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Updated: Fedeli says Northern Ont. families will, indeed, be part of autism pilot program

Nipissing MPP says statements by France Gélinas 'flat-out wrong'
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In a 2019 photo, Sudbury parents of children with autism and their supporters gather in front of MPP Jamie West's office to protest changes the province is proposing to how autism services are funded. (Matt Durnan / Sudbury.com)

Updated June 5 at 5 p.m.

Nipissing Progressive Conservative MP Vic Fedeli says statements made by Nickel Belt NDP MPP France Gélinas (as seen below) about the Ontario Autism Program pilot are "flat-out wrong."

The Ontario Autism Program pilot that was announced in February will have 41 Northern Ontario families participating, Fedeli told Sudbury.com sister publication BayToday.ca

Six hundred children and youth from across the province will be invited to participate in the new program, and Fedeli says northern families are part of the new needs-based funding pilot program.

Original story: 

The Ontario Autism Program pilot that was announced in February appears to have left out Northern Ontario families.

Nickel Belt MPP France Gélinas rose to speak at Queen's Park on June 1 on behalf of the Northern Ontario Autism Alliance.

"In February, the Ontario government announced a new needs-based funding pilot program. The announcement noted that 600 children and youth from across our province would be invited to participate in the new program," said Gélinas.

"I was shocked last week when the Alliance informed me that no one, not them or their allied advocacy groups, or service providers or support groups have been able to identify a single Northern Ontario family who have received an invitation to participate in the pilot program."

 

The pilot program announced in February was met with some questions by parents of autistic children in Sudbury, pointing to a number of contentious features of the pilot and raising concern that the proposed plan missed the mark.

Northern Ontario Autism Alliance leadership team member Julia Ritchie spoke in February about her concerns with the pilot, highlighting age caps for funding and the wait times for kids in Northern Ontario to receive a diagnosis compared to children living in southern Ontario.

Ritchie has been reaching out to her network around Northern Ontario since invitations to participate in the pilot were sent out in March, and she says that to date she hasn't been able to find anyone in Northern Ontario who was invited to be part of the pilot.

"Since the pilot was announced and invitations started rolling out, families talk," said Ritchie. "We have a lot of advocacy groups and you make a lot of friends across the province because we're all in the same situation. Invites started going out at the end of March for families that were already on the OAP wait list." 

The premise of the pilot was that the government would invite: 600 families to take part and the program would later be rolled out to 8,000 families.

"Northern Ontario represents about six per cent of our province's population and has a diverse population including First Nations and Francophones living in urban and rural environments," said Gélinas. "If this pilot program was run equitably there should be more than 30 families from north of the French River in this study; but there's zero."

Ritchie made similar comments to those made by Gélinas, speaking about the diverse and unique needs of kids in Northern Ontario.

"We wanted Northern Ontario families included in the pilot for fairness of course, but also because of the intricacies that we deal with could be faced in the pilot format," said Ritchie. "For example, do travel costs get absorbed in this budget? Does it come out of the budget so a family in Toronto doesn't have to spend on travel costs but a family on Manitoulin does?"

These questions remain to be answered, and have been asked since the pilot program was announced more than three months ago.

"I think we really wanted to see how things like travel costs would work for families in Northern Ontario so that the family would be supported and those issues would be identified and hopefully resolved for the real program," said Ritchie

"All of the kinks should be worked out in the pilot, so things like access to French language providers, ensuring Indigenous families have culturally competent care and we wanted to make sure those things were addressed in the pilot. Our families have already been waiting for so long. We just want to make sure that northern views are included in the pilot."

Julia's husband, Sean, met recently with Nipissing MPP Vic Fedeli, who indicated that Northern Ontario families had been chosen for the pilot. Ritchie says that she understands how vast Northern Ontario is and it's possible that a family outside of her contact network was chosen.

Additionally, while the invitations for the pilot went out in March, the pilot program has seen no movement as yet, and those families chosen to participate in the pilot are in a holding pattern.

"They've partaken in a one-hour webinar to learn about it but nothing has happened yet," said Ritchie. "They haven't had their children assessed or heard anything else about this program. The participants haven't done anything with the pilot yet. No one is actually participating in the program yet, they've gone to an information session and that's it."

Gélinas said that Northern Ontario families are hurt by not being included in the pilot, noting "they feel like this program isn't for them, and after all the work parents in my community have done, that's a great shame."

Ritchie still feels generally opposed to the structure of the new Ontario Autism Program, and the apparent exclusion of Northern Ontario families in the pilot is another blow to parents of autistic children in Sudbury and the north as a whole.

"We wanted to make sure there would be Francophone families, Indigenous families, rural families and ensure that those demographics were included when selecting the families but we've heard nothing from the government about who was selected," said Ritchie.

"I understand they're not going to give us names for confidentiality, but it would have been nice for them to be transparent and tell us 'we've selected 100 families from Northern Ontario, 20 of them were Francophone, 20 were Indigenous,' something like that. Pilots are meant to test things out and in doing a pilot successfully you would want diverse participants."


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