Families crumble, debts build, kids go without therapy. Stories from Alberta’s waitlist for disability support

Alexandra Bejarano is watching her girl retrogress — talk to a lesser extent, her words sir thomas more muffled — as they wait for provincial support for her Down syndrome. 

Syeda Zehra put her accounting career on hold and is watching YouTube videos to become her own therapist for her six-year-old son. She has regrets about moving to Canada, leaving the therapy he was getting in Oman behind.

And Carissa Campbell is considering separating from her husband as they wait for help supporting her 10-year-old daughter, who has ADHD and Tourette and only made it to school twice in the last month. At least then they would each get a break. 

“It’s putting a lot of strain on us. Something has to give,” she said. 

An estimated 20,000 Alberta kids face waiting years to get therapy for disabilities

The provincial program is supposed to help families cover the "extraordinary costs” associated with having a child with disabilities. It will cover specialized respite, hospital parking, a one-on-one aid for daycare, and targeted behavioural and speech therapy, among other things.

But only once you’re in the system.

And that system has pretty much stalled.

Provincial officials say there are 18,584 active cases open with the department in 2026. That's down from 20,033 active cases two years ago, despite a $44-million increase in the budget.

In the meantime, Alberta’s population has grown, and the number of children waiting to move through the system and get a caseworker, which is needed to access individual therapy, has ballooned. The union representing FSCD caseworkers now estimates 20,000 Alberta children are somewhere in that queue.

In addition to those who recently applied, more than 300 respondents said they submitted applications in 2023 or 2024. Many have been deemed eligible and even have contracts, but can’t access services until a caseworker is assigned.

As they wait, they report losing jobs, or being unable to find work because their children are being banned from multiple daycares without access to a one-on-one aid. Or parents are homeschooling out of necessity because their children get sent home after an hour or two each day.

They are taking on debt to fund therapy or paying with private insurance benefits, only to see their children regress when that private coverage runs out.

And within the family, parents worry siblings are neglected. They report stress to the point of burnout. Marriages and other relationships collapse.

The hardest part, many said, is that they’re told they’re eligible for help but can’t get an answer as to when that help will arrive.

And in the meantime, a key window in their child’s development is closing. 

That matches the stories organizer Keltie Marshall hears from families in her peer support group, Hold My Hand Alberta. 

“The lack of being able to have employment leads to our families also living in poverty,” she said.

“When you have that, you become insecure with your housing. You're not able to access therapies for your child because you don't have benefits anymore. It just leads to a whole snowball, right?

“We're seeing so many families burning out. We've seen families relinquish their children to the province because they just cannot manage without any support. These are the stories you hear that make you just feel like something needs to change.”

Here are a few of the stories we heard.  

Susan Rose maxed out her credit card to pay for specialized babysitting for her autistic grandson, Grayson Racicot. She’s on a fixed pension, with nothing to fund therapy, so next year, he’ll be going into Grade 1 — ready or not.

Rose is 66. Her husband is 81, and caring for a busy five-year-old who still can’t speak is exhausting. They bring him to The Point, an inclusive child centre in Okotoks, when they desperately need a break.

Grayson came to live with her when he was one, after her daughter died. He has autism and ADHD.

“I wasn’t going to throw him to the wolves. Absolutely not,” she said.

But at an age when many people are retired, she’s barely keeping up. 

“He’s very busy. He's go, go, go. He doesn't really shut it down until he's asleep.”

Rose applied for FSCD support in March 2024. Grayson was approved in April 2025, and she was hoping for a caseworker to co-ordinate and pay for therapy. They still haven't been assigned.

When she calls, she’s only told he's still in the queue.

The unknown is also complicating her efforts to get help elsewhere. Grayson is Indigenous. Rose said that, initially, she was able to get some money for clothing and grocery cards from the federal government through the Jordan’s Principal program, which also supports children with disabilities.

But now she says they won’t help because they say FSCD should kick in shortly.

“It's like the two are going head-to-head at each other. We are just sitting on the sidelines. ... I mean, this child needs help right now.”

