Friday, 15 April 2016

Anger Over Changes to the IBI Program

There has been a lot of uproar about the changes to Ontario's publicly funded IBI program.  It's been very confusing trying to figure out just what the government is doing.  And a lot of parents are justifiably upset.

As I understand it, the government will be cutting off children over the age of 5 from receiving treatment.  There has been talk about a separate program for children over the age of 5, but no one seems to know the details or how long such a program would take to set up or who would qualify.  Families whose children are getting kicked off the waitlist will receive $8000 in funding, which is about 2 months of private therapy.  (For those wondering, that's barely enough time to get a program started and would be absolutely useless in terms of therapy.)

On the one hand, I can see the government's point of view.  The treatment model they use is really only effective for preschool and kindergarten level children.  So it makes sense to concentrate on making sure those kids get that treatment rather than making them wait long enough that it's no longer effective when it arrives.  (Most kids are diagnosed between 2 and 4 and the wait times are 18 months to 2 years.)

Going forward, the wait times will be shorter and children will receive the therapy when it's most effective.  That's good.

But there has to be a better way to deal with the transition than simply discarding entire groups of children whose only crime is to need help and be of the wrong age group.  That's the part that parents are angry about and they should be angry about it.  My children aren't affected and I'm still furious about how the changes are being handled.

Now, I don't agree with the plan of action being presented by most parents, which is to demand that their children still get the therapy.  That therapy isn't effective on older kids and I believe that after waiting years, these children are entitled to the most effective treatment that science can deliver.  If the government doesn't have a program to deliver it, then they should be doing direct funding to allow private programs to take up the slack.

I'm not going to cut the government any slack on this issue.  They've known that the wait times and treatment ages were a problem for over a decade (since this was a debate back when Alex was diagnosed).  They've known how important it is for children with autism to receive treatment and how expensive that treatment is for families.  They've known how much stress the financial and emotional burden places on parents.

Telling a large group of desperate people that "too bad, sorry, we're not giving the help we promised" is not acceptable.  The current program is the equivalent of kindergarten and the children being cut are at Grade 1 or 2 levels.  Promising them more kindergarten is not acceptable.  They deserve appropriate services at their appropriate age and developmental level.

Stop pretending that the challenges these families face can be easily brushed aside.  These children are Canadian citizens.  They deserve more than "too bad" from their leaders.

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