Seven-year-old Sairro Neveau has been receiving a number of specialized services at Garden River Wellness Centre to help mitigate the impacts of living with autism.
But the care he’s been receiving through Jordan’s Principle for the past five years — which includes occupational therapy, speech pathology and applied behaviour analysis, among other services — will be placed on hold indefinitely effective April 1.
His mother, Melody Neveau, worries that her son will regress, which could affect his day-to-day life, both at home and at school.
“He’ll return to his screaming for everything, and he’ll also mumble or growl when he’s frustrated. He has a loss of words,” Melody told SooToday during a recent interview.
“With behaviour, he’ll return to harmful stimming such as banging his head and hitting himself — or physically harming me.
“With physio, they’re working on his balance and coordination, and without that, he could lose any progress he has.”
Sairro has also been working with a dietitian at the wellness centre and is currently being assessed for Avoidant Restrictive Food Intake Disorder, as part of the work being done by a multidisciplinary team at the centre to help Indigenous children and youth gain access to equitable health-care services.
“He’ll definitely react and regress,” Melody said.
Kim Duguay, patient navigator for Jordan’s Principle at the Garden River Wellness Centre, did not respond to a request for an interview made by SooToday last week.
Jordan's Principle was first implemented by the Canadian Human Rights Tribunal in 2016, in an effort to ensure that First Nations children are not facing discriminatory gaps, delays, or denials in accessing government services.
The human rights principle was named after Jordan River Anderson, a child from Norway House Cree Nation in Manitoba, who was born in 1999 with multiple disabilities.
He spent two years in a hospital, while federal and provincial governments went back and forth on who would pay for his care at home — all because they could not agree on which government should pay for services to First Nations children on reserves.
Anderson died at the age of five, never experiencing life at home.
Nearly $8.8 million in products, services and supports have been approved under Jordan’s Principle between July 2016 and December 2024.
In an email to SooToday, Garden River First Nation Chief Karen Bell referred to a 10-page bulletin on the community’s website that informed band members of sweeping new changes to processing requests for funding under Jordan’s Principle.
According to a Feb. 10 statement by Indigenous Services Minister Patty Hajdu, the federal government is implementing “new ways to process requests to expedite decision-making and address the increased demand,” for access to the funding.
There were 614,350 funding requests approved in 2021-2022. But in 2023-2024, the number of requests ballooned to almost three million — representing a 367 per cent increase.
The new changes to processing requests include barring funding approvals under Jordan's Principle for home renovations, sporting events, international travel, non-medical supports or school-related requests unless required to ensure equality with children who are not First Nations.
Those changes come almost a year after the federal government argued before the Canadian Human Rights Tribunal that requests were being made for a swath of non-urgent things including modelling headshots, gaming consoles, bicycles, and a zip line kit.
In Garden River, it remains unclear if funding for specialized health services will continue to be provided, leaving Sairro’s mother with a lingering sense of worry.
“I’m a single parent. I’m on ODSP (Ontario Disability Support Program), and I can’t afford out-of-pocket services — and I think it’s unfair that we were not formally informed about this. We had to find out through social media,” Melody said.
“My child, he’s going to suffer for all of this.”
- with files from The Canadian Press