Dozens of parents spoke about being on probation, quitting or otherwise losing their jobs because they missed too many days of work. 

Stephanie Karas worked as an office manager at a corporate law firm in Calgary for 10 years before having two children, now ages three and six. Both have autism. 

“I loved my job. I was good at my job,” she said. €œI had to quit to be able to pick up my son from kindergarten on time and be able to have doctor's appointments and therapist appointments and any kind of dentist appointment.

“You have a child with special needs, you don't just go to a dentist. You have three separate appointments [to get the dental work done], and any job will fire you for that.”

Her kids both went to Wee Wild Ones daycare, which includes visits from the I’m For Kids Team, a private company that offers speech and behavioural therapy with provincial, school-based early childhood funding.

Karas called them "wonderful educators," but it’s not enough. She needs someone to help potty-train them, teach them to walk down stairs properly and how to stay calm at a grocery store instead of getting overwhelmed and screaming.

“I'm just sick of it. FSCD is just not coming and we're drowning,” she said.

“For both my kids, when children that are nonverbal have an issue articulating what they want to say, sometimes they get aggressive. It's incredibly difficult for someone like myself with no knowledge and no expertise, but just patience and understanding of my children.”

Megan Hanson, the mayor of Sylvan Lake, said her son was kicked out of nine daycares and private day homes — every centre in their area — before they finally got help. He has autism and sensory challenges, which means he gets overwhelmed and tries to flee.

“I tried very hard. I tell you, there was a lot of days where I had to run out of a meeting. My husband actually did leave one job so that he could be home for all those phone calls,” Hanson said. €œYou never know when you're going to get a phone call that says, 'Please be here within 10 minutes.'”

Her son Liam needed a one-to-one aid, which is available through FSCD. And Hanson said they weren’t able to pay privately because the daycare said that wouldn’t come with the right insurance.

“I called our MLA, I called the minister's office, I emailed for almost a year before I finally even received a response … saying, ‘Yep, you're still in the queue. Can't tell you how much longer it's going to be.’ That uncertainty was one of the hardest parts.”

She still doesn’t know how or why she got the FSCD contract and caseworker, but after two years, it did eventually come though.

The governing United Conservative Party has suggested the FSCD program is oversubscribed because of all the people moving to Alberta to take advantage of it. Former Social Services minister Jason Nixon said this when speaking at the Alberta Municipalities roundtable in March. 

Two different military families said they were transferred here for work, and either lost disabilities services or left a waiting list in Ontario to join Alberta’s.

One man said his niece had been receiving full disability support in the Yukon, but lost that when she moved to join him here. She’s been on the list waiting for help since 2024 and might age out before she receives support.

Multiple immigrants said their children had been receiving support before they came to Alberta, and one mother said she moved back to India to get therapy for her child, separating temporarily from her husband.

Syeda Zehra said she applied to immigrate eight years ago, four years before her son was born with autism. They were living in Oman, where he was getting speech and occupational therapy through a specialized school, when they finally got permission to immigrate. That was July 2024; she applied for FSCD that November.

Zehra, an accountant, said she assumed she could pay for another private school here while she waited for public support. But that hasn’t worked out. The private schools she approached also have waitlists.

“I had to give up on my career and wait for him to get some resources. And since it was not happening, I have to do all the therapies myself. I watch YouTube videos for occupational and speech language support and then I do them at home.”

She says he is "very good at mental math, and his drawings are amazing."

“I don’t want him to be dependent later in life, because he has skills. They just need to be polished.”

His challenge is concentration and socializing, she said, and he is behind in his language skills. 

“In autism, it's very important to have an early intervention. It is very difficult to help them later in life because they become consistent in their routine and in their habits,” Zehra said. €œMaybe I would not have considered [moving to Canada] because my son is losing crucial years of development.”

In a statement, press secretary Amber Edgerton said, in part, the ministry is “reviewing the program to ensure effective support for families in need, now and into the future. ... The caseload number reflects the increased funding by Alberta's government, as well as both the growing complexity of client needs and the rising cost of services and supports.”

Journalist

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