People diagnosed with fetal alcohol spectrum disorder (FASD) need lifelong supports, but the disorder is often misunderstood, say advocates.
The recent overdose death of Maxim Baril-Blouin, who had FASD, at the Edmonton Remand Centre has sparked conversations about the needs of people living with the disability.
Baril-Blouin’s mother was advocating for better supports for her son at the time of his death.
“There is always more demand than what we have to offer, ” said Lisa Rogozinsky, who coordinates the Edmonton and area Fetal Alcohol Network (EFAN).
People with FASD have different needs depending on where they fall on the spectrum, she said.
“Some of the common areas of impairment that we see are in cognitive ability,” said Rogozinsky. “Attention span, memory, language, their reasoning, judgment, and decision making.”
About 500 babies a year are born with FASD in Alberta, and about 46,000 Albertans are living with the disorder, according to the provincial government.
Lifelong supports needed
Local agencies that contribute to EFAN work together to find appropriate services for their clients.
“We basically try to meet a fair amount of the issues that can occur across a lifespan,” said Denise Plesuk, program manager at Catholic Social Services in Edmonton.
The agency offers programs to support people with FASD and their families.
“Some of our programs do have waiting lists, and that’s partly why we’ve expanded into doing more group work,” said Plesuk.
People with FASD need lifelong one-on-one supports, said Rogozinsky, which includes supportive housing.
“We need to provide a sense of belonging to this population that has often fallen through every crack of every system,” she said.
A tragic case
Maxim Baril-Blouin, who was diagnosed with FASD at a young age, died July 13th at the Edmonton Remand Centre of an apparent fentanyl overdose.
The 26-year-old man from Whitehorse was court-ordered to live in a supervised environment, but there were no supports for him in the Yukon, said his mother Sylvie Salomon.
Baril-Blouin had been under the care of a private Stony Plain agency, I Have A Chance Support Services (IHAC) since January.
He was charged with uttering threats against an employee of the agency on June 19th.
“They broke all our trust. They failed Maxim big, big time,” Salomon told CBC News.
She questions the training and practices of the IHAC employees who were looking after him.
“You take someone in, you shouldn’t put them in jail,” said Salomon. “They knew the challenge, they advertise being able to take care of someone like my son.”
IHAC said they couldn’t comment on Baril-Blouin’s case for privacy reasons.
“We are deeply saddened to learn of the passing of Mr. Baril-Blouin,” wrote executive director Lory Morgan in an emailed statement. “Due to client and employee confidentiality requirements we are unable to further comment.”
FASD and the justice system
People with FASD frequently get tangled up in the criminal justice system, both as perpetrators and victims of crime, said Rogozinsky.
They are particularly vulnerable because their disability is not visible, she added.
“The justice system is just assuming that this is an individual that is functioning at a completely age appropriate level, which may not always be the case.”
People with FASD also tend to be easily manipulated, said Plesuk.
“Quite often, people with FASD want to please other people and they don’t always understand consequences,” explained Plesuk. “They will often get tangled up with people who will use them to commit crimes.”
They also struggle with understanding what other people are saying, she said.
“They need time to process the information. They need instructions that are very short and concrete, one or two things at a time.”
Supporting expecting mothers
Shaming and blaming expecting mothers who consume alcohol is counterproductive, said Rogozinsky.
“FASD is not a women’s issue, it’s a community issue,” she said. “Let’s make sure we are addressing the reasons behind a woman’s alcohol consumption in pregnancy.”
Complete abstinence from alcohol is the safest route, said Rogozinsky, as it is not known what constitutes a safe level of alcohol consumption during pregnancy.
People also need to recognize how their own behaviour influences expecting mothers, said Plesuk.
“If we know someone who is pregnant, are we offering them wine? Are we offering them a drink or are we offering them some non-alcoholic choices?” she said. “We often forget about that piece.”