It's Been a Long, Long While...

It's been a long, long while since I've posted on here.  Why?  Well, if you haven't been around, you might see something different.  Or check out the logo above.

What happened?

We moved.  Far.  Thousands of kilometres, in fact. 

You might think me crazy to uproot the entire family and move to the other side of the country... but hear me out, then you might change your mind.

I posted quite some time ago about the end of early intervention for A.

In that post, I asked... what to do?  Well, we figured it out.  We left.  We followed the services... and there are many to be had in Alberta.

Let's start with A.  Once IBI ends in Ontario, there is very little in the way of supports.  Yes, you can get the ABA program in Ontario now, but they are barred from entering the schools and there are waiting lists.  The quality of service is quite variable and the treatment protocol is indirect; it is a consultative service mostly geared to help parents cope.  Supports in the schools are even worse.  Every school board has its own policies in terms of what placements are available (and even when offered they may be full).  Boards have "specialists" but you're lucky if your kid's teacher gets a consult once a year let alone direct service.  In short, it sucks.  Life after IBI is not so good if after it's done, your kid still needs a lot of help.

Let's begin with schooling.  Ontario schools do a very poor job of educating kids with ASD.  Yes, there are some schools and some teachers and some principals who really do try, but they have no training (a weekend workshop on autism does not an expert make), and staffing levels can change at a moment's notice.  The biggest issue in Ontario is that special education grants go to the school board and there is no accountability in how that money is spent.

There are private school options in Ontario if you live in Toronto or Ottawa.  Tuition cost?  $56,000 per year.  Not affordable by a long shot.  What about in Calgary?  Yes, there is, and good news, it's $12,000 per year.  How is this possible?  One very important reason.  Alberta funds private schools and not only that, special education grants are tied to the student and go directly to the school in which they attend.  How about that?  What a logical idea.  The money that the government allocates for my kid is ... spent on my kid.  Neat.

Moving onto T on the school front.  In Ontario T would have half-time junior kindergarten (with us not living in a designated area for full day yet) in a classroom with 25 kids with zero support.  Here, T gets to attend a specialized pre-school with 10 kids, a teacher's aide, and a speech pathologist or occupational therapist in the room all the time.  No, not a once a year consult, but like direct therapy because these therapists are on staff at the school.  Not the board.  The school.  And we pay nothing for this, because guess what?  The school gets a grant for T and yet again, it's used to educate him.  Huh.

What about other supports?  There's lots:

• Respite supports so Mom and I can go out on dates or have time to ourselves.
• Overnight help for A when her sleeping is sucking.
• Community support to allow A and T to enjoy things typical kids do like swimming lessons or classes.
• Direct speech language, occupational and physiotherapy to help the kids development.
• Board Certified Behaviour Analyst to work with before mentioned team to work on behavioural issues and general learning.
• Support to hire one-on-one aides to work with the kids on skills.

There's no waiting list.  There's no bloated government bureaucracy that controls the funds or provides services at stupidly high rates when the private sector could do it more efficiently.  It's all about parent choice.

Still wondering why we moved?  We're not.  Well, maybe when it's -30 degrees outside.  But otherwise, not so much! 
 

1,478 Kids Are Still Waiting

This recent article in the Toronto Star is the latest occasional reminder that pops up in the media about the number of kids waiting for Ontario's Autism Intervention Program.  The waiting lists continue to grow, while the Ontario government attempts to gain some control by pushing off as many kids as possible into an inadequate and unprepared school system.  This is why so many parents "wait it out" for the Direct Funding Option (DFO) offered by the government program.  The DFO program allows parents to hire private providers to provide therapy.  For parents like us, who are already spending thousands of dollars every month on private therapy, it is ideal, since we can keep our existing team.  Many informed parents also worry that their funding will be cut off if their child fails any of the milestones laid out by their regional autism provider; having DFO allows parents to re-assume these astronomical costs again if needed to avoid being thrown into the schools when their children simply aren't ready yet.

Please don't get me wrong:  I'm not saying the schools have to be this way.  They could be more adequate if ABA therapists were allowed to work alongside teachers and teachers had the training they needed to provide ABA based learning.  But those resources are not available and we are not seeing any changes coming soon.

Ontario is facing a staggering deficit of $22 billion this year.  The Ontario Liberals claim they have removed the age cutoff for receiving IBI (true, but only after they fought it tooth and nail in the courts) and increased funding (also true, but the incidence of autism is growing and waiting lists are still ridiculous).  While I could forgive them for saying parents with children with autism must do their part, they have elected to spend millions more extending full-day kindergarten to many students in Ontario.  This program is estimated to cost $500 million annually to start and $1.5 billion annually when it is fully implemented.  Clearing the waiting list would cost the government $163 million.  Cutting it by half would cost $80 million.  That is with the current model - by giving all parents direct funding (a model used in BC), we could probably service many more children without paying the bloated costs of the regional autism providers (all government workers with benefits).

I am happy for those parents who can take advantage of full-day kindergarten next year.  Alanna's therapy costs will increase by 8% as the HST comes into effect in July, taxing her IBI services and helping to pay for full-day kindergarten.  Too bad Alanna won't likely be able to attend - she is still waiting with the other 1,478 children to get the skills to function in kindergarten.

Are We Crazy?

This week, we attended our "Parent Orientation" session at Thames Valley Children's Centre for the Autism Intervention Program.  There were six children represented, including ourselves (three couples, two dads, and two moms).  The kids ranged in age from 3.5 years old to age 6.  Alanna was far and away the youngest kid in the group at 26 months.  Every parent in the room relied on the public system for their diagnosis, waiting an average of 1-2 years for a diagnosis.  Not a single child has had any ABA intervention (or probably any intensive intervention of any kind) except Alanna.  Many parents were not even aware ABA services could be purchased privately and most were not aware of the costs.  I felt like a chump seeming "holier than thou" in the group since we've done our research and almost everything presented we learned months ago.

This has gotten me thinking - are we crazy?  We are killing ourselves to pay for Alanna's therapy and while some may argue we have the means to make it work (single parents with other children - it's not going to happen), most parents in the system aren't even aware treatment is possible outside of it.  They are unaware psychologists can diagnose autism and a 1-2 year wait just to get a diagnosis is not necessary.  If one used "the system", a two year old suspected of autism would not receive intervention until they are five or six if they are lucky.

So on the one hand I have to ask myself, if we are the only parents doing this, are we nuts?  Should we back off, restore some sanity to our lives and let the system take over? 

Is the reason the Ontario government can under-fund autism treatment because 90% of parents with children with autism don't know anything about how it works?  It's one thing to be aware of what is available and not be able to afford it, it's a completely different thing to have zero knowledge of it.

Seeing Alanna's progress, I can't bring myself to think of stopping.  We have to soldier on.  The system is a failure.  Crazy or not, our path is set until relief comes (17 months away and counting down) or we collapse from exhaustion trying to make this work.