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.

Great Entertainment, Poor Reality

The new drama Touch starring Kiefer Sutherland is about a boy who, although autistic, has the ability to manipulate numbers, see patterns, and appears to be able to predict the future.

This makes for great entertainment but exacerbates the stereotypes of autism and autism reality.  At least the boy is non-verbal - this is a rarity in depiction of autism although it will be interesting to see how they get him to communicate.

When we first found out A has autism, we ourselves thought this meant she would have an extraordinary gift in some area.  This is called savantism, and it is actually very rare.  


Jacob, the protagonist, is actually a prodigious savant.  The different between regular savants and prodigious savants is that prodigious savants have a skill that would be considered unusually amazing even in a person without developmental disability.  This condition is even rarer (in the above article, 50 people in the whole world).


Good entertainment, but bad for educating others about autism reality.  I don't suppose people really want to watch Fly Away anyway.  Too bad - that is much closer to reality.

 

Much Ado About the DSM-5

There has been much discussion lately, both in the blog-sphere and in some on-line news feeds about the upcoming changes to the Diagnostic and Statistical Manual Revision 5 (DSM5).  This guide, produced by the American Psychological Association, is used to diagnose disorders that are primarily behavioural, or that have no known cause with specific diagnostic tests.  There is no known blood test for depression, for example - you have it if you exhibit certain behaviours in a specific way.


Autism is defined in the DSM5, and the definition is changing.  Currently, Autism Spectrum Disorder refers to any one of three conditions:  "classic" autism, PDD-NOS, and Asperger's Syndrome.  A good definition of autism and PDD-NOS is here and it gives good examples for the uninitiated.


With Asperger's Syndrome, cognitive and language development, as well as daily living skills, are unimpaired.  With Asperger's Syndrome, the primary deficit is language as it is used for social purposes.  This includes social spoken language and non-verbal cues.  Asperger's Syndrome also includes repetitive behaviours but these tend more toward intensive interests or routines with no function rather than stereotypies (it is more likely you will see a child obsessed with dinosaurs and needs to go home a certain way over hand flapping, for example).


This triad of disorders is well established and most autism services are based on these diagnoses.  The DSM5 purports to eliminate these three disorders and replace it with a single diagnosis:   Autism Spectrum Disorder.


This new label has many concerned because it may cause several people who presently have autism to fall off the spectrum into a new diagnostic category.  This isn't a bad thing in itself, except that once identified with a condition, it is difficult to let that go when nothing has changed except the DSM manual.  Further, and more importantly, legislation is notoriously slow in catching up with realities and services will be denied to people who previously would be eligible.


Concern has come in the media not surprisingly from people concerned with the higher functioning end of the spectrum (Asperger's and PDD-NOS).  These individuals may revert to Social Communication Disorder if they lack many repetitive behaviours, whereas before it would have been autism.


Concern has also come from the more silent side of the spectrum, people who have autistic disorder but also intellectual disability, which comprises a sizable portion of the people with full blown autism.  Because of the phrase that ASD "cannot be accounted for by general developmental delays", there is concern people with autistic disorder will revert to Intellectual Development Disorder.


The authors of the DSM-5 believe these changes will enhance the specificity of the diagnosis.  I don't disagree, but concern is primarily around (a) identification with a disorder and (b) services associated with a disorder.


One might think the easiest way to solve this problem is just to extend current autism services to those now qualifying for social communication disorder (SCD) or intellectual development disorder (IDD).  The problem with this, of course, is that by re-classifying autism and spreading existing ASD over these broader categories is that there will be many people with SCD and IDD who were never diagnosed with autism and legislators will be loath to increase costs by increasing services for now what is a much larger group of people.  SCD is a new diagnosis and appears to be designed to catch people who fall out of ASD so at least they have "some label".


This will put enormous pressure on clinicians to give an ASD diagnosis when SCD or IDD is warranted, especially when an ASD diagnosis was indicated on the DSM-IV.  In short, the muddy waters will be worse than before.


Personally I feel the better approach would have been to combine autistic disorder with PDD-NOS as "Autism" and leave Asperger's Syndrome alone, combining the two under "Autism Spectrum Disorder".  It is grossly unfair to millions of people who presently have autism to be re-classified as IDD alone.  Similarly, I sympathesize with people who have supports with Asperger's Syndrome but now do not with SCD.


I think A will remain diagnostically ASD, but now that language impairment is removed from the autism criteria as well, she would have co-morbid Language Impairment as defined by the DSM-5.


Watch for a little chaos in 2013.  

What is your life worth?

I am generally not a fan of re-printing material verbatim from other locations on the web, or re-hashing a discussion to which I may simply give a link.  But in this case, I will make an exception because it is so important it deserves an exception.

Amelia is a little girl with Wolf-Hirsch-horn syndrome.  You can read her story here.

The short version of her story is that she needs a kidney transplant, and this surgery is potentially dangerous due to potential brain damage.  The problem is that the attending physician does not believe Amelia should have the surgery because she is "mentally retarded".  I am not sure of all of the governmental rules of organ donation in the United States but it appears your IQ and adaptive functioning are enough to condemn you to death if you need a new organ.

Keep in mind that by definition 2% of the population is "mentally retarded" because this diagnosis is based on cognitive ability combined with adaptive behaviour (ability to communicate, socialize, and take care of one's self) relative to the rest of the population.  By definition, 2% of the population is always mentally retarded.  We can get collectively smarter or better at being independent, or collectively less smart and less independent, and 2% of us will still be "mentally retarded".  In other words, this diagnosis is not criterion based (if can't do X, then they are "mentally retarded")!


