Thank you so much, Mr. Chair.
Good morning to members of the committee. As the chair mentioned, my name is Tammy Yates, and I'm the Executive Director of Realize. I'm also originally from Trinidad and Tobago. If anyone knows Trinis, we talk very quickly. I'm going to do my best. I can't promise, but I'll do my best.
Realize currently holds the secretariat of the national Episodic Disabilities Forum, otherwise known as the EDF. On behalf of all of the members of the EDF—many of whom are actually here in the room, so it feels like a reunion—I would like to thank members of this committee for leading this important discussion, as well as for the private member's motion, M-192.
The term “episodic disabilities” was first coined about 15 years ago by former board members of our organization, namely Kelly O’Brien, Stephanie Nixon and the late Elisse Zack, who was the founding executive director of Realize, which was then known as the Canadian Working Group on HIV and Rehabilitation, or CWGHR.
It makes me smile to be back on the Hill. About five years ago, Elisse Zack and I—prior to her transitioning into the next life—were presenting to this committee. It looked very different at that time. When we spoke about episodic disabilities, everyone in the room had a very strange, querying look on their face. It is amazing to be in this room here. We're all discussing episodic disabilities and we're all on the same page.
I also have a little information about the definition of “episodic disabilities”. The episodic disability framework was created to reflect the lives of people living with HIV at that time, based on the social model of disability, to describe the conditions that many of my colleagues mentioned. As Canadians are living longer, an increasing number of people are living with lifelong chronic illnesses that include episodes of disability. These illnesses include arthritis, Crohn's disease, MS, cancer and mental health conditions.
When we apply a life course approach to the topic, we are cognizant that many young people are also living with episodic disabilities. I'm sure that most, if not all, of you in the room know people living with episodic disabilities. You can therefore appreciate how these fluctuating episodes wreak havoc with someone's life in terms of social inclusion and participation.
Very early on in our advocacy and awareness-raising around episodic disabilities, we were joined by organizations like the DisAbled Women's Network Canada, the MS Society and the Arthritis Society. They were some of the earliest cross-disability organizations that collaborated with us. We all recognized that these groups of people living with these conditions were living with similar trajectories. However, the trajectories were different, so we developed three broader definitions, which I'll share with you now.
Episodic stable conditions are characterized by periods of relative wellness, interspersed with unpredictable and fluctuating periods, like severe migraines and HIV—now that HIV is a chronic condition.
Episodic degenerating conditions are similar to episodic stable conditions early on, but over time are progressive in their decline, such as Parkinson's or even, unfortunately, MS at times.
Episodic remissive conditions may start as episodic stable, but in some instances the person may have a full recovery or remission, as in some forms of cancer or mental health illnesses.
It would be remiss of me not to note at this juncture, however, the fact that Bill C-81, once it becomes an act, will be the first federal act to officially include episodic disability in its wording. Let me tell you something: In my office, when we read that, we were high-fiving each other. It took us 20 years, but we're here.
Over the past decade, an increasing amount of research on episodic disabilities has been done across diseases and conditions, as many of our academic partners and organizations that have been testifying this entire week have shared. We've developed at least 20 conditions that may be defined as episodic in nature. Ladies and gentlemen, that represents a significant percentage of our population in Canada.
We have a number of recommendations that we will be submitting. However, I would like to articulate three long-term recommendations and three short-term recommendations.
The first of the three long-term recommendations is that nationally, we establish a body, whether it's a commission or a federal committee, to oversee and report on the coordination between the interjurisdictional disability support programs and employment services areas to establish clear options for people with episodic disabilities within these disability programs.
The second recommendation is to make employment insurance sickness benefits more flexible.
The third recommendation is to negotiate, develop, pilot, and eventually implement, in tandem with jurisdictional-level government partners, an individualized funding model for income and social supports. There are examples of these individual portable models in jurisdictions at the moment.
For these three recommendations, I did not say a five- or a 10-year time frame. It may be another 20 years, but these recommendations are what it's going to take for people living with episodic disabilities to remain in the workforce and have full social participation.
Now, I have three short-term recommendations. When I say “short-term”, I mean these three things can be done within the next year.
First, when Bill C-81 becomes law as the Accessible Canada Act, the definition of disability that's now included in that bill should be harmonized across jurisdictions and across policies and programs to reflect that harmonized definition.
Second, we all mentioned community-based research and academic research that has been happening over the last 20 years in a very piecemeal and puzzle-like approach. Our recommendation is that a dedicated part of funding be provided for community and academic researchers, since it is imperative that we explore program and policy issues for women, for youth and for new immigrants living with episodic disabilities and for indigenous and other racialized groups who we know, from an intersectional perspective, will be affected differently and inequitably.
Finally, as the secretariat of the Episodic Disabilities Forum, Realize has been raising awareness about episodic disabilities for almost 20 years, as I shared. It's our 20th anniversary this year. We're the only national organization that has a dedicated staff member on episodic disabilities. However, we have been doing this without operational funding for episodic disabilities. Along with partners like CCRW, DAWN Canada, the MS Society, the Arthritis Society, and so on, who are current members of the EDF, we have achieved so much in this area, so that we're all here today, 20 years later. Therefore, the final recommendation is that...if we could do that without operational funding, can you imagine what we could do with operational funding?
Life is unpredictable, ladies and gentlemen. While you and I may not be living with an episodic disability today, it does not mean that tomorrow our life circumstances may not change, and we may then be diagnosed with an illness that is episodic in nature. To this extent, policies and programs, or revisions to policies and programs, that we have all suggested will not only work for people living with episodic disabilities currently, but they will work for everyone in Canada.
I use the term “everyone in Canada”, and not just “Canadians”. In three days, I will celebrate my one-year anniversary as a Canadian. Prior to that, I was a permanent resident of Canada. If I was living with an episodic disability and saw in a document that it's only Canadians who are eligible, it would have totally left me and my taxpaying dollars out of it.
Canada has always been a country of innovators and an example to other countries. We are the world leader on episodic disabilities. As such, the Government of Canada and all of you have the opportunity to maintain that leadership on episodic disabilities. We look forward to supporting the government and all of you on this.
Thank you.