At 21, Benjamin Lohner can’t be left alone for long. Having both Down syndrome and autism, he needs someone who can read his cues, calm his anxiety, and redirect his impulses before they turn destructive.
But after leaving the school system, the level of care he received dropped sharply, and his mother, Tamara Hodgson, is pleading with the province for more help after he recently had an outburst where he wrecked parts of their James Bay residence.
“The second week of spring break, I was at my wits' end because the anti-psychotic medication didn't work very well,” said Hodgson. “All the things that would normally bug him really bugged him.
“He destroyed his bedroom and my hallway, threw everything out the window, took everything off the walls, and just overall was being really unsafe.”
The mother of two said this episode stemmed from a lack of appropriate support, and a constantly changing list of prescription drugs meant to stabilize Lohner's mood — an approach that, she said, has only made things worse.
But things weren’t always like this with Lohner.
From kindergarten to Grade 12, Hodgson said her son always had access to one-on-one support provided by the school. Through the years, Lohner and his helpers would develop a mutual bond, which would taper down his anxiety and help him avoid potential triggers.
Everything changed when he graduated from Victoria High, leaving the school system behind and entering the world of adult care.
To help prepare for the transition, a tool called the Guide to Support Allocation (GSA) was used, which assesses an individual’s needs and determines the appropriate level of support they are eligible to receive.
“When you're in high school, there's all this paperwork that you fill out basically to prove how independent or how not independent your child is,” explained Hodgson. “Depending on the result of this assessment, this will determine the level of support they will receive [as an adult].”
According to the GSA, administered by Community Living BC (CLBC), a score of one means total dependence, while a five indicates total independence.
Lohner was determined to be a four.
This score provides her son with a three-on-one staffing model, meaning Lohner shares one worker with two other individuals, Hodgson explained.
The mother disputes the test’s results.
“I'm not happy with the fact that the [GSA] is not a correct tool for him,” said Hodgson. “It's not showing the reality.”
Since her son transitioned to Garth Homer a year and a half ago, a CLBC-funded activity centre for adults with disabilities in Saanich, she said his overall quality of life has decreased.
While Hodgson (and Lohner) truly appreciate the service and care provided by Garth Homer, the level of support provided by the Crown corporation is insufficient, she said.
Being in a new environment and overstimulated can heighten Lohner’s anxiety. This, in turn, can trigger “impulsive,” “inappropriate,” or “unsafe” behaviours, which Hodgson attributes to his “dual diagnosis conundrum.”
The result is Lohner has been excluded from specialized transport, unable to access activities, and prevented from reaching his full potential, claims the mother.
“He's just not able to be as successful in his program, like going swimming or doing outdoor things,” she said. “He just needs that person to have eyes on him to see what he's thinking and look ahead just to help and guide him.”
Lohner’s occasional outbursts led Garth Homer to request the help of a crisis response team.
When Hodgson requested a reassessment for her son, she said CLBC shifted the responsibility back onto her.
“They said, ‘I'm sorry, but his GSA is four, and you need to find the right medication,’ so we're still plugging away,” she said.
From the insomnia-inducing Fluoxetine in high school to the drowsy Clonidine, weight-gaining Risperidone, triggering Abilify, and worsening Rexulti, Lohner has tried them all, Hodgson said.
Going through a roller-coaster of moods, this cocktail of drugs left Hodgson concerned for her son’s well-being.
“I felt really pressured to get him on a drug, as opposed to having the proper amount of human support,” said Hodgson. “I was scared that he was gonna get kicked out.
“I feel like CLBC needs to provide some more funding to Garth Holmer for more support so that he, and everyone else, can be safer… and enjoy [their] activities.”
In a written statement to Victoria News, CLBC mentioned that, although they can’t comment on specific cases due to privacy reasons, they remain committed to ensuring that clients receive the services and support they need.
They highlighted that they have policies and tools to support “fair and unbiased decision-making” and engage with service users, striving to meet all their requests despite challenges and limitations.
“CLBC… works within a budget, and requests for service are always greater than available funding,” reads the statement. “CLBC prioritizes requests to ensure those with the most urgent needs receive services as soon as possible.”
Garth Homer CEO Geoffrey Ewert said the organization works with families to provide the best possible support and services, even in the face of adversity.
“When there is a significant gap between the needs of the person and the resources made available, we do our best to be innovative and solutions-based,” reads Ewert’s written response. “While these efforts… are not a permanent solution nor sustainable, we recognize the pressures families are under and we will always do everything we can to support them."
