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This article was published 20/12/2014 (2707 days ago), so information in it may no longer be current.
The Winnipeg family of Christopher Surbey has a strong interest in the political debate about whether judges should have more flexibility when sentencing criminals who have fetal alcohol spectrum disorder.
They believe the justice system failed Christopher, who had FASD and was stabbed to death when he was 17.
In 2005, Christopher slipped out of his unsupervised apartment and into the night. By morning, he was dead on a street in Elmwood. Throughout his short life, his adoptive family said they tried their best to raise him, but the system constantly lacked the supports needed to help him thrive.
Before he moved out, they resorted to putting an alarm on his bedroom door to stop him from sneaking off.
"He was in 'treatment' with Macdonald Youth Services when he was killed," said his mother, Val Surbey, adding air quotes as she spoke.
"We had gone there because no therapy would touch us unless we had him in a voluntary placement agreement with Child and Family Services. That's what we did to access treatment with an agency that basically touted themselves as having lots of experience with FASD, but they'd never coped with anybody like Christopher before," she said.
Christopher didn't look like he had FASD. He spoke well, and showed none of the common facial markers such as a flattened nose or small eyes. But she said he had no ability to understand the consequences of his actions.
When he landed in court for assaulting staff and damaging property at Macdonald Youth Services, there was no accounting for the brain injury that no one could see.
"When he went to court, my husband went with him," Surbey said.
"He had to sign a paper that he really had no idea what he was signing: He had to keep the peace, he couldn't bear firearms, and he couldn't do this or that, and of course, he breached every one of those in the first week. He didn't get it. He could probably recite it to you, but couldn't put it into practice," she said.
For people with FASD, one of the most frustrating challenges is what Val calls the need for an "external brain." Christopher needed support with things such as short-term memory and understanding consequences. He needed a network of people around him to do what most of people can rely on their own brains for -- making sure they get to appointments on time, not repeating the same mistakes over and over.
Christopher's struggles with the justice system are typical for people who have FASD. There are no official statistics to indicate how many people in the justice system have it, but anecdotally it's high. A study underway at the Whitehorse Correctional Centre in the Yukon aims to quantify for the first time just how many people locked up there suffer from it. It's expected to wrap up in 2015.
When people with FASD end up in the justice system once, they often get stuck there.
Conservative MP Ryan Leef of Yukon sought to improve options for judges dealing with FASD offenders.
His private member's bill, presented last April, would have created a legal definition of FASD and given judges the power to order assessments for people thought to have FASD. Judges could craft more appropriate sentences and probation orders, ensuring people get the supports they need.
As an example, Val pointed to one case in B.C. Judge David Vickers "told the probation officers to go away and come back with a program that fit the needs of a young man with FASD, because he recognized that jail wasn't the place for him," Val said.
The man in question loved to skate, so the judge ordered the probation officers to take him skating regularly, adding structure and routine to his life.
Had that kind of flexibility been available to Christopher, he might be alive today, she said.
But Leef's bill was withdrawn last month and sent instead to the parliamentary justice committee for study.
The federal Liberals accused the government of spiking legislation that flew in the face of its tough-on-crime stance and promised to introduce their own version in 2015.
Surbey has another adopted son, Ryan, who also has FASD. In contrast to Christopher, Ryan shows how well the system can work when the right supports are in place, his mom said.
When he was an infant, Ryan received occupational, physical and speech therapy and had a support worker in school. Now, he's a university psychology student, taking classes a few at a time, trying to balance school with his job at a grocery store.
"I tend to not really identify as a person with FASD because it hasn't really had much of an impact on my life," Ryan said, "but for most people in the system who have it, some leniency should be given."