We can’t determine FASD prevalence, Nunavut government says
But small FASD diagnostic team starts work at Qikiqtani hospital
This is a graphic produced by the FASD Hub Australia, which distributes information about the disorder online.
The Government of Nunavut still can’t generate numbers on the prevalence of FASD within the territory’s population, a spokesperson for the GN’s Department of Health told Nunatsiaq News this week.
“At this time, ascertainment of the existence of FASD is based on case-reviews, and is not possible at the population level using traditional surveillance techniques,” the GN said.
That’s because the territorial epidemiological surveillance work that the GN does is “designed to provide data for national surveillance programs, which do not include surveillance for FASD,” said the email, prepared by Wende Halonen, a senior communications officer at the GN, in response to questions from Nunatsiaq News.
Also, the GN says such work is difficult and expensive.
“Epidemiological surveillance for FASD is an emerging area of work, requires significant resources from clinical and non-clinical perspectives, and is premised on internationally agreed upon case definitions,” the Health Department said.
But at the same time, the GN says it now has the capacity to diagnose FASD, through a three-person team that recently started up at the Qikiqtani General Hospital.
The term “FASD,” short for fetal alcohol spectrum disorder, covers a range of permanent, lifelong mental and physical disabilities experienced by those who receive exposure to alcohol in the womb.
It’s the most common known cause of developmental disability in Canada. According to the CanFASD research network, about four per cent of the country’s population, around 1.4 million people, likely have FASD, at a cost to governments of at least $4 billion.
Experts say those who suffer from FASD can do well in life if they are diagnosed early and get the help they need.
But its prevalence in Nunavut—as in many other remote and rural regions of Canada—has never been measured.
And that makes it difficult for health and education leaders to justify the spending of government money to help people with FASD, whether they’re school kids or developmentally disabled adults struggling to get jobs and training.
“Indeed, we don’t know anything about the current prevalence of FASD among northern communities or remote communities,” Dr. Svetlana Popova of the Centre for Addiction and Mental Health told Nunatsiaq News in an interview earlier this month.
A study released last month by a team Popova led found the prevalence of FASD is higher in certain vulnerable groups, such as correctional inmates, children in foster care and some Indigenous populations.
Be wary of stigmatizing stereotypes
Some researchers worry that the absence of research could result in Indigenous peoples being stereotyped.
“Prevalence studies with Indigenous communities in particular have produced conflicting results because of continued surveillance, stigmatization, and stereotyping in these populations,” says an article that the CanFASD network published in July 2018.
“There is an urgent need for additional exploration of these issues in order to properly identify vulnerable groups who may require specialized support,” the article said.
But without early intervention and help, those who do have FASD often struggle behaviour problems in school, and either wind up inside the correctional system or find themselves permanently barred from participation in the labour market.
The GN does gather information from expectant mothers on substance abuse during their pregnancies, but the GN does not use it to help them figure out the prevalence of FASD.
“Maternal and prenatal care is of high priority to the department,” the Health Department email said.
Last March, Education Minister David Joanasie admitted that, although he knows there are likely many cases of undiagnosed FASD among Nunavut students, his department can’t track them right now.
Adam Lightstone, the MLA for Iqaluit-Manirajak, told Nunatsiaq News that he was “a bit taken aback” by that response and that the department must do more to find out who needs 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,” Lightstone said earlier this month.
But despite its well-publicized capacity problems, the GN is not entirely ignoring FASD.
Pediatric unit at QGH now does FASD diagnoses
For example, the three-person team at the Qikiqtani General Hospital in Iqaluit is now past the pilot project stage and is now set up to do FASD diagnosis, the Health Department said in its email.
That team consists of a neuropsychologist, a pediatrician and a speech-language pathologist.
“Children at risk for having FASD receive an initial assessment by a team of trained health care professionals,” the department told Nunatsiaq News.
“The team then collaborates in a multidisciplinary fashion (with guardian consent) to determine the diagnosis and care plans for children with prenatal alcohol exposure.”
Right now, that small team works only within the Baffin region, the GN said.
That appears to partly address a big criticism that Justice Robert Kilpatrick, the former senior judge of the Nunavut court, made in a judgment he issued in 2013, when he lambasted the GN’s Health Department for being unable to diagnose FASD.
That was in relation to a case involving the sentencing of a Nunavut offender who could not get an FASD diagnosis.
Kilpatrick warned that the Nunavut court might force the GN to pay for such diagnostic services in the future.
“If the territory lacks the means to provide the diagnostic services required, the court has the ability to order out-of-territory forensic assessments to be performed where necessary. The court will not hesitate to do so where this is required for sentencing purposes,” Kilpatrick said.
