Sunday, August 05, 2007

Autism Advocacy - Parents Tossed by Autism Ontario

The message from the Supreme Court of Canada in the Auton and Deskin-Wynberg cases was clear - the courts, and the Canadian Constitution, are of little assistance to families seeking to help ensure their autistic children get treatment or a real education. It is absolutely necessary that autism advocates Get Political. In Ontario Dan and Susan Fentie have been doing exactly that. And for their efforts they have been tossed by their local chapter of Autism Ontario. The Fenties indicate that the local autism charity fears losing its charitable tax exempt status.

I have no personal knowledge of the Fenties' situation in Sarnia, Ontario but here in New Brunswick the Autism Society of New Brunswick has been cautioned in the past that it could lose its tax exempt status if it was too political. The ASNB has been more political than most Autism Societies in Canada. And the ASNB received a warning, not directly from government or a government agency, but from a former executive officer of the Autism Society of Canada, that it risked losing tax exempt status because of its advocacy efforts.

Why do autism societies and organizations exist if it is not to advocate on behalf of persons with autism and their famlies? If autism organizations are more concerned about their tax charitable status than advocating forcefully for autistic persons then they have no reason to exist. Our priorities should always lie with our autistic loved ones and we should be prepared to fight on their behalf.

A local couple who helped put autism on the political agenda in Ontario has been forced to resign from the local Autism Ontario chapter, The Observer has learned.

Dan and Susan Fentie resigned last week after the local agency's board asked Susan Fentie to step down for criticizing the Liberal government.

In a July 19 story in The Observer, Fentie said the government should be ashamed for spending $2.4 million fighting a lengthy court battle with parents seeking treatment for autistic children.

Susan Fentie said she was disappointed but refused to criticize the board.

They're good people put in a very bad position, she said.

Dan Fentie, who resigned along with his wife from the five-seat board, said it's under pressure from both head office in Toronto and the government to conform.

He said the charity fears losing its tax exempt status and future funding if members speak out against government policy. The local chapter already missed out on money awarded to six other Autism Ontario chapters for offices and local co-ordinators, he said.

We were told (by Autism Ontario) the reason we weren't picked was because we wouldn't carry their message. What message? We thought this was about fighting for families.

Susan Fentie said the local board was increasingly uncomfortable with the couple's outspoken advocating style. The relationship was further strained when she announced her intention to seek the local Progressive Conservative nomination in the October provincial election. Fentie lost the nomination but remains a party member and actively works with party leader John Tory.

Tricia Edgar, a spokesperson for Child and Youth Services Minister Mary Anne Chambers, denied the government sought the Fenties' removal. Chambers is on a first-name basis with the couple, she said.

We've had folks at our announcements that had been suing the government, Edgar said. The Minister has met with them . . . There is absolutely no such pressure from the government.

The Fenties also helped found a group called the Ontario Autism Coalition, which has lobbied the government and staged rallies to increase services and spending on autism.

Ian Naylor, board president of Autism Ontario Sarnia-Lambton, denied the provincial government or head office had anything to do with the request for Susan Fentie's resignation.

The chapter has to remain neutral when it comes to the government, Naylor said. Susan and Dan belong to the Autism Coalition, and they have a great function, but we as a board felt the two (groups) could not be together.


Suzanne said...

I really don't like autism politics. That's why I don't stick around the local autism mailing list. If you disagree, you're made to feel like a pariah. Personally, I think the service "arm" if you will, and the advocacy arm should be separate. Autism is a highly political subject, and as far as my personal life is concerned, I don't care for the politics, I care about getting my daughter the treatment that I think is right for her.

Unknown said...


That is a decision we all have to make personally.

The reality though is that without politicization of the autism community we would have little or nothing in the way of services tailored for autistic children. I have been active as an advocate in NB for over 8 years along with a core group of autism advocates. When we started there was no government funded autism intervention for pre-schoolers in NB and there were very few people properly trained to work with autistic children pre-school or in the school system.

Now we do have some pre-school funding and people have been trained each year for the past few years to work with pre-school age children. We are also getting people trained to work with our autistic children in the school system although there is still serious resistance from the senior education officials who don't like to lose control of the education agenda even when they have neglected a group such as they did for so long with autistic children.

None of the gains we have made in NB would have been accomplished without serious advocacy including political advocacy. These gains will not be maintained and needed improvements made if we do not continue to advocate, including politically when necessary.

Anonymous said...

If you want the needed changes then you must become political.
Feat has never asked nor wanted tax exempt status because they do not wish to be muzzled nor held hostage by any government.