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'Kids are being left behind' — Ontario families rally for national autism strategy

The Next Step Autism March, organized by two autism parents in Barrhaven, Ont.,  made its way to Parliament Hill Sunday March 30, 2019. Autism supporters took a moment of silence, holding up photos of those effected. - Ashley Fraser
The Next Step Autism March, organized by two autism parents in Barrhaven, Ont., made its way to Parliament Hill Sunday March 30, 2019. Autism supporters took a moment of silence, holding up photos of those effected. - Ashley Fraser - Postmedia News Service
OTTAWA, Ont. —

They brought banners, placards and service dogs.

About 200 people, mostly families who have children with autism, rallied on Parliament Hill on Sunday, urging the federal government to introduce a national autism strategy.

Some of the protesters participated in all or part of a march from the Barrhaven constituency office of Nepean MPP Lisa MacLeod, Ontario’s Minister of Children, Community and Social Services who has been at the centre of a firestorm over funding for autism therapy.

The provincial government announced sweeping reforms to the Ontario Autism Program on Feb. 6, arguing that the changes would spread the money around. The existing system only supported a quarter of children with autism, leaving 23,000 on a waiting list for services, MacLeod argued.

However, the changes would result in some families losing thousands in funding for a therapy called applied behaviour analysis, known as ABA, which can cost up to $80,000 a year. The news sparked furious protests provincewide that have still not stopped.

On March 20, MacLeod pressed rewind on some of the reforms, pushing back some changes for six months and removing means testing. Last week, she announced that  a “strong” needs-based funding system for autism treatment is on the way.

“Part of this will always fall to the provincial governments. It’s shameful that this is happening in Canada. Kids are being left behind.” - Sarah Evans

On Sunday, protesters said the Ontario saga has shown that funding for autism treatment can’t be left in the hands of the provinces.

“Autism services need to be standardized. With the province, we get the rug pulled out from under us every four years and we have to start the fight again,” said Kerry Monaghan, one of the rally organizers. “People are moving from one side of the country to the other to get services.”

Added co-organizer Sarah Evans: “Part of this will always fall to the provincial governments. It’s shameful that this is happening in Canada. Kids are being left behind.”

The protesters want the federal government to recognize autism spectrum disorder as a severe development and neurological disorder under the Canadian Health Act, and standardize needs-based autism services across the country. The federal government should enshrine evidence-based therapies for autism treatment in the Canada Health Act, said Monaghan.

There are other measures in the package, including modifying the disability tax credit to recognize autism as a lifelong condition and moving eligibility assessment from the Canada Revenue Agency to Employment to Social Development Canada, as well as establishing a national ombudsman or tribunal to investigate when governments fail to provide for those with autism and special needs.

MacLeod has said she will take the next few months to assess how to support children with more complex needs. However, the date set for the original changes was April 1, and parents say they still don’t know what to expect

“Tomorrow is the first day of the new program and we still don’t have any answers,” said Mike Moffatt, the father of two children with autism.


We asked protesters why they joined the rally:

Julie Gallant and P.J. Palmer

Gallant: “We’re from Brampton. We have three grandchildren with autism — Jack, 7, Stevie, 2, and Jackson, 16. We want the government to recognize that this is a health issue, not a social services issue. I’m not backing off because this is for our children. Just the other day, Jack looked right at the camera when I was taking a selfie. He’s never done that before. The therapies are working. It’s awesome.

Aline Coutino

“This is the first time I’ve protested. I decided to take part to bring attention to the lack of transparency on the provincial plan. My son Bentley has been doing 20 hours of therapy a week at CHEO and he’s been thriving. He can sit now for 15 minutes. He couldn’t do that before — he was a constant flight risk. Now we can go on outings. We just won’t be able to afford it with a budget of $5,000 a  year. We will have to pay $18,000 a year for services and I have maxed out my line of credit. We would have to stop.”

John Schreuders

“We have two children who were diagnosed with autism, Max, 7, and Alek, 4. There’s not a lot of support for parents with autistic children. If children don’t get the services they need right away, the window closes. Max was three when he was diagnosed. We needed to empty our bank accounts. Alek is doing really well. I don’t even know if he will be re-diagnosed (with autism). There has to be a national strategy. We’re lucky, but some families don’t have the available money.”

Cowther Dore, Stacy Kennedy and Tangerine Stanley

Dore: “We’re all from the Toronto area. We all have a child with autism. We met at a protest in front of (Premier) Doug Ford’s constituency office. Now we’re friends. We came to Ottawa together. We walked from Barrhaven.”

Kennedy: “Every province has different programming. We need a national strategy. The plan starts tomorrow and there’s no information.”

Stanley: “My son is 19 months old. There’s no point in a diagnosis if there isn’t therapy. It’s not fair to diagnose and not give a child therapy.”

By Joanne Laucius

Copyright Postmedia Network Inc., 2019

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