Audrey McFarlane, the executive director of CanFASD, a nationwide research network, said Nunavut has actually been involved in the issue for years, through an entity called the Canada-Northwest FASD Partnership, a knowledge-sharing group comprising the three territories and the four western provinces.
“They have been the leaders in Canada in developing evidence-based support services long before anyone else in central or eastern Canada,” McFarlane said.
This is a poster that the Government of Nunavut has produced recently to raise awareness about FASD.
GN focuses on prevention
One FASD activity the Health Department does emphasize is its prevention work.
“The GN strives to share messages that acknowledge and value the people with FASD who live in our communities, while at the same time reducing the number of substance-exposed pregnancies,” the Health Department said.
To that end, the GN told Nunatsiaq News it has recently produced the following:
• An updated poster to raise awareness about FASD
• A handout about substance-free pregnancy for young adults, pregnant women and their support people
• Handouts for healthcare providers to support them in having discussions with their clients
And the GN also said other FASD activities include the following:
• Community health workers provide key messages about reducing the risk of FASD and have community events during FASD Awareness Month every September.
• Lesson plans to accompany videos about reducing the harms of alcohol have been produced by the Ilisaqsivik Society. Two of them discuss alcohol use and pregnancy.
• Nunavut health officials participate in the FASD Mentoring Project, a project coordinated by the Saskatchewan Prevention Institute and funded by the Public Health Agency of Canada, which provides training to community workers about FASD.
• All healthcare providers are supposed to screen for alcohol use during pregnancy.
• Mental health and addictions care are available to anyone who wants support.
That covers much of what McFarlane said governments should do more of, which includes:
• Developing more public awareness.
• Encouraging doctors, nurses and counsellors to give consistent messages on FASD when advising expectant mothers.
• Identifying women who need help with support and addictions treatment, including women who have FASD themselves.
Also, McFarlane’s organization provides online training courses available to everyone, including a free course called “Foundations in FASD”
The FASD Hub Australia also provides e-learning and online resources.
Let’s just accept that the numbers are high for FASD. Let’s not spend money on diagnostic assessment. Let’s spend money on educating pregnant women about healthy prenatal care. Let’s spend money on meeting the needs of ALL children regardless of the reasons for their educational struggles ….trauma, poor sleep patterns, hunger or poor nutrition, huge gaps in learning due to poor attendance, etc. How does the support or end goal change if we know the child has FASD? What are you really going to do with the information? (Don’t tell me it helps planning because FASD has such a broad spectrum that goals still need to be based on the individual!). Spend the money on building capacity for healthy resilient children!
I completely agree with your comment Paula. The rate is ridiculously high (almost a given with every pregnancy!!!), and widely known about, with little care about it from the pregnant mothers. Put that money to better use = EDUCATION and ADDICTION SUPPORT!!!!
I understand your sentiment, but it is vitally important that FASD be diagnosed. Children who have an official diagnosis are legally entitled to receive extra services to help them be successful in school, but without a diagnosis accessing the services is very next to impossible.
The GN has been avoiding and under-funding its obligations in this regard, and one of their tactics has been to keep the number of official diagnoses at a minimum. We need to know the true number of FASD cases so that the money flows properly.
Exactly my point! CHANGE THE SUPPORT SERVICES! We dont need to identify why … we need to be able to access support for ALL children!
Yes, but the devil is in the details, they NEED to be identified in order to access the services. There are extremely limited support services available, just saying change support services isn’t going to change that. We are competing with the entire country for qualified personnel, who are in short supply nation-wide.
With a formal FASD diagnosis, students have a much better chance to getting the services that they need from a very limited supply.
Israel wrote “We are competing with the entire country for qualified personnel, who are in short supply nation-wide.”
That is correct. Getting more people identified with FASD will just lengthen the waiting list.
If you really want something done, do it yourself.
Invest the time to get the training, then become an FASD service provider. That is how you get service for your child and shorten the waiting time for the children of others.
There are so many people waiting for help with so many issues that politicians and bureaucrats cannot solve the problems.
From my experience with bureaucrats, the one thing they cannot tolerate is being told they are not needed, that “we will take care of the problem ourselves.” When they hear that, they usually do find the money to support what is being done.
It is ludicrous to believe that spending money on “identifying” children so they can be put on a list to WAIT for services that may never come is a beneficial way to approach this problem. This is exactly the political circus that has plagued students in need. We need to get out of the making a list mindset and support “education for all”. A solid education system that meets the needs of struggling students REGARDLESS OF THE REASON WHY!
