Some Ontario parents look to Alberta after Ford overhauls autism support

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TheStar.com – Calgary
Feb. 26, 2019.   By

CALGARY—The Ontario government’s overhaul of autism support services has some parents looking to Alberta for greener pastures — and some wishing they never left.

Alannah Bergeret’s daughter Acelynn, now almost 2, was diagnosed with autism in December. Bergeret’s plan was to get her into a private three-month program for early diagnosed children before waiting out the list for Ontario’s applied behaviour analysis (ABA) program, which offers a widely used therapy to help kids with autism work on basic skills. Bergeret hoped the private program could give Acelynn a head start before the years-long wait list for a longer-term program.

Then the Ontario government under Premier Doug Ford announced sweeping changes to how services for kids with autism will be provided in the province. On Feb. 6, officials announced a plan to tackle the long wait lists for children with autism. As of April 1, funding will be given directly to families and will be based on income and age instead of regional service providers.

“As soon as I realized the changes that were coming into effect … it was a completely different ball game,” said Bergeret, who currently lives in Ottawa. “When (Social Services Minister) Lisa MacLeod announced what she did, she took away my hope for Acelynn.”

MacLeod said families will be able to access up to $140,000 per child up to the age of 18, funding which will be mostly directed at the younger years. Families will receive up to $20,000 a year until their child turns 6, and up to $5,000 a year thereafter.

Advocates and parents have reacted with anger to the change, which they say allocates funding based on parents’ income instead of individual children’s needs.

Bergeret and her husband started looking at other provinces. She says Alberta stood out because of its needs-based system: children are assessed through a provincial program, which then gives families the choice of how to spend their funding.

Acelynn is still starting private ABA therapy in May, through a six-month program that will give her just three hours of therapy a week. That’s compared to the 25 hours a week Bergeret estimates Acelynn really needs — and the six hours a week she will receive if she gets the maximum amount of funding the new Ontario program could provide her.

Bergeret took a job at Walmart to pay for the therapy and is supplementing the program at home as best she can. Those six months are a trial period: if three hours a week aren’t enough for Acelynn, come November, Bergeret and her husband plan to move to Alberta.

Acelynn is still starting private ABA therapy in May, through a six-month program that will give her just three hours of therapy a week.
Acelynn is still starting private ABA therapy in May, through a six-month program that will give her just three hours of therapy a week.  (COURTESY DUPUIS FAMILY)

In comparison, Alberta’s Family Support for Children with Disabilities program allocates funding based on an individual assessment of each child. It’s also meant to support children with all types of disabilities, meaning it covers a wider range of services and therapies. The program assists about 10,000 children a year, according to the Alberta Human Services website, and includes family-centred services such as counselling and funding to help with the additional costs of raising a child with a disability.

Kathleen O’Grady, a research associate at Concordia University and the parent of a child with autism, said Ontario’s old system, though slow and “underfunded,” was at least based on individual needs. The new one allocates funds based on income. O’Grady and her husband won’t qualify for any funding, she said.

Concentrating the funding on the younger years will also leave a lot of children out, O’Grady added, since many cases of autism aren’t diagnosed until around 4 years of age.

“To tie it to age and to tie it to income … it doesn’t make any sense at all,” she said.

Tim Ingram moved to Calgary from Ontario in 2014 so his children Alanna and Tyler, now 12 and 9, could access more support, as both children have autism spectrum disorder. He said a more comprehensive system designed to support children with a range of disabilities has made all the difference.

Through speech therapy, Alanna learned to talk at age 9, and Tyler was able to transition from a privately run special needs school to a public school. Alanna currently attends Janus Academy, a school for children with autism partially funded by the Alberta government. Ingram’s family also receives funds to bridge the gap in cost for parents of children with disabilities, such as helping to fund a support worker when one of his children attends camp.

Neither of his children would have progressed to where they are now if the family had stayed in Ontario, said Ingram.

Over the past five years, Ingram has fielded questions from close to 30 parents about the move from Ontario to Alberta, though he said not many end up taking the leap. However, since the Ford government’s announcement, he said he’s seen interest increase slightly.

Alberta’s system is needs-based, and the new Ontario program won’t be, said Ingram. Because of that, “I think now we might see some movement,” he said.

Lyndon Parkin, vice-president of the Alberta Autism Society and executive director of Autism Calgary, said in an email that the associations have not noticed a significant increase in calls from Ontario parents looking to move to Alberta. He said the stresses of moving, especially with a child on the autism spectrum, are often big deterrents when it comes to the decision to relocate.

Christine Lutz moved to Fort McMurray from Ontario in October 2012 for her husband’s job. In March 2014, her son Joshua, then just over 2 years old, was diagnosed with autism as well as several other disabilities, including dyspraxia and attention deficit hyperactivity disorder (ADHD). To properly support him, the family moved to Lethbridge so they could access a wider range of services.

