EDMONTON — An Alberta man with autism has been unfairly denied the support he needs by a government program that relies too heavily on intelligence tests, the province's ombudsman has concluded.
"The regulation needs to be changed," ombudsman Kevin Brezinski said in an interview. "This legislation has been flawed for 10 years and it hasn't been amended."
Brezinski's office, which investigates complaints of unfairness by public bodies in the province, released Tuesday a report into the case of Evan Zenari.
Zenari received benefits under provincial legislation until he was 18, when he was cut off.
His mother, Janice Zenari, applied for benefits available to adults. A capacity test found he was incapable of making his own major life or financial decisions and his parents would be his guardians for life.
But the Persons with Developmental Disabilities program turned the family down. It said Evan scored 79 on intelligence tests, when 70 is the program's cutoff.
His mother appealed the decision.
"They didn't assess Evan as a person," she said. "He doesn't have those adaptability skills. He doesn't get real life."
While he's highly capable in some areas, she said her son would be confused about how to get home if she couldn't pick him up.
The report says two psychologists, including one with the disabilities program, said the score was an inadequate assessment of his capabilities.
The appeal panel wrote that "(the score) is not accurate or valid and that the panel cannot rely on it."
But because the regulations force the appeal panel to take intelligence tests into account, they were unable to reverse the government's original decision, Brezinski wrote.
His investigation found at least four other similar cases where an appeal panel couldn't overturn a ruling.
The province has said it will examine the regulation when it comes up for review in September. But it has refused to reconsider Evan's case.
"We have no intention of moving away from IQ requirements," Seniors, Community and Social Services Minister Jason Nixon said Tuesday in response to the report.
"We're committed to using IQ as our requirements for (the program) with other issues that people may be facing as part of the assessment process, and we are committed to our current requirements when it comes to be able to enter the program."
Nixon said the province spends $1.2 billion on Persons with Developmental Disabilities.
The ombudsman's report says a judge wrote in a 2013 decision that using intelligence tests to determine support eligibility is too narrow a criterion. Since then, the regulation has been reviewed three times and left unchanged.
Brezinski also consulted the Alberta College of Psychologists, which said assessors should use a range of yardsticks, including measures of how well someone functions in society.
While the program assessors did look at Zenari's school grades, Brezinski said that wasn't enough.
"They looked at school records. But they didn't look at all the other skills that are necessary to do a proper assessment, which they really can't under the regulation."
Marie Renaud, Opposition NDP critic for Community and Social Services, said the report reveals a widespread flaw in how Alberta supports people with developmental disabilities.
"There are hundreds if not thousands of people — Albertans — who are denied disability benefits because of an IQ score," she said.
It's a widespread problem within the program, she said.
The intelligence test cutoff applies to everyone who applies under the program, Renaud added. That includes not only those with autism but other severe conditions, such as fetal alcohol syndrome.
"Under this current (United Conservative Party) government, they are being very strict. They are adhering to every single line and regulation."
There are real consequences for people who can't get support, Renaud said.
"They are disproportionately represented in the justice system and in acute care."
She said the New Democrats tried to fix the program when they were in power but lost an election before those changes took effect.
Evan already receives Assured Income for the Severely Handicapped payments. His mother said he needs support, not money.
"He needs help navigating daily things, somebody to maybe shadow him in a position, someone to help him apply for a position."
Zenari, now 21, has done volunteer work but is anxious to find a job.
"He wants to feel he's made a contribution," said his mother.
But after three years without any support, except from family, his confidence is failing, she said.
"He's trying the best that he can ... he sees his dreams fading."
This report by The Canadian Press was first published May 7, 2024.
Bob Weber, The Canadian Press
