This Could Be You

Colleen Cunningham, a mother in Sarnia, is facing my greatest fear.  Her son Nathan, now 21, has cerebral palsy and has severe disability.  He requires 24 hour care.  You can read more about her story here.

Based on what I can glean from this article, Colleen is alone, aging, and her own health is failing.  Her son will never be independent.  But there is no room for him in a group home.  Colleen's desperate solution is to abandon him in respite care, forcing the government to intervene in his care.

My heart aches for this mother.  No one wants to abandon their children, and the irony is that Nathan could probably remain at home if Mom had some supports, but there is "no money" in agency budgets.  Other support services in Ontario, such as "Special Services at Home", have been frozen since 2007 or earlier.  You can apply for such services and be awarded money, but you are wait listed.  As families give up their funding, the funding is clawed back by the government.  Why we are paying bureaucrats to collect names and determine pretend grant amounts while people with disabilities get no support is beyond me.

Do you have children with disabilities?  This could be you someday.

Children with severe autism are transitioned into a school system that is not designed for their needs, and inclusion zealots are happy we do this.  Inclusion is cheaper and better for the child, according to them.

Here is the harsh reality for many children with severe autism.  While they are included in classrooms, they may, if they are lucky, meet some children in schools who are willing to be their "friends".  I don't discount how happy this will make some parents, including me.  But at age 21, those elementary school friends are long gone and are probably replaced by support workers.  Inclusion is a happy place for the time, but that friendship is temporary and does not help the child gain long-term skills needed for independent living.  My own daughter A has friends close to her age, but it is not an even relationship.  It takes a special person to be friends with A, and as A ages and becomes developmentally further behind (at least socially), these special people will become harder to find.

School is a place for academic learning and socialization.  Yet very few schools have any formal teaching for socialization because the vast majority of children come to school with basic skills and learn the ropes as they go.  For many kids with autism, academic skills beyond literacy, writing and numeracy are not very important.  Life skills, or adaptive skills, are much more important.  I would rather spend a day teaching A how to use a public washroom then say teaching her about native Canadian villages.  But schools aren't designed to teach kids about using public washrooms, because most children don't need special training to learn this skill.

Parents, ask yourselves - when school is done at 21, are you comfortable knowing your child learned all they could to be as independent as possible?  If not, in my opinion, time was wasted.  Because in the end, the responsibility for the child falls back to you.  There is no schooling after age 21 in most jurisdictions, and in Ontario at least, getting into a group home is no easy task.

I admire parents who say they "accept the autism" and "just enjoy their children".  I think sometimes parents need to let kids be kids, disability or not.  But we also have a duty to our children, and for our own sanity, to prepare our children to be independent.  To me, that means making the most of every opportunity, and it means the public school system is no place for A.

Early intervention is touted as a way to save money by "teaching children how to learn" and allowing them to achieve "average functioning".  Yet very few children do so.  In Ontario's IBI program, the proportion of children meeting average functioning is only 11% of discharges.  There are also no studies indicating if children in this program retain their level of functioning after they enter the school system.  In other words, IBI gets them to a certain level of functioning, but we don't know if they can maintain that level once the intensive supports are removed in a school setting.

I don't want Colleen's story to be mine in 16 or so years from now.  Do you?

Inclusion is no solution - children need life skill teaching from discharge.  It's too bad Ontario's public education model will never put the individual's needs beyond that of its employees.  Shame on us for letting it happen.

Toronto Board of Education and Ontario's Double Standard

The Toronto District School Board has decided to follow thorough on its plans to eliminate 87% of Education Assistants.  Over 400 education assistants will be laid off, and over 400 early childhood educators (ECEs) will be hired to replace them.  ECEs are required by Ontario law to deliver the new full-day kindergarten program.

Don't feel too bad for the educational assistants though.  The government has offered to hire them as ECEs if they will complete their ECE training at a local college within two years.  

I have posted before on how unfair this is to special needs students.  Don't be fooled - the lack of assistance for students will result in more students being sent home or attending for partial school days only.  Parents will have to fight more than ever for services that should be provided to them freely.

If that is not unfair enough, consider the double standard the government applies to early childhood education and special education.  Apparently, to work with four and five year old children in an educational setting, you need a one or two year diploma to qualify you to deliver this education.

Colleges in Ontario have offered a good program in Autism and Behavioural Science for years now, yet no educational staff who work with children with autism require this diploma.  Tell me why an untrained educational assistant is qualified to work with children with autism, yet that same EA requires a year or more of training to work with young, typical children?

There is no choice for children with autism in Ontario.  Either the child is home-schooled (partially or full-time), the parents are on the hook for the full cost of their education, or parents must flee the jurisdiction.  Don't worry though, little Jonny is getting a fully trained early childhood educator and can attend school all day.  It'll save his parents a bundle on child care.  What's not to like about that?  

Latest Toronto School Board Plan Proves No Accountability in Special Education

The Toronto District School Board is considering a proposal to balance its budget by reducing educational assistants by 87% (reducing 493.5 full time equivalent positions to just 63.5 positions).  The stated reasoning is to hire 400 early childhood educators to fulfill the board's requirements in implementing full-day learning for four and five year old students.

