And, in this case, the words obscene, disgusting and pathetic also come to mind.
That a funding skerfuffle, that the federal and provincial governments cannot agree on who, exactly, is responsible to provide the funding necessary for aboriginal children with special needs to stay at home, with their families, where they belong is sad but perhaps not surprising.
But that this bit of 'government infighting' as it is so colloquially called has resulted in families being told that they may be forced to give up their children because the First Nation can no longer pay for their care and federal and provincial governments can't agree on who should pay is beyond despicable.
For mother Crystal Hart, it means she may have to say good-bye to her daughter, Priscilla.And this four years after another sick child, Jordan River Anderson, spent the entire five years of his young life in a Winnipeg hospital because when doctors were ready to release him to a medical foster home at age two, provincial and federal government officials argued over who should pay for it. Unable to decide who would even cover the cost of a special shower head he needed, let alone anything more substantial. Jordan never left that hospital and eventually died in February, 2005.
"I want her to get the services that she can get," she said while wiping tears from her eyes.
Priscilla Hart has Ritscher-Schinzel Syndrome. She can't speak or eat and needs to be fed through a tube. She requires constant care from a respite worker who looks after Priscilla when her parents go to work.
The Norway House Cree Nation has been paying for those services, which are required by 37 children on the reserve.
However, the band said the money has run out and the services will end May 31.
They would like us to think they learned their lesson.
In December, Members of Parliament vowed never to let such a thing happen again and unanimously voted in favour of a private members motion providing that children should come first when it comes to funding disputes and "should receive the same level of service … as children with similar needs living in similar geographic locations".
Aptly called 'Jordan's Principle', it apparently still isn't working so well.
Despite a letter penned by Minister of Health Tony Clement in 2007 professing that "Indian and Northern Affairs Canada is working closely with Health Canada as well as provincial and First Nations partners to ensure that jurisdictional issues do not impact a child's quality of care" and despite the Premier of Manitoba declaring that his province would be the first to implement Jordan's Principle, les enfants terrible rage on.
In an interview with CTV News, Manitoba Health Minister Keri Irvin Ross said the provincial government is not required to pay for the children's care. "These issues are a federal responsibility," she said. "We need to make sure the federal government is held accountable for it, but we are committed to supporting this community and these children."Most, if not all, provinces have some sort of in home funding to assist families with the extraordinary costs associated with raising a child with special needs. In Nova Scotia, for example, it's known as the Direct Family Support Program. In Manitoba, it goes by the name of the Children's Special Services Program.
But not with any funding. Irvin Ross said the provincial government is offering its support by working with the Norway House Cree Nation in its negotiations with Ottawa. Irvin Ross said the fact that the provincial government is at the negotiating table is "new ground", and is a signal of its support for Jordan's Principle. She said the federal government has yet to respond to numerous letters requesting its involvement in finding a solution.
So why should Aboriginal children with special needs, whatever province they reside in, not have access to the same type of assistance as their non-aboriginal challenged peers? Can anyone say discrimination on the basis of race?
I'm not commenting on whether or not this should be a provincial or federal responsibility given that the federal government has responsibility for "Indians, and Lands reserved for the Indians" by virtue of sec. 90 of the Constitution Act, 1867.
What I am saying is that to deny aboriginal families with special needs children in any province access to the same type of financial assistance that other Canadian families with special needs enjoy sounds an awful like a violation of sec. 15 of the Charter. And of provincial human rights legislation.
Will it take litigation to force the two levels of government to finally get their acts together? And put an end, once and for all, to this needless suffering?