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PICTOU LANDING, NS—Maurina Beadle doesn’t sleep at night. She naps. While her son Jeremy sleeps on a bed attached to her own, Beadle has trained herself to be constantly alert.
“After 16 years, your body gets used to it,” she says.
Jeremy Beadle Meawasige, known as Kicking Bear in his hometown of Pictou Landing First Nation in Nova Scotia, has been diagnosed with hydrocephalus, cerebral palsy, spinal curvature and autism. He needs to be fed, changed and dressed. He can’t walk by himself. He frequently visits the hospital and has undergone numerous operations.
Beadle was always the sole caregiver for the 16-year-old. Their lives changed dramatically last May, when she suffered a double stroke that left her incontinent, in a wheelchair and unable to use her hands. "Doctors said I would never walk again," says Beadle.
"Maurina never had any help," says Philippa Pictou, Health Director for Pictou Landing First Nation, who has known the family for years. She said that after Beadle's stroke, "she worked really hard to regain capacity with writing exercises—hours and hours. She was determined to walk again."
Maurina Beadle walks with a cane and opts for the lighter plates in the cupboard to serve dinner. Her strong features and wit more than compensate for her modest stature.
She now accepts day workers into her home to help with housekeeping and caring for her son, although she says this was difficult for her at first.
"Maurina is committed to caring for Jeremy," says Pictou, but when the stroke made it impossible for Beadle to do so by herself, the health director began the process of accessing an $11 million federal fund for First Nations children with complex disabilities.
The fund was initiated by Health Canada in response to Jordan's Principle, a "child-first" policy designed to ensure First Nations children do not suffer delays or disruptions in essential health services if the funding source for their care becomes unclear.
Pictou’s inquiry was stymied first at the federal level, which is responsible for First Nations health care. Then it was stymied by the province, which controls most of, arguably the best, and certainly the most readily available health services.
In spite of Pictou and Beadle’s diligence, it took five months for any level of government to offer Jeremy health services. Jeremy's case is just one more added to the astounding statistics that show how the most vulnerable people in Canada—First Nations children—have the greatest difficulty receiving the health care they need.
A year-and-a-half later, Jeremy’s future care remains unsettled, and the family has decided to take the federal government to court.
"Through all this," says Beadle, as she lifts her right ankle on top of her left knee and lights a cigarette, "I think about the things that nobody saw, the years of seeing him puke, seeing him take off his diaper and play with his..." She trails off. "And I had to put him in a tub with a little water so he could play around—not too much water—while I cleaned up."
Jeremy sits on the couch, ankle crossed over his opposite knee, balancing his toy piano across his lap, trumpeting his lips to the machine's rendition of "Besame Mucho." A t-shirt holds his arms loosely against his chest—to prevent him from hitting himself—and his long fingers press the toy's buttons. His smile grows wide when George Billington, his evening caretaker, asks whether he wants to go for a cruise. "Socks 'n' shoes on," says Jeremy. "Seatbelt on for safety."
"When I was trained by FNIH [First Nations and Inuit Health], we were given workshops and attended meetings about Jordan's Principle and what it meant," says Pictou, who was also trained in the child-first policy while she worked for Health Canada. "It didn't occur to me that when we ran into a situation that fell under Jordan's Principle that [the funding] would be so hard to access."
Jordan's Principle is named in honour of Jordan River Anderson of Norway House Cree Nation, who spent all his life in hospital while the province of Manitoba and the government of Canada argued over who was responsible for funding the child's care at home. Jordan died at the age of four, having never lived at home.
"To access Jordan's Principle, we had to prove what kind of care Jeremy would get if he were off-reserve," says Pictou. An assessment was required, one that would identify the normative—standard—level of health services any non-status Nova Scotian child would receive.
In the meantime, while Beadle was recovering in hospital, Pictou Landing Band Council hired home-care workers to take care of Jeremy, "without knowing whether we were doing the right thing, whether the workers were able to provide Jeremy what he needed," says Pictou.
