When Laura Bone wakes up, her four-year-old daughter Jade is the first thing on her mind.
A whiteboard on the wall reminds her of Jade’s feeding schedule. There are binders of medical documents filled with diagnoses, discharge forms and future appointment dates.
For the single mother of eight, it’s a full-time job.
Jade lives with several health conditions, including Cerebro-oculo-facio-skeletal (COFS) syndrome – a genetic disorder that affects the development of the brain, eyes and spinal cord – and Beckwith-Wiedemann syndrome, an overgrowth disorder.
The life expectancy for a child with COFS is around five years old. When APTN News visited the family’s home in late April, balloons and streamers were hanging from the living room ceiling in celebration of Jade’s fourth birthday.
The Bone family lives in Keeseekoowenin Ojibway First Nation, about a three-hour drive northwest of Winnipeg.
Jordan’s Principle
Shortly after Jade’s birth in April 2020, Bone was connected to the Jordan’s Principle office in Keeseekoowenin. The program helps First Nations families access educational, social and health supports for their children.
Though Bone doesn’t drive, she travels off-reserve every month for Jade’s medical appointments.
Over the years, she says Jordan’s Principle has helped Jade receive physical and occupational therapy, specialized medical equipment and transportation to appointments.
But after a weeks-long stay at the Health Sciences Centre (HSC) in Winnipeg, Bone says her family will never seek help from Jordan’s Principle again.
“Jordan’s Principle told us that they would help us no matter what, like they would be beside us through it all,” Bone told APTN. “Then the first week we were there, it was kind of like they expected it to be over with right away.”
Travelled to Winnipeg
In March, Bone and Jade and her eldest daughter Haley travelled to Winnipeg to have Jade’s feeding tube inserted.
The younger girl developed pneumonia and had to stay until she was healthy enough to leave.
During that time, Bone alleges a Jordan’s Principle coordinator repeatedly asked her how much longer the hospital stay would be – a question she didn’t have the answer to.
Three weeks in, Bone says she was told she could no longer use the program to cover accommodation and meals.
She claims the administrator told her: “We had to find another way to stay, and then she said she would get a hold of NIHB (Non-Insured Health Benefits Program) and call me back.”
Southern Chiefs Organization
At HSC, the Southern Chiefs’ Organization (SCO) – a Winnipeg-based organization that represents 34 First Nations in southern Manitoba – oversees the Jordan’s Principle program.
Joni Wilson, the Jordan’s Principle and Wellness Services Lead at SCO, said she could not comment on a specific client’s file due to confidentiality, but noted requests made to their Jordan’s Principle program are never denied.
She said they will refer applicants to the appropriate Jordan’s Principle office or program if they cannot fulfil a request internally.
Additionally, she said medical transportation and accommodations are generally covered by the Medical Transportation Referral Unit at the First Nations Inuit Health Branch (FNIHB), which connects First Nations and Inuit in remote communities to health services.
After contacting NIHB, which provides coverage for health benefits not covered under federal, provincial and/or private insurance, Bone was able to secure accommodation for her and Haley.
However, the entire experience left her distraught.
“I just felt lost because I didn’t know what to do,” Bone said. “I was just trying to be there for her. I just wanted her to get better … it just hurt me that they did that to us.”
Jordan’s Principle was established in 2007 to ensure First Nations families can easily access educational, social and health services for their children.
It’s named after Jordan River Anderson, a five-year-old from Norway House Cree Nation in northern Manitoba, who died in 2005 while provincial and federal governments fought over who would cover his health expenses.
In 2016, the federal government committed $382 million over three years to create the Jordan’s Principle program after the Canadian Human Rights Tribunal found Canada guilty of discrimination against First Nations children for failing to meaningfully implement the principle.
Urgent individual Jordan’s Principle requests are supposed to be processed in 12 hours. But, as recent data shows, backlogs have been plaguing the system.
In March, Indigenous Services Canada estimated its Jordan’s Principle sector had between 40,000 and 82,000 backlogged requests.
In December 2023, the First Nations Child and Family Caring Society (FNCFCS) filed a non-compliance to the Canadian Human Rights Tribunal, claiming Canada is failing to deliver on Jordan’s Principle in a timely manner.
Only 18 per cent
Cindy Blackstock, executive director of FNCFCS, said in Manitoba only 18 per cent of individual urgent requests and six per cent of group urgent requests are processed in a timely manner. The provincial backlog is estimated to be between 8,443 and 16,343 requests, she said.
It was the FNCFCS that originally took the federal government to court.
But the problem goes beyond backlogs, says Blackstock.
“You’ll have them doing what they did to this mom,” Blackstock told APTN,”which is saying, ‘You need to figure out if it’s covered under First Nations Inuit Health Branch.’ “That’s not the way it’s supposed to work.
“It is the government department of first contact; they pay for the service, and then they figure it out back of house.”
Who is NIHB?
In Bone’s case, she says she was told to access NIHB to cover costs she initially believed would be covered by Jordan’s Principle.
That placed additional strain on the family while Jade had pneumonia.
“I was so worried about her that I didn’t have time to run around and look for a place,” Bone said. “I just stood. I stood by her bed, cried for a while, and I recall the conversation. I thought, ‘OK, well who is NIHB?’”
Victoria McKay, Keeseekoowenin’s Jordan Principle coordinator, said medical transportation, which includes accommodation, is covered under NIHB. She said Jordan’s Principle will fill any gaps and will never deny services.
James Bone, Keeseekoowenin’s health director, said FNIHB told Jordan’s Principle case managers that accommodations costs were to be redirected to NIHB.
“Health Canada came in there … and they made a presentation to the case managers, saying: ‘This is how it’s going to work – any of your clients going to the city from now on have to ask us for accommodations, must access through this process from now on, regardless of where you are funded, where you’re at in your community’,” he said in a telephone interview.
Ryan Tyndall, a spokesperson for Indigenous Services Canada, confirmed FNIHB presented on NIHB medical transportation benefits to an Assembly of Manitoba Chiefs technical advisory group in March.
He said NIHB-eligible clients are encouraged to seek medical transportation coverage through that body as a first step, but could still receive the same coverage through Jordan’s Principle.
Blackstock maintains that Jordan’s Principle was created to end departmental and jurisdictional disputes over who should provide coverage – disputes that present barriers for First Nations families trying to get care for their children.
“One of the worst things that happened to Jordan River Anderson – the founder of Jordan’s Principle – is Manitoba and Canada would keep on passing the buck about who should pay, and while that little boy suffered in the hospital,” she said.
Whether or not Bone’s experience was a result of departmental disputes, she says she’s cutting ties with the program she’s relied on for three years refusing to use Jordan’s Principle to help her daughter.
“If any of that has happened to anybody else … I know the feeling and I’m very sorry that you had to go through it,” Bone said. “Nobody deserves that.”
