‘Nothing about me without me’

Conference focuses on choice for persons with different abilities

The issue of choice as it applies to individuals with different abilities was the focus of a two-day conference held in Greenwich recently.

The conference, Independent But Not Alone: Supported Decision-making and Adults with Different Abilities, was held Oct. 24-25 at the Old Orchard Inn.

The topic is of particular interest and concern to the staff at the Kings Regional Rehabilitation Centre (KRRC) in Cambridge, which hosted the conference, and other similar facilities throughout the province, especially given the current debate over changes to the Incompetent Persons Act.

Dr. Michael Kendrick, an educator, advocate, consultant and author, is a well-respected voice in the international disability community. He was the special guest speaker for day one of the conference, on Oct. 24.

Kendrick is a former Valley resident and a graduate of West Kings District High School. He also holds degrees from both Saint Mary’s and Dalhousie.

Now the head of U.S.- based Kendrick Consulting, he has worked and done research in a number of countries worldwide.

He currently makes his home in the U.S., but regularly spends time in Nova Scotia and understands the issues facing Canadians with different abilities and their supporters as they strive toward good and valued lives in their communities.

“For years, people made decisions for the disabled,” says Kendrick, because it was commonly believed disabled people were incapable of making such decisions on their own.

In more recent years, however, there has been a shift in philosophy, he says, “to where those with different abilities are being encouraged and supported to make their own decisions.”

The phrase more often used as a slogan, he said, is “nothing about me without me.”

Even though this has been a movement for well over 50 years, there are still ramifications being felt and studied. One of the landmark decisions in terms of individuals with different abilities was the ratification, in 2008, of the United Nations Convention on the Rights of Persons with Disabilities.

Canada was among the nations to ratify the convention, which focused “a lot of attention on whether persons with disabilities are being given the opportunity to make decisions on their own lives,” Kendrick said.

The decision-making process, Kendrick said, “is a long learning curve” for everyone, regardless of their abilities, as they move from childhood to adulthood.

“Even the average person finds it a bit challenging at times,” he said.

In terms of persons with different abilities, “there has been great work and progress in the area.”

Kendrick is an advocate of “supported decision-making,” which “isn’t across the board, but rather targeted support,” taking into account that “every person with a disability is different, and unique in their own way, and what they might require in terms of support differs depending on the person.”

Generally, he said, “when we exceed our capacity, we turn to others for help – not necessarily because of a disability, but maybe it’s something we aren’t as familiar with.”

He points to health care as one example. “A lot of people are baffled by the health-care system. Say you’ve reached your 20s, and you’ve never asked anyone out, bought a car, planned a vacation by yourself,” he said. “When we find ourselves in unfamiliar territory, it would do us all good to have someone in our corner.”

Kendrick believes society is making strides overall in terms of choices for people with different abilities.

“Some jurisdictions began 50, 60, even 70 years ago, while others are just getting started,” he said.

“Since the U.N. Convention, it’s become more mainstream. We’re talking generational changes here. Sometimes it takes a while to experience movement.”

As “an evaluator of programs” in his field, this is one of the topics he looks at.

“Because I work all over the world, I often see good examples that I can then pass on to others,” he said.

He has a particular interest in people with autism, for example.

While people with autism can be very intelligent, “they can be disabled by their anxiety. They may also have troubles reaching out for support, maybe due to a lack of social skills.”

By providing support in a rational and targeted way, based on the specifics of what the person requires in the way of support, will better serve the individual, he says.

“We have to determine what works best for that person, identify their strengths and weaknesses. Who the person is becomes the starting point. You need to ‘find the shoe that fits’ in the way of support.”

The conference continued Oct. 25, with the scheduled presenters including Steve Estey, a Nova Scotian who worked on the U.N. Convention on the Rights of Persons with Disabilities; Halifax-based legal aid lawyer Susanne Litke, lead counsel for the 2016 charter challenge of the Incompetent Persons Act; and KRRC staff members Stephanie Mattson and Amy Smith.