FASD in Nunavut a health-care rights issue, stakeholders say

“It’s the right of that child, it’s the right of that adult to get some answers”

This graphic was produced in the United States by the Centers for Disease Control in 2015 to promote awareness of the human and financial costs of FASD. The total economic cost to Canada is at least $1.8 billion a year, and the total cost per person with FASD is around $1.12 million over the course of their life.

By Jim Bell

People in Nunavut with FASD, along with their families, have the right to know they have the disability, Nunavut-based advocates say.

But due to a lack of screening and diagnosis, that right is likely not being met within Nunavut’s health and education departments.

“It’s about systems not actually realizing that they are violating the rights of children and even adults and their families,” said Jennifer Noah, the executive director of the Piruqatigiit Resource Centre in Iqaluit.

Piruqatigiit is a new non-profit organization in Iqaluit set up to help people and families living with FASD.

Experts say that FASD, short for fetal alcohol spectrum disorder, a permanent disability, is more widespread in Canada than autism or Down syndrome, two other disorders that receive far more funding and public attention.

In Canada, the annual cost to the economy associated with FASD is about $1.8 billion and the lifetime cost per person with FASD is $1.12 million, Dr. Svetlana Popova of the Centre for Addiction and Mental Health reported in a study published in 2015.

The term “FASD” covers a wide range of lifelong cognitive and physical deficits caused when a fetus is exposed to alcohol inside a mother’s womb.

Though the disability is believed to be widespread in Nunavut, the 2007-08 Inuit health survey, conducted in Nunavut, Nunatsiavut and the Inuvialuit region, reported no information on alcohol consumption by pregnant mothers and no other data on the prevalence of FASD.

And Nunavut’s minister of education, David Joanasie, said last March that while he knows of numerous children in school with undiagnosed FASD, the department is not able to track them.

It is not safe to consume any amount of alcohol during pregnancy, experts say. But the 2004 Qanuippitaa survey in Nunavik, a region with a culture and history that is similar to Nunavut’s, reported that 44.2 per cent of women surveyed in Nunavik reported drinking alcohol during their last pregnancy. (Image courtesy of the GN)

In 2011, another survey based on a smaller sample of Nunavik women, found 61 per cent reported drinking during pregnancy, and that 38 per cent of pregnant women reported binge drinking.

And Svetlana Popova, a scientist at the Centre for Addiction and Mental Health, told Nunatsiaq News last week that vulnerable populations, such as Indigenous people, suffer from FASD at rates 10 to 40 times higher than the general population.

Since no amount of alcohol, cannabis or tobacco is considered safe to consume during pregnancy, this suggests there are many people in Nunavut whose FASD is hidden or unknown to them or others.

Noah, based on her experience with addictions and counselling, agrees with that kind of assessment.

“I will say that FASD is far more prevalent than we can imagine, not only in Iqaluit and Nunavut, but in all places. FASD is four times more common than autism and Down’s syndrome combined,” Noah said.

“We are not at all suggesting that it is only an Inuit problem. It’s absolutely everywhere that there is alcohol. But it is time that we do some level of service provision,” she said.

Barrier to employment

FASD, if not screened for or diagnosed, can become a permanent barrier to getting a job or even training that could lead to a job.

That’s because FASD often damages memory, the ability to learn how to use language to communicate, and social skills required for labour force participation.

For that reason, Piruqatigiit wants to offer a certificate program to train service providers for people with FASD, Noah said.

“We’re trying to train front-line service providers so they can be FASD- and trauma-informed, so they can do a better job of being aware of the unique needs and challenges and strengths of people with FASD,” she said.

Helen Roos, the executive director of the Ilinniapaa Skills Development Centre in Iqaluit, also agrees that people with unscreened and undiagnosed FASD have basic health-care rights that Nunavut may be ignoring.

Right to know about one’s own health

“It’s the right of that child, it’s the right of that adult to get some answers,” Roos said.

“People have the right to answers to questions about their own health. And if there are questions about their development or growth, they have the right to screening [for FASD],” she said.

Roos said this means that unacknowledged FASD is a big barrier to labour market participation.

“In my seven years, especially my six years in working in pre-employment training with Inuit, we see it [FASD] in spades,” she said.

“It becomes a barrier. They are not screened in elementary school or high school.”

That’s because people with FASD often struggle with language and memory problems that make it difficult for them to understand instructions that are given to them in the workplace.

And that, in turn, means that such people will find it extremely difficult to train for jobs in Nunavut’s two biggest industries: mining and government.

“In mining, where everything is health and safety and wellness, and safety is number one, if you can’t remember safety precautions for yourself, you’re not going to be able to work in that environment. In government you need high rates of literacy.” she said.

But that doesn’t mean that people with FASD are doomed to a life of unemployment.

