Autism Reality in Ontario

I have been looking for the benchMARKED film for a while now - this is a production of the Ontario Autism Coalition.  It's a good introduction to autism and the realities faced by families in Ontario.  A warning before you watch - the film is a downer and I think the producers meant it that way, so watch it when you're in a good mood.  (If you get a warning saying you have to download a player, just refresh the page and fast forward to where you left off to continue.)




Also, here are some updates since this mini-documentary was made:

• Paul Ceretti lost his appeal and Delanie was ejected from IBI.
• Mackenzie, Paul's other twin daughter, was also ejected from IBI.
• On a positive note, Paul has found a way to train students and other volunteers to continue this therapy for his girls on some level.
• I have no updates on the McIntoshs.

Autism Rates Rise Again

This recent article from the Ottawa Citizen is reporting that the CDC in the United States estimates Autism Spectrum Disorder prevalence at 1 in 91 children (about 1.1% of the population) and 1 in 58 boys (1.74% of boys).  This is a huge increase from the early days of 1 in 10000 births (0.01%).  What was once a rarity is now becoming more and more common.  A typical elementary school of perhaps 500 students will now include between five and ten students on the spectrum.

Will the prevalence reach 5% of boys in the next 20 years?  Governments need to prepare now for this inevitability, while researchers continue to work to determine what must be the missing environmental trigger for this disorder.

In Ontario, this means:

• More trained ABA therapists graduating from Ontario colleges, and appropriate placements for them to gain valuable experience.
• Mandatory training for Educational Assistants (EAs) working with children on the spectrum.
• Increased funding for the Autism Intervention Program - there are over 1,600 kids waiting, and this will get worse, not better, as prevalence continues to grow.
• Better access to early diagnosticians for autism.
• A plan and individualized funding for community care and involvement for adults transitioning from school.

Ontario Ministry Divisions Don't Help Our Kids

While researching this week (more on this on another post - I can't really talk about it yet), I spoke to several parents and I heard the same old refrain:  why can't my child transition from IBI to school more gradually?  Their children are six and seven years old, and they currently receiving intensive ABA treatment, but they would like their kids to be in school part-time.  In Ontario, this is not an option; children are either in full-time IBI (intensive ABA) or they are in school.  The school system does not provide adequate ABA supports because the education system does not provide adequate training or resources in the system.

So, parents are left with two bad options.  They can keep their child in IBI, getting the supports they need to have their child learn, even if they want their kids to socialize at school.  Or, they can leave ABA behind completely and try the school system.  This makes the waiting list worse because parents fight to keep IBI at a cost of $60,000 a year when less expensive supports would work just as well, if the government would allow a gradual transition to school and boards allowed behavioural therapists in the school system.

The parents to whom I spoke want their kids in school now.  But they can't because it means no ABA support.  So they are stuck, and meanwhile 1500 kids can't get service.

Here is what would be, in my opinion, the best solution:

1.  Regulate behavioural therapists so that the education system will not be afraid of them.  The school system allows other regulated professionals in the school, such as occupational therapists, but those therapists are regulated.  This is long overdue in Ontario.

2.  Transfer the Autism Intervention Program (AIP) and School Support Program (SSP) from the Ministry of Child and Youth Services to the Ministry of Education.  One mandate, one minister, one system.

3.  Allow a gradual transfer from intensive ABA to school.  Almost all intervention programs advocate this.  It is more natural, it is what parents want, and it will allow more children to receive service more quickly.

4.  Allow the professionals in (1) into the school system to provide proper supports to teachers and para-educators like educational assistants (EA)s.  Parents will even pay for this, saving the education system money in the long term.  

Thankfully Alanna avoids this whole problem by entering IBI at 2.5 years old.  She will probably be ready to transition by the time she is 5 or 6 years old.  But we are in the minority.  Most children receiving IBI are 6 or 7 because they had to wait 4 years for service.

Does the government ever ask the parents what they should do?  

