Heart transplant patient can’t return home; has little support to stay in Ottawa, says mother
Denise Autut’s daughter must stay near Toronto and Ottawa hospitals for her ‘complex medical needs’
Since relocating to Ontario to access post-operative medical care, the Autut family has bounced between hotels while trying to access support from the Non-Insured Health Benefits program. From left to right: Inukshuk Autut, Nukaya Autut, Trevor Paul Autut and Denise Autut. (Photo by Kierstin Williams)
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.
““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.”
WHY is this an “all of Inuit” issue. Many people and families struggle with the Autut’s circumstances.
The tribal nonsense must be halted in Canada.
Hey S; still throwing garbage at minorities even under a grave danger position. I can see your deep hate for the minorities and I hope your not employed in decision making capacity for the indigenous population Canada.
This is an unfortunate circumstance for Ms Autut’s daughter. But if you have to move to another province for medical care, make it work. I know easier said than done but for a non-indigenous person, this is what they will have to do. You are already getting so much from NIHB for the medical care which is rightfully so, but wanting NIHB to also cover groceries and school supplies, really? Perhaps lifeskills classes should be re-introduced in Nunavut schools. You have a choice to move or stay in Chesterfield Inlet and fly to the appointments, your call. Your child can also do online schooling, not ideal but you have to make it work for your family and situation instead of begging for someone else to do it for you.
Have you read the article?
She was told by several doctors that she needs to be in Ottawa as her daughters condition with the surgery, it isn’t a choice and she isn’t being supported by NIHB for this.
This is the case for thousands of canadian families. Having to relocate close to a hospital to receive care is nothing new.
But she has no income while attempting to do so. I have no doubt non-indigenous folks would be after government money in one form or another if they were in the same situation. What you don’t understand is that Indigenous folk have different rules they have to follow. Her proper course is NHIB, just as yours might be welfare (EI). What would you do if EI declined you? You say everyone has to deal with it. Well, yes, and that is what she is trying to do, through the (broken) system that she is forced to use. Stop judging indigenous folks through an automatic negative filter THAT is what is meant by colonialism.
I pay into EI. It’s not welfare. 2 different things.
I do have sympathy for the Autut family. It’s obviously a terrible situation.
But what if, instead of the Autut family from Chesterfield Inlet, it was the Johnson family from Timmins that had to be in Ottawa?
Would the Johnson family receive money for hotels/accommodation and groceries? Would they be eligible for NIHB or JP/ICF?
No. They would not.
Why are you so upset there is discussion about how this affects inuit, or those accessing services related to NIHB coverage?
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This article is not pretending ONLY INUIT or ONLY NIHB people ever run into these kinds of issues… it is a description of inuit running into issues combined with NIHB services, so there is some primacy placed on the inuit and NIHB aspect of the whole set of circumstances. Which is not surprising given this Newspaper is catered to primarily Inuit, or primarily people likely covered by the NIHB. Don’t be shocked this paper is catering to the primary base of its readership. There is nothing wrong with that. Just because it doesn’t apply to others doesn’t mean it’s an offence against others, or others are being blamed or whatever.
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This is like you getting upset at a paper from rural New Brunswick talking about issues in rural New Brunswick with nonsense like “WHY are you talking about this when people in rural Saskatchewan face the same issues!?!?” You are missing the point entirely simply to get upset and use this story to whine about your own grievances in a way you are trying to mask as equality.
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We get it, you don’t understand what the NIHB is and what it covers and you seem upset you aren’t eligible for it, and kind of view Inuit as unjustly whiny welfare recipients.
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But regardless of whether or not there are other Canadians who run into issues akin to this without NIHB coverage, there is no harm in people discussing the NIHB specific, or displaced rural inuit aspect of this story. It is not an affront to hypothetical others for things to be discussed.
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Beyond all that though, your hypothetical Johnson family from Timmins could theoretically be eligible for NIHB coverage. And in your hypothetical, the Johnson family is clearly going through less displacement going from Timmins to Ottawa, than Chesterfield Inlet to Ottawa – less culture shock, likely less language and lifestyle adjustment needed, etc.
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You clearly don’t have a full grasp of what NIHB is or who it may apply to, and you are trying to use a puff piece human interest story to rail against a pretty paltry service offered to indigenous people.
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Why can’t you be honest about what you find to be the real issue here, instead of acting like you are motivated by sympathy for others? You either think Inuit shouldn’t be accessing something like NIHB, or we should just shut our mouths when being moved thousands of KM for prolonged periods of time for trying to access medical services. This has nothing to do with anyone being “responsible”, you are just moralizing against people accessing a social service you wish you had/you wish no one had.