“There are employment opportunities, but they require job coaches,” she said.

For Iqaluit-Manirajak MLA Adam Arreak Lightstone, it’s crucial that the Department of Education identify children with FASD and offer them help, as early as possible.

“Early intervention is crucial for those living with FASD, as we must assist them to learn to live with their disability before it is too late,” Lightstone told Nunatsiaq News

“I believe that the Department of Education must consider this a priority by offering training to our school faculty to identify students who show symptoms of FASD,” he said.

But right now, very few Nunavummiut with FASD appear to be screened or diagnosed in Nunavut, Roos said, except for a few who were fortunate enough to have moved to the south.

“They never got any assistance with screening or diagnosis unless they grew up in or moved to the south, in Montreal or Ottawa, or were picked up, in the Kitikmeot and got screening through Stanton hospital in Yellowknife,” Roos said.

Share This Story

(5) Comments:

  1. Posted by Consistency on

    We need to make those with FASD know that it is not their fault. When you have no control over the way you are born it is not your fault. Parents to those with FASD, it is not your kids fault. People make mistakes, if you have a child that might have FASD because of mistakes you made it is not to late to try and help your kid deal with it. Just because an action you took led to the FASD does not mean you can not still make there life better. And if you need help ask… and for those that might be asked for help, if you are asked then HELP.

  2. Posted by Vitamin Beer on

    Screening is good, I wonder how we can work toward prevention though? That’s obviously the more desirable place to be.

  3. Posted by Colin on

    Harmful lifestyle choices for the unborn child don’t only include alcohol consumption or, worst of all, binge drinking. There’s also smoking during pregnancy, consumption of any drugs including cannabis, being overweight and generally unfit physically, and being a teenager still developing into adulthood. Women need to do real controlled exercise during pregnancy.

    Recent studies show that male impairment can also pass on defects to the next generation, and also that impairment may transmit to the third generation.

    Educated and skilled men and women in rewarding jobs—and youth with that expectation—seldom engage in a lifestyle harmful to the unborn.

    Unfortunately, Nunavut’s education strategy is evidently to prevent education and skills training of Inuit youth with sufficient intensiveness for gainful and satisfying employment in the high-tech economy. (Isn’t that why the admired principal at Cambridge Bay is being let go?)

    In the 1960’s Inuit author Peter Pitseolak expected that his grandchildren might become medical doctors like Noah Carpenter and the newly graduating heart surgeon Donna May—-and other professionals in the mainstream society. Similarly Abe Okpik said Inuit should be empowered for useful employment as—his example—people are in South Korea.

    • Posted by John on

      Saying things like “Unfortunately, Nunavut’s education strategy is evidently to prevent education and skills training of Inuit youth” which is clear and obvious nonsense, must make it a lot easier to pass the buck from those who are failing to those who aren’t.

  4. Posted by It’s about time! on

    I am so overwhelmingly happy to see more action being taken on FASD in Nunavut. I adopted a wonderful child with this illness and have watched her struggle daily with learning and social skills, through no fault of her own. Because the ‘birth’ mother wouldn’t voluntarily admit to drinking and drugs during pregnancy, I could not get my child officially diagnosed medically. Without a medical diagnosis, I could not access or receive any supportive financial or educative supports for my child and nor could the schools – like designated student support.
    There have been limited or no resources in Nunavut to assist her or me as a parent. I have had to reach out to other provincial Learning Disabilities Associations like Alberta and Saskatchewan to find supports and to educate myself on how best to coach and support my child. Other provinces are so much further ahead than Nunavut in this area.
    So now she is an adult living with FASD. It is hard for her to keep a job because the employer doesn’t understand her needs. She lacks certain social and critical thinking skills that get in the way of working with others. She is often taken advantage of and used by others in a negative way due to her caring heart.
    She is not the only one. I have seen FASD symptoms in numerous adult students who are completely unaware and frustrated why they can’t seem to ‘get’ it. FASD brains are wired differently and people deserve to know this about themselves so that they can get the coaching and supports to survive in today’s world.
    The children you see out all night vandalizing and getting into mischief – they are likely those with FASD who have not been screened, not getting the supports they need in school or at home, ending up with low self-esteem and turning to vandalism.
    The adults you see working in dead-end jobs and/or those lying around the house doing nothing all day – same thing. These people need supports, not judgmental critical behavior.
    It is time for Nunavut to face reality and make life better for our children and adults with FASD. Alcohol is a problem, stop denying it. People misuse it regularly, everywhere in the world. It is time to teach people about moderation, not prohibition and restriction. Keep working on prevention too of course. There should be posters and television ads running constantly.
    In the meantime, let’s get past the shame and help those who are struggling with FASD every single day right here and right now.
    Sign me up to help.

Comments are closed.