Inside a modest townhouse near the scenic, snow-covered shores of Lake Couchiching in Orillia, Ont., Katie Maracle pauses to wipe a tear from her eye. She listens intently as her husband Murray speaks.
“Our biggest fear is if we have to put him into the public system, he’s going to get lost,” says Murray, a 47-year-old from Tyendinaga Mohawk Territory.
He’s discussing the couple’s only child, eight-year-old Ethan Maracle, whose smile shines in pictures lining the walls and shelves behind them. His mother describes him as full of love and full of light. But the young First Nations boy has severe, non-verbal autism and co-occurring epilepsy, meaning life is full of complexities.
Right now that’s what keeps them up at night. For Ethan, Jordan’s Principle is more than a program — his parents believe it’s his only shot at a true education. But with a massive backlog in Ottawa and new restrictions rolling out, it’s an opportunity he may soon lose.
“It started off really well,” says Katie, a 40-year-old teacher by trade who works for a local nonprofit organization.
“But then COVID hit. And since then it has just been a decline — started off gradually and then, the last year and a half, it’s been absolutely a nightmare.”
The Maracles live off-reserve in this small city north of Toronto, which puts them on the front line of the troubles at this vital initiative for First Nations kids. The couple is among tens of thousands of potentially impacted families as Ottawa rolls out sweeping changes countrywide.
Indigenous Services Canada aims to address a backlog of 135,000 unprocessed requests, which Ottawa argues is due in part due to misuse and mislabelling of requests and the initiative creeping away from its original purpose.
Thanks to Jordan’s Principle, Ethan is at school when CBC Indigenous visits. For years, ISC covered Ethan’s education at a privately run centre for neurodiverse children, which provides transportation, intensive clinical therapy and one-on-one educational assistance.
But that all may soon fall away. In an operational bulletin last month, ISC cut back coverage for off-reserve and private school-related requests. For the Maracles, that means Ethan.
“The invoices we receive from Ethan’s school are $14,000 a month. So just take a moment to swallow that,” says Katie.
“Without funding, if it’s cut, we have no choice. So it’s — it’s heartbreaking.”
In an interview, the minister of Indigenous Services defends the changes. Patty Hajdu says Canada has approved nearly $8.8 billion worth of products, services and supports since 2016, while managing a simultaneous 367 per cent surge in requests. She insists provinces and territories need to step up.
“What we, as the federal government, are saying is that it is not OK for provincial partners to abandon their responsibilities to children with autism, regardless of their Indigeneity,” Hajdu says.
The principle is supposed to prevent jurisdictional bickering, but that’s precisely what the family feels swept up in.
Jordan’s Principle is named after Jordan River Anderson, a Cree boy from Manitoba born with multiple disabilities in 1999. Jordan died at age five, having lived his entire life in hospital, while Ottawa and Manitoba fought over who should pay for his home care.
The Maracles aren’t buying Hajdu’s argument.
“It’s got us very worried about what’s going to happen,” says Murray, who works as a senior policy analyst at the Assembly of First Nations.
“And I’m also afraid that it’s being done sort of out of spite by the government because of all this stuff happening at the human rights tribunal and them being unsuccessful.”
A vendor in despair
Cindy Blackstock isn’t buying Hajdu’s argument either. The leading child advocate calls the new restrictions a bid to save money on the backs of kids.
“They’re just funding cuts and they’re also just a perverse deflection of responsibility. The government has behaved its way into this crisis,” says Blackstock, executive director of the First Nations Child and Family Caring Society.
In 2016, the Canadian Human Rights Tribunal ordered Canada to properly implement Jordan’s Principle, after Ottawa ignored it for years. This entrenched it as a legal obligation on the federal government.
As the program grew, so did the backlog. Blackstock’s organization filed a non-compliance motion against Canada last year, and the tribunal ordered Canada to address the problems immediately.
For Amanda Baysarowich, the Maracles’ service provider, solutions can’t come soon enough. She also fights back tears when discussing Jordan’s Principle. For her, what started as a story of hope is now a tale of broken promises and despair.
Baysarowich says Jordan’s Principle currently owes her more than $500,000 in reimbursements. It’s enough to bankrupt a business, she says, and it’s left her no choice but to drop clients.
“It is creating extreme, extreme undue hardship on our families,” she says, adding that the situation has been emotionally devastating as well as financially distressing for her.
Baysarowich is the founder and clinical director of IBI Behavioural Services and Unique Minds Academy, both in Barrie, Ont., about a 30-minute drive from Orillia. The academy is an autism-oriented school for neurodiverse children.
Baysarowich used to have 17 pupils funded under Jordan’s Principle. She even hired one-on-one educational assistants to work with some of them. But now, because of the late payments, backlogged requests and delayed funding decisions, she has less than six.
Those remaining First Nations kids will be out of funding when the school year ends in June, and if that funding isn’t renewed, she’ll have no choice but to drop the rest.
“Your relationships with these families are so secure and so tight. So to be the one to have to pick up the phone and make those calls or send those emails? It’s gut wrenching,” she says.
Baysarowich isn’t alone facing long-delayed reimbursements. In a March 7 report to the Canadian Human Rights Tribunal, ISC revealed it can’t even say how big its backlog of outstanding payments actually is.
The data is simply “not available,” the report says. The government is supposed to reimburse vendors within 15 days, yet the report says only 26.2 per cent of invoices are processed within that timeframe.
The Maracles fear Canada is creating an incentive for vendors to reject Jordan’s Principle clients. Baysarowich agrees. She’s been sending pleading emails to officials in Ottawa, but feels they’ve fallen on deaf ears.
“With the heaviest heart, it’s almost backing me into a corner to say, close your doors completely to Jordan’s Principle-funded families, because the anguish, the stress, the mental strain, the fight, the business aspect has been so deeply, deeply and profoundly impacted on myself,” she says.
“It is a trickle effect. When a classroom is losing a student that they’ve serviced for three to four years and all of a sudden on a Friday he’s gone, that’s impactful.”
For Blackstock, this story is a microcosm of what’s happening across the country. Not only is the government causing real despair, it’s relying on flimsy evidence, she says.
Hajdu rejects the suggestion that she should take responsibility for the situation that unfolded under her watch. Instead she argues the program is an enormous success. She acknowledges the difficulties for families when programs change, but she maintains provinces and territories need to step up.
