Mom rebukes province over age cutoff for autism funding
Lacy Sletten’s son turned seven in May — a birthday that came a few months too late for him to qualify for individualized funding for autism spectrum disorder (ASD).
Earlier this month, the provincial government announced parents could apply for individualized funding for children under six years who have been diagnosed with ASD.
Eligible families can receive $4,000 to purchase services that best suit their child’s individual needs.
If the government had implemented its 2016 election promise to introduce annual funding of $4,000 for children under six for ASD, Ethan would have qualified, Sletten said.
“Because of the promise, we’d expected that to come into play in 2017 and it didn’t,” she said.
In a recent interview, Health Minister Jim Reiter said funding for autism in the 2017 provincial budget was deferred one year because of the province’s fiscal situation.
Sletten was hoping the funding would be retroactive to 2017, but it isn’t.
“Once children turn school age, they no longer receive services from the health region,” she said. “Through the Early Childhood Intervention Program (ECIP) we received services until Ethan was in kindergarten and the same thing with the Kinsmen Children’s Centre (KCC) in Saskatoon.”
At school, Ethan has four educational assistants who rotate daily. Each EA is with Ethan for roughly one class and a recess. However, the child has not seen a school division speech language pathologist (SLP) since 2016.
Sletten is concerned because the SLP is supposed to oversee the work EAS do with Ethan, but they have never seen a report.
Her son’s last report from an occupational therapist (OT) at the school was in December 2016. Sletten believes Ethan was assessed once in 2017, but there is no report. “During his whole Grade 1 year he received nothing — no overseeing from an OT or SLP,” Sletten said.
Adding to her anguish is that EAS have been cut back at the school.
The family is further disadvantaged because they live in Luseland — a rural area about two hours west of Saskatoon.
“Services are hard to access and we receive minimum amounts from other agencies to access those services,” Sletten said. “Autism does not end at six years of age. This is a lifelong disability.”
She wonders if the provincial government’s other campaign promises will be honoured.
They included increasing funding to $8,000 annually by 2019-20 and a targeted goal of annual funding of $15,000 to $18,000 per year for children under six and $4,800 for school-aged children under 18.
Arden Fiala, president of SaskFEAT — Saskatchewan Families for Effective Autism Treatment — also questions the government’s intentions. She notes that when June Draude was social services minister she was quoted as saying: “The commitment we made in the last election campaign (2011) was to become the best place in Canada for people with disabilities to live.”
For more than 17 years, SaskFEAT has been advocating for better services and support for people living with ASD, their families and their communities.
“Not much has changed,” Fiala said. “The reality in Saskatchewan today is in stark contrast to that quote. Access to best-practice treatments for ASD is limited, and for most individuals with ASD within our province, there simply are no best-practice treatments available.”
What has changed is estimates of the prevalence of ASD.
Fiala referred to the Centres for Disease Control and Prevention’s most recent report, which estimates one in every 68 children is born with ASD. When Fiala started her advocacy work, the prevalence was one in 350.
For more than a decade, she’s been involved with the Autism Society of Canada and Autism Canada and looks at ASD services provided in Saskatchewan through a national lens.
“There is continued inequality of services and supports across all age groups and across Saskatchewan,” she said.
Fiala is concerned Saskatchewan has no standardized protocols for diagnosis, treatment and/or professional qualifications.
“Specific provincial standards for accessibility and best practices in the field of autism must be in place,” she said.
Her other concerns centre on the shortage of diagnostic expertise in the field of ASD in Saskatchewan, which results in families having long waits before their children are diagnosed.
“What’s the government doing to build capacity in Saskatchewan for evidence-based services and supports, especially in the rural and northern areas?” Fiala asked. “We do not have the capacity in this province.”
She questions if the Saskatchewan government will expand the individualized funding to ensure lifespan support for individuals with ASD older than 17.
“It is crucial to remember that children living with autism grow up to become adults living with autism,” Fiala said. “They are citizens with a need for continuous support that evolves over their entire lives.”