“It’s the right of that child, it’s the right of that adult to get some answers”
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 $5.3 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.
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.
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