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.
Jordan’s Principle stems from a human rights complaint filed by the Assembly of First Nations and the First Nations Family and Caring Society in 2007.
It is named after Jordan River Anderson, a five-year-old boy from Norway House Cree Nation in northern Manitoba who died in 2005 in the midst of a two-year battle between the province and Ottawa over who would pay for his care.
Following a non-compliance motion filed early last year, the Canadian Human Rights Tribunal ruled in December that the federal government needed to address the backlog of 140,000 Jordan’s Principle requests.
This resulted in sweeping changes to the program that were announced in February — several First Nations chiefs and advocates have described the changes as cutbacks in services.
In an emailed statement to CBC News, a spokesperson for ISC said they could not comment on a specific Jordan’s Principle decision.
“We are working to ensure long-term sustainability, keep pace with increased demand, and expedite decision-making,” said spokesperson Ryan Tindall.
“To ensure resources are used in line with the purpose of Jordan’s Principle, requests must be directly related to meeting the requirements of substantive equality for First Nations children.”
Requests must include:
Requests must provide supporting documentation from a professional; Scarlet’s family provided a copy of a supporting letter from Ignite Behaviour Consulting Inc. in Thunder Bay to CBC News.
In Scarlet’s case, while she is signed up with Autism Ontario — which receives funding from the provincial Ministry of Children, Community and Social Services — the waitlist to get into the program could be between five and seven years, Cully said.
“Our belief was that due to the waitlist of the provincial government and the Autism Ontario program, we would still have access to federal funding through the Jordan’s Principle program, to alleviate the stress and hardship on the family and kind of mitigate these jurisdictional disputes,” he said.
Alina Cameron is president of the Ontario Autism Coalition (OAC), which advocates for better access to services for neurodivergent people in the province.
Cameron, who lives in Thunder Bay, draws on her own experiences raising a daughter who has autism.
There were more than 79,000 children registered with the Ontario Autism Program in February, according to a freedom-of-information request filed by the OAC. Of these, only 17,650 had signed agreements for funding.
“My daughter waited five years. By the time she got her core clinical funding, she was almost eight years old,” Cameron said.
The backlog means many children aren’t able to receive services during their early developmental window, she said. It also means that by the time they’re at the top of the list, they’re getting less money, since different age brackets receive varying amounts of funding.
For families like Scarlet’s, losing access to “something so amazing” is heart-wrenching, she said.
“I’ve been in this situation where there’s something out there that can help your child but it is extremely expensive,” Cameron said. “Families are so hard on themselves when it comes to this aspect. It is very hard to live with this.”
She said she wants to see more collaboration between the provincial and federal governments when it comes to reducing wait times for services.
“I’d ask the people who are in charge of these bureaucratic systems to remember that all those numbers on your spreadsheets are children.”
Back at Scarlet’s house, her parents are doing what they can as they wait to see if their Jordan’s Principle request is reconsidered.
“We just aren’t cutting it in terms of being able to provide her with the same level of support,” Cully said. “Of course, we’re trying to replicate it in the house, but we’re seeing a bit of regression, and we’re seeing a bit of struggle and difficulties.”
Still, they remain hopeful Scarlet will get back into therapy and continue to make progress.
“My hope one day is that my daughter will develop a voice to advocate for herself and other First Nations children across the country,” said Cully.
