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Bernadette Sumner joined a panel today to share her experiences with Jordan’s Principle. Her son Keanu, 17, has had lifelong health issues, but only started accessing Jordan’s Principle services last year. (CBC) Indigenous families and service providers from across the country are in Winnipeg for the Assembly of First Nations’ first-ever national summit on Jordan’s Principle.

Nearly 1,000 people gathered at the RBC Convention Centre Wednesday to listen and share best practices on the long-fought for principle, which pledges timely access to health services for First Nations children without delays due to jurisdictional squabbles over which level of government will pay for it.

In the morning, four families who have children with disabilities shared their experiences of Jordan’s Principle.

One mother from Waywayseecappo First Nation in Manitoba, Bernadette Sumner, shared her story.

Her son Keanu was born in 2000 with a bone growth disorder known as achondroplasia, which causes dwarfism. He has cervical and lumbar stenosis which has left him permanently paraplegic and using a wheelchair full time. Access to medical needs

"I’ve had to advocate very hard for my son to get any of the needs that he requires on a daily basis," she said.

Getting access to needs like wheelchair lifts, wipes, briefs and gloves has been a challenge.

"Things as simple as getting a bed. He needs a special kind of bed. That was difficult to get," said Sumner.

Now Jordan’s Principle has made life much easier for the family, she said.

For families that are raising First Nations children on- or off-reserve, Sumner recommends looking for available services on the Canadian government website.

"There is a line on the web for Jordan’s Principle. Anybody can access it," she said.

"You can ask questions, there are no needs that are too small that Jordan’s Principle wouldn’t be able to help." Human Rights Tribunal order

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

"We’re grateful when the government just gave us a little drop in the bucket more, but I think we can all agree in this room, that our kids are worth the money," said keynote speaker Cindy Blackstock, executive director of the First Nations Child and Family Caring Society.

"And if they can come up with $4.5 billion for a pipeline, they could afford culturally based equity for our kids." Applauding Jordan During her keynote, she asked the packed room to stand up and applaud the family of Jordan Anderson, for whom the principle is named. Ernest Anderson and the family of Jordan Anderson received a standing ovation from attendees at the AFN’s Jordan’s Principle summit Wednesday. (Lenard Monkman/CBC) The five-year-old boy from Norway House Cree Nation in Manitoba died in a Winnipeg hospital in 2005 without ever being able to return home because of a dispute over who would pay for his home care.Blackstock asked the assembled to never refer to the principle as the abbreviation "JP.""When we use the full name, we are calling Jordan’s spirit and giving him recognition for what he has done for all of us."The summit wraps up on Thursday. with files from Canadian Press

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