Families often faced with choice of giving up their disabled children

OTTAWA — A coalition of national Aboriginal and health organizations is calling on federal and provincial governments to end the jurisdictional squabbling that results in hundreds of Aboriginal children and youth being denied essential health services that are available to other Canadian children.  

The organizations are urging governments to adopt “Jordan’s Principle,” a child-first approach to resolving jurisdictional disputes involving the care of First Nations children.  

“Health care professionals know all too well the need for Jordan’s Principle,” said Dr. Kent Saylor, a paediatrician in Kahnawake, Que., and Chair of the Canadian Paediatric Society’s First Nations and Inuit Health Committee. “We see families struggling to get the services that their children are entitled to, while governments argue over who will pay the bill.”  

Under Jordan’s Principle, when a jurisdictional dispute arises between two government parties (provincial/territorial or federal) over payment for services for an on-reserve First Nations child that are available to other Canadian children, the government of first contact must pay for the services without delay or disruption. It can then refer the matter to jurisdictional dispute mechanisms. This meets the need of the child while still allowing a jurisdictional dispute to be resolved.  

Although the federal government covers health care services for Status Indians on reserve, the funding for children with disabilities falls short of what children off-reserve receive, and provincial governments don’t cover the difference. A recent research report in Manitoba found that First Nations parents often place their children with disabilities in child welfare care so they can be sure the children get access to the specialized services they need.    

The urgent need for Jordan’s Principle is unfolding in Norway House Cree Nation, Manitoba, where 37 profoundly disabled children are currently at risk of losing physician-recommended services such as occupational and speech therapy. Although provincial and federal governments should be covering the costs, they are arguing over jurisdiction. Norway House Cree Nation has stepped in to use limited community funding to ensure the children receive the services. But the community can’t be certain how long it can afford to foot the bill for the provincial and federal governments.  

“These children are unfairly caught in a dispute over government jurisdiction,” said Cindy Blackstock, Executive Director of the First Nations Child and Family Caring Society of Canada. “I applaud Norway House Cree Nation for being the first government to implement Jordan’s Principle – sometimes First Nations have to set the example of just, equitable and compassionate governance for the provinces and federal government to follow.”  

Jordan’s Principle honours a young First Nations child from Norway House, Man., who was born with complex medical needs and languished in hospital for two years while the federal and provincial governments argued over who would pay for his at-home care. Jordan died in hospital, having never spent a day in a family home.  

The organizations advocating for Jordan’s Principle include the Assembly of First Nations, Canadian Paediatric Society, the First Nations Child and Family Caring Society of Canada, the National Indian & Inuit Community Health Representatives Organization, Inuit Tapiriit Kanatami and Pauktuutit Inuit Women of Canada. They are part of a coalition known as Many Hands, One Dream, which is working to build a new vision of health for First Nations, Inuit and Métis children and youth.  

Inuit Tapiriit Kanatami, the national Inuit association of Canada, says all children should have access to health care, without having to be removed from family and culture, regardless of where they live.  

Martha Greig, Chair of Pauktuutit Inuit Women of Canada, said, “While Inuit children do not face these jurisdictional issues, Pauktuutit agrees with a ‘child-first’ approach and recognizes that all Canadian children are entitled to fair and equitable health care.”  

In all, nearly 300 organizations across Canada have expressed their support for Jordan’s Principle, including the Assembly of Manitoba Chiefs and Norway House Cree Nation.