Gaps remain for First Nations special-needs kids

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This article was published 03/02/2011 (5720 days ago), so information in it may no longer be current.

On the sixth anniversary of his death, governments haven’t lived up to Jordan’s Principle, their promise to help disabled First Nations kids first and figure out who has to pay later, parents and leaders say.

“It’ll come through,” said Norway House’s Ernest Anderson, whose five-year-old son Jordan died in 2005. The Andersons had to give up their profoundly disabled boy to Child and Family Services so he could receive care in Winnipeg, 800 kilometres away.

Jordan lived in hospital without friends or family nearby while federal and provincial representatives argued for more than two years about who would cover the costs of the medically approved foster family that waited to take him. Jordan never left Children’s Hospital. He was five when he died Feb. 2, 2005. His dad said he’s optimistic help is coming for kids like Jordan — someday.

In 2008, the province and the federal government announced they’d reached an agreement to implement Jordan’s Principle. First Nations kids with multiple disabilities would receive care without delays or disruptions caused by wrangling over jurisdiction, they said.

Two years later, eight-year-old Dewey Pruden’s mom on Pinaymootang First Nation said she’s still waiting.

“I want all children who are special-needs to have the same, equal opportunities and the same, equal treatment,” said Harriet Sumner-Pruden. She travelled 240 kilometres from the reserve formerly known as Fairford northwest of Winnipeg to attend a press conference put on by the Assembly of Manitoba Chiefs Wednesday.

Dewey, who has partial paralysis, a congenital condition that causes seizures, autism, glaucoma and is diaper-dependant, can only attend school for 21/2 hours a day, his mom said. That’s because of a cap on Indian and Northern Affairs Canada funding for the assistant he needs in school.

“I want my son in school full-time,” said Sumner-Pruden. She filed a human rights complaint in April about the lack of services available and doesn’t want to have to move to Winnipeg to get them.

“I’ve known people who’ve done that. But who’s going to speak on behalf of all the other parents?” Like many First Nations parents with disabled kids, she wants to keep her son at home with his family and part of the community, she said.

Other provinces, including B.C. and Ontario, have promised to follow Jordan’s Principle — known in social work lingo as a “child-first” approach. Manitoba Grand Chief Ron Evans challenged Jordan’s province to lead the way in taking action.

“Let it be implemented in his homeland first.”

The province says it hasn’t had another case like Jordan’s to date. If it did, there is a protocol in place with the federal government to resolve any disputes over funding existing services, said Charlene Paquin, assistant deputy minister of Manitoba Family Services and Consumer Affairs.

She said Jordan’s Principle has expanded into an issue of the availability of services.

“I certainly appreciate the frustration around service delivery,” said Paquin, who couldn’t comment on individual cases. The federal government is responsible for services on First Nations and the province is responsible for services off-reserve. The two levels of government are meeting regularly to figure out how to work together to improve service delivery to First Nations, said Paquin.

“A lot of that is about responsibility,” she said. “We’re trying to figure out how to do things… There are very complex funding issues and service-delivery issues.”

The Manitoba chiefs say the feds and the province are moving too slowly and they’re not being consulted enough. They called on all Manitobans to lobby their MPs and MLAs to make sure children on First Nations receive the services they need.

carol.sanders@freepress.mb.ca