Jordan’s Principle: Why it Matters for Aboriginal Children with Autism and their Families

Dream catcher
by Michael Cnudde (from the Winter 2020 issue of Autism Matters), 3 minute read

Jordan River Anderson, from Norway House Cree Nation in northern Manitoba, was born with complex medical needs. Due to his diagnosis, he spent most of his life in a Winnipeg hospital.  Once he was cleared to return home to receive home care, it became unclear who was responsible for providing it: the federal government due to his Indigenous Status, or the provincial government, which was mandated by the BNA Act to provide health care for all citizens.  The federal and provincial government could not come to an agreement over who was responsible for his in-home medical expenses, and Jordan never had the chance to return home. He died in hospital at age five. 

After Jordan River Anderson’s death, First Nations peoples determined that no child should ever be deprived of the healthcare standards other Canadian children enjoy. After a series of human rights challenges by First Nations in 2017, the Federal Government announced it would fully implement Jordan’s Principle. 

Jordan’s Principle is a child-first and needs-based principle that applies to all First Nations children, whether they live on reserve or off. Briefly stated, it ensures “substantive equality” in that no First Nations child should experience delays in receiving the same public services that are available to other children. 

Ken Robertson, a member of the Bear Clan of the Secwepemc People of British Columbia, notes that in Jordan’s Principle, he sees parallels with the Ontario Autism Program. “I’m seeing, as a parent of three children with ASD (Autism Spectrum Disorder), parallels with the Ontario system when it comes to a more proactive approach to dealing with the disorder,” says  Robertson, who is also a Member of Autism Ontario’s Board of Directors and its Treasurer. 

Stemming from his experience raising children on the spectrum, Robertson was also responsible for the creation of Four Directions Autism, a parents’ support group for off-reserve First Nations, Inuit, Métis, and Non-Status parents who have children on the autism spectrum. “We have to do a better job of helping each other, it’s a long way to come from,” said Robertson. “We, for sure, have a lot of what it takes to do a better job.” 

Because of the dedication to “substantive equity,” Jordan’s Principle opens the door for First Nations families of autistic children to receive the interventions they have been waiting for and have had difficulty accessing. 

Robertson calls Jordan’s Principle a “request-based” system that a parent or caregiver must navigate. This is often done with the help of a Service Coordinator, depending on the province or territory the child resides in. “A parent has to understand they need to have a case… A lot of people work with the family,” said Robertson.  “It’s always difficult that as a parent, you must get a letter from your teacher, doctor, and your chief and council when gathering a support letter for your child.” 

Jordan’s Principle covers a wide range of public health services, such as mental health, medical special education, dental care, physical therapy, medical equipment, physiotherapy, and more, which are culturally-based, and funded on a case-by-case basis. It provides payment from the government that first received the request for medical care, thereby cutting out delays. All First Nations children, aged 0-18 (or 19, depending on the jurisdiction) are eligible. Applications must be submitted by parents or guardians of a First Nations child, or their authorized representative, and First Nations youth aged 16 and older may apply for themselves.  

“Many children are receiving services now where they were not receiving anything,” said Robertson. What it stands for and what it is, we’ve made big strides. We all have a role in creating First Nations services for children. I am happy [Jordan’s Principle] is here.” 

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