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Andre Picard in Montreal on September 17, 2010.

John Morstad/The Globe and Mail

Jordan River Anderson, a Cree child, was born with Carey Fineman Ziter Syndrome, a rare muscular disorder that caused an array of complex medical problems.

Jordan spent the first two years of his life in a Winnipeg hospital before doctors decided his condition was stable enough to return home to Norway House First Nation in northern Manitoba.

However, the federal and provincial governments could not agree on who would pay for Jordan's homecare – services that would be expensive but much cheaper than hospital care. The Kafkaesque jurisdictional dispute lasted until Jordan died, in 2005, at age five, never having spent a single day at home with parents.

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In response to the tragedy, Jordan's Principle was created. It states, simply, that First Nations children can access public services on the same terms as other children, regardless of whose jurisdiction they fall under, i.e. whether they are so-called status Indians, or whether they live on or off-reserved. The principle was enshrined in a unanimous vote by members of all parties in the House of Commons in December 2007.

Eight years later, what has changed?

According to a damning new report, entitled "Without denial, delay or disruption : Ensuring First Nations children's access to equitable services through Jordan's Principle," not much.

According to the federal government, there is no problem. In response to the report, Bernard Valcourt, the federal Minister of Aboriginal Affairs and Northern Development issued a statement saying "there are currently no outstanding jurisdictional disputes involving Jordan's Principle in Canada." What the minister does not say is that what Ottawa has done is define the term "dispute" so narrowly that no cases qualify.

It says that only children with multiple disabilities requiring services from a wide variety of providers now qualify for equitable treatment. It argues that Jordan's Principle applies only to children on-reserve – because those off-reserve are not in Ottawa's jurisdiction. Further, when there are disputes between federal departments, saying between Aboriginal Affairs and Health Canada, that's not a dispute. In Ottawa's absurdly narrow definition, both the federal and provincial/territorial government must acknowledge they are at odds or there is, officially at least, no dispute, and hence no recourse for parents.

This is bureaucracy and political mealy-mouthedness at its worse.

What the new report, prepared for the Assembly of First Nations by a bevy of scholars, presents is the polar opposite: Some clear and striking examples of how the spirit of Jordan's Principle is not being respected :

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  • An infant who was unable to breastfeed and allergic to regular formula and Health Canada would not pay for non-allergenic formula;
  • A federal-provincial disagreement (not a dispute, of course) over who would pay for a $9,000 crib that a girl with severe neurological and mobility issues needed to return home to a reserve;
  • A child with severe hearing loss who could not get a hearing aid because he lived on-reserve and the province would only pay if he was off-reserve;
  • A mother who spent three years trying to get homecare for her disabled son after she suffered a stroke and no longer was able to provide care;
  • And there are more, including a case before the Canadian Human Rights Tribunal and another that wended its way all the way up to Federal Court before parents of a child with multiple severe disabilities were able to get him homecare covered.

Parents of children with disabilities, regardless of where they live in this country, have endless, frustrating battles with health and social welfare authorities all the time because, in Canada, there are arbitrary lines about service provision all over the place.

But there is no question First Nations parents and their children have it worse. The red tape is suffocating to the point of being deadly.

Canada's First Peoples routinely get second-class treatment, to borrow the title of a recent report from the Wellesley Institute.

The contempt shown by federal (and to a lesser extent provincial) officials is a shocking example of institutionalized racism and discrimination that has plagued the relationship with First Nations for centuries.

That has to change, and the starting point has to be treating First Nations kids who are the sickest of the sick fairly.

They don't need just compassion. They need justice.

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It's not enough for Parliamentarians to stand up and endorse Jordan's principle – it has to be given life, something Jordan and to many others who have followed have been summarily denied.

André Picard is The Globe's public health columnist.

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