Some local families using Alberta's Family Support for Children with Disabilities (FSCD) program are frustrated over perceived funding cuts, claiming these have left them without essential services.
DiscoverAirdrie asked the province to comment on the matter. Sherene Khaw, Communications Director for Alberta Seniors, Community and Social Services, stated that the FSCD program has not been cut, and funding has been maintained.
"... To make sure those currently receiving services can continue to access the critical supports they need. Since 2022, the province has allocated over $685 million into the FSCD program to support families and address waitlist pressure. We recognize that the demand for the FSCD program remains high, and the department is working hard to connect families to services as soon as possible."
Khaw also noted that there have been no reductions in the number of department employees in the FSCD program.
"The Ministry reviews its recruitment needs on an ongoing basis to ensure staffing levels are stable and consistent across the province. Recently, seven temporarily contracted disability services workers were notified that their contracts would not be extended once they expired. The end of these contracts will not affect families' ability to access services that are part of their agreements."
When asked to clarify how many families those seven workers would have been servicing, Khaw stated, 'caseloads can vary due to multiple factors.'
However, the advocacy group Hold My Hand Alberta, which supports disabled children and their families, released a statement last month expressing concern over excessively long wait times families are experiencing under the FSCD program. They highlighted that despite the government's promises, the backlog has doubled, with over 7,000 children now waiting for support.
Khaw noted that 'applications for the FSCD program are processed by staff in the order they are received, and the time it takes to assign files to a caseworker can vary depending on the volume of applications in the queue and each family’s specific circumstances.'
"We continue to work closely with families to make sure their needs are supported. To address families’ concerns regarding the application process, the new FSCD online application provides a more personalized and streamlined experience for families applying for the program and is quicker for staff to process."
What is FSCD?
The FSCD program in Alberta provides specialized services for families with children who have severe disabilities affecting daily functioning. Children must have critical needs in multiple areas and lack alternative services to qualify. The program offers individualized support through an Individualized Service Plan (ISP) developed with a team of health professionals.
Families must consult their FSCD worker and submit the necessary documentation to request services. However, FSCD does not cover educational needs, emergency situations, equipment from Alberta Aids to Daily Living, or provide financial benefits.
Families can choose their service providers and must adhere to employment laws if hiring directly. Payments can be made upfront or invoiced directly to FSCD. They are required to maintain detailed records for seven years for verification purposes.
Parents share their experiences with FSCD
*A.'s oldest child had developmental concerns identified early on, and although the family sought support from Alberta Health Services’ early childhood programs, she described the FSCD application as daunting.
"To get into FSCD and to apply for it, you need to have a diagnosis letter. To get a diagnosis letter, you need a pediatrician. The wait time for a pediatrician is around a seven to 14-month waitlist time."
She noted that once a pediatrician's appointment is confirmed, multiple visits may be necessary for an assessment.
"This is not simple because pediatricians are booking months in advance, and then you get a letter from a pediatrician to start the application process with FSCD. If you go through the application, you put all of your information in, and then you sit in a complete void of silence. You wait; you get a confirmation that your application has gone in, and then you hear nothing."
A. applied between March and April 2023.
"I'm only lucky in this sense that there was a massive increase in the number of applications after that period, and now what we're hearing from parents is they're waiting two years even to get into initial services. We waited about a year to get initial contact from FSCD, and they give you this small contract where you can apply for a couple of things, and then you wait another six to 12 months for caseworkers to come on."
Once families receive a caseworker, typically a social worker, they find the process largely depends on them to gather and provide evidence of their child’s needs. This involves obtaining assessments from various professionals, such as psychologists and occupational therapists, at their own expense.
"FSCD's mandate is [that] they pay for support and services, a very small proportion of it, mind you, but they do pay for supports and services for anything considered needs above an average child," she added. "What an average child needs versus the needs that a child with autism, ADHD, or any other neurodivergent labels, what additional supports they might need, and then they help you pay for some of those services."
She described obtaining a contract with FSCD, stating that the services are limited once an initial contract is in place.