Assessments

The provincial IBI program in Ontario likes to use two measures of progress - Adaptive Behaviour, like the Vineland II test, and IQ tests, such as the Weschler Preschool and Primary Scale of Intelligence (WPPSI).  Some parents do not care particularly about these measures, particularly the IQ test.  IQ is notoriously difficult to measure for autistic individuals due to the nature of autism:  communication is impaired so it is difficult for the individual to explain what they truly know.


If you live in Ontario and have a child with autism, you need to care about these instruments.  In particular, the Vineland II measures "adaptive" functioning.  This is basically a test to measure how well your child functions in life as compared to children their own age.  When used in an IBI program, it can typically be used to determine a child's "trajectory".  For example, in a six month period, is a child in IBI progressing at least six months in development for each domain?  If so, they are falling no further behind but not catching up either.  Failure to show enough improvement at the right rate results in the conclusion that the child's "development trajectory" is not being changed by IBI and results in a quick discharge thereafter.


The theory of intensive ABA (or IBI in Ontario) is that your child should be showing clinically significant gains across most domains or it is not effective (read:  not worth spending $60,000 per year of taxpayer money).  However, interestingly a 2006 study based on the autism program in Ontario found that all children, even those who were still progressing slowly, doubled their rate of development while in IBI.  From the study:

Rate of Development. As noted above, children were quite variable but, on average, were substantially delayed developmentally prior to the program. In fact, they had been developing at about one-third of the rate of a typically developing child. Children's rate of development (based on the Vineland age equivalent scores) during IBI was approximately double their rate prior to IBI, and this was true for all three initial subgroups, i.e., even the lower functioning children doubled their rate of development, as a group. This suggests that the developmental trajectory of children was altered during their participation in the IBI program. Many children were even developing at a typical rate (although they may not have "caught up" to typical peers).

So if you are parent of child in IBI, or waiting for IBI - pay attention to this test.  It is used to make clinical decisions on your child's continued progression in IBI.

Confessions

I'm starting to get better at comparing Alanna to other kids her own age.  Many times, I'm able to accept where the kids are developmentally, and accept where Alanna is developmentally and how she does many things a normal kid does, albeit sometimes in a very different way.  However, I've got to confess, I did lapse into my self-pity again this week.  A very sweet little girl I know who is a little younger than Alanna saw her Dad after about a 45 minute separation, saw him, and came running shouting "Daddy, Daddy!" only to be picked up in his arms and swung around... naturally she had a big grin on her face.  After I got over coveting that simple interaction I realized that Alanna does that with me in her own way.  She might try to climb over me, smile, or press her body against mine.  If I'm really lucky I might even get a nice hug!  It is her way of telling me she missed me.

While I'm confessing, I have another thing to share.  My wife sometimes reminds me not to try to plan too far in the future (I am very much long term, forward looking person).  With Alanna, it is so hard to tell where she is going to be.  Some days, I feel happy knowing she will be herself (and develop as far as she can) and that's good enough for everyone, including me.  Other days, I worry myself thinking if I don't keep pushing for the best interventions, she won't make all the gains she could make... and have the best life she could have.

Case in point:  transition to school.  Alanna probably has a few years before this becomes an issue since she is not yet even three.  But when the time comes, do we spend $58,000 a year (how we would even get this money is beside the point) on a designated ABA school like New Haven, where Alanna will certainly learn more skills designed to get to be as independent as possible?  Or, would I use that money to save for her future (RDSP) or another a savings vehicle to provide her with lifetime care?  Yes, she will probably make some gains in the public school system, but she would make probably greater gains in a special school.  However, spending $750,000 until she turns 18 (assuming I had this money) to fund this education vs. saving it for a lifetime care fund is going to be a tough decision.  Some argue once the critical intervention time has passed, intensive intervention is not needed.  This is the refrain of the Ontario government, which stresses constantly that IBI is "time limited."  I am not sure I agree.  However when it is your money and you are responsible for the life of a child, it's not such an easy decision.  I wrack my brain on this stuff.

So perhaps I should "cross that bridge when we get to it", as my wife likes to remind me.  I'll really try.  Let's see how long I can put it out of my mind!