Five months after Beadle's stroke, Pictou Landing received approval from the office of Maureen MacDonald, Health Minister of Nova Scotia, for Continuing Care to assess Jeremy's needs. Continuing Care—the provincial service that performs home assessments—uses sophisticated computerized programs and trained staff whose services could weigh Jeremy’s needs against available provincial programs. However, Nova Scotia Continuing Care’s policy does not allow staff to work on reserves—First Nations health care is supposed to be covered by the federal Aboriginal Affairs and Northern Development (AAND). However, no equivalent assessment program exists for First Nations in Nova Scotia.
"The Minister's office made it clear that the approval was for one instance only, and that no other services would be provided," says Pictou.
According to a report by an ad-hoc coalition of Aboriginal and social justice organizations, First Nations children receive two-and-a-half times fewer resources than non-status Canadian children. Although AAND (previously Indian and Northern Affairs Canada—INAC) has committed to mirror provincial health care programs for people living on reserves, the relative geographic isolation of reserves across the country means resources for people living on reserve are distributed over greater distances, making specialized services particularly difficult to access.
After months of conferences with the Pictou Landing community health nurse, INAC, Health Canada, Jeremy's school, the tribal council, Band lawyers and the Band council, the provincial and federal governments decided that the funding to be offered to Jeremy for respite (at-home) services would be $2,200 per month—the standard respite cap in Nova Scotia. If Jeremy's care cost more than that—which it does—he would have to be moved to an institution.
According to Nova Scotia’s Department of Community Services, no institution in Nova Scotia can meet Jeremy's round-the-clock needs.
Situations such as Jeremy’s are not uncommon, and they are compounded by disputes between governments over who is responsible for paying for health care for status-Indian children. Research in the First Nations Child and Family Caring Society of Canada 2005 Wen:de Report indicates that these bureaucratic conflicts are common, with 393 cases in 12 sample First Nations in 2005.
“[J]urisdictional disputes continue to have significant impacts on the lived experiences of First Nations children—particularly those with special needs. Although both the federal and provincial governments embrace the principle that the safety and well being of the child is a paramount consideration, in practice jurisdictional disputes often supersede the interests of children," according to the report.
Jordan's Principle was supposed to fill this gap in health services. The bill states, "The obligation to meet the needs of the child first always supersedes government interests to establish jurisdictional dispute processes." Although Jordan's Principle passed unanimously in the House of Commons in 2007 as Private Members Bill 296, it has never been implemented in full, either by the federal government or the provinces and territories.
In 2008, a bill for the implementation of Jordan's Principle never made it through the Manitoba Legislature.
"When the bill comes to be paid," said Manitoba Premier Gary Doer, concerned for the cost to the provincial tax-payer, "the federal government goes to the bathroom."
When asked how Nova Scotia sees the province’s role in providing health care services to children such as Jeremy who fall between jurisdictional cracks, the office of Maureen MacDonald responded, "[W]e support the child-first concept behind Jordan's Principle and recognize the importance of governments working together to ensure that all children, including First Nations children, receive the supports and services they need here in Nova Scotia." While it may support the child-first concept, the province has never implemented Jordan's Principle, which would require services to be provided without delay.
The response from the Nova Scotia health minister’s office goes on: "Fundamentally, we provide the best care we can in circumstances like this and there are negotiations about funds that sometimes follow."
"There's a complete lack of access across the country to Jordan's Principle," says Pictou. "This is a gatekeeper practice. The feds can say there are no jurisdictional issues and therefore the need for [Jordan's Principle] doesn't exist."
Pictou believes political conveniences encourage the institutionalization of First Nations children.
"It's a win-win situation for governments," she says. "Evergreen [Home for Special Care] is the only institution for under-18 children [with complex disabilities] in Nova Scotia. It only has 20 beds, currently four vacancies. If an off-reserve child is taking up a bed, the province pays. If a First Nations child is in a bed, the federal government pays."
In other words, the province benefits financially—to the tune of $350 per day—when status-Indian children are kept in care facilities. AAND, under pressure to deliver health care equal to provincial programs, benefits because it is seen to be providing good services.
According to Pictou, if he is moved out of his community, Jeremy will lose his culture, language and, most significantly, his mother's involvement in his life. "It would be a huge loss for Jeremy. I can't imagine it. The idea is inhumane."
