Representatives of the Canada Fetal Alcohol Spectrum Disorder Research Network are holding their annual general meeting in Whitehorse this week. (Dave Croft/CBC)
Delegates at a national meeting on Fetal Alcohol Spectrum Disorder (FASD) in Whitehorse say ensuring supports for people with the disability remains a priority.
“Just giving people awareness doesn’t make the difference,” said Dorothy Reid, an Abbotsford, B.C. parent who, with her husband, raised two kids with the disability.
“In terms of actual services and with some governmental changes and some governmental priorities, services have been cut back in some areas that are really, really essential for people with FASD,” said Reid.
Wenda Bradley, the executive director of FASSY, (Fetal Alcohol Syndrome Society Yukon) said that was a primary reason for founding the organization in 1996.
“That was a group of parents that recognized when their children became adults the supports were dropped,” said Bradley.
“That was the reason for starting FASSY and other supports to get in place so they could help these folks not be in trouble all their lives, not be unhappy,” she said.
Bradley said it’s becoming a bigger issue for parents who want to make sure their children are cared for when they aren’t around anymore.
“They themselves are becoming older and they are recognizing that who’s going to care for my person after I leave in the way that I want them to be cared for, in the way that they’re used to being cared for,” said Bradley.
Yukon is ahead of many jurisdictions in the country, said Audrey McFarlane, the executive director of the Canada Fetal Alcohol Spectrum Disorder Research Network, the group that is meeting in Whitehorse.
“Yukon’s been a leader across the country in terms of many of the projects that they’ve started and we work very closely with them, the government folks and the service providers and the caregivers as well to help us decide which research needs to be provided,” said McFarlane.
McFarlane said some Canadian jurisdictions are just at the point now where Yukon was 20 years ago in terms of awareness of FASD.
Still, Bradley said there is much to be done in Yukon. She said there needs to be more supporting-living housing units.
She also hopes a mentoring system can be put in place for those who regularly encounter people with FASD. She said people working in areas like social services and policing may be aware of FASD, but not know how to convert that knowledge into action.
Simon Laplante from Winnipeg adopted a child at birth who wasn’t diagnosed with FASD until she was 16 when she got into trouble with the law.
The support she’s received since then have made a difference, said Laplante.
“She’s cleaned up her life, she’s on the right path,” he said.
A teacher and school administrator, Laplante said he has also become much better in his job because of what he has learned about FASD.
Similarly, Reid, a former mental health worker in the corrections system, said it became obvious to her that there are a massive number of inmates in prisons with undiagnosed FASD.
“In some ways it was good because I had the personal experience that could help me in terms of developing the programs for men with FASD,” she said.
“On the other hand it was hard because sometimes you sort of see the same kinds of things in the offenders that I would see in my kids and it got a little scary at times,” said Reid.