, in six years, nothing has changed. The situation for parents who learn they have autistic children is even worse then it was six years ago!

WAITING LISTS that last years are nothing but a disguised yet very blunt DENIAL of the only available chance for autistic children to have improved, adult lives. I do not know why this situation is able to go on for so long... Maybe it's simply the fact that society in general does not value kids who have intellectual difficulties. Maybe our policy and decision makers (politicians and judges) are of a generation who grew up when kids who did not measure up intellectually or developmentally were a source of shame for their families and were often locked into institutions so that even their existence was kept secret. Maybe the parents of autistic children are so overwhelmed by the daily realities of coping with and caring for their children that concrete political change seems an abstract and unattainable goal.

Waiting lists are a very effective way of keeping parents of autistic children in line. Dangling that carrot works well. Parents do not think about the fact that the therapy will be taken away just a few months after it started, with an official explanation that their kids are too autistic or not autistic enough to continue to receive this vital service. Professionals corrupted by years on the government payroll laboriously prepare the way to justify such actions by producing discriminatory documents like the Clinical Continuation Criteria. It is difficult to believe, but true.

The public is led to believe that it is about money, but it is not. The word EXPENSIVE is always used when IBI (Intensive Behavioural Intervention therapy--the only clinically proven treatment for children with autism) is mentioned in the media. Yet in my son's case, attending public school for nine months of the year is more expensive for the taxpayers than would be six hours of therapy a day, year round, by a private IBI provider. And as our friend Bruce said once:

"Our government claims that it has fiscal problems and our children have intellectual disability. The truth is our children have fiscal problems, and the government has intellectual disability."

I often wonder about how such a compassionate, self respecting and "progressive" society as Canada can create and tolerate such absurd and senseless, judgmental and cruel policies. It boggles my mind.

I am trying to be positive and optimistic to get myself out of the burnout I am going through. But I have yet to find the positive angle form which to look at this situation.


  1. Maryna, nice to hear from you... I was worried, it's been a long time!!

  2. I was just asking David the other night if we had a firing range here in might be a good therapy for me, shopping is to expensive

  3. Hey you posted! I am so glad to read this...I have been out of the scene...and no time now to come back will try though.

  4. Hello there Maryna, I am new to this site, and just came across your article today as I was writing to the Minister of health about this very topic. I am wondering what steps any of you have taken, or who in government has been written to, if anyone has received a response, etc. etc. As I am prepared to do whatever it takes to have these policies and funding etc changed. My son also has Autism he is 4 and barely speaks, he has only just been put on the wait list for IBI and I am also not a millionaire so I am going to do what I can do, and see what happens.