ontarioautismcoalition.com

[Guest guest]

Autism advocates have been speaking out for a long time now. We're not referring

merely to the issues surrounding the IBI program. We've been battling for

services in schools, public awareness, services for adults, respite for

families, and so much more. And we have made significant progress.

Ten years ago, very few members of the public knew what autism was. Today, there

is much more awareness—not only about what autism is, but also about the

struggles families face in trying to access services for their child. Some

members of the public even seem to be aware that children with autism grow into

teens and adults with autism, and that perhaps we should think about how as a

society we're going to deal with that.

Five years ago, there was an age six cutoff for IBI. The pioneering work of the

Deskin-Wynberg families in the court of law, combined with many of us fighting

in the " court of public opinion, " managed to end that injustice. Today, new

legal cases like the Sagharian class action and the Ceretti case are laying the

groundwork for a new wave of legal activism.

Three years ago, the then Minister of Education, Pupatello, said that ABA

could not be done in schools. Now, we have PPM 140, and while it's hardly a

magic bullet, it is a step in the right direction.

In more than six years of working as autism advocates, we've learned and

re-learned, a variety of lessons. The most important one is that we are stronger

when we stand together. While we may not agree on every goal or every point, but

when we do, we can make progress.

We've been looking ahead for some time, trying to figure out what needs to

happen next to improve the outlook for individuals with autism in Ontario. The

benchmarks process, ever-growing waitlists, the schools crisis and funding issue

all call out for action. But the tactics that we have used in the past have worn

out. While many in government take this as a sign that the war of attrition is

being won, they're wrong. There's plenty of fight left among the " veteran "

autism advocates, and there is also a new generation who are just itching to get

into the fight for the first time.

It's high time we all got together for a big pow-wow. We need to get our act

together.

We need to decide what goals are important to all of us. That's to counter the

line that we keep hearing about how we're not all asking for the same thing.

Then we need to discuss how we will pursue those goals and what tactics are we

prepared to use in order to achieve them—whether as individuals or as

organizations, whether as " good cop " or " bad cop. "

We need to co-ordinate our efforts. We don't need to merge all our different

organizations into one—that's not our objective here at all—but if we could find

a way to approach the government from all sides pushing for the same key goals,

we might just be successful.

To that end, we want to invite you to a meeting. One day—Saturday, August 8th,

2009—with some of the most experienced, energetic and outspoken autism advocates

in Ontario. All you need to bring is an open mind and your ideas. Together,

we'll lay out a road map for the next wave of autism advocacy in Ontario.

I sincerely hope that you can join us on August 8th. Details about location will

be available soon. If you are unable to attend, we'd still very much appreciate

it if you could complete our survey, which will be posted on our website

shortly. (www.ontarioautismcoalition.com)

Sincerely,

Bruce and McIntosh

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Benchmarks Panel member seeks input

Mr. Whitehead's response to several parent inquiries is attached. Terry

Whitehead is a member of the benchmarks committee and he is asking for

suggestions of what could be used in place of benchmarks since he believes the

" benchmarks are not necessarily the best solution. "

—-

Terry.Whitehead@... e-mail address is being protected from spam

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Hello to all that wrote to discuss their concerns with me regarding the proposed

benchmarks.

I am sorry for the tardiness of this response. I have been very busy at the

office of late, but have kept your concerns in mind.

First, I need to be absolutely clear. I did not sit on this Panel as a

politician. I sat on it as a parent of a child with ASD - a child that was

discharged from the IBI program without, in my opinion, a clear reason.

The purpose of this panel was to address the current practices used in the IBI

program. There is currently no clear criteria and parents are often left

wondering why their child was discharged. A group of medical experts looked at

this problem and recommended that a panel be formed and a set of benchmarks be

created using evidence based research found in medical journals and similar

sources.

Using this information, the Panel created the current benchmark policy. It will

be at the discretion of the Province whether or not a benchmark policy is used.

While I cannot say with absolute certainty that a benchmark policy is the best

policy to put in place, I can say that the current method is not working and a

solution needs to be found. If benchmarking is the chosen solution, this is the

best benchmarking policy that the panel could develop and I support it for that

reason.

I feel that the recommended benchmark policy that we developed is evidence

based, transparent and allows for a clear appeals process. It also strongly

recommends continued support and care for the child if they are discharged.

I understand everyone's frustration with the current policy, and I respect your

opinion if you do not feel that benchmarking is the best method to use to

address the current problems. The Panel was assembled with the purpose of

creating a benchmarking option. As I said before, it will be up to the Province

to decide if this is the best policy. If you do not feel that it is, I respect

that. I also ask you to make any suggestions with regards to what could be used

in place of benchmarks. I think we all agree that the current system is not

working. We need to find a solution. The benchmarks are one suggestion, and I

feel that we have created the best possible benchmarks; however, benchmarks are

not necessarily the best solution. If you think that you have a better one, I

strongly suggest that you contact your MPP with your concerns.

I want the best possible program for children and families dealing with ASD and

a clear and fair method for choosing who qualifies for the IBI program. I cannot

say for certain that benchmarks fulfill that need, but I can say that the

benchmarks we developed are, in my opinion, the best possible benchmarks that

could be developed.

I hope this clarifies my support of the Benchmarks that the Panel developed.

Sincerely,

Councillor Terry Whitehead

Ward 8 - West Mountain

City of Hamilton

Office: (905) 546-2712

Fax: (905) 546-2535

Cell: (905) 317-6001

Web Site: http://www.terrywhitehead.ca

My Blog: http://terrywhitehead.typepad.com

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Continuation Criteria document released

After enormous pressure from parents across the province, IBI Regional Program

providers have released their " Continuation Criteria " for retaining children in

the IBI Program.