As a fetal alcohol spectrum disorder (FASD) community outreach worker, Mel Amann is happy to go the distance to get vital information into the hands of the people that need it most.
The McMan Youth Family and Community Services Association staff member even recalls a time a few years back when, in order to preserve a client's anonymity, she handed off a brown envelope full of helpful materials to an agreed upon Innisfail Co-op employee who acted as a secure messenger.
“I'm more than willing to do that,” she said. “It's still a very difficult disorder for people to accept.”
With such a stigma surrounding FASD it can be hard to keep what should be a preventable disorder in check, and organizations have become creative in their approach to tackling the problem.
Now the provincial government has revived efforts to fight the disorder. Projects include launching an ad campaign to highlight their 12 FASD service networks across the province, continuing a three-year $150,000 worker-training program at the Bowden Institution so employees can better understand inmates with FASD and collecting better information on those with the disorder.
FASD refers to the “spectrum” of conditions brought on by mothers who drink alcohol during pregnancy. Fetal alcohol effects (FAE) is less severe whereas fetal alcohol syndrome (FAS) can be so relentless those affected have problems remembering to eat or remain in a constant state of fidget.
Front-line workers say it's time to put FASD on the ropes, and better understanding of the costly disorder is the uppercut that's necessary.
“People are still so afraid of acknowledging it publicly,” Amann said. “It's a super hard thing to discuss.”
Twyla Joy Lapointe, community development coordinator with the Hub in Red Deer, mandated to serve 18,000 people in the Central Alberta region, says combating FASD is easier said than done.
“There's still a lot of myths that exist,” Lapointe said, adding there are even doctors out there who she's heard of giving out incorrect information. “We don't know how many people are undiagnosed with FASD.”
The fact that FASD is preventable is what's so tragic, Lapointe says.
“FASD is the number one known cause of developmental disabilities,” she said.
The annual long-term economic cost from the disorders recently rose from $130 to $400 million each year for the Alberta economy, according to research published by the Institute of Health Economics in Edmonton. About 50 per cent of children in the care of social services have FASD and 50 per cent of young offenders have FASD, the paper stated.
Upwards of 65 per cent of inmates at Bowden Institution are suspected of having FASD, says Betty Lou Benson, coordinator of the Central Alberta FASD Network.
In a unique example of provincial funding going to a federal facility, Benson helped spearhead a program to assess and diagnose prisoners when they arrive at the Bowden Institution, in a bid to medically diagnose individuals with FASD and help lower the rate of recidivism, which sits at about 40 per cent.
“We think we will see that this 40 per cent is primarily composed of individuals who can't function in community without support and likely are individuals who have been parentally exposed,” Benson said. “We've got to somehow stop jailing individuals with a disability.”
The program, made possible by $150,000 in funding from Alberta Health and Wellness, will last for two more years.
Innisfail-Sylvan Lake MLA Kerry Towle said the government should put some of the approximately $700 million in revenue it receives from alcohol into education programs to help prevent FASD.
“Our role in government as elected officials is to protect the most vulnerable,” she said.
Even getting a handle on the disorder can be a challenge, says Frank Oberle, Alberta associate minister of services for persons with disabilities.
“Some of our programming is not well suited to challenges that face FAS clients,” he said. “They think in different ways; they put thoughts together in different ways.”
Oberle says these shortfalls are a huge priority for Alison Redford's government.
“The premier has asked for specific focus on FAS,” he said. “We certainly have to make sure we're providing services to people who need them.”
As politicians look at new answers to old questions, Amann stays busy acting as a link back into society for people with FASD, taking them to employment agencies and connecting them to financial professionals.
“We try to help them navigate the system,” she said. “When people ask me why I do what I do, I say I'd rather be part of the solution than the problem.”
