The real price of a drink
Tragic social tab of fetal alcohol syndrome prompts MP's bill
By Carol Sanders

Christopher and Ryan: the night and day of FAS
The Winnipeg Free Press
Sat, Mar 3, 2001

NEARLY three decades after it was first diagnosed, fetal alcohol syndrome has become an epidemic in parts of Manitoba, costing taxpayers nearly half a billion dollars more to treat each year.

Every year in Manitoba, 240 babies are born with birth defects and brain damage caused by their pregnant mothers' consumption of alcohol. Health officials say each will cost society $2 million in extra health, education, justice and social services spending and lost productivity during their lifetime, amounting to a $480-million hangover that's rapidly getting worse.

One-quarter of the prison population has FAS. Our schools are struggling to teach kids branded unteachable. Social services are swamped with adults who can't hold down jobs and parents who can't care for children -- who are often the hardest to care for.

"In some communities, it's reached epidemic proportions," said Winnipeg North Centre NDP MP Judy Wasylycia-Leis, who's introduced a private member's bill calling for warning labels on alcoholic beverages.

In 1996, a Liberal member's bill was voted down after intensive lobbying by the alcoholic beverage industry. But Wasylycia-Leis expects to win this fight now.

The U.S. has since adopted the warning labels and Canadians are starting to see the devastating impact of the incurable but preventable disability, she said.

Globally, three out of every 1,000 babies born worldwide have full-blown FAS and five to 10 times as many have some degree of impairment, but researchers say those numbers may be "significantly higher" in aboriginal communities.

And Manitoba's aboriginal birth rate is booming.

Statistics show the aboriginal birth rate is four to six times higher than the general population. By 2015, 20 per cent of Winnipeg's population will be native.

At one First Nation school in Northern Manitoba, researchers found roughly 100 cases of FAS per 1,000 births. And for every child identified with fetal alcohol syndrome or some of its effects, there were probably two or three others with behavioural and learning problems caused by exposure to alcohol in utero, they said.

"It's beginning to alarm people," said Val Surbey, the adoptive mother of three fetal-alcohol-affected children, one of whom is 13 and "in care" after being kicked out of school, having run-ins with the law and being hit by a car playing chicken in traffic.

She estimates Christopher has already used up one-third of the $2 million experts say he'll cost society with social services, health and psychiatric care and now the involvement of the justice system.

Christopher's stuck himself in the arm with a needle he found in the schoolyard, gotten into fights, hit teachers and started fires inside and outside the school.

Too often, FAS kids end up like Christopher, who was adopted at 2 1/2 after he was apprehended from an abusive home, Surbey said. Diagnosed too late and written off as bad and unteachable at adolescence, they often end up "as guests of the state" -- in prison or on welfare, she said.

But if life-long supports are in place, kids with FAS can grow up to be contributing members of society, Surbey said.

The Association for Community Living -- Manitoba is asking Health Canada to fund a study of adults living with FAS in Northwestern Ontario and Manitoba. Executive director Dale Kendel said yesterday they want to study FAS adults in 27 different housing situations to see what works best.

Agencies are quick to point out FAS isn't an aboriginal problem but a societal one, and there's always hope. The front-line workers who deal with the families are among the most optimistic.

'Tremendous change'

"Some women have made tremendous changes," said Darlene Hall, executive director of the Aboriginal Health and Wellness Centre of Winnipeg Inc., one of two Winnipeg agencies offering the STOP FAS program. It provides mentors for three years to women with drug and alcohol addiction to help them succeed in treatment, parent their children, connect with community supports and find stable housing and employment.

Judy Brandson has worked at Anne Ross Day Nursery for the past 20 years and sees many reasons to be hopeful.

Many of the centre's "at-risk" children are parents, now, and using the day care renovated with FAS preschoolers in mind while they work or attend school, she said.

The 45 children at the centre today are healthier, and parents are becoming more empowered, Brandson said.

Across the street from the day care, nestled next to a low-income housing project, the educational prototype for children with FAS is being built. Teachers from across North America are watching David Livingstone School as it breaks new ground developing an education system that works for children damaged in the womb by alcohol.

Backlog

The FAS assessment unit at the Health Sciences Centre has a backlog of kids waiting for diagnoses. The youngest take priority because early intervention is so key. Last year, they had 543 referrals, said Mary Cox Millar, co-ordinator of the Clinic for Alcohol and Drug Exposed Children.

About 200 cases are waiting to be dealt with.

Dr. Sally Longstaffe who runs the HSC's Child Development Centre said there is no simple way to diagnose FAS. A geneticist, a pediatrician, a speech pathologist and other professionals are involved, and medical and social histories have to be reviewed.

Maia McGillivray, 26, was diagnosed with FAS at age 3, when little was known about FAS. Today, she's on the lecture circuit.

"I give advice to teachers, caregivers, and parents about what it's like having FAS," said the 26-year-old who lives in River Heights with her adoptive family. She's happy now but adolescence was hell, said the woman with a slight speech impediment. She was teased and felt like a "freak" in schools where her condition was never understood and few services were available.

The heartache of McGillivray and Surbey's experiences is just part of what's fuelling Wasylycia-Leis's fight for FAS warnings on alcoholic beverages. Her son Nick has a rare genetic brain disorder.

"I have personal knowledge and interest in children with disabilities."


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