Social Engagement

I have mixed feelings about Alanna's clinical psychologist lately.  On the one hand, he impressed me greatly this week when he said that Alanna is making good progress but he is concerned about her engagement and lack of initiation.
He is concerned she is too passive; taking direction but not initiating on her own enough.  Now, I agree with him completely, but Alanna does initiate to ask for things.  She asks for things all the time and if she wants you for something, she can be persistent!  However, she is often content to observe in a social situation and either zone out or wait to be invited to participate rather than go and do something.  For example, at pre-school, she will play with toys, but she will not go and pick something out she likes and play spontaneously.  You have to ask her to pick one or show her one to play with it.  This is fairly typical of how she is at home as well.

So the psychologist agrees with me in that he believes the ABLLS-R is not helpful for social programming.  His solution is to adapt RDI activities to increase engagement and initiation.  We will definitely be doing that.  However, he is also leery of us consulting with another behaviour analyst to get the programming and training in place.  Many ITs are very comfortable with discrete trial but engagement activities need to be more natural environment because by prompting you are kind of defeating the purpose.  The person with which we want to consult is someone with lots of experience in this area.  We think everyone will benefit from their knowledge.  How frustrating!

IBI Helps Most Children to Some Degree

I was looking through some old links and happened across this link on ONTABA.  Adrienne Perry, a professor at York University, has a significant research interest in IBI and is actively publishing on this subject.

Of note from the link above:

Children's rate of development (based on the Vineland age equivalent scores) during IBI was approximately double their rate prior to IBI, and this was true for all three initial subgroups, i.e., even the lower functioning children doubled their rate of development, as a group. This suggests that the developmental trajectory of children was altered during their participation in the IBI program. Many children were even developing at a typical rate (although they may not have "caught up" to typical peers).

Here is an interesting note - even those children considered lower-functioning doubled their rate of development while in IBI.  Even those kids "cut off" from IBI because their "trajectory" is not altered doubled their rate of development.  This statement tells me that discharging children from IBI because progression is not fast enough is more about money and is not what is best for the child.  Putting kids in school therefore would slow their rate of development to what it would have been pre-treatment.  Put another way, transitioning to school a child who cannot learn from their environment halves their rate of development.

In a more recent journal article:
Perry, A et al.  Predictors of outcome for children receiving intensive behavioural intervention in a large, community based program.  Research In Autism Spectrum Disorders (2010). 

On the impact of age at entry:

"...if the goal of IBI is to alter developmental trajectories and boost children into the average range, this may only be feasible if children begin IBI when they are very young.  Thus, it is critical that efforts are made to encourage early diagnosis and to reduce wait lists and ensure children receive IBI early whenever possible." pg. 10

The above quote comes out of some discussion that "best outcome" cases were strongly correlated with age at entry.

On the use of benchmarks:

"Thus, it seems to us most responsible to offer children with autism an initial trial of IBI, as recommend by the Ontario Expert Clinical Panel and to monitor their progress carefully using clear and specific benchmarks, as recommended by the Ontario Benchmark Development Expert Panel." pg. 12

It is important to note the authors, with the notable exception of Adrienne Perry (to my knowledge) are all current clinical directors in the Ontario IBI program or have been clinical directors in the past.

Yes, I wholeheartedly agree with early diagnosis and intervention.  I do not agree with the benchmarks.  ABA can help all children regardless of how fast they are developing.

Question and Answer

One the nice things about blogging is that with the right tools, you can see how people ended up on your blog.  Most non-regular readers come from Google, and it is interesting to see what they searched for to get them here.  In this entry, I will share some of that, plus perhaps try to get some more relevant information to the searcher, should they ever come back.


Search term:  autism and two months old and staring at trees; staring at trees autism; autistic people hate certain textures.


Entry hit:  Sensory Processing and the Autistic Child


This entry is probably the most popular one on this blog; it gets hit all the time, probably because sensory issues are very common with autism and they are hard to understand.


As for the particular searches I am guessing these people were looking for...


Alanna did stare at things for way too long when she was younger and this was a huge red flag for us.  As for a two month old - some people claim children can now be diagnosed or at least considered "at risk" this young, but I don't think very many people can do this.  Looking back, Alanna had signs at two months but they were very subtle.


