In Ontario, a five-year waitlist stood between Jen Addison and accessing autism support for her son Joshua.
When her son was diagnosed in 2019 with level three autism — often characterized as having severe challenges in social communication and inflexible behaviour — Addison and her husband immediately applied to the Ontario Autism Program. They ended up in limbo for four years, paying out of pocket with no news of when they could finally receive government funding.
Joshua was non-verbal until he was around five years old, but soon after he began talking he quickly regressed and would communicate only with non-verbal cues.
During the COVID-19 pandemic, the Ontario government introduced two allotments of interim funding, through which Addison was able to secure $40,000 — but that was it. While the funding seems like a lot, Joshua’s diagnosis requires an array of supports, including speech language therapy, occupational therapy, applied behaviour analysis (ABA) therapy and respite care.
Addison said each therapy can cost between $120 to $140 per session. For ABA therapy alone, the weekly tab can reach $3,000 or more to meet the recommended 20 to 25 hours of care.
Desperate for help, Addison did some research and found Alberta to be one of the leading provinces for autism supports for families and children.
“I just started researching, knowing that without those supports he’s not gonna grow up to be able to take care of himself. He’s not gonna be a functioning adult unless he gets those supports,” Addison said.
“We know how important early intervention was. I was so frustrated and so angry and so upset at the fact that these kids are just being ignored.”
Her family landed in Calgary in December 2023. By January they had applied to the province’s Family Support for Children with Disabilities (FSCD) program and were told their wait for funding was four to six months.
By mid 2024, Addison had secured a spot for Joshua to attend a private autism school in Calgary where half the tuition is being covered by the government.
‘Comprehensive program’
For families across the country who are managing autism, the slogan “Alberta is Calling” has taken on special meaning — and not one the province necessarily intended to advertise.
Though the government could not provide specific migration statistics, experts say there is plenty of anecdotal evidence that Canadians like Addison are flocking to a new Alberta Advantage — a relative ease of getting financial help for their high-needs children, at least for now.
Tim Ingram, a father of two kids with autism, moved to Alberta 10 years ago. He previously served on a parent advisory committee for FSCD and has consulted with over 200 families across Canada who are looking for help.
“FSCD is really a program that supports all disabilities, but it’s a really comprehensive program,” Ingram said. “One of the things you’ll see in Ontario that’s happening now is that parents will wait five or six years for funding. By the time they get the funding they need, their kid is now nine or 10 and they don’t need the funding that Ontario is giving because it doesn’t fund what they want.”
From his perspective, the reason families are heading to the Alberta boils down to affordability and access. Ingram has talked to many families with young children who are looking for early intervention services so their children can be as independent as possible in the future.
Dr. Lonnie Zwaigenbaum, a developmental pediatrician and a professor at the University of Alberta, said Alberta looks at more family-oriented care compared with other provinces. He said one of the selling points is that parents have some choice in selecting a provider whose care approach aligns with what they feel is most appropriate for their child.
“I think there’s been a real shift across the country and in other areas of world, recognizing that we all learn about communication and social relationships through real-life experience rather than out of the context of our daily lives,” Zwaigenbaum said.
“Across the country, there’s becoming more of an emphasis on service models that involve family.”
Caseload jumps to 20,000
While Alberta’s program is enticing to families, the breadth of services varies across the province, and there are concerns about funding keeping up with growing demand.
“We’re seeing FSCD funding being flat and yet we’re seeing tons of people moving in,” Ingram said.
Alexandru Cioban, a spokesperson for the minister of community and social services, said in a statement to Postmedia that FSCD works to provide services based on each child and family’s needs.
“Our government is committed to ensuring that vulnerable Albertans, especially children with disabilities, continue to have access to the quality supports and services they need to thrive,” the statement said.
“The fact that families from across Canada are choosing to settle down in Alberta is a testament to the success of our efforts in supporting vulnerable members of our communities, as well as in strengthening our economy, making sure the dream of home ownership remains achievable, and the cost of living remains affordable for Albertans,” Cioban said.
During the 2023-2024 fiscal year, there were 20,003 families accessing FSCD supports in Alberta, a 31 per cent increase over the previous year. About 50 per cent of the children in that caseload have a primary diagnosis of autism, the province said.
Back in 2020-2021 — the latest numbers published on the province’s Open Data website — Alberta recorded 6,427 people accessing autism supports. A decade before that, the caseload number was 2,537.
The province said it has allocated over $685 million since 2022 to the FSCD program to support families and address wait list pressure.
Autism services not keeping up with demand
Terri Duncan, executive director of Children’s Autism Services of Edmonton (CASE), earned a master’s degree in speech language pathology at the University of Alberta 30 years ago.
When she first started working in the field, practitioners were seeing an autism diagnosis in one in every 10,000 kids. Now they’re seeing one in 50, she said.
“We used to diagnose (children) with something else and now we realize, ‘Oh, wait a minute, this is autism,’ so it’s diagnostic substitution,” Duncan said.
In part that’s due to better awareness, said Duncan. But right now she is seeing more kids in need of services, which is straining the system. It is not just one specific service that is more difficult to access, but all services.
