FASD conference to focus on equal access rights

Page 6

The 2005 FASD National Conference, to be held in Victoria from Feb. 24 to Feb. 26, will focus on equality of access to health care, education, social services and justice for those people afflicted with Fetal Alcohol Spectrum Disorder, caused in the fetus by exposure to alcohol before birth.

Since 1996, the bi-annual conference, sponsored by Interprofessional Continuing Education of the University of British Columbia, has zeroed in on the issues most impacting the individuals dealing with FASD, more than 300,000 Canada-wide.

>From their first conference that focused on raising awareness about the dangers of alcohol to the fetus, to this year's theme Rights and the Right Thing to Do, the conference focus changes to arm individuals and organizations with the tools and techniques to tackle the challenges of the condition.

Elaine Liau is the director of Interprofessional Continuing Education. She developed the conference after seeing the high numbers of youngsters being diagnosed with FASD at Sunny Hill Health Centre for Children in Vancouver.

She brought together a group of experts that could speak to the particular issues of the day regarding FASD to people from a diverse set of backgrounds. What started out as a conference attracting less than 300 people, has grown to a function that hosts more than 700.

"It's an interdisciplinary group of people. Everything from persons living with FASD to the parent to health professionals, such as the nurse, the mental health worker, the family support workers, the administrators and managers, policy makers, social workers, pediatricians, teachers and educators. So it's a real cross section, said Liau.

Front and centre at this year's conference is the Charter of Rights and Freedoms and equal benefit of the law under section 15. Discussion about what that law means and how to challenge a system often seen to exclude rather than include will be encouraged by a variety of workshops over the three days.

Organizing a conference that appeals to the varied interests of a wide audience is a challenge, but the rewards out-strip the effort, said Liau.

"You really need a team effort for this condition. It's really vital because you need to hear the different tools and techniques that the parent has put in place in their home that works for that kid. The doctor needs to hear that, the social worker needs to hear that so that that kind of information can be passed on to other parents or health care workers and family support workers that may not really realize, for instance, even with teachers what's going to work. What do the teachers need to know that's going to help this kid? Where they are going to get that knowledge is from the kids themselves?"

A unique session developed for past conferences and back for this year's event, is a panel of real experts, the young people themselves affected by FASD. Eight children ranging in ages to 18 discuss in their own words how they deal with the condition day-to-day.

They are asked how old they were when they found out they had FASD, what having it means to them, what challenges they face, what things are unfair. An educators panel on the final day continues the discussion with the children when they talk about what helps them to learn, what things they are good at and how teachers have helped them.

"So this will help the teachers that come to that session to find out through the voice of the child to gain insight, to know how to help that particular child to learn that has FASD," said Liau.

New national guidelines for diagnosing the condition will be presented this year, and diagnosis is everything, said Liau.

"They need a proper diagnoses before they would even attempt to try to get any kind of support for a child, special programming, special possible funding," said Liau. Right now, the IQ of an individual must be under 70 before legally it is considered a mental defect. But many people living with FASD are igh functioning in some areas, but can't cope in others.

"They don't have a good sense of judgement. They are very vulnerable. They are easily swayed," Liau said.

In one example, she said a young man in B.C. who learned that his father had died in Quebec just jumped in his car to drive across country.

"He didn't pack his bags or anything. He was in his car driving... He didn't think that Quebec was 3,000 miles away. . . He didn't think of flying. All he thought about is 'I've got to get to Quebec.' So there is not a really good sense of judgement on many, many things. And they are easily swayed by their friends who say 'Oh, I want a candy bar. Go into that shop and steal a candy bar.' They don't get the sense of consequence..."

In fact, many young people with FASD end up in the correctional system. Aboriginal Saskatchewan provincial judge Mary Ellen Turpel-Lafond is a presenter at the conference. She recently caused waves in the justice community when she gave sentencing consideration to a defendant based on his FASD. The sentence has recently been overturned in the court of appeal.

Other Aboriginal groups that have found their own ways to cope with FASD in their communities will be sharing information, including a presentation from the FASD Mentorship Program developed by the Northern Inter-Tribal health Authority from Prince Albert, Sask.

For more information about the conference, contact Liau at 1-877-328-7744. Group rates are available.