Children have a right to be diagnosed. They have a right to know why they can’t sit still, their hands shake and they look different. And so do their caregivers. The screening should be early, and doctors should be looking for signs at every opportunity, instead of waiting for a parent to ask.
I went to a dermatologist for one issue, and as I was about to leave, she asked about something else she noticed, and offered to look into treating it. Saved me a lot of problems later on. It is not hard to tell when something is off when it comes to FASD.
All children deserve the attention required to allow them a positive and fulfilling life.
Whether they have Autism, FASD or a generalized learning disorder their special needs must be addressed. My son was one of the so called “crack kids” while in the school system. He was a kind and gentle boy who needed learning assistance modifications specific to his learning capacity. Though we strongly advocated for him that help was not forthcoming. We were told more than once that if he had a behavior problem he would receive attention. The process of getting a diagnosis is complicated and expensive. We were fortunate enough to afford private testing. Until the child has a confirmed FASD diagnosis they are not eligible for adapted school programs, aids or a program suited to their abilities. We advocated for our son for many years to no avail.
We were told many times that he was lazy and unmotivated. In fact he was overwhelmed and unable to process information in the classroom setting. He had learned as a young child to disassociate as a means to cope with the ongoing abuse he suffered. He would be removed from his biological parents home only to be returned for further neglect and abuse. Perhaps intervention may have made a difference. There were so many opportunities for people to step forward and assure these children were protected. Stigma surrounding FASD continues to thrive. I eventually understood that introducing myself as an adoptive parent was necessary or I would often be treated unkindly and unfairly. Viewed as the problem not a parent who wanted only the best for her child. My son is a 23 year old alcoholic now. Other kids graduated from school with diplomas, my son graduated with addiction. He does not see a point in living, I can understand why. Educating mothers as to the dangers of drinking while pregnant is important but we must not forget the children who are affected by a mother’s alcohol use while in utero. They deserve a fighting chance too
All comments are very good and well meant, but due to the
difficulties that can be encountered, I have to agree with
Israel.
Officialdom is everything in Nunavut. Good & Bad points !
P. S.
What a beautiful poster ! Who painted this, please tell ?
Reminds me of Echimnakruq in Chantrey Inlet.
“At this time, ascertainment of the existence of FASD is based on case-reviews, and is not possible at the population level using traditional surveillance techniques,” the GN said.
From kids health.org:
“Kids with fetal alcohol syndrome share certain facial features such as small eye openings, a thin upper lip, and a smooth philtrum (the groove between nose and upper lip). Other problems include:
Poor growth. Newborns may have low birth weights and small head sizes. They may not grow or gain weight as well as other children and may be short as adults.
Birth defects. Developing babies may have heart, bone, and kidney problems. Vision problems and hearing loss are common.
Seizures and other neurologic problems, such as poor balance and coordination.
Delayed development. Kids may not reach milestones at the expected time.
Behavioral problems. Babies may be fussy or jittery, and have trouble sledoing.
FASDs are diagnosed based on the symptoms (facial features, poor growth, and brain involvement), especially if it is known that the mother drank during the pregnancy. In children with milder problems, FASD can be harder to diagnose. Further evaluation and testing might be needed to rule out other conditions.”
There is absolutely no excuse for not diagnosing the kids. Have a permanent developmental pediatrician up here and get it done. It doesn’t require a confirmation of consumption of alcohol during pregnancy.
And where is this permanent developmental specialist going to come from? We can’t even keep GPs, let alone such specialists. Maybe if we were willing to pay a few million a year, with perks such as 3 round-trip business class tickets a year to a vacation destination, etc, we might get one, but we need many more than one.
I wish that I had a real suggestion, I do…
No, we do not have to accept that Nunavut’s FASD rates are high. Children deserve the attention required to find out whether or not something is wrong with them, and what that thing is. They do not deserve for us to go off assuming we know something about them that we do not.
Full on fetal alcohol syndrome may be easier to diagnose. But the full range of FASD symptoms come very close to mirroring other things that could be happening to a child including poor nutrition, chronic ear infections, trauma or the like.
Ignoring that there could be these other factors at play and assuming a child has FASD would lead to big problems for that child.
Addressing FASD will take the combined efforts of a special education teacher, a speech therapist, physical and occupational therapists, and a psychologist working with the parents.
To fund wholesale efforts like this, you would have to make tough choices about addressing other things like food insecurity and primary pediatric care. The only intelligent way to go about it is to actually know what the child needs.
Right on!
Absolutely! Which is why the idea of pushing it off onto semi-trained personnel, or assume that every child with issues has FASD, is a huge mistake, and why the official identification is needed.