Each family’s needs are unique, making it difficult to plan for expanding the system, she said. Some families may need respite, others early childhood services, speech pathologists, occupational therapists and so on. Clinicians, Duncan said, are always welcome and in demand.
“Some families need early childhood services, some children to have that intensive intervention in a preschool setting through the early childhood years. Other families to have a skilled caregiver who can come in and provide that break so that the family can do the things that the family needs to do. Some families and parents of autistic kids need coaching and training and learning and education programs.”
The province is currently dealing with staffing issues. Duncan said there are not enough qualified people working in autism and there isn’t enough government support for training for those individuals. Maintaining competitive wages is part of the ongoing challenge in retaining staff.
“We’re losing people out of the profession and we’re losing really great clinicians in the field of autism,” Duncan said. “It’s a real problem because unless we address some of those issues, we’re not gonna have enough people to intervene and support the families that need support.”
At the beginning of September, CASE opened the Jim Jiwani Autism Academy, a school for autistic children that serves students from kindergarten to Grade 3. The school is currently at capacity with 40 students.
Early intervention lacking priority
Duncan said while Alberta generally has better access to better supports compared with other provinces, it faces a big challenge in one specific area. Children under the age of five in Alberta struggle to get access to early intervention, she said.
Duncan stressed that even if early intervention does not occur, that doesn’t mean children who receive services later on will not have an opportunity to live a “normal life.” But like anything in health care, the quicker the diagnosis and treatment, the better the outcome tends to be.
“I’m not saying that if we don’t intervene early, we can’t make a difference because I’ve had 10, 12 and 20-year-olds and we’ve been involved with them and they have made tremendous gains and we have been able to positively impact their quality of life,” she said.
“Learning is a lifelong thing, but in particular kids with communication delays, if we intervene early, there is less chance that they’re going to start to develop maladaptive behaviours and challenges with regulation.
“When you intervene early, you have a lot more opportunities to change the trajectory of that individual’s life and improve their quality of life.”
We were spending thousands and thousands of dollars a month on services that we felt were necessary with early intervention being so important. We struggled.
Natalie Langlois
Moreover, when children fail to get diagnosed early and are referred to the right services, it creates long wait lists for those services. That’s why parents, if they can, often get their children diagnosed privately.
Duncan said there are a limited number of professionals in the province who can diagnose autism. While they are working to expand diagnoses, she is seeing issues with pediatricians and physicians who are not picking up signs that a child should be referred for further evaluation.
“I still hear too often, ‘They’ll grow out of it,’ especially when it’s a toddler who isn’t speaking yet. They could be a late talker, but that is one of the major signs that a child needs further evaluation,” Duncan said.
Often it is parents who advocate on behalf of their child for a diagnosis, but if they have little knowledge on what to look for, it can delay the process. Duncan said part of the challenge with the system is that parents are constantly repeating their stories when they go from one referral to another.
In many cases, a physician may refer a family to Edmonton’s Glenrose Rehabilitation Hospital or for community services, community preschool, language services, or Edmonton Early Intervention. But there’s usually a wait list, and families have to tell their stories at each point in the intake process, then again when they are finally accepted.
“If they were referred to one of these other services other than a diagnostic centre, then they have to get referred to that diagnostic centre, then they have to go through the diagnosis process, which is a multi-day process with a multidisciplinary team, then they have to go through that process and tell the story again,” Duncan said.
Paying out of pocket and reimbursement challenges
FSCD is split into geographic zones. A particular complaint from the Edmonton zone is that families receive reimbursements at most only once a month, which can be a struggle for some who have to pay out of pocket initially, said Ingram.
Natalie Langlois and her family moved to Edmonton in June 2023 for her son Oliver. By December, they were receiving basic first-level support for family counselling, respite hours, and access to additional aid. Coverage for occupational and speech therapy followed in April 2024.
Langlois, who chose to get quarterly reimbursements, said the payments have been relatively quick but acknowledged that some families are not in the same financial position.
In 2019, Langlois had Oliver assessed privately in Ontario due to barriers finding a pediatrician.
That same year, he was diagnosed with autism and Langlois joined the growing list of families on the wait list for autism supports in Ontario. Similar to Addison, they received $40,000 in one-time funding provided by the province, but otherwise, they paid for everything out of pocket.
In an email to Postmedia, Ontario’s Ministry of Children, Community and Social Services said its government had made improvements to the provincial autism program by “doubling its budget in 2019” to $600 million annually. Funding for services was increased again by an additional $120 million in the most recent budget.
Meanwhile, Langlois said they were sitting in the dark “taking a guesstimate based on other families’ reports” for when her family would get off the waitlist.
“We were spending thousands and thousands of dollars a month on services that we felt were necessary with early intervention being so important. We struggled. I was on maternity leave when he was diagnosed. It got harder to manage the Ontario system knowing that it was years and years and years wait for any more significant help.”
Bookmark our website and support our journalism: Don’t miss the news you need to know — add and to your bookmarks and .
You can also support our journalism by becoming a digital subscriber. Subscribers gain unlimited access to The Edmonton Journal, Edmonton Sun, National Post and 13 other Canadian news sites. Support us by subscribing today: | .