Family denied Jordan's Principle funds for Thunder Bay, Ont., girl's autism therapy fears she'll stop talking

Patrick Cully wasn't sure his daughter Scarlet would ever be able to say, "I love you."

But she's now talking, thanks to applied behaviour analysis (ABA) therapy in Thunder Bay, Ont., where the four-year-old lives with her parents, and a $190,000 grant the family says they received under Jordan's Principle, a program run by Indigenous Services Canada (ISC).

Last week, however, the family's request for continued federal coverage — amounting to $217,650 — was denied. 

Without the therapy, her parents fear she could become non-verbal again.

Scarlet, who has autism and has experienced severe speech delays, and her family are members of Batchewana First Nation, an Ojibway community east of Sault Ste. Marie.

Until recently, she had been receiving different therapies five times a week, including speech pathology, physiotherapy, occupational therapy and music therapy. Before this, she used an augmented and alternative communication device. 

"Once she was enrolled full time in ABA therapy, she was able to develop a voice for herself using her own body," Cully said.

Jordan's Principle aims to ensure First Nations children can access government-funded health, social and educational services without being caught between jurisdictional disputes over who should cover it. 

It 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 Canada. 

Cully said the family fought for the funding for nine months; they were told there were delays due to the prorogation of Parliament and the federal election call. 

ISC told the family it is not aware of an existing government service that provides funding for full-time ABA therapy. It suggested that their daughter seek school-based educational support instead.

"If there is no existing government service, as in this case, substantive equality does not apply and there is no discrimination that can arise from how a service or benefit is provided," the ISC says in the decision provided to the family and obtained by CBC News.

"In ISC's view, substantive equality does not require the application of Jordan's Principle in regards to this request."

Scarlet's parents are appealing the decision, on the basis of the years-long waitlist to get her into an Ontario government-funded program.