Raising disabled kids in Alberta is exhausting. But not for the reasons you think

This column is an opinion by Sarah Doll, an Edmonton disability advocate and mother of two autistic children. For more information about CBC's Alberta election 2023 opinion series, visit the My Priority home page.

When my oldest child was diagnosed with autism nearly five years ago, I was so relieved. 

My experience up to that point was solely in trying to understand autism, a lifelong developmental disability that affects how a person communicates with others and interacts with the world. The hours of research, the doom-scrolling through parent support groups and the nights I laid awake worrying about the future had taken a toll. 

Getting to this moment included countless appointments and wait-lists, as well as confronting all the feelings you have as a parent whose child is falling behind. And he wasn't yet three.

When we finally got his diagnosis, I felt his future open up ahead of him. Now that help was coming, I was sure the hard part was over. 

I learned quickly that the hard part was only just beginning.

Just a year later, I would walk that difficult path again with my daughter. Even as an experienced advocate, round two was a longer and much harder fight without the comforting naiveté about what was coming next.  

Parenting two autistic children is an immense privilege. My son is full of ideas and curiosity, quiet but intentional. Building and experimenting is his art form. My daughter is a fearless adventurer who is hungry for knowledge and leaves a trail of glitter and paint splatters wherever she goes. Despite any challenges their disabilities present, they can and will accomplish anything — if they're afforded the same opportunities as other children. 

So why is advocating for their basic support needs such a relentless, never-ending task?

First, you wait. Then you beg

The wait-list for an autism diagnosis in Edmonton is well over a year, as multiple specialists need to evaluate your child and come to an agreement that the diagnosis fits. 

When you obtain a diagnosis, you can apply for the provincial Family Supports for Children with Disabilities (FSCD) program. This needs-based system provides funding for therapy and other supports at home. After another months-long wait, you begin the intake process, which involves exposing your biggest vulnerabilities and most intimate struggles to a stranger. This caseworker decides not only your child's eligibility for the program but also the severity of their needs. A medical diagnosis doesn't guarantee anything. 

Once approved, you become an employer overnight and must hire and retain the specialists — speech language pathologists, occupational therapists, behavioural consultants — who will help your child.  Many families are left to handle billing and payment on their own, then submit receipts monthly for reimbursement from the government. 

Finally, you enter the rinse-and-repeat cycle of justifying your child's needs each time your contract reaches expiration.

If the caseworker changes what your child is eligible for, you'll enter the dreaded appeals process — months of lying awake and rehearsing arguments to plead your case before a panel of professionals who have never even met your child.

When what's good for one child isn't approved for another

Navigating all of these steps aren't a parent's only concern with Alberta's FSCD program. There is also the fear that the system itself isn't equitable — and that your child may not be deemed worthy of the same support as another child with similar needs.  

In May 2022, an auditor general's report on the FSCD program confirmed parents' worst fears about the inconsistency of the decision-making, along with calling the training program for caseworkers ineffective, citing inconsistent reimbursement rates across the province, and noting that compliance oversight standards weren't being met.

Rajan Sawhney, as minister of community and social services, called for the review of FSCD. Jason Luan was minister when this report was released. Shortly after, Jeremy Nixon took over the portfolio. Any of them had the authority to make policy changes to correct these shortfalls.

Recently, Nixon acknowledged the difficulties navigating the FSCD process, saying the government will take steps later this year to make it easier for families to apply.

But it's not as if his government hasn't been aware of these issues. Over a year ago, Luan told the legislature the wait-list was a legacy of the NDP government and promised to tackle it. 

As a parent of autistic children, a disability where early intervention is proven to offer the best outcomes, it's painful to watch 3,300 kids like mine stuck on the wait-list. It was 914 days from my daughter's referral for assessment to her first FSCD contract.

This raises a question that I fear is rhetorical: Where do our children rank on the priority list?

Navigating this broken system comes with a level of exhaustion many will never understand. FSCD is only a small part of the fight for our children's rights. We fight just as hard for their education and health care, too.

We do it because our kids deserve it. The same way that any other parent would, regardless of the exhaustion, heartache, and personal toll it takes. 

But it feels like no one in power seems to care.

Disability is not a hot topic in this election despite immense advocacy efforts from our community. 

I sincerely hope that the Albertans who are running for the privilege of representing these kids in the legislature are reading this and that it inspires them to start talking about these issues. 

And I hope that Alberta's voters start asking candidates for meaningful inclusive policy to better support our disabled kids. They deserve better than this.

My Priority

What's the one thing that means the most to you in terms of the provincial election and why is that? We recruited over a dozen residents from across Alberta to answer that question. Read their opinion pieces as they're published at cbc.ca/opinionproject.

Keep in mind, these pieces should not be taken as endorsements of any particular political party by either the writers or the CBC. They are expressions of the writers' points of view, and a look at how those opinions came to be formed.