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Don’t dress up your disappointment in a holier than thou attitude most everyone can see through, it’s very dishonest.
Very long response about how I don’t know what NIHB is, even though it is clear that you definitely don’t know what NIHB is.
NIHB is strictly for First Nations and Inuit. The intent of NIHB is for First Nations and Inuit to reach an overall health status that is comparable with other Canadians. That’s it. That’s all of what NIHB is.
So, some people are on here saying that there are many non-Indigenous people that go through the same situation as what the Autut’s are unfortunately going through that do not receive any help. That’s comparable.
Your rural NB/SK hypothetical would be better if it was something like this:
Farmers in Saskatchewan went through a drought last year and lost half their crops. The federal government didn’t help them. Farmers in New Brunswick are going through a drought at risk of losing half their crops. They want the federal government to help them. People from Saskatchewan currently living in New Brunswick remind the farmers in New Brunswick that the federal government didn’t help the farmers in Saskatchewan.
Are you assuming that people with the name Johnson can’t be First Nation, Inuit or métis? That was the point that you clearly missed.
“NIHB is strictly for First Nations and Inuit. The intent of NIHB is for First Nations and Inuit to reach an overall health status that is comparable with other Canadians. That’s it. That’s all of what NIHB is. …”
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So, it’s reasonable to expect there could be a Johnson family in Timmins who could qualify for the NIHB – it is tied to status, not to geographic locations. I have been covered by the NIHB even while living in large cities out of the territory. I have also met native people with the last name Johnson. Timmins has a not insignificant amount of indigenous people living there, too… Your hypothetical shows your bitterness about something indigenous people may access that non-indigenous can’t, given it is poorly thought out.
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Even in your follow up example you seem to be angling for a removal of a program like this to First Nations/Inuit rather than try to talk about extending it to all Canadians.
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Once again, just because you are saying you are doing this out of empathy and responsibility or whatever, doesn’t mean we are too stupid to see through to your real message.
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Either way, this family didn’t “make a choice” for this child to need heart surgery, as originally claimed.
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It is a situation they are forced into due to healthcare deficits compared to the average Canadian living elsewhere. Generally the worst of these deficits are among First Nations/Inuit communities. The NIHB is meant to try and offset those issues, but this story examines how it fails in this scenario. The fact they can’t even stay in territory is a failing of our healthcare system, let alone get moved even further away from home with little support.
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If Nunavut was an all-white jurisdiction with mining wealth I bet this family would only have to be moved to the Capital city at worst, rather than down south. There is a reason why some places well-being is prioritized more than others in our healthcare system and it’s curious how often it’s indigenous people who get the worst outcomes when dealing with it. This can’t be waived away as something all Canadians deal with.
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You and others in this thread then take this sad story as an excuse to talk about how the mother of a sick child needs to be “responsible”, learn “life skills”, or turn the discussion to instead care about imaginary hypotheticals you drew up to attack a very limited social program (rather than expanding it to the hypothetical Canadians you say you wish had the same support).
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Either way, the bitter motivations are clear to see despite all of these negative comments being dressed up as empathy and responsibility and caring for others.
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Just because we are inuit/native etc. doesn’t mean we can’t see through this kind of thing. You kind of people aren’t as good at this as you think you are and it is all rather tired and transparent at this point.
It was my example about the family from Timmins, it was definitely implied that I was referring to a non-Indigenous family. Let’s not play dumb.
To Alex above, Metis don’t qualify for NIHB.
Let me just be clear that I did not say they made a choice for the child to need heart surgery, nor did I say the mother needs to be responsible or learn life skills. I also did not draw up the original imaginary hypothetical, I replied to one with a more comparable one.
It is definitely an unfortunate situation, and sure it would be nice if anybody that had to go far from home for medical treatment could be supported in the best way possible. But I think people from Nunavut tend to have this view that healthcare in the south is beautiful and wonderful and everybody has all their concerns addressed and never has to wait or travel, and that everything is covered, and they want to be entitled to the same. It’s simply not true. People all over Canada face difficulties in accessing health care.
“If Nunavut was an all-white jurisdiction with mining wealth I bet this family would only have to be moved to the Capital city at worst, rather than down south”. No.
This is not a race issue. This is an accessibility and feasibility issue. There is no town in any of the provinces with a metropolitan population under 40,000 that has the ability to treat a heart transplant patient with a chronic kidney disease.
Wrong.
