The ‘Invisible Disability’: Ontario to fund strategy for fetal alcohol brain disorder, says Naqvi
The Ontario government will have a funded, multi-ministerial strategy in place to combat fetal alcohol brain disorder before the end of its current mandate, Ottawa Centre MPP Yasir Naqvi said Saturday.
Health Canada estimates at least 300,000 people are living with Fetal Alcohol Spectrum Disorder (FASD) but researchers say the number is significantly higher.
There is widespread ignorance about the condition among physicians, who sometimes misdiagnose the disorder, and biological mothers who are either unaware, or fear the stigma that might result from admitting they drank alcohol during their pregnancies.
Although FASD has long been associated with alcoholic mothers and Canada’s aboriginal populations, researchers say it is widespread in mainstream middle-class Canada and pregnant women are more likely to be social drinkers than alcoholics.
Naqvi’s new commitment comes a year after former Children and Youth Minister Tracy MacCharles told the Citizen the strategy would soon be forthcoming.
The so-called “Invisible Disability” has no official status in Ontario, meaning that FASD families cannot access most provincial funding or provincial programs unless they use an officially-recognized and diagnosed disorder such as autism or ADHD, which can have symptoms similar to FASD.
Speaking at an Eastern Ontario FASD symposium in Ottawa Saturday, Naqvi said a comprehensive strategy around the disorder has the full support of Premier Kathleen Wynne and is in the mandate letter she gave new Children and Youth Minister Michael Coteau last year.
“We will fulfill the mandate,” said Naqvi. “It is not a matter of if, but when.”
The Ontario provincial election is in June next year.
The Ministries of Health, Education and Justice and Children and Youth will be key players in the strategy, said Naqvi.
“There is a huge justice component,” he told the Citizen. “If you look at incarcerated individuals, a lot of them probably have FASD.
“There is a strong recognition that we can save more money with an upfront investment helping to prevent a woman from consuming alcohol when she is expecting and providing proper support for people with FASD,” added Naqvi, who is now provincial Attorney General. “There is a whole education and awareness piece.”
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.
Research is suggesting that even moderate, social drinking by pregnant women can damage the baby’s brain if alcohol is consumed at a critical time of brain development. In other words, it is often a question of timing, and not quantity.
Naqvi stopped short of saying the Liquor Control Board of Ontario (LCBO) needs to be more proactive. The government retailer, which sold $5.57 billion worth of alcohol in the 2015-16 fiscal year, has been criticized by FASD advocates for not doing enough to educate women about the dangers of drinking alcohol while pregnant.
“But any FASD strategy needs a complementary alcohol strategy,” said Naqvi, “including clear signage at bars.”
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.
Special education teacher Rob More, a father of three FASD-affected children, told the Citizen Saturday that families are in desperate need of help and a formal, provincially-accepted diagnosis of FASD is vital.
On forms provided to schools to record student disability, there is no FASD box to tick, said More.
“So we often just tick the ‘other’ box,” he said.
More information on the Ottawa FASD free education program at www.citizenadvocacy.org.