Yes, it’s possible to screen for FASD, experts say

“It’s really sad to see the reluctance of people to do screening”

In 2006, the Baker Lake Prenatal Nutrition Project designed this pin, which was given away as a prize to expectant mothers who pledge not to consume alcohol during their pregnancies. Since then, however, the Government of Nunavut has done little to screen or diagnose residents who have FASD. (File photo)

By Jim Bell

An unknown number of Nunavut residents with fetal alcohol spectrum disorder, or FASD, are being denied the help they need, because territorial agencies do little screening or diagnosis and because no one has ever tried to pull together information that already exists on the disability’s prevalence.

That’s according to a variety of experts who spoke to Nunatsiaq News.

“Screening and diagnosis need to be done, whether you’re a youth in school or you’re an adult. People who have FASD have serious support needs,” said Helen Roos, the president and lead instructor of the Ilinniapaa Skills Development Centre in Iqaluit.

Ilinniapaa is a pre-employment and skills training centre that offers programs under contracts with government. Roos told Nunatsiaq News that through this work, she has become aware of multiple clients who show signs of FASD but who were never screened in elementary school.

FASD is a general term that covers a range of permanent mental and physical disabilities experienced by those who receive exposure to alcohol in the womb.

It’s a lifelong disability. Those who have FASD often require support and treatment for cognitive problems related to memory, language, learning, communication, social skills, as well as physical conditions related to more than 400 “co-morbidities,” or associated health conditions.

To get help, people with FASD must be identified

That means identifying such people is of crucial importance—because, otherwise, they won’t get the help they need.

“What we are seeing is so much alcohol use during pregnancy…. Some of our clients tell us directly, ‘Yes, my mom drank when I was born, I heard that through family.’ They never got any assistance through screening or diagnosis,” Roos said.

Dr. Svetlana Popova, an expert researcher at the Centre for Addiction and Mental Health, told Nunatsiaq News last week that’s why screening for FASD must be done.

Popova led a major study into the prevalence of FASD among certain vulnerable groups that the CAMH released this past April 30.

The vulnerable subpopulations covered in that study include children in care, adults in the correctional system, special education students, people receiving care for developmental disabilities or psychiatric conditions, and Indigenous populations.

Her study found members of those subpopulations experience FASD at a rate that is 10 to 40 times greater than the estimated global rate.

For example, FASD prevalence among adults in the Canadian correctional system was 19 times higher than in the general population, the study found.

“We have to provide them with support, we have to provide them with good interventions if we find this in the schools,” Popova said.

And the annual cost to Canada from FASD is enormous: conservatively estimated at about $1.8 billion a year in a study that Popova and her colleagues published in 2016.

But at this moment, there’s little screening for FASD within Nunavut schools.

GN can’t track children with FASD

Education Minister David Joanasie said as much last March, in response to questions from the Adam Lightstone, the MLA for Iqaluit-Manirajak.

He said he believes many children in school have undiagnosed FASD. And he said the GN can’t track them.

“The member is right in that there are many that have undiagnosed FASD. We are not even able to track, we have no tracking available to say how many “X” amount of students require support for FASD,” Education Minister David Joanasie said at the time.

In a follow-up interview done via email last week, Lightstone told Nunatsiaq News that he was surprised to hear Joanasie say they’re not able to track the number of students who need support for FASD.

“I was a bit taken aback by the minister’s response that the department doesn’t have these types of figures, considering the substantial requirements that these students need,” Lightstone said.

And he went on to say he believes the Department of Education must make it a priority to find out which children need help for FASD.

“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. 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,” Lightstone told Nunatsiaq News.

Screening tools exist

And Popova said it may be true that FASD is difficult to diagnose. But it is possible to train non-medical professionals to screen for it, she said.

“It’s really sad to see the reluctance of people to do screening—because diagnosis and screening are two different things,” she said.

“The tools exist for law enforcement professionals in how to screen and identify FASD in the correctional system and tools exist for screening for teachers, specifically,” she said.

She knows that because she and the team she works with did a major study on the prevalence of FASD among schoolchildren in the greater Toronto area.

That study, released in April 2018, found that two to three per cent of children in the GTA have FASD.

That’s at least twice as high, or more, than the previously accepted rough estimate for the general Canadian population.

But she cautions that those numbers are not applicable to regions like Nunavut, where the prevalence is likely much higher.

“The estimates are not applicable to populations in remote northern communities, children in care, or people in prison or psychiatric care facilities, which have shown much higher rates of FASD,” she said last year.

Nunavut stats not publicly available

As for the prevalence of FASD in Nunavut, no statistics have been made available to the public.

