Denise Autut’s daughter must stay near Toronto and Ottawa hospitals for her ‘complex medical needs’
This story was updated on Tuesday, Oct. 8, 2024, at 1:38 p.m. ET.
A Chesterfield Inlet mother says she can’t go home but is receiving little support to stay in Ottawa, where doctors say she needs to be while her daughter receives post-operative medical care.
Denise Autut’s 13-year-old daughter, Nukaya Autut, had a heart transplant in Edmonton in November 2022. Since then, she has had about a half-dozen medical appointments per month including bloodwork, cardiology, kidney monitoring and pediatrics.
Autut told Nunatsiaq News her medical team advised the family to relocate to Ontario after the surgery so Nukaya could be near SickKids Hospital in Toronto for her cardiology followups, and close to Children’s Hospital of Eastern Ontario in Ottawa to receive care for a chronic kidney disease she also has.
The family, which includes Denise, Nukaya, 15-year-old Inukshuk Autut, and Trevor Paul Autut, 3, temporarily stayed with a family member in Ottawa.
Nukaya Autut, a 13-year-old heart transplant patient has been unable to receive support from the Non-Insured Health Benefits program or an in-depth explanation from the program for why not, her mother Denise Autut says. (Photo by Kierstin Williams)
Since then, they have bounced between hotels with sporadic Jordan’s Principle funding while Autut and her three children try to access stable financial help from the Non-Insured Health Benefits program.
“It’s very confusing and frustrating because [my children] should be in school right now,” said Autut.
“They can’t even go to school because we don’t know where we’re going to be living.”
The Non-Insured Health Benefits program is funded by the federal government and administered to Inuit living in Nunavut by the Government of Nunavut.
It pays for health-care costs not covered by the territory’s health insurance plan, including vision and dental care, mental health counselling, medical supplies and equipment, medications, and medical travel.
Autut said she sent a request for support at the end of January and has made numerous followups with the program.
But NIHB has declined her requests for financial support to live in Ottawa, she said, despite multiple letters from Nukaya’s medical team confirming Nukaya must stay in Ontario.
One of those letters is from Nukaya’s pediatrician, Dr. Radha Jetty.
Due to Nukaya’s “complex medical needs,” she is unable to live in her home community, says a June 24 letter provided by Autut to Nunatsiaq News.
“The family needs financial support for housing,” Jetty said. “The family also needs support for groceries and school supplies. Please assist this family as soon as possible as they are struggling and not coping well.”
Autut shared seven other letters of support from Nukaya’s doctors, nurses and social workers that echo the same message.
She told Nunatsiaq News that each time she receives a response, NIHB tells her she and her daughter “moved to Ottawa on their own.”
“We’re not getting any of the support that’s needed, the doctors and the social workers are sending these letters to NIHB saying, ‘They need accommodation,’” she said.
In an email to Nunatsiaq News, Health Department spokesperson Chelsea Halvorson did not address Autut’s situation specifically but said the program does fund accommodation, meals, and transportation to appointments for patients who are out of territory.
In exceptional cases, Halvorson said, the program will approve extended stays based on clinical recommendations, and that a transplant patient may be an example of this.
In the meantime, Autut said she cannot work while she takes care of her three children and manages Nukaya’s appointments.
“I’m stuck in a rut trying to figure out how I can feed my children and where I can put them to sleep,” she said.
“If we can’t go home, then how come we’re not being supported to stay here.”
Carolane Gratton, a spokesperson for Indigenous Services Canada, said that medical needs not covered under NIHB “can be sent to Inuit Child First Initiative for determination.”
The Inuit Child First Initiative is the Inuit-specific application for Jordan’s Principle, a program administered by the Department of Indigenous Services that ensures Indigenous children have access to the health, social, and education supports they need.
In addition to NIHB, Autut is awaiting an answer for her application to Jordan’s Principle for long-term support for her daughter.
She said she knows the program is facing a backlog of applications from across the country.
While her family waits to hear back from NIHB, Autut said she is grateful for the support her family has received so far from Jordan’s Principle.
“It’s not just my daughter that I need to voice this concern for, it’s all of Inuit that aren’t getting the right support that we should be getting from NIHB,” she said.
Correction: This story was updated to correct where Nukaya’s heart surgery took place.
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