Dozens braved sub-zero temperatures in Winnipeg Tuesday night to remember a First Nations boy who died waiting for the provincial and federal governments to decide who would pay for his health care.
In 2005, five-year-old Jordan River Anderson, from Norway House Cree Nation in Manitoba, died in the midst of a two-year disagreement over who would pay for the home care costs associated with his complex genetic disorder.
"Because of the jurisdictional issues … he ended up dying here, having never gone back home to be with his family," said Manitoba Keewatinowi Okimakanak Grand Chief Sheila North Wilson.
"Jordan's Principle is right now an initiative … that says there should be equal funding for all special-needs kids on First Nations both on and off reserve."
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The child-first principle that says First Nations children are entitled to the help they need, regardless of jurisdictional disputes.
It was adopted by the House of Commons in 2007, and in 2016, the federal government introduced measures to ensure that disputes about which federal departments will pay for care will be resolved after the patient has been treated. Those measures also expanded the number of children the principle applies to.
"We're pushing for long-term funding right now," said North Wilson. "We have to see equitable financing and long-term, sustained financing for children with special needs and beyond that, because disabilities and special needs don't end at 18 years old.… Right now, we don't."
On Tuesday, Anderson's family, people from Norway House Cree Nation, Winnipeg's Bear Clan citizen patrol and North Wilson walked from the Children's Hospital to the Manitoba legislative building, calling on the government to create equity in social services funding for Indigenous families.
North Wilson said while there is optimism that services are now being offered to children in First Nations communities, "there's also a bitter pill to swallow knowing [Jordan] died needlessly and his life might have been prolonged if he had better medical care."
Wilson said another component of caring for children with complex medical needs is inadequate housing on First Nations.
"For us to expect our families to raise their children that are special needs in their own communities and homes is virtually impossible, so we have to look at ways to make it more equitable for everyone in Canada, especially our First Nations children," said North Wilson.