What one family's 'nightmare' says about the chaos at Jordan's Principle

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.