Uncaring, Unprincipled, Unacceptable

That I wrote about this very issue two years ago is a very sad commentary:

That a funding kerfuffle, 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 sadly, 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.

And if it was unacceptable then, what is it now?

Two years ago, I questioned where the  Nova Scotia government stood when it comes to Jordan's Principle.  I guess now we have our answer.

Jeremy Meawasige loves music, sunny days at the beach and his mother.

But Jeremy has extensive physical and mental disabilities. And the failure to resolve a dispute between the Pictou Landing First Nation and the federal government over how his care is paid for may result in his institutionalization.

"It’ll be over my dead body," said Maurina Beadle of the possibility her 16-year-old son might be institutionalized.

Jeremy is diagnosed with autism, hydrocephalus, cerebral palsy and spinal curvature.

For 15 years, Beadle provided 24-hour care for her son. She spoon fed him pureed foods, carried him, prevented his self-destructive tendencies and changed his diapers.

That, in itself, by itself, is unacceptable in my mind. That a parent should single-handedly have to provide 24-hour care for their child for all those years anywhere in Canada is quite simply unacceptable. 

Home care? In home support?  Direct Family Support? Hello, is anybody home out there?

But as if that wasn't bad enough, last year Jeremy's mother had a stroke.  Fortunately, the Pictou Landing First Nation stepped up to the plate, providing three hours of home care every day.  Last year that cost the First Nation $82,000.

But now, even as the cost decreases due to his mother being out of a wheelchair and now able to walk with the assistance of a cane, she is being told that her son might have to be institutionalized because no level of government is willing to pick up the cost of a small amount of home care. Home care to which Jeremy would be more than entitled to were he to live off-reserve in this Province.*

Jordan's Principle (named for Jordan Anderson, born in 1999 on a northern Manitoba reserve with a complex genetic disorder that required specialized care who died at age four after spending his entire life in an institutional setting, far from his family's community because the provincial and federal governments argued over who would foot the bill for his care) was unanimously passed by the Parliament of Canada in December, 2007.

It is referred to as "a child first principle to resolving jurisdictional disputes within and between federal and provincial/territorial governments" and provides that where a jurisdictional dispute arises around government services to a Status Indian or Inuit child, the government department of first contact will pay for the service to the child without delay or disruption. The paying government can then refer the matter to intergovernmental processes to pursue repayment of the expense.

Sounds fair, doesn't it?

And yet although $11 million in federal funding has been set aside for First Nations children for when just such a dispute arises, Jeremy's family was told that in order to access Jordan’s Principle, they had to prove Jeremy was being denied what Continuing Care calls the normative level of care that he would be entitled to if he lived off reserve.  After waiting five months for that assessment, the family  was told by the province that off-reserve Jeremy would receive $2,200 a month for care, the supposedly capped limit above which a child would be placed in an institution. The federal government apparently agreed with Nova Scotia’s assessment, finding this to be the "normal level of care"  and, thus, "no jurisdiction issues" were at play, meaning Jordan’s Principle would not apply.

One of the many "kickers" to this suddenly cordial relationship between the two levels of government where they miraculously manage to see eye-to-eye on this issue being, however, that the supposedly capped amount of $2,200 is not legislated and, as we discussed way back in the way back, although government departments are certainly free to develop policy, they are legally obligated to consider individual circumstances and cannot simply apply policy in a blanket manner. As they are attempting to do with Jeremy.

Unfortunately, this is not an uncommon occurrence - in one sample of only 12 First Nations child and family service agencies in Canada in a one-year period there were nearly 400 children caught in such jurisdictional disputes.

Why?

As of 2009, although almost all provinces and territories had adopted Jordan’s Principle in principle, none had developed an implementation plan (a process setting out how the negotiations between the provincial and federal government to determine which level of government would ultimately be on the hook would work).

And although New Brunswick formally adopted Jordan’s Principle in legislation in 2010, as of June, 2010, although Manitoba had developed Terms of Reference for the Committee tasked with the implementation of Jordan’s principle and was said to be "currently working towards implementation", the Jordan’s Principle Implementation Act has twice failed to pass in the provincial Legislature and none of Nova Scotia, British Columbia, Alberta or Ontario had implemented Jordan’s Principle in policy or practice.

Obviously this issue is simply not going to go away soon (if at all).

So what can/has been done on a legal basis?

In 2007, the Assembly of First Nations and the First Nations Child and Family Caring Society filed a complaint with the Canadian Human Rights Commission alleging that Canada is racially discriminating against First Nations children by providing less child welfare funding, and thus benefit, on reserves.

