Media.Knet.Ca

This particular editorial, as well as the CBC story below, is very timely as we sadly report the untimely and probably preventable deaths of two more friends and residents of Health Canada's "Sioux Lookout Health Zone". Cameron Sainnawap of Kitchenuhmaykoosib Inninuwug passed away earlier this week. Last night, Julie Kejick of Lac Seul First Nation also passed away. 

Editorial from Canadian Medical Association Journal ...
CMAJ • August 14, 2007; 177 (4). doi:10.1503/cmaj.070950.

Jordan's Principle, governments' paralysis
Noni MacDonald, MD MSc* and Amir Attaran, LLB PhD

Section Editor, Public Health, CMAJ* Canada Research Chair in Law, Population Health and Global Development Policy University of Ottawa, Ottawa, Ont. For the Editorial-Writing Team (Paul C. Hébert, Matthew Stanbrook, Barbara Sibbald and Ken Flegel)

Children are vulnerable members of our society. They are voiceless in decision-making, subject to the judgments and actions of others. First Nations people are also vulnerable — victims of ill-will and broken promises and suffering from the worst social, economic and health conditions in Canada.

So imagine the unenviable situation to be a First Nations child, very sick and living on a reserve where there are minimal children's services.

"Jordan" was a child with a rare neuromuscular disorder born in 1999 on the Norway House Cree Nation reserve in northern Manitoba.1 His complex medical needs could not be managed there, so he was referred for treatment to Winnipeg. As his illness progressed, he became wheelchair-bound, ventilator dependent and unable to speak.

By 2001, Jordan's hospital caregivers decided to discharge him to specialized foster home care near to his home reserve. Both his physicians and family agreed that this decision was best for Jordan. Then, the bureaucrats ruined it. The federal and Manitoba governments could not agree on who was financially responsible for Jordan's care. Bickering erupted: over foster care, transportation to clinic — even over tiny items, like a showerhead. For over 2 years, warring bureaucrats left no stone unthrown.

This intergovernmental dispute only stopped when — you guessed it — Jordan died from his underlying disease in a Winnipeg hospital, far from his family and community. No one has been held accountable for blocking Jordan's care closer to home.

Canada is a party to the 1989 United Nations Convention on the Rights of the Child, a treaty that states: "In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration."2

Jordan's interests fell a distant second; intergovernmental squabbling over the duty to pay came first. Canada contravened this treaty.

Canada's Charter of Rights and Freedoms forbids discrimination. Many of the services Jordan needed would be paid for without question for a white Manitoban, or off-reserve Aboriginal resident. It was Jordan's living on-reserve that caused the bureaucracy to choke. That is discrimination pure and simple.

Canada's constitution recognizes and affirms Aboriginal and treaty rights. The Supreme Court in 1984 declared "the Government has the responsibility to act in a fiduciary capacity with respect to aboriginal peoples," in a relationship that "is trust-like, rather than adversarial." One wonders how this obligation was met by the bureaucrats who allowed Jordan to live and then die in the Winnipeg hospital far from his loved ones, while the adversarial turf war raged.

Other First Nations children with complex medical needs are frequently caught in this bureaucratic nightmare. Last March, the families of 37 profoundly disabled Norway House Cree Nation children were told that funds for further health professional and support services in their community would cease.3 Families wanting health care for their children were forced to send them away — likely forever.

Those who defend the status quo say that Canada's geography makes health care delivery for complex chronic illness difficult and costly. The same critics usually omit to mention that Canada's geography — its petroleum, timber, minerals and waterways, much of it within First Nations' traditional territory — also makes it wealthy. Geography is no excuse for the pusillanimous, inequitable distribution of wealth, such that advanced care exists only in the south and First Nations children, parents and communities endure psychological and cultural stress to access it. The point isn't what portion of the cost the federal, territorial and provincial governments each pay but, rather, that the wrangling stop so that the right care, at the right place, at the right times can be provided for people on First Nations' reserves.

Today the CMAJ endorses what is called "Jordan's Principle" (www.fncfcs.com/more/jordansPrinciple.php). Consistent with the Convention on the Rights of the Child, we endorse putting the medical needs of First Nations' children first. We also make this recommendation: that if the provincial, territorial and federal governments ignore Jordan's Principle and entangle themselves in financial or jurisdictional battles first, then governments deserve to be sued, in the most winnable test case that First Nations' advocates can manage. Let the courts decide, if the bureaucrats and politicians continue to refuse to find a timely resolution.

Footnotes

Acknowledgements: We acknowledge the contributions to this editorial of Cindy Blackstock MM, Executive Director, First Nations Child and Family Caring Society of Canada, Ottawa; Bradford W. Morse LLM, Professor of Law, University of Ottawa; and Jeff Reading PhD PHS, Scientific Director, CIHR Institute for Aboriginal Peoples' Health, University of Victoria, Victoria.

REFERENCES

• Lavallee TL. Honouring Jordan: Putting First Nations children first and funding fights second. J Paediatr Child Health 2005;10:527-9.
• United Nations Convention on the Rights of the Child. Available: www.ohchr.org/english/law/pdf/crc.pdf (accessed 2007 Jul 9).
• Assembly of Manitoba Chiefs. Disabled children lose services because governments won't pay. Available: www.manitobachiefs.com/press/norway-house.pdf (accessed 2007 June 18).

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From CBC News online ...

Sue for fair medical treatment, CMA editorial tells First Nations
August 16, 2007

First Nation governments should sue to receive fair medical treatment, said an editorial published Tuesday in the Canadian Medical Association Journal.

"The bleeding sore on Canada and its human rights record is how very little consideration First Nations get for basic needs," said editorial co-author and University of Ottawa law professor Amir Attaran.

In the editorial titled "Jordon's Principle, governments' paralysis," Attan and co-writer Dr. Noni MacDonald urged the federal, provincial and territorial governments to pay medical treatment bills for First Nations children, then argue over who foots the tab once treatment is given.

This concept is called "Jordan's Principle" after a Manitoba child who had a rare neuromuscular disorder and died in a Winnipeg hospital at the age of four while the federal and Manitoban governments argued over who would pay his medical bills.

Attaran said it's a shame that governments argue over who should pay for complex medical expenses while aboriginal children die and their families suffer.

He cited the case of McKenzie Olsen, a 12-year-old boy from the Nacho Nyak Dun First Nation in Mayo, Yukon.

Olsen has Hurler-Scheie Syndrome, a disease causing toxins to build up in cells, leading to progressive damage to bones, joints, the heart and respiratory and central nervous systems. His treatments cost up to $17,000 a week, and the province of Alberta, where Olsen now lives, will only pay 40 per cent of the costs, claiming that his medical bills are a federal responsibility.

Attaran said that First Nation families like the Olsens need to take the issue to court in order to prevent the deaths of aboriginal children from a lack of medical treatment while governments squabble over the bills. 

"[MacKenzie] and his family are hostages to the indifference and inefficiencies of bureaucratic processes, and I expect they're only going to get a final decision on McKenzie's treatment if they go all the way to a trial and judgment," he said.

If the governments are unsure of their responsibility, Attaran said, they merely need to look at the Charter of Human Rights and Freedoms, which guarantees equal treatment for all Canadians, and let common sense prevail.

In an interview with CBC Radio he issued a warning to government officials about treating First Nation children differently.

Attaran said, "Anyone listening to the broadcast who works for the territorial government, the provincial one, the federal one, mark these words well, it's the advice of the leading medical journal in Canada that you'll be sued if you do not provide the treatment that First Nation children require."