Adjustment to your hypothetical if NB had to deal with Indigenous programs:
Farmers in NB upset that the separate and different support programs they have did not help them. Oh, farmers in Sask had same prob with their system? Oh, that’s doubly bad.
Two wrongs don’t make a right.
Yes, there are various avenues open to people in Ontario.
Indigenous health care is a federal fiduciary responsibility. If a person in Timmins were to be indigenous, then yes, their health care-related expenses should also be covered. Do people not understand the Constitution and treaties anymore? It’s got nothing to do with feeling entitled.
Speaking of feeling, why don’t you try and have one.
Instead of jet setting to Greenland, France and New York, maybe NTI’s six figure executives should be helping their members navigate these challenges, if not providing them with the direct financial support they need to stay afloat.
To Where is NTI…Jet setting all over the world, Fairmont Hotels, love affair between NTI and the hotel chain. Ain’t voting for Big mama this time round.
Our system is broken. We have companies and private providers in the south making serious bank on medical travel and therapies. Sending people out of territory, breaking up families for months and months on end. Bring the providers here! Stop ripping families apart for the profit of southern providers. Keep people near home as much as possible. Instead let’s pay accommodations, per diems, travel, rentals, mileage, etc. for countless individuals when we could bring the teams here for far less keeping people and families near together as much as possible and reinvesting back into the territory and its people. Millions leave this territory because it’s a bandaid solution.
How do you propose, “to bring the providers here“? What incentive is there for providers to come here?
Why on earth would the provider wants to come here when they have it all cushy down south? newsflash, money talks. Plus all this decolonizing this and that and yet here inuit are biting the hands that feeds you? How about Inuit families support their children to go to school, to go to post secondary and then become professionals themselves. This will alleviate the need for “indigenous centred” care. Until then, medical travel is needed for Nunavut patients. If this was non-Inuk family who has lived in Nunavut their entire lives and raised their children here and needed to move to Ottawa for medical purposes, they will not see a dime of money to help them move. These medical situations are not uniquely Inuit, a lot of people in Canada are in the same boat. Ms Autut probably should look at the inuit orgs for help,
This is a great idea. Let’s put cardiologists in every health center in nunavut. Easy peasy, problem solved.
Everybody is an expert at solving problems.
Naglinakuluk, pray for her well-beibng and family.
S is just someone who believes everyone should be silenced unless they are trained in nothing but western ideologies and knowledge. At least he provides entertainment when he shows how narrow minded he is. S is for settler.
Well, to be fair at least “western knowledge” is a thing that can be explained. It’s not just, you know, the “feels” … or whatever I want it to be, like some other “ways of knowing” seem to be
Is there no equivalent to Ullivik for Nunavut?
Good point. Maybe Larga Baffin can house this family in need indeterminately. This is something NTI should be paying for though and NOT the GN.
Best comment yet
Why are they not staying at Larga.
All they need is travel arrangents for medical appointments. Get the request to medical Travel.
It would be cheaper to leave them there than flying them back and forth to Nunavut
Paying for unit. Food and transportation to the appointmeny and back to Larga .
But medical Travel would need the list of all appointments
Larga Baffin is located near 3 schools within walking distance and they offer transportation.
Please write to the director
joannaw@largabaffin.ca
WP Murphy; Minister of Health GN is not the most logical guy there is at the House does he care? Any extra effort is not going to increase his retirement benefits. He is $$$ as the Society is…
I sympathize with the struggles of this family. Our son received a kidney transplant at Sick Kids in Toronto, donated by his father. We had to travel to Toronto from Ottawa and stay there a few weeks. It was an expensive trip for us. We couldn’t count on Ronald McDonald house because you don’t know until a few days before your surgery whether you have a spot. So to be sure we had a place we rented an apartment. Luckily we lice near CHEO where my son can receive post op care and we’ve had many appointments (several per month) even a year out.
Why can’t she have a hotel permanently like many thousands of illegals housed in hotels across Canada? She has a family to feed and housed. I will not be voting for liberals, never ever.
OMG, people. Of course there are govt programs for bith, but they are separate. A family from Timmins would be looking for support too, but from a different source, one you would apparently be familiar with. What you are not familiar with is how it works for Indigenous folks. They have different programs that must be tapped first. And don’t think it is extra or more money. It is less. Guess what the first question other govt programs ask: “are you entitled to other support programs or capital from other sources? If so, go there first.” Thus, the trap.
Uh, this situation was not created by the current administration. It is an evolution of colonialism. And would be made generally worse under the doctrines of conservatism.
So if not for colonialism she would be staying at an all expenses paid what? Hotel? Resort? Boarding home?