Unfortunately, in March of this year, that complaint was dismissed on a preliminary motion (meaning that it was dismissed without any consideration of the actual merits of the claim) on the basis that in assessing whether or not discrimination has occurred under the Human Rights Act, two different service providers (Indian and Northern Affairs Canada and the provinces) cannot be compared to each other. In other words, the Canadian Human Rights Commission said that in order to determine whether "adverse discrimination" exists, one has to compare the experience of the "alleged victims" with that of someone else receiving those same services from the same provider.

The First Nations Child and Family Caring Society has applied in Federal Court for judicial review of that decision.

And in the particular case of Jeremy Meawasige, his mother and the First Nation Band have jointly filed for judicial review of the federal government's decision that Jeremy is entitled to no more than $2,200 per month, asserting that the government is failing to provide adequate and comparable health care services to  Jeremy and that this failure to provide comparable services is contrary to Jordan's Principle.

And although I hold out hope for both these judicial review applications, I still can't help but wish that someone was challenging this Province on that supposedly capped limit of $2,200 per child per month.

Actually, first I would like to know where exactly this particular policy is to be found.

The relevant portions of the Department of Community Services' Direct Family Benefit program policy read as follows:

6.3 Exceptional Circumstances for Respite Funding over $2200.00

6.3.1 It is recognized that in certain situations the assessed unmet needs of the family in the DFS Program may determine that additional support funding is required on an ongoing basis to enable the family unit to remain intact.

6.3.2 The following criteria will be considered when assessing, identifying and approving instances of exceptional circumstances where respite funding above $2200.00 per month is necessary:

• an Individual has extraordinary support needs to the extent that they are reliant on others for all aspects of their support;
• an Individual has extreme behaviours that result in high levels of stress within the family unit;
• there is no appropriate day program for an adult Individual due to behaviour or health related issues;
• a single care giver has sole responsibility for supporting the family member with a disability; and
• in those cases where there may be end of life issues for either the Individual or the care giver.

6.4 Guideline: Extraordinary Circumstances Additional Short-term Respite

6.4.1 It is recognized that in certain situations the assessed unmet needs of the family in the DFS Program may increase. Additional support funding may be required on a temporary basis.

6.4.2 Temporary respite funding may be considered when:

• the care giver is sick, recovering from surgery, or otherwise unable to continue regular support responsibilities;
• a family emergency, i.e. death in the family, requires the family to be unavailable for regular support responsibilities;
• a short-term deterioration in the mental or physical health of the care giver or Individual;
• the family and / or Individual are experiencing unusual short-term distress.

Not only shouldn't there be too much difficulty in fitting Jeremy's family into the short-term respite requirements based on his mother's health but it would appear, at least to me, that he would also easily fall within the provisions for extraordinary circumstances requiring increased respite on an ongoing basis.  Which would mean that there should be no capped limit on provincial funding in play for Jeremy under DCS funding.

But noting that reference was made in the media to the necessity of obtaining the approval of the Minister of Health before an assessment could be made on the reserve, I turned to the Department of Health's Home Care Policy Manual, where I can find no mention of a monthly limit of $2,200, only reference to the maximum amount of home support hours per 28 day service plan being 100 and the maximum amount of home nursing visits per 28 day service plan being 60.

And although the Policy states that the monthly maximum service limits will not apply only if the the client meets the palliative home care criteria or is on the wait list for placement in a long term care facility and is being supported in the community because there is no suitable bed available within 100 kilometers of their community (which I would submit is also eminently challengable if applied across the board without exception), I still fail to see any mention of a monthly maximum of $2,200.

Meaning that, even though I'm confident the lawyers filing the judicial review application on behalf of Jeremy know exactly what government policy contains the $2,200 per month cap, I have to wonder - whazzup with that?

~ ~ ~ ~ ~ ~

* Having started this blawg post two days ago and only getting back to attempt to finish it today, it would seem that the story has evolved considerably from the original news piece, which had not clearly stated that the Province was prepared to pony up any funds to this piece, which made the chronology of events much clearer.  Note to self: if you're going to start something, you really must finish it the same day.

** You can find an excellent explanation of how events unfolded from a legal and political point of view, starting with the story of Jordan Anderson, through the unsuccessful efforts of a Manitoba Liberal MLA to bring legislation forward to implement Jordan's Principle in that Province and ending with the rare examples where Jordan's Principle (legislated or not) appears to have actually worked as intended (including one for children whose parents were serving in the military.)