On textures - yes, this is true.  Many children with autism hate certain textures  in their mouths, on their hands, on their bodies.  Sensory integration is a therapy that can be used to give these kids more or less sensory input as they need it.


Search Term:  ibi ontario 5 year old cutoff
Entry hit:  You Reap What You Sow


If the person searching for this was looking for information on cutoffs, let me say this:  the age cap has been gone for years.  It used to be true that children were discharged from early intervention when they turned six, but that is not true any longer.  The government of Ontario fought this in court (Wynberg v. Ontario), and even won, but then decided to remove the cap.


Search Term:  autism ontario services best place to live
Entry hit:  None


I think this person was looking for where they could live to get the best services.  This depends on what you are looking for.  If you want the largest variety of services, then go to Greater Toronto.  However, most of these require a lot of money.  If you are looking for the shortest waiting list for IBI in Ontario, then move to the Southwest region (London, Chatham, Windsor).


Search Term:  RDI toy ideas
Entry hit:  I Don't Get RDI


Another popular entry.  People are looking for more information on RDI probably because you have to pay money to get more information on RDI.  I am no expert on this topic, but based on what I know from other families, any and all toys can be used with RDI and the activity is based on your regular family routine.  Your RDI consultant would tell you what to do (note:  you have to pay for this consultant).


Search Term:  why is ibi so expensive
Entry hit:  I Really Hope IBI Works


This is a great question. Short answer:  IBI is intensive ABA and is a term almost exclusively used in Ontario.  It's expensive because to do it right, you need 30-40 hours of intervention per week.  Some quick math:


30 hours a week x $25/hour for a therapist x 52 weeks - $39,000
3 hours a week x $75/hour for a senior therapist or BCBA x 52 weeks = $11,700
3 hours a month x $175/hour for a psychologist to supervise x 12 months = $6300


Total cost = about $57,000 per year.  That's why.

Graduating More Instructor Therapists Won't Solve The Crisis

Given the high profile of autism services in Ontario (as a political hot potato), the ministries of Children and Youth Services and Education publish a common newsletter, like this one from Spring 2010.

In it, like so many other documents published by the Ontario government, is a story about how they are increasing the number of graduating Instructor Therapists.  In Ontario, an Instructor Therapist (IT) is the front-line ABA worker.  While I applaud the government on investing in these college (not university) level programs, they do ignore the core problem:  funding.  Unfortunately, like many trained teachers, I fear these graduates will be unemployed or underemployed as parents desperately seeking services cannot afford them.

So yes, they are training staff, but they provide insufficient funds to employ them.  The local autism programs pick up the best graduates, leaving the rest to find work in the direct funding or private sector.

I am happy to know that hopefully more ITs will be available since finding them is still difficult, at least outside Greater Toronto.  But we are one of the lucky families with funding. What about everyone else? 

You Reap What You Sow

Autism Ontario has appointment Dr. Joanne Reitzel to the Autism Ontario Board of Directors.  This has proven controversial to many parents because Dr. Reitzel is the clinical director for a regional autism program in Ontario.  Her primary job revolves around whether or not children continue or get booted from early intensive behavioural intervention services.  I wrote Autism Ontario on this topic, and I was pleasantly surprised with a reply from the chair of the board.  She acknowledged I wasn't happy about the appointment, but carefully explained the process of nominations and election, as well as conflict of interest.

Here is an older article excerpt, source here:

 

