Thank you.
Good morning. Thanks to all of you for the invitation to be part of this panel.
I'll give you a little bit of background on who I am and where I come from.
I've spent the last 34 years of my career working on issues facing children, adults and seniors with disabilities, both here in Canada and through a number of consultancies throughout the world.
The first 12 years of my 34 years were spent at Statistics Canada, where I was responsible for the first two disability surveys that had been conducted and also for the very first aboriginal people survey that was conducted as a postcensal survey.
From 1996 to the present day and ongoing, I've operated my management consulting business. I've successfully completed over 90 projects, with the majority of them focusing on disability. In a major project that spanned three years with the U.S. department of labour statistics, I helped design questions consistent with the definition that was embedded at that time in the ADA, the Americans with Disabilities Act.
I've done similar consultancies—again, trying to take a definition and putting it into a series of questions—in North Korea, Colombia and New Zealand, and in two workshops with developing countries in Malta and Hungary.
There are three main points that I want to cover in my seven minutes.
The first is to advise you of the new data available on episodic disabilities from the 2017 “Canadian Survey on Disability”. Maybe you already know it.
The second point is to describe the research that my company has done, in collaboration with a number of people, that deals specifically with episodic disabilities.
Finally, my third point is to share with you my concern about not having in the current support programs a common definition of “disability” that has kept up with the evolution of the concept of disability, both here in Canada and internationally.
To my first point, you may already know this, but I'm excited to tell you that a collaboration between Statistics Canada, ESDC, Realize and my company resulted in questions being added to the 2017 “Canadian Survey on Disability” to identify the population with episodic disabilities. It was no small feat to get a couple of questions added to the questionnaire. We all felt that it was such a great opportunity, so it was well worth the effort.
Initial results from the survey were released on November 28. In the handout to you, I provided a copy of an infographic and a couple of bookmarks that describe some of the main findings. However, this release did not include any stats on episodic disabilities. It's my understanding that staff at Statistics Canada are available to handle any special requests. I've also been advised that the analytical file will be available to approved research projects through Statistics Canada research data centres in mid-January to late January of the coming year.
I'll now move on to my second point.
Episodic disabilities have been a part of my research since 2009. I've completed five research projects and I've just signed another contract for a sixth one using the 2017 data. For all six projects, I've been part of a team of researchers that included academics, independent researchers such as Cameron Crawford and John Stapleton, and various service providers and organizations.
The clients have been Employment and Social Development Canada, two SSHRC grants and the federal/provincial/territorial persons with disabilities advisory committee. Unfortunately, none of the research reports have been translated, so I wasn't able to bring copies with me today.
Each of the five completed projects was a building block for the next one, culminating in this fifth one, which I think will be of most interest to you.
In 2016, with funding provided by the Office for Disability Issues and with the support of organizations representing many of the health conditions that result in an episodic disability, we conducted a survey in which we heard from 953 Canadians who were living with an episodic disability.
Unlike the surveys conducted by Statistics Canada, it was not a probability-based sample. Rather, it included people with lived experience who took the time to complete an online questionnaire. The questionnaire focused on employment but also included three open-ended questions: What is most challenging about living with a chronic health condition? What do you think could be done to improve your quality of life? Do you have any additional comments about your experience living with an episodic disability?
The responses ranged from short answers about such issues as the unpredictability, having to work through pain and fatigue, unsupportive employers, need for financial support with medications and treatments, to longer responses that highlighted both the incredible supports received to the heart-wrenching need for more supports and more understanding.
It's a great resource because it gives the lived experience of 953 individuals who every day have to deal with life with an episodic disability.
Finally, I want to turn to the definition of “disability”.
What happened at Statistics Canada when we started the disability stats program was that we kept in line with the evolution of the concept of disability. The questions that are included on the surveys reflect that. Did the federal government keep that same evolution in mind with its disability support program? It hasn't. Not only that—and this is really disturbing to me—ODSP, the Ontario disability support program, seemed to have had a more progressive definition that included episodic disabilities, and now it is reverting back to the more restrictive one, the CPP disability benefit definition.
Those are my comments. That was a fast one at the end.