September 9, 2019
QUEEN’S PARK — On Fetal Alcohol Spectrum Disorders (FASD) Awareness Day, MPP Monique Taylor, Official Opposition NDP critic for Children and Youth Services, held a press conference to call for more awareness and supports for families whose loved ones live with FASD.
“At each stage in their lives, people with FASD face challenges and need support, but instead face barriers. In many areas of the province, there are no support systems, and families have to fend for themselves,” Taylor said.
While research on FASD is scarce, an estimated four per cent of Canadians live with FASD. Conditions associated with FASD can include physical health problems and issues with behaviour, cognitive functioning and learning. Families face a range of barriers, both in getting a proper diagnosis and accessing supports.
Taylor was joined by Dawn Clarke, Mary Walford and Irene McLean, each of who shared their families’ challenges as a result of having a loved one with FSD.
Mary Walford’s 12-year-old son David has FASD, and her family struggled to get him a diagnosis.
“After knocking on many professionals’ doors and doing lengthy testing, we received a formal diagnosis of FASD,” Walford said. “I had to travel to Toronto from Hamilton to get the diagnosis."
Therapy services for FASD are costly, and most Ontario families lack the means to access services.
“Cash-strapped schools are often unable to accommodate children with FASD, so children with FASD are often excluded, their parents asked to keep them at home,” Taylor said. “Many of these families are in crisis. Many live with stigma and shame, which stops them seeking the help they need.”
Dawn Clarke’s six year-old twins Justin and Shamus have FASD, and struggle with things like communication, impulse control and physical health issues.
“We were told Shamus would never crawl, walk, talk or eat,” Clarke said. “For eight weeks of this past school year, he threw himself down on the playground, not wanting to go to class. The school took away his support person. He has accomplished things the doctors said he would never do — not from the help of therapies, which aren’t available to families like mine — but from my family not giving up on him.”
Taylor stressed that once a person with FASD turns 18, any public support they were getting disappears, and they must go on lengthy waitlists for Passport funding or supportive housing.
Irene McLean, whose 19-year-old grandson Chris lives with FASD, said it is imperative that frontline workers be trained to respond to crisis situations involving individuals with FASD.
“Chris sometimes calls 911 when he requires extra support during high anxiety,” McLean said. “Because the police don’t understand his situation, several officers may come into his space and create a claustrophobic environment. This increases Chris’s anxiety, and magnifies challenging behaviours. We need to make services available to help our FASD community. By doing this, we can reduce costs in the judicial system, and keep people with FASD out of jail.”
In addition to better services and education on FASD, Taylor said the government must focus on prevention.
“Ultimately, FASD is preventable. That’s why awareness days like these are so important. While we should do our best to support families with FASD, we should also be educating prospective mothers on just how dangerous any amount of alcohol is, even early on in pregnancy.“