The $350 per day cost at Evergreen is double what it would cost to keep Jeremy at home.
"It would make a lot of sense to have a small-options home in Pictou Landing," says Pictou. "Three to four beds, 24-hour staff. It would create more economic viability in the community.”
Pictou Landing First Nation is a community in pain. The reserve is sandwiched between Boat Harbour and Pictou Harbour, a stunning coastline where doctors and lawyers used to own summer cottages. But in 1965 Scott Maritimes built a pulp millon in Pictou Harbour and began dumping effluent in Boat Harbour via a long underground pipe. For 46 years, pulp waste has been gushing into Boat Harbour at the rate of 50,000 gallons per day. Sulfurous smog lies over the harbour, the beach and the bluffs. Residents of Pictou Landing say there have been no natural deaths in the community in the past four decades. There is no doubt that the reserve could use more health resources.
Plus, for Pictou, the sensible alternative to the expense and emotional pain of moving Jeremy out of his home is to move the services, not the child.
"I've worked in public health and in housing. I've fought for low-income families to get special needs funding," says Pictou. "I really don't think this happens off-reserve."
She began researching other options.
Pictou’s research revealed a bureaucratic gap between respite paid by the province to non-status children, and the at-home care available to on-reserve children through AAND. Nova Scotia offers a support program for persons with disabilities, designed to "maintain the integrity of families," including enabling people with disabilities to live at home and preventing the need for them to be moved out of their homes, according to the 2006 provincial policy document.
For Pictou, the interesting part of the policy is a section titled, "Exceptional Circumstances for Funding over $2,200."
The document outlines six criteria to be evaluated for approval of long-term funding above the $2,200 respite cap, and four criteria for additional short-term respite.
"Maurina and Jeremy fulfill every single one," says Pictou, as she scrolls through the lists and reads them aloud.
When Pictou raised this, AAND said its commitment to status-Indians does not include exceptional circumstances such as those identified by the provincial program.
In March 2011, a few days after AAND refused Beadle's application for extra funding, a Nova Scotian family in a similar situation filed for a judicial review of the $2,200 respite cap. They won. The judge ruled that the cap was an administrative policy designed to save money, and that it contradicted the Social Assistance Act. Nova Scotia Community Services was required to pay for the care necessary to keep Brian Boudreau, a 34-year-old with autism, at home.
The Pictou Landing Band Council and Maurina Beadle have brought the matter to court, challenging AAND, Health Canada and the Government of Canada on its decision to deny the Beadles additional at-home support.
Theirs is the first court challenge to use Jordan's Principle. In their notice of application, Band lawyers call the federal decision "contrary to provincial statutes and policies, Jordan's Principle and the right to equality under section 15 of the Canadian Charter of Rights and Freedoms." Section 15 of the Charter says that every Canadian has the right to "equal benefit of the law without discrimination and, in particular, without discrimination based on race."
Pictou expects to be in court by January or February 2012.
"What irks me is I know what we could access if [Jeremy] were off-reserve, and it seems that roadblocks are put in place deliberately," says Pictou. "The same philosophies that drove the establishment of residential schools—that governments can raise children better than First Nations can—are behind the policies that trickle down today.”
The smog rolls over Beadle’s back porch. “No matter how long you live here, you never get used to it,” she says. It’s unclear whether she is talking about the pulp mill’s discharge, or something broader, deeper. An outsider can’t help wondering why the people in Pictou Landing don’t simply up and leave.
"When reporters ask me what I’ll do if Jeremy is moved to an institution, I tell them, 'Over my dead body,'" says Beadle. She watches Melanie Thomas, Jeremy’s day-time care worker, spoon-feed Jeremy his lunch.
"He won’t get no love in an institution."
A rally in support of implementing Jordan's Principle will take place in Halifax tomorrow.
Moira Peters lives and bikes in Halifax.
The Dominion is a monthly paper published by an incipient network of independent journalists in Canada. It aims to provide accurate, critical coverage that is accountable to its readers and the subjects it tackles. Taking its name from Canada's official status as both a colony and a colonial force, the Dominion examines politics, culture and daily life with a view to understanding the exercise of power.