Indigenous families recount struggle for health before principle adopted

WINNIPEG — First Nation families say they struggled to get wheelchairs, beds and other health-care services for their children before the federal government adopted “Jordan’s Principle.”

The principle, which requires kids get access to services without delays caused by jurisdictional issues, is named after Jordan River Anderson. The five-year-old boy from Norway House Cree Nation in Manitoba died in a Winnipeg hospital without being able to go home because of a dispute over who would pay for his health care.

Bernadette Sumner said her son Keanu, 17, was falling through the cracks for most of his life because the family lives on the Waywayseecappo First Nation in Manitoba. Keanu was born with achondroplasia — a bone-growth disorder that means he has short limbs and a small torso — and lumbar stenosis, which left him paralyzed.

“There was no access to many things that he needs on a daily basis, mainly a wheelchair, secondly a lift, because dad and I were lifting him,” she said at the first annual Jordan’s Principle summit in Winnipeg on Wednesday.

The Sumner family struggled to get through each day and got used to filing paperwork, desperately searching for funding and help for Keanu. For years, the family looked for ways to get the special hospital bed and wheelchair he needed to avoid developing bed sores, an air conditioner because he needs to stay cool and a bathtub chair.

But after Jordan’s Principle, everything changed.

Although a motion supporting Jordan’s Principle passed unanimously in the House of Commons in 2007, it was only partially implemented.

Seven years later, the First Nation Caring Society and Amnesty International argued before the Canadian Human Rights Tribunal, saying the federal government was being discriminatory. The tribunal agreed in 2016, expanding the definition of the principle and ordering Ottawa to act on it immediately.

Families said it has been a game changer.

If it wasn’t for Jordan River Anderson’s family, Carolyn Buffalo said, her disabled child and many like him would not be getting the help they need. “Because of him, the world is a better place. He changed the world,” she said.