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October 15, 2010
Working for a change
Addressing disabilities policies in Canada.
JEANIE KEOGH
Last month, a conference re-analyzing the needs of those with developmental and intellectual disabilities drew people from across the country who hoped to bring about much-needed change in Canadian health policy. For those unable to attend the conference, a free public forum, chaired and organized by Dr. Robin Friedlander, a child and adolescent psychiatrist and clinical associate professor at the University of British Columbia, was held.
Dr. Joan Beasley, director and co-founder of the U.S.-based Centre for Start Services, was the keynote speaker at the forum. Her organization offers consultation and training in crisis prevention, management and support for those with disabilities and their families.
Beasley, who formerly worked as a clinician, turned her efforts toward public policy and service development when she decided the health system wasn’t functional – resources were being wasted and there was little to show for patients’ progress.
“The best way to help someone is to actually know them, not evaluate them or assess them,” she said. “Ninety percent of what’s going on for them is because they can’t tell us, either because we’re not paying attention or we’re not listening.”
Beasley said health-care staff need to get to know a person’s developmental history, skill set and hobbies, what they look like at their best and get to know their families, rather than judging the person based on the medical reputation they might have.
Currently, however, patients are labeled with multiple diagnoses and over-medicated, and caretakers are not paying close attention to potential side-effects. Knowing the patient means doing away with trying to fit them into a category, said Beasley. This is the only way to figure out if they are benefiting from treatment, she stressed.
Her overall criticism of the system is the lack of collaboration across different disciplines. “It’s not a dialogue but a spiel,” she said, which leads to the real needs of patients getting pushed aside and costly programs that burden the system.
“There is a real disconnect between the people who are receiving the services and the people making the decisions about them,” she said.
Another obstacle to changing the system is the stigma that is attached to people with disabilities, she said. “Are they the same as me? More vulnerable than me?” are questions people have a habit of asking. To Beasley, whose mother was in a wheelchair and whose older sister has mental disabilities, people with disabilities are ordinary. “I don’t notice how many people are in electronic chairs going down the street,” she said. Yet, the attitude of people who find out she works with people with disabilities is: “You must be a saint,” she said. “We still have a lot of belief systems we need to change in our community in order for real change and permanent change to take place,” she said.
But Beasley recognized that most people trying to figure out a better way for the system to operate are doing the best they can under the circumstances. “There are no evildoers here,” she said. But at some of the places she has been asked to assess patients, the measure of success is found on a chart, “but, when you look at the patient, the reality is quite different,” she said.
Beasley gave an example of how the system failed Bobby, an autistic man who was locked in a forensics unit for 26 years after he threw a toilet at his mother at the age of 16. When Beasley met Bobby, he was under 24-hour, one-on-one supervision, was restrained on a stretcher when taken to medical appointments and had never left the unit. After Beasley worked with him, she figured out that he became aggressive when he was constipated. She was able to help the support team develop a common understanding about his physical symptoms and Bobby improved. Bobby now lives in a home with roommates.
Jeanie Keogh is a Vancouver freelancer writer.
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