The doctor's response was bad enough, but the social worker's response was even more appalling.  She was in the family interview to try to convince the family to give up, because hey, Amelia won't go far in life anyway, and when she needs yet another kidney in 10 years, Amelia's parents may not even be around to take care of her.


Really?  That's the value we put on a life?  What a slippery slope we have started.  Mentally retarded today, perhaps tomorrow the elderly, or the low class factory worker.  In fact, why not simply ration all health care based on our usefulness to society and our potential measure of quality of life?  It's well known in Canada, for example, that people aged 65 years or higher cost double the annual health bill of people under 65, and people 75 and older double the 65-year old people.  Easy way to save money - if you are 65 or older, pay your own way or suffer because hey, you might need more surgery later and what are you going to do with your life anyway?  You're 65!


If anyone spouted off this nonsense they would be laughed off or lynched with extreme prejudice.  But apparently my logic does not apply to "mentally retarded" people at the Children's Hospital of Philadelphia.

New beginnings

“Every day is a new beginning. Treat it that way. Stay away from what might have been, and look at what can be.”

"Today's decisions are tomorrow's realities."
- Marsha Petri Sue

As we enter 2012, I am trying to keep Marsha's words in mind.  Our long-time senior therapist has resigned to pursue a career at the local regional provider and we are adjusting to the change.

One of the traps I am trying to avoid is "have we done enough?"  Years from now, like many parents, I will look back and ask if we did enough intervention with A to try to ameliorate her autism.  The harder we work now, the easier later will become.

Parents of a newly diagnosed child desperately seek a way to help their child "recover" from autism, a loaded phrase, but essentially a phrase meaning their child achieves average functioning in most areas.  The success of many children is still a minority - very few children meet this milestone.  I am learning to focus less on recovery as a goal and instead look at how far we have come, and how far A has come relative to most others with autism.


Perhaps my biggest disappointment is A's inability to develop functional spoken language, despite trying everything.  She has some words, but her articulation is very unclear.  She is able to communicate well with her iPad and for this I am very thankful, but it is still not the same.  In fact, I have had people comment that if not for the iPad they might have trouble detecting her autism as easily.


Looking back, I have to be content that we did everything "right", and the present reality is best outcome for us...

• She was diagnosed at 22 months
• ABA began at 22 months
• Funded EIBI began at 30 months
• Tried PROMPT, intensive speech therapy for hours

So as we begin a new year, I'm trying to look forward with this in mind - thinking about what might have been is useless.  We have to look to the future and measure A's future progress against her present ability instead of grasping at recovery.

Sometimes Exclusion Is the Most Inclusive Policy

The future that we hold in trust for our own children will be shaped by our fairness to other people's children.
     - Marian Wright Edelman

As we get closer to Alanna's inevitable transition from IBI into the school system (a transition I anticipate with much dread), I am forced to contemplate the whole idea of inclusion and what it really means.

Most educators seem to press for "inclusion" - that is, for a child with special needs to be part of a regular classroom with their peers, with support, if necessary.  Our local school board (similar to American school districts) even has this as a policy statement:

The Thames Valley District School Board believes most exceptional children should have their needs met, using a variety of strategies, techniques and resource support in regular classes in their home school.

I don't grasp this philosophy at all.  Placement should be dictated by the needs of the student.  For children with autism, it should be based on the child's ability to tolerate a regular classroom, how self-directed they are, their adaptive behaviour level, and most important, their ability to do grade level work or benefit from social interaction with children close to their own age.

Some educators will simply say that grade level can have modified expectations and then a child can remain in a regular class.  Some modifications might be appropriate, but not many.  Take for example a class of grade one students who are learning about addition.  If a child is in that class and does not understand how to count and the meaning of "more", "less", or "fewer", the whole concept of "modification" becomes meaningless.  You can't teach addition without a basic mathematical foundation, and if you can't count, you'll find addition pretty hard.

Is the modification to teach the student to count while the rest of the class is  learning how to add?  If so, who is teaching the student how to count?  If that is an EA, then why even bother have the student in the class if they are being taught different curriculum?  Worse, if the teacher is expected to do this themselves, what is the child doing when the teacher is working with the majority of the class?  The child is likely to become bored because the work is too hard and then we might see behaviours occurring. 

On the social level, I can see great benefit from a child with autism being with typical peers, but only if they are "close enough" socially to benefit.  A six year old child who still can't play co-operatively is going to struggle... the typical children will play in a much more complex manner and probably use language that is too difficult for a child at this developmental level to follow or reciprocate.

This all seems like common sense to me.  If a child is doing something different than the rest of the class then why bother put them in a regular class?  Withdraw them to a proper segregated class with a very small teacher to student ratio where they can get individualized instruction with "inclusion" where appropriate (recess, gym, other activities where skill levels are appropriate).  This will benefit the children in the mainstream class as well - they do not have to "slow down" for the special needs child, or have to tolerate behaviour that is being generated by frustration on the part of that child trying to learn.

The irony is that inclusion is a smokescreen for "ways to save money".  It is cheaper to put a child in a regular class with as minimal EA support as the school can get away with versus a fully staffed special education class.

Sometimes exclusion is the fair and right thing for everyone.  Pretending "inclusion" is fair for every child is nonsense.