Joshua got in-home aid in Lethbridge through Family Support for Children with Disabilities, receiving up to 40 hours a week of support, including ABA therapy, speech therapy, occupational therapy, and physiotherapy. The province paid for all of it, and in less than two years, Joshua made a lot of progress, Lutz said.

However, Lutz wanted to move back to Ontario to be closer to friends and family. In 2016, Joshua was going on 5 years old and autism services in Ontario were changing. Under then-premier Kathleen Wynne’s new program, which in 2017 gave parents a choice between government-funded therapy or funding for private services, Joshua would receive funding to pay for private treatment until 2018. At that point, Lutz said she was told he would be supported until he turned 18.

The family moved to Port Colborne, Ont., in September 2016, though Lutz’s husband still flies out to Fort McMurray for work. Joshua went from 40 hours a week of intensive therapy to 21 hours, spending two days a week at school. His older brother Austin, then 12, was diagnosed with autism spectrum disorder and got on the wait list. He was near the top when the Ford government made its announcement.

“I’ve been crying since,” said Lutz. “I had no idea that anything was going to change.”

Joshua’s six-month program is up in May, and the changes come into effect April 1. He currently accesses more than $5,000 per month worth of services. Under the new program, he will get up to $5,000 per year.

Come April, Lutz said she worries about the strain the changes will put on regular classrooms. Joshua still struggles to handle two days of school a week.

“I can’t put my child in school,” she said. “We would never have moved back here in the first place if we knew things were going to go backwards.”

If things don’t change, Lutz said she will be moving back to Alberta before the next school year to help her children access the services they need.

“When we first moved to Alberta, it was to better our lives,” she said. “Because of this, it’s not going to happen here.”

Lutz said she thinks basing funding on parents’ income instead of children’s needs, which vary greatly across the autism spectrum, will spark “a crisis” come April 1.

“It shouldn’t be based on income, it shouldn’t be based on age. It needs to be based on the individual child,” she said. “If there’s no changes, and it doesn’t look like there’s going to be … We have no choice in my eyes.”

Crystal Lafond is in a similar situation.

The family was living in Fort McMurray when their daughter Hailey was diagnosed with autism, having moved from Oakville in 2013 so Lafond’s husband could take a well-paying job. At 2 and a half, Hailey still hadn’t started talking. After six months of speech and behavioural therapy, she was diagnosed by a doctor, who recommended she start kindergarten a year early.

In school, Hailey had her own educational assistant, Lafond said. Between the extra help and the various types of therapy, “it was like night and day,” she said.

“She went from not being able to say, ‘Hi’ or ‘Bye’ or anything,” said Lafond. “She is now 5, turning 6, and she will talk your ear off. She’s doing amazing.”

However, two fires in Fort McMurray — in addition to the 2016 wildfire, the family also endured another house fire — left the family to rebuild their lives twice, and a four-month stint in Edmonton wasn’t the right fit for Hailey. Lafond decided it was time to move back to Ontario to be closer to her friends and family.

“We were told that Ontario was coming around” in terms of autism support services, she said. But when they arrived in December 2017, there was nothing available for Hailey.

Hailey Lafond, age 5, February 26, 2019. Hailey’s mother Crystal credits the support she received in Alberta for the progress Hailey has made.
Hailey Lafond, age 5, February 26, 2019. Hailey’s mother Crystal credits the support she received in Alberta for the progress Hailey has made.  (COURTESY LAFOND FAMILY)

Hailey is fairly high-functioning, explained Lafond — she doesn’t need the more extensive therapies many children with autism rely on. But because she isn’t high-needs, she hasn’t been able to access the behavioural and speech therapy that helped her in Fort McMurray.

Lafond said Hailey got lucky with her school in Innisville, Ont., which matched her with an educational assistant. But it’s not the same. Things that were progressing well for Hailey, such as communication and toilet training, are starting to slow down or even go backwards.

“We’re already seeing her regress,” Lafond said. “It’s terrifying.”

With the new changes under the Ford government, Lafond said she’s worried schools won’t be able to handle the flood of kids who previously accessed significantly more support.

“I’m fighting to get my daughter some extra help, but I’m also fighting to save my other daughter from having to deal with this,” she said. “It’s going to hurt every child there.”

Lafond said it’s tempting to move back to Alberta, where Hailey was getting the support she needed, but financially, it would be a struggle for the family.

“It’s definitely a thought and it’s definitely a possibility,” she said. “If we could find (my husband) a job in Fort McMurray again, I think we would have been gone already.”

Under the new program, Lafond said it will be easier for Hailey to get an iPad than to get the therapies that previously helped her.

“In Alberta, we would get services. Our kids would be OK,” she said. “I kind of miss it. I kind of wish we were still there.”

Rosa Saba is a reporter/photographer with Star Calgary.

https://www.thestar.com/calgary/2019/02/26/some-ontario-parents-look-to-alberta-after-ford-overhauls-autism-support.html

 

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