A proposed law would have the federal government create a national framework to support Canadians with fetal alcohol spectrum disorder and their caregivers.
Bill S-234 was introduced by Senator Mohamed-Iqbal Ravalia, a physician from Newfoundland and Labrador and member of the Independent Senators Group.
If it becomes law, it would compel the federal health minister to create a national framework that promotes FASD research and diagnosis, increases support for individuals with the disorder and their caregivers, and raises awareness of the disorder and its risks.
FASD is “a very broad neurological disorder” and in the long term can impact memory, regulation and emotion, Ravalia said, adding some impacts may only become apparent as a child gets older.
“FASD is an extremely difficult condition to diagnose and we’re aware that early diagnosis and early action plans, in terms of the responsiveness, makes a huge difference.”
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An FASD framework would have three main outcomes, Ravalia told Cabin Radio: a quicker way to diagnose the disorder, appropriate supports, and extra help for caregivers, possibly through measures like tax breaks.
His goal is to “reduce the number of individuals undiagnosed who, unfortunately, often end up in the criminal justice system where their condition can be further exacerbated.”
He said one of the dilemmas of this neurodevelopmental disorder is there are often few facial features or physical deficits associated with it.
“Unless there’s a clear-cut history of alcohol intake during the pregnancy, we may not ever find out,” Ravalia said.
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Limited NWT support
In the Northwest Territories, the isolated nature of many communities means there are fewer services and supports, said Tammy Roberts, CanFASD Research Network’s board member representing the NWT.
“I’ve been supporting people with this disability for over 30 years as a foster parent in the Northwest Territories and an adoptive parent,” Roberts said. “No support was available, very, very little information was out there.”
Even though Yellowknife has a clinic for diagnosing child FASD, it only covers ages seven to 17. Roberts said there is no longer an adult diagnostic clinic so, if you’re outside that age range, you’re out of luck.
“It made me excited,” said Roberts, “to see we were looking at this disability on a national level that I think would be more supportive to caregivers and people that have this disability.”
NWT Senator Dawn Anderson was on sick leave last week and unavailable for an interview about the bill. Staff at her office said she supports it.
Roberts, describing a misconception that FASD is an “Indigenous challenge,” said that is not true.
She argues that many Indigenous people in the North have had so much trauma in their lives and their past – including the long-lasting fallout from residential schools and other challenges – that addiction rates are high, meaning a higher prevalence of FASD.
However, she emphasized FASD is not accurately tracked right now.
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“It’s difficult for us to say what percentage of the population is impacted,” Ravalia agreed.
He said four percent of Canada’s population is the figure often provided, but he hopes a framework would allow for better national data collection.
“Whether someone lives in Yellowknife [or] a smaller northern community, access to appropriate assessment and support should not depend on their postal code,” Ravalia said.
Bill’s next steps
Both Roberts and Ravalia hope more awareness can help combat the stigma associated with the disorder, both for people with FASD and their mothers.
Ravalia said a Senate committee recently made amendments to the bill around strengthening Indigenous consultation, embedding the United Nations Declaration on the Rights of Indigenous Peoples in the framework, and addressing Truth and Reconciliation Commission calls to action 33 and 34, which relate to FASD in the criminal justice system and preventative programs.
The bill will now be read for a third time in the Senate before it is sent to the House of Commons.
Ravalia believes his bill has unanimous support in the Senate and expects it to pass third reading without issue.
He said the bill has allies across the House of Commons, noting one of its biggest supporters is Conservative MP Garnett Genuis. He feels there is enough support to move Bill S-234 through the legislative process.
Whether and how quickly it moves through the House of Commons remains to be seen, but he hopes the federal government will recognize the importance of this work.
“I’m hoping that this bill will bring governments, expert communities, and peoples with lived experience together to help us make progress,” he said, “so there is equal access to appropriate services across the board, wherever you are in Canada.”
