Wednesday, January 13, 2010

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.


  1. It is not about money. School boards receive about 60 thousand dollars a year to accommodate every severely disabled kid, but the money is not assigned to individual children. For that money autistic kids get babysitting for ten months at school. If the money was allowed to be directed most efficiently to buy IBI therapy from private provider (government run providers are 3 to 5 times more costly) we would have much more children serviced , functioning higher as kids and as adults. That would mean millions of dollars saved on cost of care for many autistic adults for many decades of their adult life.

  2. Maryna, I couldn't agree more with you. But the teacher's unions will never allow us to have choice because they want that money to pay themselves for the babysitting. Similarly, the regional autism programs want the money to pay their employees who could be more cheaply hired and trained privately. Direct funding options for autism therapy and education make sense, but in Ontario, the public and Catholic boards have a monopoly.

  3. Thank you for the kind words. I have a good update on Delanie`s situation. I have recruited several volunteers from McMaster University and they are being trained to give Delanie her IBI again. She should be back in session within a week. She will not have to answer to any benchmarks or regional idiots now and will be free to learn at her own pace. I am looking into possibly setting something up to help other families faced with these cuts create the same model that is working for Delanie. I could not even begin to express how happy it would make me to know that other children are recieving IBI because of our hard work. I know that we can get there if we work together. If there is anyone who would like to help form this new organization, please contact me through my email Please feel free to pass this message on to any one.

    Paul Ceretti

  4. Hi Paul my names Spencer Morris and l also have a child with autism who was also not given a fair shot with the IBI program at Chedoke Hospital we were told 8 months into it that my son was going to be fazed out, this after waiting two and a half years for my son Sebastian to get in and start. I'm am still on waiting lists for other service's in the Hamilton area and yet nothing and its going on three years. It took seven months of screaming bloody murder to the school board to have my son transferred to a school better suited to his needs. I'm a single dad trying to raise my son Sebastian and could use any advise you may have on what steps l can take or maybe point me in the right direction to some of the services you have managed to find....

    Thank you

    From a parent that understands
    Spencer Morris