Talented autistic teen caught in the cracks
For this 19-year-old, ‘school’ is transitory
For three weeks now, Jane Chang has set up a makeshift school for her 19-year-old daughter at the Community Living B.C. office in Westside Village.
A talented artist, Helen Kang usually sits in the lobby and draws or watches anime videos that inspire her artwork.
But in recent days, she and her mom were relegated to an exterior walkway, because Kang, who has autism, had been getting past reception and disrupting staff in the office.
Chang said the daily two-hour sit-ins followed months of failed efforts to get adequate supports for her daughter from CLBC, the government agency that oversees services for adults with developmental disabilities. She said the family went through a long planning process before Kang turned 19, only to be offered placement in a program that Chang deemed unsafe for her daughter.
The program was located near a busy road and Chang feared that her daughter, who sometimes bolts from her caregivers, might run into traffic. The program also lacked a “sensory room” where Kang could go to calm herself if she became over-stimulated.
Chang, a single mother, rejected the placement and said lack of a suitable alternative has disrupted the entire family. Her 18-year-old son also has autism.
Without a place to go each morning, Kang tends to sleep all day and stay up all night.
So Chang, who had hoped to return to school to improve her English skills and find employment, is forced to stay up and keep an eye on her daughter.
“It’s not safe, because Helen went out at midnight once before, wandering around,” she said. “After that, I couldn’t sleep. If Helen don’t sleep, I don’t sleep.”
Chang said the situation improves if Kang has structure to her day, which is why they have been going to CLBC’s office each day. “Helen thinks this is school, so she tries to get up to get here.”
She wants her daughter placed in a five-day-a-week day program at Garth Homer Society, which, she believes, would allow Kang to pursue her artistic talents, expand her social network and find employment.
CLBC showed little interest in approving that proposal until this week, Chang said. But, on Monday, after a Times Colonist reporter interviewed Chang outside the Victoria office, the agency offered Kang two days a week at Garth Homer. On Tuesday, the agency upped that to four days a week, with a chance for a fifth.
“CLBC recognizes that the transition that happens at age 19 can be a stressful time for individuals and families,” CLBC communications director Randy Schmidt said in an email.
“Our staff always aim to work closely with people with developmental disabilities, and their families, to assess disability-related needs and locate appropriate supports.”
He said the planning for day programs can take time depending on a person’s needs, family preferences and available programs.
“We respect the right of families to voice concerns, and we always take them seriously. We have done our best to ensure the safety of the mother and her daughter during their times at our office, allowing them to sit in the office when possible and regularly checking on them, while continuing to work to find a resolution.”
Chang said that she’s happy with the latest offer, but disappointed that she had to go public with her daughter’s story to get results. “Actually, I am an introvert,” she said. “I don’t like [being] in public. It was kind of embarrassing to me. But I have to do that for my child, as a parent.”
She expressed concern for other families still without supports. “I’m happy with my case,” she said. “At the same time, I’m not happy because I know many, many families with a child with special needs [are] suffering. They need support, but they are waiting.”