Special education funding is very seriously misused in Ontario.  Although money is allocated for special education, it is given to each school board to do with as it pleases (a fact stated by an education official in the above article:

A spokesman for the education ministry, Grahame Rivers, said funding for the TDSB has increased since 2003.

“Ultimately, it is the TDSB’s decision how to best allocate resources in Toronto schools,” he said.

 Funding is increasing, but funding does not follow each student.  It is allocated based on the needs of the board.  In this way, "special education funding" is a joke - there is no accountability in the way the funds are spent.  Why even bother having distinct funding streams if the boards can spend any way they please?


How is it fair that hundreds of students with special needs are having support staff taken away so that hundreds of four and five year old children have a longer school day?  Schools will do what they can, but the result of this change will result in most students not attending school or attending with reduced hours.  Luckily A is not yet in school, but if she were (and she is old enough to go into early years education) there is no way she could attend without support and actually learn anything.


Some of you may disagree with me on this, but I don't even believe full-day early learning is needed.  I believe it is a back-door way of getting free childcare in Ontario so that parents get a free ride.


Interestingly, a study in the United States on their Head Start program (which includes pre-school education, nutrition and other services for low income families) states that:

The benefits of access to Head Start at age four are largely absent by 1st grade for the program population as a whole.

Obviously we can't compare this directly to Ontario's program since in the United States kindergarten is not full-time.  However, early learning at the four-year old level does not appear (in this study) to influence academic trajectory.

Ironically, parents who try to assist the schools by trying to provide staff of their own are re-buffed and educational assistants will grieve any attempt to put in staff because that person is taking the job away from a unionized EA.  A parent cannot put their own staff in place to help their child, but they also cannot rely on the school to do so either, especially with so few EAs available (now just 64 education assistants for a city of almost three million people).


So for parents of typical children who are four and five:

• They pay taxes
• Both parents can work with free child-care, a.k.a. full day learning
• Extra income = more opportunities
• And if you're in Toronto... special academy schools for kids in music and leadership

For parent of children with special needs:

• They pay taxes
• Their children must attend fewer hours or not at all
• One parent must remain home to home-school or be around when the school ejects the student, or must work full-time to pay for private education
• Parents cannot pay for an EA themselves even if they have the means due to union grievances
• The dollars spent per child for regular children are not refunded to them - they pay the same tax for less service

In short, if you are a regular kid, the system works.  If you're not, you're screwed.

Fairness is not when everyone gets the same thing.  It's when everyone gets what they need to be successful.  This isn't fairness.  It's time for special education funding to follow the children they are to fund.

I feel sorry for the parents of kids in Toronto.

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?  

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.

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? 

Educational Justice

Recently I was made aware of a judicial case where a mother, in Ontario, was trying to place her child in a regular classroom with support.  This had been the scenario since kindergarten, and the student was now moving into grade four.

The special education committee ruled he should be placed in a special education classroom and not in a regular classroom with supports.  The parents appealed this ruling to a court, because they felt this was unfair.  Interestingly, they brought a local expert to argue that the ABA supports the school was offering was inadequate.  However, the tribunal could not force the school board to offer better supports; they could only rule on whether or not the child's placement was adequate.

Many parents are outraged by this.  These kinds of cases scare me because I see our future in them.

My opinion:

Is the ABA support offered by the school sufficient?

Probably not.  Most parents I have spoken to in the Toronto area have told me the ABA implementation in schools is woefully inadequate and many children are not learning in these classes as they were in IBI.

Is the placement valid?

I may get flamed for this, but it would seem that it is more appropriate, if the child is going to remain in school, to go to special education.  If his behaviours are very disruptive to the other students, there is no real choice.  We cannot expect a child who is screaming, stimming, or otherwise engaging in disruptive behaviour to be with a mainstream class because those students will be so distracted they may not learn well.  Additionally, if the student is functioning at a four or five year old level, there is no way they are learning the same curriculum as a mainstreamed grade four class.  It would seem the decision made is a good one.

I think the real underlying complaint in this judicial review is the quality of ABA programming in Ontario schools.  The complaint is that, despite an order from the Ministry of Education - PPM 140 - schools are still not prepared for students on the autism spectrum.  It is truly unfortunate and infuriating that there are private schools that do offer the support needed - for $50,000 a year.  After forking out this amount yearly for private IBI during the preschool years, who has the money left to afford such luxuries?

If school boards cannot provide appropriate supports, then give parents choice in education and issue vouchers like Alberta.  Let us choose the supports for our own children.

Alas, I fear the unions will never let this happen.  Education for all, and better education for the wealthy.  But we don't have two tier education or health, right?

Research Empowers

I think there are two types of autism families in this world.  Families who help others but mainly focus on their own journey, and those families who focus on their own journey, but remain concerned about those people behind them (and to a lesser extent, those ahead of them).

