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

Patrick Cully and his partner Jamie McGinnis were overjoyed when their daughter Scarlet, who has autism, began speaking thanks to applied behaviour analysis (ABA) therapy in Thunder Bay, Ont. The four-year-old had been non-verbal for some time, but with the help of therapy and a $190,000 grant under Jordan’s Principle, she found her voice.

Scarlet and her family, who are members of Batchewana First Nation, had been receiving various therapies five times a week before enrolling her full-time in ABA therapy. This decision proved to be life-changing for Scarlet, as she was able to develop her voice using her own body. However, their joy was short-lived when their request for continued federal coverage of $217,650 was denied.

Jordan’s Principle was created to ensure that First Nations children have access to government-funded health, social, and educational services without being caught in jurisdictional disputes. It is based on the concept of substantive equality, recognizing that First Nations children may require additional support to receive the same level of services as other children in Canada.

Despite their fight for funding, the family was told that there is no existing government service that provides funding for full-time ABA therapy. The Indigenous Services Canada (ISC) suggested that Scarlet seek school-based educational support instead. This denial has left Scarlet’s parents fearing that she could regress and become non-verbal again without the therapy.

The family is now appealing the decision, citing the years-long waitlist to get Scarlet into an Ontario government-funded program. The waitlist for provincial programming can be as long as five to seven years, making it difficult for children like Scarlet to access the necessary services in a timely manner.

Alina Cameron, president of the Ontario Autism Coalition, understands the struggles that families like Scarlet’s face. She advocates for better access to services for neurodivergent individuals in the province and emphasizes the importance of collaboration between the provincial and federal governments to reduce wait times for services.

As Scarlet’s parents wait for a reconsideration of their Jordan’s Principle request, they remain hopeful that she will get back into therapy and continue to make progress. Their ultimate hope is for Scarlet to develop a voice to advocate for herself and other First Nations children across the country.

The denial of continued funding for Scarlet’s therapy highlights the challenges that many families face in accessing essential services for children with special needs. It underscores the need for greater collaboration and support from government agencies to ensure that all children, regardless of their background, have access to the care and support they need to thrive.