Alberta families wait years for disability support
More than 700 parents share struggles as FSCD waitlist swells, leaving kids without therapy and marriages under strain.
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Alexandra Bejarano is watching her daughter regress — speak less, her words 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. 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.
"It's putting a lot of strain on us. Something has to give," Campbell said.
These are three of more than 700 families who wrote to CBC News after the outlet published a survey for families waiting for Alberta's Family Support for Children with Disabilities (FSCD) program. The provincial program is supposed to help families cover the "extraordinary costs" associated with having a child with disabilities — specialized respite, hospital parking, a one-on-one aid for daycare, and targeted behavioural and speech therapy.
But only once you're in the system. And that system has stalled.
Provincial officials say there are 18,584 active cases open with the department in 2026, 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 — needed to access individual therapy — has ballooned. The union representing FSCD caseworkers now estimates 20,000 Alberta children are somewhere in that queue.
More than 300 CBC survey 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, parents report losing jobs, being unable to find work because their children are banned from multiple daycares without a one-on-one aid, or 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. Within families, 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.