Opinion: Survival or autism therapy? Sask. forces families to choose

The Saskatchewan Party’s plan for autism care fails to address the gap in services for children aged seven to 17, and the funding amounts proposed are not nearly high enough. Brandon Harder / Leader-Post

Saskatchewan is failing miserably in supporting families with autism. The lack of adequate, age-appropriate services is hurting children and their families.

In particular, there is a serious gap in services for low-functioning autistic children over the age of six. In 2016, the Saskatchewan Party promised in its election campaign to introduce individualized funding, an improvement that other provinces are already offering. Nearly two years later, that promise has not come to fruition, and the proposed plan will not come close to meeting the needs of families with autism.  

One in 68 children has autism, and each person with autism is unique, with diverse experiences and abilities. Although my own niece and nephew, ages 11 and 13, are both low-functioning on the autism spectrum, they have different needs. However, they both experience severe conditions of autism including anxiety, cognitive disability, self-injury, sensory problems, extreme repetition, resistance to change and limited verbal communication. They require services and supports that they cannot access.  

When my sister’s children were younger than six, they were eligible to access 10 hours of intervention programming per week. In reality, there was a consistent lack of staffing which meant they did not receive this service. Interventionists are hired primarily as term positions, and tend to be students looking for temporary work to fund their education, not highly trained specialists. Further, needing to introduce children to new interventionists on a regular basis causes significant disruption.

Because autism strategies in Saskatchewan are so heavily focused on children under the age of six, when my sister’s children reached age seven, access to therapy was all but stripped away from them, yet their needs did not disappear. 

My sister did everything any concerned parent would do — she sought out applied behavioural analysis and intensive behavioural intervention therapies on her own. She hired a company to provide assessments, train staff, and create programs. The therapy her children received was consistent and effective, but it was not sustainable – there came a point when she simply could not afford it anymore. To provide the care that her children require would have cost $3,200 per month, per child. That amounts to $76,800 per year for two children, which is more than the average Canadian household income.

Because of this high cost, my sister and her husband were put in a position of choosing between their livelihoods and giving their children the therapy they need. Shelter, food and clothing are their top priority, but the decision to discontinue therapy was heartbreaking. 

The services my niece and nephew could potentially access today are funded in part through Saskatchewan’s Cognitive Disability Flexible Funding, which is measured against household income. The income threshold charts are designed for families with one autistic child, and even families with the highest needs have funding reduced when their household income reaches $49,000.

It is also nearly impossible for families like my sister’s to have two working parents. She has practically been forced to stay at home to support her children, as specialized childcare is highly difficult to obtain. The respite care she receives amounts to two hours per week of babysitting provided by teenagers on the weekend.

Although her children are eligible for special services in school settings, the province has significantly reduced funding to those services, as well. My sister struggles to maintain paid employment because she is often called to pick up her daughter from school, due to anxiety-induced behavioural issues stemming from her autism. 

The current system is placing an unfair burden on Saskatchewan families to support the needs of their children on their own, forcing them to choose between basic survival and therapy. Individualized funding will enable families to choose which services to utilize, instead of relying on a referral from their consultant to less-effective services.

However, the Sask. Party’s plan fails to address the gap in services for children aged seven to 17, and the funding amounts proposed are not nearly high enough.

Without improvements to the supports autism families receive, children like my niece and nephew will continue to be left behind.