As parents across the province rally against wait times for an intensive and effective autism treatment, a Delhi father is demanding answers. David Mels has a five-year-old son, Adam, who is on the severe end of the autism spectrum. He doesn't speak, isn't potty-trained and his gross and fine motor skills are delayed. Adam was denied eligibility to the intensive behavioural intervention (IBI) therapy - a vigorous program funded by the government. The program helps children learn skills using repetition in a one-on-one setting. Mels appealed the decision made by a panel of regional clinical directors, psychologists and doctors at the Hamilton Niagara Regional Autism Intervention Program. The panel decided that Adam's autism was too severe for him to benefit from the therapy. "An independent party upheld their decision," Mels said. "But I want to know why he is ineligible. Show me the clinical and objective proof that says he won't benefit from this therapy. They have yet to show me that." The Autism Intervention Program Guideline, last revised in February 2007, says that intervention services are for children with "autistic disorder or a disorder considered to be towards the more severe end of the spectrum." Dr. Jo-Ann Reitzel, clinical director at the program, said IBI doesn't work with every child. "Every child with autism is unique," she said. "We do a thorough assessment of the child's development, physically and mentally, and identify the appropriate treatment that match the child's needs." If IBI isn't suitable, there are other therapies, although most aren't government funded. Mels believes the government is denying eligibility because it doesn't want wait list to grow. Dr. Joel Hundert, a psychologist with the Behaviour Institute, a private clinic that offers IBI therapy, said many parents feel the same frustration as Mels. "Because eligibility criteria is not objectively stated, it's hard for parents to understand why their children aren't eligible." He said the program is the preferred therapy for kids with autism. "It has hard research and measurable outcomes that proves its success," he said. But he added IBI therapy works best with children with a moderate case of autism. Mels said if he can't get help for his son within the year, he's going to sell everything and move his family to Alberta. "I've been looking into it and it seems they have more accessible funding out there," he said. He has explored private clinics like Hundert's but is unable to afford it without help from the government. "I'd rather move than go bankrupt," he said."

The reason parents are angry is because government assistance for autism in Ontario is focused around a narrow band of kids with moderate-severe autism.  If IBI does not work fast enough, the child is deemed too severe and is discharged.  If the child is too high functioning they are ineligible.  The claim is that "other more appropriate services" will be offered if IBI is not suitable but there's really nothing available, as mentioned by Dr. Reitzel in this excerpt and here in a research announcement.  I don't really get why non-intensive ABA is not offered to those on the very severe end of the spectrum.

So it this makes Dr. Reitzel an easy target.  She is just doing her job, and part of that is minimizing costs and easing the waiting list.  Every child discharged allows another to come off the waiting list, which is always a political hot potato in an election year.

I still feel that given her involvement in the politics of IBI in the province that she is not suitable to sit on the board.  However, there was democratic process, it was followed and she was elected.  I cannot disagree with this process and one can certainly not say Dr. Reitzel is not an expert on ABA therapy for autism.  I do hope she recuses herself from matters involving early intervention policy for Autism Ontario.

Oh Goody, An Assessment

Tomorrow we return to Thames Valley Children's Centre to do a psychological assessment on Alanna.  This is supposed to be our "baseline" assessment.  Our future funding depends on how well Alanna does from this point onwards.  On the one hand I'm excited to see how much she has improved since November last year.  On the other hand, I'm really scared to look at the results... which will be a few weeks in coming.


If Alanna's assessments show improvement, her IBI funding will continue.  If not, she will be cut off and transitioned to school.


The two most likely tests we'll see are the Vineland II Adaptive Behaviour Scales, which measure Alanna's ability to function in the real world, and the Bayley Scales of Infant Development, which measure Alanna's skills and IQ.


Alanna, show them what you know!

UPDATE:  Alanna really did show them what she knew.  The assessment went very well and I think it was a fairly accurate demonstration of her skills.  Wooohoo!

Alanna's Ensemble

We are signing Alanna's contract with Thames Valley Children's Centre tomorrow.  I'm pretty pumped to have Alanna's therapy team together.  Most of the team is existing from private therapy, but we have some new faces.  We have one senior therapist, four instructor therapists, a clinical psychologist and a speech language pathologist.  We can consult with an occupational therapist as needed but aren't in active occupational therapy with Alanna.  This mostly has to do with the fact that OT services are not covered by our health insurance, but also because Alanna's sensory issues, though significant, are not seriously distracting her.  I would like an OT to review an appropriate sensory diet for her though so we can be sure we're giving her the right inputs and fading out distracting inputs.  Alanna also has on-going issues with fine motor skills, feeding and using utensils.

So begins our journey with buttloads of paperwork.  I will learn the requirements tomorrow but I am sure there are lots of rules to follow, some sensical and others nonsensical.  But I'll do whatever paperwork is required if it means we get help!

