Years-long wait for Manitoba FASD diagnosis highlights 'critical' need for more resources
There are only 3 doctors on the team doing FASD assessments for entire province
Youth in Manitoba are waiting years to be diagnosed with fetal alcohol spectrum disorder — a delay one occupational therapist says is putting already vulnerable kids at risk as they wait for an assessment that could give them the help they need.
The median wait time to be diagnosed through the Manitoba FASD Centre — which handles all assessments for the disorder across the province — was 26 months at the end of November, just a few weeks before a 14-year-old girl was fatally stabbed in downtown Winnipeg last month.
Court heard a day before the girl died that she struggled with a serious addiction, frequently ran away from foster homes, had spent time at a homeless encampment under the Donald Street bridge and was on a waiting list to be assessed for FASD.
A 17-year-old boy was later charged with second-degree murder in the girl's death.
"It's very sad, and I think it's a story we do hear often — more than it should be happening," said Andrea Auch, who has worked as an occupational therapist for nearly 20 years at the FASD family support, education and counselling program at New Directions, a Winnipeg social services agency.
Auch said that familiar story often involves someone who, if they "were able to get a diagnosis earlier and were able to get the supports that they need and find other avenues to cope, things can really be different."
"The need is not recognized as critical, I think, as it really is," she said.
Without diagnosis, kids 'fall through' cracks
FASD is a diagnosis that describes the effects on the brain and body of people who were exposed to alcohol in the womb. Those effects range widely, but can include challenges with motor skills, physical health, learning, memory, attention, communication, emotional regulation and social skills.
Auch says getting an FASD diagnosis can help a youth access certain resources and allow the people around them to better understand their strengths and challenges — meaning they're better set up to succeed.
However, she said, having to wait for that assessment often means "kids are kind of falling through" the cracks.
"We're going to lose them sometimes, in terms of whether or not they're, you know, still fitting into groups or able to function at school," she said, adding that when youth don't feel they fit in in one place, they look for other avenues.
"Whether it's because they want to fit in or they're not able to assess the risks and the consequences, they will be leading a life that might be more dangerous — and whether it's because of crime, whether it's because of some kind of exploitation — because that's where they feel that they are being accepted."
While New Directions doesn't require an official FASD diagnosis for youth to access its FASD program — just confirmed prenatal alcohol exposure — getting that assessment does open more doors for the kinds of resources they can get across the province, Auch says.
Cutting wait times 'always on our minds'
Before the COVID-19 pandemic, wait times for FASD diagnosis in Manitoba were somewhere between 18 and 22 months, according to Diana Renaud, director for neurodevelopmental services at the Rehabilitation Centre for Children, which includes the Manitoba FASD Centre.
However, wait times increased during the pandemic. At one point near the end of 2022, the median wait was 43 months.
While that number has started to stabilize, it's still higher than pre-pandemic — something Renaud says the FASD team is working hard to tackle, especially after hearing stories about youth like the 14-year-old girl killed last month while on the waiting list for an assessment.
"It's certainly always on our minds — has been for many years and will continue to be," she said. "And certainly stories like this, you know, just remind us how important it is.
"It just kind of breaks your heart, when you know that these things have happened to the youth in our city and province."
Sometimes, wait times for an assessment get dragged out because the youth has moved or simply isn't ready when it's their turn to go. Another factor is the fact there are only three doctors on the team doing FASD assessments for all of Manitoba, says Dr. Ana Hanlon-Dearman, the FASD centre's medical director.
"We do our best, but there's only so much of us," said Hanlon-Dearman, one of the three developmental pediatricians on the team. "It sounds easy to say, 'Find other people to do this,' but it's actually not that easy … It's a stretched-thin workforce."
Diagnosis 'a piece of the entire puzzle'
She says the FASD clinic has a follow-up team that works with youth after they get assessed to figure out what the diagnosis means for them and how the clinic can help them moving forward.
And while that diagnosis is important for many youth, Hanlon-Dearman said, it's just "a piece of the entire puzzle" of getting the help they need.
Provincial spokesperson Amy Tuckett-McGimpsey said in an emailed statement it's important for government to ensure people can access FASD assessments "in as timely a manner as possible" while still focusing on education, early identification and interventions for people with FASD and their families.
Families Minister Nahanni Fontaine said in a separate statement in the wake of the 14-year-old girl's death that she's committed to "making sure youth across our province are cared for and the organizations that help keep our children safe are well-supported."
Auch says while she understands the urge to rethink systems only after an incident such as the death of the 14-year-old girl, she hopes to see more proactive action for youth still on the waiting list.
"It's just so easy to think about after what could have happened," she said.
"But it would be so great if we were able to have the resources to do the diagnostic assessment — to get the services there for, you know, every individual that needs it and to help them be supported so that they can be as successful in their life [as they can be] and reach their potential."
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