Plans are under way to build a multimillion-dollar “knowledge centre” in Vancouver for British Columbians affected by autism spectrum disorders (ASD). Although the Pacific Autism Family Centre has many supporters, the private initiative is also facing opposition.
The plan is for the PAFC to be set up as a “hub and spoke” operation, with the hub—a research, assessment, treatment, and support centre—in Vancouver and satellite centres throughout the province. The Liberal government has committed $20 million in funding to assist with the project’s capital costs.
Signs of autism are usually present by age three, according to Health Canada. ASD is four times more prevalent in boys than in girls. Many people affected by ASD have trouble communicating, have limited interests, and display repetitive behaviours.
Dawn Steele, a co-administrator of Moms on the Move (MOMS), a nonprofit group formed in 2001 by parents who were concerned about budget cuts to services for children and youths with special needs, says that a large-scale project in Vancouver is the last thing people with ASD need.
“Spending money on a $20-million capital facility is the dumbest thing you can do in a province like British Columbia, where the population is widely dispersed,” Steele said in a phone interview. “That money should be spent on expanding existing services, with an emphasis on early intervention.”
Steele is especially angered about such a large sum being directed toward a “megaproject”, given that so many funding cuts, including those to intensive behavioural intervention programs for children with ASD, have negatively affected people with special needs and their families.
It’s not just the amount of money involved that has Steele and other MOMS members riled. It’s also the way the PAFC planning is taking place.
The organization is currently holding focus groups in various communities throughout the province. It’s inviting parents, family members, service providers, professionals, and anyone else affected by ASD to learn about existing services and find out how the centre could meet varying needs in different regions. Steele is concerned that such consultations are happening at the behest of PAFC and not the government, saying this not only presents a conflict of interest but will also result in biased information that’s not necessarily reflective of community priorities.
“This is breaking all the rules, breaking all the processes of responsible governance,” Steele said. “Who is setting autism policy in this province? Is it the ministries with responsible mandates in consultation with stakeholders in a transparent and policy-driven process? Or has a private society now been given responsibility?”
Steele and her MOMS co-administrator, Cyndi Gerlach, recently wrote an open letter to Premier Gordon Campbell, calling on the provincial government to “cancel any further provincial funding and technical support for PAFC until the Ministry’s own consultations demonstrate whether this project is consistent with province-wide community priorities for improving services and supports, as demonstrated through open, objective and transparent Ministry consultations”. (The letter is available on the MOMS website at momsnetwork.ca.)
According to Gwyn Symmons, project manager for the PAFC, planning is in the early stages and the centre has been reaching out to all members of B.C.’s ASD community for input.
“The purpose of the focus groups is to look at what are the gaps in services and how can we address them,” Symmons told the Georgia Straight in a phone interview. “We’re going to different regions because some of the feedback we’ve heard is that they’re tired of people speaking for them from the Lower Mainland.
“One of the key themes that’s emerged so far is that it [autism] is a really challenging condition, and being a parent with a child somewhere like Powell River is doubly difficult,” Symmons added. “There’s a shortage of services and a long wait time for assessments.”
Symmons said that the reason for having a knowledge centre is to make it easier for people in the province to find “evidence-based information” and get help.
“I think there’s a fear that money is only going to go to the building, and I don’t believe that’s true,” he said, adding that with provincial support, he predicts private donations would increase.
He added that the MOMS open letter is “full of errors”. For instance, the PAFC won’t have a swimming pool, as the letter states.
Deborah Pugh, the mother of a 19-year-old affected by ASD and the executive interim director of Autism Community Training—a nonprofit information and referral service—is supportive of the centre.
“Things have improved drastically in the last 15 years, but it’s time to really make another push,” Pugh said in a phone interview. “There’s a lot of quiet desperation. People can become despondent and desperate, and it’s worse when you’re outside the Lower Mainland. We need to pull together and focus on children and families.”
One of the sites PAFC is considering is next to Sunny Hill Health Centre for Children, but Symmons said negotiations are continuing and no arrangements have been finalized.
Vancouver businesswoman Wendy Cocchia holds an annual golf tournament for women in the media to support the centre. She has contributed to the B.C. Liberals in the past through her company, Century Plaza Ltd.
According to the PAFC website, the centre will open in late 2013 or early 2014. The site also states that PAFC strives to “provide and advocate for fair, equitable and inclusive access to services regardless of location or economic situation” and to “help B.C. become the best place in the world for people with ASD and their families”.