Relief At Last

Becca received an unexpected phone call today. Then she started to cry.  She busted into my office, breathless.  Her news caused me to go into shock for several minutes.


We have just secured a direct funding spot for Alanna from Thames Valley.  The earliest we expected this news was September.  Those of you who are paying privately for Intensive Behavioural Intervention (IBI) know this is the call you wait for.  It's like being told you just won $50,000 in the lottery because that's how much it costs to pay for IBI annually, done properly.  It will release us from a huge financial burden, assuming she can remain eligible for service until she goes to school.  Presently, Alanna is two and a half, so we hope the earliest they could transition her to school would be in a year and a half.  Hopefully she can remain eligible until she is five or six, unless she does so well she "recovers" (I use that term to mean she no longer tests in the autistic range in standard psychological testing.)


For those of you still on the waiting list - I expect you'll be happy for us, but also ticked that you're still on the list.  We have been very blessed, only waiting nine months.  Most people wait two to three years.  While the regional system in Ontario works pretty well for us, it sucks if you live practically anywhere else, especially in Greater Toronto or in the North.


The irony is, if we'd waited on the public system, Alanna would just be seeing  a developmental paediatrician now.  She wouldn't even have a diagnosis yet.


The system isn't fair.  But today, I can only look to the future with a renewed sense of hope about possibilities.  I'll take that.  I could use some hope.  We all could.

I Really Hope IBI Works

This video below is a new clip from Autism Resolution Ontario, an advocacy group for ABA services in Ontario:



This is the next fear of parents who get publically-funded ABA for their kids - how long will it last?  If the autism provider doesn't think your children is "progressing" according to their criteria (each provider has different criteria - there is currently no standard), your child is ejected into the school system.

Here's what I don't really get:  the claim for ejecting kids from IBI is that "it's not working fast enough."  That is, they do not feel they are "altering the child's trajectory fast enough".  Even if the child is learning, they will remain autistic.  The solution is to replace an intensive program with a non-intensive program - special education at school... where your child will learn slower.  I get the reason, but I wish they would just call a spade a spade.  Instead of saying, "IBI isn't working so let's transition to more appropriate supports", they should say, "IBI is damn expensive and it's not going to substantially improve your child's outcome.  We'd rather spend this money on a kid who may have a much better outcome.  So still he or she is going to learn slowly anyway, let's put them in a learning environment where they can still learn but costs us a lot less money."  Of course, no one is ever going to say that to a parent's face.

I sure hope intensive ABA works for Alanna.  I'd hate to be in the position of these parents in 8-9 years.  So far, so good.

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.

Waiting to Wait

The local provider of autism intervention where I live is the Thames Valley Children's Centre.  I am happy to report that after eight weeks of "waiting to wait", I can report that Alanna qualifies for the autism intervention program.  Now that we're done waiting to be on the waiting list, we can officially be on the waiting list.  How long you ask?  I don't know.  They won't say.  In fact, the latest from Thames Valley is that there is no "waiting list".  The waiting list for service is a constant thorn in the side of the provincial government, so the latest "trick" is to pretend there isn't one.  After all, once accepted, am I not "receiving service" by attending seminars on what autism is and how it is treated?  I beg to differ.  While I appreciate the politics of this issue, a waiting list is a waiting list.  Either your child is receiving ABA treatment or they are not.  Many are not and if you are unlucky enough to come from a lower income family, you are on your own.  While it is a sacrifice for us to pay for Alanna's therapy at least we are capable.  If you are only making $35,000 a year, paying $30,000 a year for therapy isn't going to fly.  This idea of "no waiting list" is smoke and mirrors designed to confuse parents who do not know much about autism and particularly for those parents who "rely on the system" to take care of their children.  If autism intervention providers in Ontario can convince people that they really are receiving service, then there is no political problem for the current government.


To be fair, the "behaviour coach" is probably invaluable to many parents who have not started an ABA program themselves.  We will certainly take advantage of this service, but it is not the same as IBI, and that is where the gains are made.  Early intervention should be a priority, yet children waste years of potential gains because they are forced to wait.  It's sad.  They have such potential if we would only invest in them.