Big Tent Meeting - Pre-Meeting Survey
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The survey questions below are designed to help us find our common ground as autism advocates. We’d like as many parents, professionals and advocates as possible to tell us what they think the autism community should be fighting for. Some of the statements in the survey are original ideas from individual advocates. Some are statements that reflect the position of a particular organization. Some are mix of the two. Still others are based on recent stories covered in the media. Here is a list of sources for the survey questions:

• The Ontario Association for Behaviour Analysis
• Autism Ontario
• Autism Resolution Ontario
• Individualized Funding Coalition for Ontario
• The Ontario Autism Coalition
• The Special Services at Home Coalition
• The Toronto Star
• The Ontario Ombudsman


However, since we are working towards consensus, we’ve blurred the statements so that you can’t easily tell which statement comes from which organization. That is deliberate on our part. We don’t want anyone to reject an idea simply because of the source. We also have no desire to know which person agrees with which statement. All results will be anonymous. We’ve designed the survey so that not even we will know who answered or how they answered.

What will happen to the results, you ask? Well…that depends on a number of factors. At the very least, we will announce the interim results at the meeting on August 8th. We’ll use those results to focus our work during the first session. We’ll ask participants to help prioritize the results as well. Which goals should we be working towards in the short term? Which ones are long-term goals?

From there, we may try to get people to step forward and agree to publicly support the goals. After that? Well, why not a joint statement published as a full-page ad in The Toronto Star? That might get the Premier’s attention!

Further down the road, we plan to leave the survey up for several weeks after the “Big Tent” meeting to allow more people to respond. Then we’ll call a press conference to discuss the results, and to ask for a meeting with Ministers Matthews, Wynne, and Meilleur to present the results to the government.

So…grab a coffee, tea or beverage or your choice and take the survey. Feel free to send us an e-mail to let us know your thoughts. Tell your friends to complete the survey, too. And THANK YOU. Thanks for taking the time to do this, and for your support for this ambitious project.

Please note: The early bird deadline for completing the survey is Thursday, August 6th, 2009.

1. Ontario should adopt mandatory early screening for autism as per the recommendations of the American Academy of Pediatrics: once at 18 months, and once at 24 months.
2. There should be no delays, and no waitlists for an initial diagnosis of autism.
3. A diagnosis of autism should be the only requirement for eligibility for the Autism Intervention Program. (AIP)
4. Children should not be deemed ineligible for IBI because they are “too severe” or “too high functioning.”
5. Once a child has been identified as possibly having a developmental delay, early intervention services should start, even as the child waits for a formal diagnosis.
6. Once a child has been diagnosed with ASD, a case manager should be assigned who can assist the parent(s) with accessing services, completing paperwork and developing a treatment plan. Ideally, that same case manager would follow the child through their early years, school years and into adulthood.
7. The administrators and providers of ABA funding from the Ministry of Children & Youth Services should be separated to allow for better, more efficient, fairer and more transparent administration and delivery of services.
8. The Government of Ontario should create one agency, independent of all organizations delivering therapy under the AIP, to administer the program for the entire province.
9. The Government of Ontario should develop a formal regulatory framework & credentialing system for IBI therapists.
10. The Government of Ontario should increase its investments towards a proper training and recruitment system for IBI therapists, supervising therapists and clinical supervisors, to ensure accountability and capacity within the system.
11. The Ontario government should hire BCBAs for the exclusive purpose of mentoring others to achieve this designation.
12. No child should have to wait more than four months from the time of diagnosis to begin IBI.
13. Parents must be able to choose freely between DFO and DSO service.
14. Funding for DFO and DSO must be equal—anything paid for in one model of service must be paid for in the other.
15. Private DFO providers should be able to bill the AIP directly. Parents shouldn’t have to do all the paperwork, and providers should not have to wait to be paid for their work.
16. The decision to discharge a child from IBI should be a clinical decision only, based on the best interests of the child.
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