Thunder Bay, Ont., family who took fight for girl's autism funding to court to learn if it was worth it

In one week, Patrick Cully will find out whether his five-year-old daughter Scarlet will be able to continue the life-changing therapy she's relied on for more than a year — or if long waitlists and a lack of funding will halt her progress.

On June 23, the Federal Court ordered Indigenous Services Canada (ISC) to issue a decision by July 18 about whether it will continue to fund the therapy for Scarlet, who was diagnosed with Level 2 autism spectrum disorder (ASD).

Scarlet, who lives in Thunder Bay, Ont., with her family, is a member of Batchewana First Nation — an Ojibway community east of Sault Ste.

The three levels of ASD reflect the amount of support a person needs. A diagnosis of Level 2 ASD means Scarlet, who has severe speech delays, has significant challenges in social communication and interaction, and restricted and repetitive behaviours. 

But thanks to full-time applied behaviour analysis (ABA) therapy, Scarlet has gone from using an augmented and alternative communication device to being able to speak on her own. 

Since ISC denied her family's request for further funding under Jordan's Principle, amounting to $217,650, Scarlet's development plan has been up in the air.

"The family's hope is that [by] applying the proper scope of Jordan's Principle, that these supports will be approved and that Scarlet will be able to continue having access to the services that she really needs," said David Taylor, managing partner at Conway Litigation based in Ottawa, and the family's legal representative.

Jordan's Principle was established by the Canadian Human Rights Tribunal to ensure First Nations children don't face gaps, delays or denials in accessing government services because of their identity.

The principle is based on the legal concept of substantive equality — meaning First Nations children may require additional support to receive the same level of services as other children in the country. 

However, multiple families and advocates have expressed concerns about the way Jordan's Principle applications are being processed, in light of operational and eligibility changes to the program were announced in February. Their argument is the government is using too narrow a scope for funding approvals.

In Scarlet's case, the government said it was not aware of an existing government service that provides funding for full-time ABA therapy, which means the concept of substantive equality does not apply.

"Scarlet's case isn't the only one I've seen this rationale [for]," Taylor said. "I've seen it in other denial letters that have come out in the last six or seven months.

"I've been practising law in this area for 10, 11 years, and I've never seen that rationale coming out of the government before this year."

Meanwhile, applications are piling up; ISC says it's dealing with a backlog of about 140,000 cases.