"The maximum you can be offered is 20 hours of psychology or counselling support, and they only pay $98.73 for that support. Psychologists in Calgary charge anywhere from $220 to $260 an hour."
Additionally, the modest allowances for extraordinary needs do not come close to covering the actual costs, which can reach thousands of dollars a year.
"Getting an aide who helps out in daycare when they need additional support is crucial, but it’s not affordable."
Amidst this struggle, concerns have arisen regarding potential cuts to the FSCD program. “We were told that a number of positions of caseworkers in Calgary were severed... I no longer have a caseworker, so now I’m back in the queue," A. said.
Reflecting on her child's progress, she expressed fear that a lack of consistent support could lead to regression.
"My child has more skills than she did two years ago, but I worry that it will be much more difficult for her to integrate into the public school system. There will be further removal of her from being able to participate in what we would think are normal childhood things."
Similarly, another local parent, *D., whose 14-year-old has a diagnosis of Autism Spectrum Disorder (ASD), echoed these sentiments, sharing her frustration with the system. After years of advocating for her child, her son was diagnosed, which she said gave her hope for proper individualized support.
"We’ve been waiting a long time, but I want communication. I don’t want to be sitting back on the sidelines," she said, emphasizing the need for timely updates from the system.
When asked about systemic issues, she stated, "There’s a lot of hoops to jump through, but none of them are clear, and there’s a lot of waiting."
D. has been waiting approximately 10 months since submitting her FSCD application.
"There are no case workers, and there has been no word back, but we're somewhere in the system—I don't know where," she said. "Unfortunately, now my son's going to be stepping into grade 10."
Her concerns grow as she sees what she believes are systematic failures in support and communication.
"My biggest fear is knowing that my son could... probably will fall back into the cracks," she shared.
She emphasized the need for improved communication and coordination among support services.
"How is it that a kid can go through that ASD screening and be approved for support and then just disappear?"
As her son approaches adulthood, she fears the lack of continued support will hinder his development, underscoring the urgent need for a system that evolves with children's needs.
*N., another mother who applied for FSCD at her pediatrician's recommendation, faced significant challenges when she applied in 2021.
"I had to provide a letter from my doctor to back up my statements, but during COVID, in-person consultations were not possible," she explained. "When I was finally approved, I was told I had to write a letter detailing how my son was affected. I was overwhelmed as a mom of three kids, including one with a severe speech delay."
Despite her efforts, a year passed without receiving support, leading to feelings of despair.
"I was so distraught and upset by the fact that nobody was willing to help me. It felt like they didn’t care about me or my children."
The situation worsened when her younger son was diagnosed with autism and her daughter with ADHD. The cycle of waiting for assistance continued, prompting her to seek help from a social worker.
"She walked me through the process, which helped alleviate some of my anxiety," she said.
They submitted another application in April 2023, and by October, they received approval for family services. However, N. expressed frustration over long wait times and the lack of immediate access to individual services.
"We were told to expect a 12-month wait for a worker, but I’ve heard from others that it’s now closer to 18 to 24 months. I feel like I’ll have to wait for other families to age out of the program before my children can get help."
N. called for urgent change in the Alberta healthcare system, particularly regarding accessible resources for families of children with disabilities.
"Developmentally, if they’re not getting access to learn from other people, they’re not going to make progress," she stated, expressing frustration over financial burdens that prevent families from affording essential services.
She urged officials in charge of funding programs to improve communication about timelines and show greater respect for families in need.
"If I was rich, my children would be able to access all the services they need. But we’re not, and we can’t wait indefinitely for the support we desperately need."
In her written reply to DiscoverAirdrie, Khaw emphasized that the Ministry continues to work closely with the FSCD Provincial Parent Advisory Committee, an advisory agency to the Government that provides a voice for parents of children with disabilities whose families receive assistance from the FSCD program.
"This committee comprises parents from the Regional Parent Advisory Committees and FSCD program representatives and brings perspectives from across the province."
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*Editor's note: Full names have not been disclosed to protect the privacy of families.