Thursday, July 02, 2009

Autistic Children Still Languish on Ontario Wait Lists

In Auton and Wynberg Canadian courts ruled, in essence, that autistic children do not have a substantive Constitutional right to effective treatment or education. It is up to government to decide whether autistic children in Canada will have access to evidence based effective treatment for their autism disorders or to a real education.

In Ontario the McGuinty government has demonstrated what happens when treatment and education are left to the whims of government. Five years after the Supreme Court of Canada decision in Auton many autistic children in Ontario still languish on waiting lists for IBI(ABA) treatment. Schools in Ontario are still toying with pilot programs and do not provide ABA based education for most autistic children.

The story of autistic children in Ontario is one that has been told throughout the ages - the weak, the vulnerable, and their families, must fend for themselves.




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5 comments:

farmwifetwo said...

Actually, I need to write her and tell her that the NDP is kissing up to the special interest groups once more and it's time we got out of the dark ages and actually allowed for the purchase of interventions that didn't involve unending hours of "Pavlov's Dog training" by a bunch of ECE (daycare teachers).

ABA is NOT regulated in this province. ABA is different depending on what service provider offers it. Some are closer to Floortime than true ABA. ABA does not allow for the children to be seen by OT's or SLP's and have them part of the program. Yet, these service providers are manadory to allow a child to be part of mainstream society. ABA is a TOOL.... Not a THERAPY. A THERAPY that we're still waiting for Lovaas to prove actually works.

Don't hand me the links... one thing I've learned is that anyone, anywhere can post links about anything and claim it's true in "autism-land".

Also... according to the math, if there's 1/150 in Ontario with Autism... then assuming 2,000,000 children... that's 13,333 children with autism. Only 1,300 are on the list... that's a measly 10%... Where are the rest????

She's on my "to-do's"... but I need to print a couple more copies of my "epic" and get them bound first.

S.

farmwifetwo said...

And PPM 140 is in use in the school's. ABA is not 1:1 unending rote trials. ABA is breaking down a task into smaller components and teaching someone how to do something.

Seems to me that's how we learn??

PPM 140 is there to help with task learning and behaviour issues. These are noted in the IEP and worked on, and RECORDED, by those teaching the child. There has to be PROOF that the skills have been taught. They also know I will double check said "PROOF" at home... so they make certain it's been done.

PPM 140 has allowed for the purchase of sensory and communication related materials for both children to deal with those issues in the mainstream classroom.

ABA has no use for Sensory/nor speech therapy.. in their opinion it does not exist and if you ignore it, it will go away or can be "modified".

PPM 140 allows for teaching children using Token style programs that allow for the learning of behaviour and social skills in the classroom.

PPM 140 allows for the usage of social stories and other appriate learning tools.

PPM 140 does not shovel food in a child's mouth nor take away their toys after 10 seconds of compliance and around and around... the rote learning goes again.

PPM 140 allows for a child to be taught in the regular classroom or if necessary a segregated one.

Children are not "languishing".. that's the lies spewed by those that have no idea what is actually out there for their children. For those that have agenda's - like yourself - and don't really want to understand what's available. For those that can't be bothered to actually spend the required hours to get those services that are available.

I have... and my children are thriving.... as for those other parents... not my problem. It's not up to the system to do it for you... it's up to YOU do do it for your children.

S.

Barry Hudson said...

Farmwifetwo,

I am here in Ontario and our son is on month number 27 of the wait list for funding. We have self funded his ABA for the past two years (actually before the official diagnosis) and his gains have been incredible. I agree that the quality of ABA delivery is key and for effectiveness a generalization program is critical to prevent, as you say, Palov's reality. We supplement ABA with both OT and SLP and when we get funded our regional provider has said that OT and SLP can continue. In fact our regional provider has “strongly recommended” that OT and SLP continue while ABA/IBI is being done. You may be fortunate to have a school that is very diligent with PPM140 but this is not the case throughout the province (close to 20% of the Human Rights tribunal cases today are about the lack of diligent enforcement of PPM140 – it is a great tool but few school boards have truly embraced it. If a school board is failing then the matter has to go to the courts for enforcement since, in my own experience, boards are very reluctant to move beyond their own inertia).

In terms of the math your calculations are applying the 1 in 150 to all children but this incidence rate is (1 in 150) has been in general diascussion since 2006 where there were 135,753 births on Ontario (see StatsCan) so at 150 per this is about 905 NEW cases, rolling the math forward and it comes pretty close the 1 in 150.

Stephanie Lynn Keil said...

Someone keeps trying to tell me that children in Canada with autism are not being starved of treatment because of the Auton decision. I keep trying to tell this person that there are children in Canada who are NOT receiving treatment because ABA is not "medically necessary" but this person keeps trying to convince me otherwise, and is failing.

This person magically thinks that all autistic children magically get treatment since this person's own autistic child is okay.

But, not all parents can afford treatment and/or spend hours finding treatments. If ABA is done correctly it works quite well.

I am being starved of treatment for the same reasons.

Christine said...

I do not know what services you are talking about farmwifetwo. I know how to advocate and navigate my way through the system. What I can not do is shorten wait lists. Wait lists
are a huge problem in ON. Why does it take over a year to go to the technology access clinic, have a tellers visual acuity test and an even longer time to take your child to get a diagnosis? I do agree some parents want the system to do it for them. In my opinion most parents did not have knowledge of Autism when their child was first diagnosed. Children are then put on wait lists for different services. How can we as parents teach our children without the knowledge and assistance of said providers without having to wait? I have read uncountable books on Autism and treatments taken various courses but this did not help my child from day one. What would have helped my child is access to services without wait lists that I could have observed and implemented right away. Can you tell me you knew what interventions to do for your child on the first day of diagnosis without help from service providers? In my opinion if you want to start early intervention in this province you do so but with huge monetary sacrifice. Private speech and OT in my area is $120.00/hour. If your child is not yet in school CCAC speech and OT is not available. You can however access consultative speech and OT but again waiting lists. I for one am proud the NDP is fighting for our children. I believe what Barry Hudson has said is true. If 20% of human rights cases are about PPM 140 what do you think of Tim Hudak the new head of the Conservative party wanting to change the human rights code? The Conservatives have fought against medically necessary autism treatment and pushed the issue back on the province. I for one am non partisan on Autism issues but commend the NDP for taking such steps to address the insurmountable wait lists in ON. Can you please tell me how this is the dark ages?