It’s called the ‘invisible disability’ owing to its lack of any distinct physical features, and it’s back in the spotlight again after the unfortunate overdose death of a patient at the Edmonton Remand Centre last month.
The death of Maxim Baril-Blouin, diagnosed with fetal alcohol spectrum disorder (FASD) at an early age, has raised the issue of how to deal with the illness, a point highlighted by his mother, who was advocating better support for her son at the time of his death.
Almost 500 babies a year a born with this disorder in Alberta, and in total close to 46,000 Albertans fall on some end of the spectrum.
The Lakeland Centre for FASD is thus a boon for those in the region who suffer from this disorder.
Describing the illness, the program manager at the Centre, Lisa Murphy, told The Cold Lake Sun, “FASD is a complex disorder. It affects people differently and many factors play a role in outcomes. FASD is known as the ‘invisible disability’ because unlike many other disorders, few people have any distinct physical features; the challenges are brain based.”
“Many people with FASD struggle with executive functioning, memory, language, and learning. Any woman of child barring age who drinks alcohol, is at risk of having a child with FASD. But the focus should not be on moms, rather how we, as a community support and empower the entire family,” she said.
Murphy added that due to its complexities, it is essential FASD is diagnosed by a multidisciplinary team approach, consisting of a physician, psychologist, occupational therapist, speech language pathologist, and community support.
“Individuals with FASD require lifelong support, people who understand their individual needs, and a chance to develop their personal strengths. Without supports individuals with FASD can find themselves in many undesirable situations including criminal activity. And the supports people need are not always available,” she said.
The tragic death of Baril-Blouin, a 26-year-old from Whitehorse, highlighted the lifelong support patients need. He died of an apparent fentanyl overdose at the remand centre. Sylvie Salomon, who adopted Baril-Blouin when he was young, told CBC that he shouldn’t have been in jail in the first place with no one to watch over him. In 2010, then Canadian Bar Association president Rod Snow had asked lawmakers to deal with leniency when those disabled by FASD faced charges.
Giving a peek into their work at the Centre, Murphy said, “The Lakeland Centre for FASD provides lifelong support from prevention to diagnosis to intervention services, across the Lakeland Region. Our outreach programs include post diagnostic supports for individuals diagnosed with FASD and their families, transition to adult services support, and employment support. We run a summer camp for children with FASD, and recently added counselling services to our list of available programs.”
The Centre doesn’t just help the affected, rather it also tries to bring down future victims. “LCFASD also works in prevention; our Mother’s-To-Be mentorship program is an intensive outpatient program supporting high risk women for three years following the birth of their child. The 2nd Floor Women’s Recovery is a 9-bed women’s residential treatment centre, specializing in women who are pregnant or are in child baring years and at high risk of using during pregnancy. The women in our prevention programs do not need to have a diagnosis of FASD,” said Murphy.
Giving an insight into the effectiveness of the program, she added. “It’s important to focus on the little successes. Our aim is to build support around each of our clients and encourage our community to change traditional support methods. LCFASD works with over 400 individuals with FASD and their families each year in the region. Many individuals with FASD with proper support finish high school, maintain employment and have families. Without an early diagnosis, proper support in school and into adulthood, can result in very challenging situations.”
Talking about the challenges the Centre faces, she said, “About 80 percent of our funding comes from various government departments, the remainder is from fees and donations. Our funding from government has not provided us with an increase in over 6 years. This has made it very difficult to maintain high levels of service. Every FASD Network in the province is working under the same conditions with no additional funding and growing waitlists.”
Despite the challenges and grim realities, Murphy is optimistic about the future. “Although FASD is still a fairly new term, the dangers of mixing alcohol and pregnancy is not. Approximately 4% of the population in Canada have FASD, many of whom will not be diagnosed because the diagnostic clinics just cannot keep up with the need. The highest risk groups include working women, college and university women and women with addictions. Having said that, Alberta is leading the FASD world with its programming. Which is why we try not to complain too much as we have many more services for individuals with FASD than most other places in Canada.”
Written by Rohit Bhaskar