Thank you, Mr. Chair.

Good afternoon. My name is Julie Kelndorfer, and I'm the director of government and community relations for the Multiple Sclerosis Society of Canada. I'm also one of the 90,000 Canadians who live with MS in Canada, a country with one of the highest rates of MS in the world.

I'm pleased to present to your committee on Bill C-265, an act to amend the Employment Insurance Act, regarding illness, injury or quarantine, and illustrate the important perspective of Canadians living with MS.

Today's trying times resemble what it's like to live with MS every single day. Every day people with MS wake up to adversity and do everything in their power to persevere: the woman with progressive MS who struggles to button her shirt in the morning yet is determined to dance at her granddaughter's wedding, the high school athlete who ignores the tingling and numbness in his legs to rally his team to victory, the lawyer with blurred vision and foggy thoughts, the father struggling to say his child's name, the avid cyclist feeling her balance go.

Canada has one of the highest rates of MS in the world. Canadians know that MS can be harsh, unfair, overwhelming, a disease that always takes away and never gives back, and always threatens to take again. MS impacts all Canadians, not only affected individuals but also their families.

Let me start with a story. Imagine this for a moment. A 29-year old university graduate, wife and mother to a one-year-old son, who is starting out her career in the non-profit sector, walks into her doctor's office one day and walks out not knowing the journey that lies before her. Why? It is because she has just been diagnosed with MS. That woman was me 17 years ago.

How would you react if you were told that you have an unpredictable, often disabling disease of the central nervous system affecting your brain and spinal cord, and they can't say what lies ahead? They tell you that you're one of 12 diagnosed with MS every day and that it happens to women three times more than men. The problem is that no one can tell you what, when and how severe will be the symptoms like those I have experienced: fatigue, pain, numbness, spasms, tremors, vertigo, weakness, to name a few. They can't tell you where they will happen. It depends on what part of the brain and spinal cord are affected, and this can vary greatly from person to person and from time to time in the same person.

I left the doctor's office that day, went into my car, called my husband and cried, telling him that, whatever happened, I didn't want to live in long-term care. Why was that my reaction? It was because that was what I knew of MS at that time. My aunt had passed away when she was in her fifties with a progressive form of the disease. She could no longer move on her own and speak except to nod her head. She lived in a long-term care facility with individuals two and three decades older than her, and I was scared that was going to be me.

I didn't realize there were others living with this disease who didn't have the progressive form like my aunt. They had what I had been diagnosed with, relapsing-remitting MS. This type of MS is characterized by unpredictable but clearly defined relapses during which new symptoms appear or existing ones get worse. In the period between relapses, recovery is complete or nearly complete to pre-relapse function—remission. Of people diagnosed with MS, 85% have this type, which is also referred to as an episodic disability.

When I was diagnosed I worried about our family's financial security. My son was just a year old when I was diagnosed. We were just starting up. We had a mortgage, a car payment, student loans and other expenses. What would happen if I had a relapse and couldn't work full time and needed to work part time while recovering? Were there financial supports that could help me?

What I learned and continue to learn more about every day, however, is that the current disability income and employment support programs were not designed with episodic disability in mind. Many support programs in Canada are designed to support persons with disabilities and are built with a binary switch—either you can work or you cannot work. There are not many people with episodic disabilities.

Employment is a key factor in maintaining adequate income and reducing poverty. Research shows that people with MS have disproportionately high employment rates, given their educational and vocational histories, yet many people living with MS who want to work struggle to do so.

Often the problem is one of flexibility, accommodation and a lack of understanding of episodic disability. It is critical that we move past the notion of work as a binary switch of you can work, which means no assistance, versus you can’t work, which means assistance. With more than 60% of people living with MS eventually reaching unemployment, it’s clear that more needs to be done to support those who live with episodic disabilities.

Unfortunately, the EI sickness benefit, which was designed to address these very issues, has been virtually unchanged since the 1970s. To put this into context, it was set up at a time when smoking on planes was legal, bell-bottoms were king and universal medicare was just getting on its feet. The program provides insured employees up to 15 weeks of financial assistance if they can’t work for medical reasons, provided they’ve qualified with over 600 hours already worked. While it is an important safety net, it also has outdated design flaws, most notably that rigid “on or off” switch that doesn’t work for those who need a gradual workforce reintegration or those who live with episodic disabilities.

For the 13 million Canadians identified in a 2015 report from the Institute for Research on Public Policy called “Leaving Some Behind: What Happens When Workers Get Sick” as not having short-term disability insurance, this means that at the end of 15 weeks they can either be recovered or receive nothing. The 2019 EI round table report noted that three of the four major parties recognized in their 2018 platforms that it’s time to extend the benefit from 15 weeks to more. We were so pleased to see the inclusion of the extension of EI sickness benefits in the [Technical difficulty—Editor] more Canadians supported by this benefit.

In 2019, this committee had a report called the HUMA committee report on episodic disabilities. That was the last time I was before this committee as a witness. It stated explicitly that Employment and Social Development Canada should take these important steps to better support people with episodic disabilities.

Having MS creates a life of uncertainty and unpredictability, but what should and can be certain and predictable are the supports that people with MS and episodic disabilities have. Now, in 2021, with the impacts of the pandemic ravaging our economy and the livelihoods of Canadians, the time for action has come. The MS Society, on behalf of Canadians who live with MS and the tens of thousands more who are part of our MS community, ask this committee to support the extension of the employment insurance sickness benefit.

Thank you so much for this opportunity to speak.

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