The Ontario government is set to announce the province’s first strategy to combat Fetal Alcohol Spectrum Disorder (FASD) – a strategy expected to include a massive education effort aimed at would-be mothers, teachers and health care providers.
According to Health Canada, 300,000 people are living with FASD. Researchers say that number is an underestimate because of widespread ignorance about the condition among physicians, who misdiagnose the disorder, and biological mothers who fear the stigma that might result from admitting they drank alcohol during their pregnancies.
Most FASD sufferers have attention deficit disorder, which researchers say is often diagnosed and medicated as a single, non alcohol-related disorder when it is the opposite.
The causes and impact of FASD on affected children and their families has long been neglected by government.
n developing its strategy, the Ontario Ministry of Children and Youth Services has held province-wide round table meetings and consulted with expert researchers in the field.
Educating sexually active women about the dangers of drinking alcohol is considered crucial because an estimated 50 per cent of all pregnancies are unplanned – meaning that women often don’t know they are pregnant and unwittingly continue drinking during the critical early development of the fetus.
One aim of the education program is expected to attempt to crush the myth that only babies born to alcoholic or heavy-drinking mothers are potential victims of FASD.
Research is suggesting that even moderate, social drinking by pregnant women can damage their baby’s brain if the alcohol is consumed at a critical time of brain development. In other words, it is often a question of timing and not quantity.
According to a spokesperson for Children and Youth Minister Tracy MacCharles, the new strategy will focus on:
- Awareness and Prevention.
- Screening, assessment and diagnosis.
- Programs and services.
- Support for families and caregivers.
Durham MPP Granville Anderson, who led the round table consultations, said in his report that FASD prevention is complex but that awareness needs increasing and stigma needs eliminating.
“There is a need to broaden FASD awareness campaigns to target the public in the hopes of preventing new cases while removing the stigma for people currently affected by FASD,” he said. “We need to start talking about FASD and how we can decrease its prevalence in Ontario.”
FASD cost Canada at least $1.8 billion in 2013 — the latest figure available and, coincidentally, the Liquor Control Board of Ontario’s profit at the end of the 2014-15 fiscal year.
It isn’t clear whether the LCBO will be brought into the public education mix. As an agency of government, its only financial obligation is to turn over its profit to provincial coffers.
Long time advocate for FASD victims, Elspeth Ross, told the Citizen Thursday that it’s time for the disorder to be recognized so victims can get access to provincially-funded services they are currently locked out of.
For example, she says, people with FASD don’t qualify for services under Developmental Services Ontario, which assess potential clients based on IQ.
While FASD inflicts a varied range of developmental damage, its victims are invariably high-functioning and articulate.
“Young adults with FASD need help transitioning to adult services and need employment support,’ said Ross. “They have special needs.”
Ross and her fellow advocates want Ontario to join the Canada FASD Research Network that began in the prairie provinces and now has British Columbia and New Brunswick as members.
“We lack organizations to speak for us,” said Ross, who has two adult sons with FASD. “It’s frustrating that all the work is being done by the grassroots.”
A groundbreaking program called the Ottawa Fetal Alcohol Resource Program, launched last August by Citizen Advocacy has been educating professionals such as judges, lawyers, parole officers, police officers, teachers, and social workers about FASD.
(FASD children are often misunderstood by teachers who have no training in the disorder and by police, courts and corrections officers. Many people with FASD run afoul of the police and justice system in part because they are often unable to understand potential repercussions of their actions.)
About 160 people have been “trained” since the program began.
The ministry is expected to unveil general details of its FASD strategy at a one-day symposium on March 24, followed by a formal unveiling later in the spring.
More information on the Ottawa FASD free education program at www.citizenadvocacy.org
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Disclaimer: The views and opinions in this article are those of the authors and do not necessarily represent the views of Edmonton and Area Fetal Alcohol Spectrum Disorder Network.