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This article was published 11/3/2011 (2208 days ago), so information in it may no longer be current.
When a child is born with fetal alcohol spectrum disorder, odds are great he will be in foster care by his third birthday.
The odds are just as great he will remain there until he ages out of the system at 18.
Some researchers report four of every five kids with FASD will not be raised by their biological parents.
According to a Manitoba study, at least one in six children in care in this province is known or strongly believed to have the disability.
But child welfare systems in Manitoba and elsewhere are still struggling to comprehend the magnitude of the problem and how to handle it.
"The child welfare system is still getting to the point where they are just beginning to understand FASD," said Don Fuchs, a social work professor at the University of Manitoba.
Fuchs has co-authored a number of research projects on FASD and the child welfare system. One published in 2007 estimated at least 17 per cent of the kids in foster care in Manitoba had been diagnosed with FASD or were strongly suspected to have it.
In Manitoba in 2010, there were more than 9,000 kids in care, meaning at least 1,500 of them had FASD.
Fuchs said his hunch is a number of kids were missed and that the real number of FASD kids in care is much higher.
Unfortunately, coming into care does not guarantee a child with FASD will be diagnosed. There is, Fuchs notes, no standard requiring every child to be assessed for disabilities, either cognitive or physical.
The child welfare system is not designed for that.
"The system is about trying to make families work," said Fuchs.
Most children with FASD who come into care don't come to the attention of social workers because of their disability. They come into the system because of their parents' alcohol or drug use.
On average, kids with FASD are taken into care when they are two and a half years old, Fuchs found in a 2008 study. Chances are they will be in care for an average of three-quarters of their life. That generally means, once they're taken from their parents, they never go back.
And that means, said Fuchs, no system is in greater need of understanding and meeting the needs of kids with alcohol-related brain damage than the child welfare system.
"It has major implications for how you understand foster care, how you train social workers and how you use resources," he said.
Donna Debolt, a former social worker turned FASD consultant, said, unfortunately the system's ability to handle the specific needs of FASD kids is not much better than their biological families'.
Young children with FASD are usually quite easy for foster families. They are generally compliant and can stay in one placement for years.
But as they get older, expectations for their behaviour change. Unfortunately, their behaviour does not.
"They don't change, but expectations do," said Debolt. "The child reacts by falling apart. The family reacts by thinking someone else can do it better and the placement breaks down."
Most kids with FASD will have a stable placement until their preteen years. Then they begin a sad path of bouncing between foster homes and group homes.
Debolt calls it tragic.
"The most important thing we can give these kids is placement stability."
Debolt said there are four things the system can do to help keep kids and foster families together longer: training; ongoing coaching and resource support; respite care; and therapy to help accept that these kids are not going to get better no matter how hard the foster families tries.
"Families need to be trained until they yell, 'Uncle,'" said Debolt.
Ongoing coaching helps them remember what they've learned and respite care offers both the parents and the kid a break when things get tough so the placement doesn't permanently break down.
"These kids are very hard to take care of and (families) need breaks," said Debolt.
Often times placements break down because families get so frustrated that all their talking and working with a child with FASD hasn't helped the child get better. Grief and loss therapy can help manage those expectations.
"This is about disability management not treatment," she said. "The damage has happened. We aren't going to fix it."
Steinbach-area foster parent Jennifer Friesen and her husband, Les, have had a crash course in the confusing mishmash of aid available to kids with FASD and their families, especially outside Winnipeg. Four of her five foster children have FASD.
"If foster parents knew what to expect and had coping tools and more support, there would be a lot less bouncing of kids in the system," said Friesen. "I see too many foster parents that have completely unreasonable expectations of their kids. And it causes huge frustration for everybody, and I think it causes even more psychological damage for the kids."
To understand how much extra help FASD kids and their foster families need one need only look at the money child welfare systems spend to cope.
In a 2008 study, Fuchs found nearly all FASD kids required special fees on top of the basic foster care rate, at an average of $15,617 per child per year. One child needed an extra $172,000.
That's money that goes for respite care, psychiatric and medical costs outside Manitoba Health coverage and higher foster fees to compensate foster families for the additional time and money they spend to look after FASD kids.
Nearly half the kids in care with FASD had also been diagnosed with mental illnesses such as depression or bipolar disorder.
More than 15 per cent of FASD kids also required exceptional circumstance funding for things such as criminal legal fees or renovations to a foster home to accommodate a disability.
There are signs the child welfare system is making strides when it comes to FASD. In 2008, the provincial government began funding an FASD specialist in all four child welfare authorities. Their aim is to help improve the diagnosis rates and help the system and families understand and receive training for the special needs.
The move was a recommendation of the Children's Advocate who looked at the issue of kids who die in care. The report found prenatal alcohol use was a direct factor in the deaths of 10 children in care.
-- with files from Mary Agnes Welch