I spend considerable amounts of time looking at autism research (in journals and elsewhere), and I like to support autism research when I can, because only by researching can we unlock the autism puzzle.  I am particularly passionate about early diagnosis, something which is difficult and expensive in Ontario.  There is a research study being conducted at the University of Windsor on early diagnosis.  If you live in Ontario and have a child six or under, please consider participating.  It will help researchers understand barriers to timely diagnosis.  This will not help you personally if you have a diagnosis already, but think of the families coming after you - can you spare a few minutes to try to help them avoid the heartache you did?

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.

Benchmark Independent Evaluation is not the Issue

Andrea Horwath, leader of Ontario's New Democratic Party (NDP) has issued a press release on the validity of the independent review of the IBI Benchmarks by Dr. Louise LaRose.  She was paid $118,000 for this review and it was "sole sourced" - or awarded without a competitive RFP process.

Ms. Horwath is claiming the review needs to be re-done to be completely unbiased.  Personally I think Dr. LaRose was probably professionally able to do this review in an unbiased manner, and I think the real issue is whether or not the benchmarks make any sense.

The nine regional autism providers in Ontario all have their own "benchmark" criteria for continuing in IBI (intensive ABA therapy), excluding the one they started as RAPON several years ago.  ErinOak Kids has a continuation criteria document that looks a lot like the benchmarks but they do not call it that.  In fact, at TVCC, staff are forbidden from discussing the benchmarks, period.

The benchmarks have been out for at least two years and there are no signs they are being implemented forcibly by the MCYS.  I think the hope is that the benchmarks die quietly in bureaucracy while giving the autism programs free reign in deciding when discharge should occur.  All of the recent court cases have not been won by the complaining parent, so legally they know the challenges will die slowly but surely as the precedent is set.

My hat's off to Ms. Horwath for keeping the government's feet to the fire on autism funding, even if I think she is asking the wrong question.  I might even vote NDP - for the first time ever - in the next election.

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.

Could it be Autism?

One of the things that continues to astound us is how young everyone tells us Alanna is to be in intensive intervention.  She's currently 28 months, about 2 1/3 years old.  She started at about 23 months, just before she turned 2 years old.  In Ontario's Autism Intervention Program, Alanna is currently the youngest child on the waiting list for subsidized services in my city, and there is only one younger in the region.

Why is this?  It's because diagnosis is long and painful.  Autism is commonly not detected by medical professionals in a timely fashion, and even when it is, the referral process takes too long in Ontario.  If we had waited for the diagnosis, we would still be waiting just to confirm Alanna had autism.  Some professionals won't diagnose children as young as 18 months, even though it can be done, especially for children who are moderate or severe.

You can obtain a diagnosis privately.  It's not cheap (around $2000), but it will save you at least a year of waiting.  If you cannot afford private ABA therapy, consider investing in a private diagnosis.  You may even be able to find a private psychologist who will give you a break if you provide proof you've tried everything you can to raise funds for the diagnosis.  You can also write off this cost on income taxes.  If you have health insurance at work, they will also probably cover at least some of this cost.

For Ontario parents:

If you are a parent and suspect your child may have autism, do not wait.  If you wait for the public system your child may be school age before they get intervention, and will fall farther and farther behind.  Meanwhile, you will be left to deal with your child's behaviour with little support in the meantime.  Find a way to get your diagnosis as quickly as possible.  Make it a priority; you will be glad you made the sacrifice later.  If you need help finding a psychologist who can help, let me know, I will do my best to help you find one to get you the diagnosis you need to start accessing services.

Here's to Paul Ceretti

This is Delanie and Mackenzie Ceretti.  Their father's name is Paul.  Both children are severely autistic.  Unfortunately for Delanie, her progression in Ontario's Autism Intervention Program is not sufficient and her funding is being cut to allow another child to take her place.  Paul Ceretti did not let this go and took the Ontario government to court to have a judge review the evidence to cease her therapy.  The judge agreed with the ministry and Delanie's funding will now cease.  Delanie will transition to school supports; Mackenzie will continue to receive ABA therapy to catch her up with her peers.


I am completely torn on this decision.  On the one hand, intensive ABA (known as IBI in Ontario) is designed to be effective for two to three years, and not every child responds to it, although almost all children will learn new skills using it.  One could make the argument that there are only "so many dollars" in the budget and the government needs to use those dollars the best way it can.  However, I don't know what progress Delanie has made or on what basis they cut her off.  Perhaps she was making great progress.  However I do agree there is immense pressure to get children out of IBI to keep the waiting lists from growing even longer than they are.


Now, on the other hand, in our socialized medicare system, how many dollars are spent daily on patients who are terminally ill or unlikely to recover?  In our system, we spend dollars until the patient is better or dead.  One could argue the way to stop our ballooning health care budget from continuing to grow is to make better health care dollar decisions.  But it would be an uproar and a media frenzy if a hospital ever told a patient they were discontinuing treatment because they were not responding "well enough" to the treatment.  So in medicare, we keep shoveling money into the system, but for treatment of autism, we maintain our budget.  Let's see how long that lasts in the next generation as autism continues to become more common.


Here's to Paul Ceretti.  You are a brave man and a fighter.  Let's hope I can fight as hard as you can for my own daughter.  I hope I'm up to the challenge.