But Roos said the data is out there—in information that the Department of Health has gathered in pre-natal work done with expectant mothers in every community. But those raw numbers haven’t been turned into usable prevalence statistics.

“The community health centres have all the patient data, but it’s all been consolidated at GN health,” Roos said.

“The prevalence rates are there. You can easily see what the prevalence rates are,” Roos said.

Coming soon: a story that asks if FASD screening is a children’s rights issue and health care rights issue.

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(6) Comments:

  1. Posted by Evelyn Thordarson on

    The goal to a healthy child is to NOT drink or take drugs during the pregnancy, When mothers drink and drug their child will end up with insurmountable defects that will harm them through their young lives. They may already be born with addiction issues, they get taken advantage of by people whom exploit at risk kids. And when parents say to me they don’t understand why their child acts out in destructive ways ,I want to shake the mother and say you drank through your pregnancy you didn’t seem to care then.
    So if there is screening and the mother finds out her child has FASD what then does she abort , adopt out or walk away and let someone else care for the problem. These children unless are helped don’t stand a chance of surviving in the real world.

  2. Posted by Crystal Clarity on

    Is the screening method referred to this…..?

    I’m betting there are a huge number of undiagnosed kids and adults who have FASD in Nunavut. If they were able to diagnose them all or even some of them I’m sure the need for special resources and assistants would bankrupt the government. I understand why they don’t do screening. It’s not right but I understand what a frightening prospect that would be.

    • Posted by Dr. Do Little on

      That link claims:

      “The economic impact of FASD is spread across multiple systems, including health care, education, criminal justice, as well as lost productivity costs for both individuals with FASD and their caregivers. Estimates suggest that the mean annual cost of FASD in Canada and the US ranges from $22,000-$24,000 per individual”.

      These are not the costs to treat FASD.
      These are the impact costs of untreated FASD.

      Those are US dollars, so figure $30,000 to $35,000 per person per year in Canada. Impact here in Nunavut is probably closer to $100,000 per person per year.

      This is one of the big reasons why the GN does not have the money needed for proper development in Nunavut.

      It is too busy paying for the damage done by alcohol already consumed.

      Alcohol consumption is not consistent with Inuit Societal Values. It’s time to treat it as the tool of colonialism that it really is.

    • Posted by Ilisasi on

      The screening tools have just been posted in April 2019 on the Public Health Agency of Canada web site under FASD.
      Specifically there are tools for Education, Health, Social Services, Justice. No word on whether the tools have been normed on Inuit, a population highly impacted by intergenerational trauma. Trauma can also result in behaviours in children described in the screening tool. The tool would best be used in tandem with a maternal interview in a health care setting. Please do not add universal screening for FASD to the already challenging work load of our teachers. Consider too the impact on maintaining a good relationship with your student’s mother when you ask her to consent to her child being screened for FASD. By all means screen, but do so in early childhood and with appropriate tools that have been translated and properly interpreted. And while we are on the topic: how about also screening all children in Nunavut as a matter of practice for vision, hearing and dental care? Every child by age 5. Then again annually till the age of 16. Provide the required occupational therapy, speech language therapy, physiotherapy, child & youth mental health, audiology, optometry, and dental services. If that isn’t done, then the outcome will be just one more debilitating bad news story about Nunavut and Inuit. Please take this one up MLA Arreak-Lightstone. If successful, Nunavummiut will thank you for generations to come.

  3. Posted by So then what– once individuals are identified? on

    I teach in a Nunavut school and have for a decade.
    There are a huge number of students who need to be assessed/diagnosed for a whole lot of things and not just FASD.
    The government doesn’t want children to be assessed and then identified– it’s been working for them for 20 years ensuring that it stays that way.
    We can barely get support for the very high-needs students with severe developmental, cognitive and physical disabilities. When was the last time there was an educational psychologist in Nunavut?
    We’ve had a couple kids on waiting lists to go out of the territory to be assessed –but they been on that list for years– nothing happens.
    Even if students were diagnosed –then what?
    The government has no intention of putting any additional money or supports in Nunavut schools. They haven’t done so in the past and won’t int he future. The government is failing its children. The problems relating to FASD in Nunavut are not getting better, they are getting much worse.

    • Posted by The Plan! on

      The government doesn’t have the capacity to address this issue and so, would prefer to pretend it just doesn’t exist. We’ll put out a few posters about drinking in utero, and with some luck those will pay off in a generation or two. Cheap and easy and hopefully avoids the embarrassment of a full on assessment and acknowledgement of the problem might bring.

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