“This is a historical moment that we’re fortunate to be a part of,” Benjamin Davis, senior vice-president, Mission, MS Society of Canada.
Life with multiple sclerosis is unpredictable. There are good days with no symptoms and your body feels like it belongs to you again. And then there are those days. The bad ones when even getting out of bed seems like an insurmountable challenge. Days when your body refuses to listen to the most basic of commands.
Sit up. Stand. Walk.
Days that can sometimes stretch into weeks, even months, of being in a body that no longer feels like your own.
For many people living with MS, this is their reality.
MS is categorized as an episodic disability. For some people, symptoms such as fatigue, vision problems, mobility and cognitive issues flare up periodically without warning and then resolve, either fully or partially. In about 15% of people diagnosed with MS, the disease will steadily progress from onset, without defined flare-ups. Regardless of the course the disease takes, a level of uncertainty is created for people living with MS. How do you plan your life when you’re not sure how you’ll feel tomorrow? The day-to-day things we take for granted – having a job, running errands, cooking dinner – can be challenging for people living with MS given the disease’s unique symptoms.
For years, the MS Society has advocated for secure income and employment, and improved access for Canadians living with MS. Although broad categories, the one thing we’ve continued to strive for is the acknowledgement and support of MS being an episodic disability when it comes to legislation and recognition of this by our country’s decision-makers.
Private members’ motion M-192, Episodic Disabilities, does just that. It asks:
That the Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities (HUMA) be instructed to provide recommendations for legislative and policy changes necessary to ensure that the needs of persons with episodic disabilities caused, among other things, by multiple sclerosis, be adequately protected to ensure equity in government policy to support Canadians across all types of disability.
Our systems within Canada were set up in a way that includes a very narrow definition of disability and doesn’t allow for Canadians with episodic disabilities to fit within it. This motion asks the HUMA Committee to help breakdown those barriers and look at the ways we can improve the lives of all Canadians living with episodic disabilities.
The list of 11 recommendations included in the HUMA Committee report, Taking Action: Improving the Lives of Canadians Living with Episodic Disabilities include:
- That Employment and Social Development Canada review and reform Employment Insurance sickness benefits to better support people with disabilities, including episodic disabilities. This includes the consideration of allowing workers to claim benefits in smaller units (hours or days) rather than weeks; and extending the duration of benefits beyond 15 weeks.
- That Employment and Social Development Canada work with Finance Canada to review the eligibility criteria of the Canada Pension Plan disability benefit.
- That the federal government consider amending the Income Tax Act to ensure that recipients of the Canada Pension Plan disability benefits are eligible for the Disability Tax Credit.
Sometimes a lengthy process, private members’ motions are used to introduce a wide range of issues and are framed either as orders or resolutions, depending on their intent. Private members’ motion M-192 was brought forward by Fort McMurray-Cold Lake Member of Parliament, David Yurdiga. Mr. Yurdiga’s wife lives with MS so this was an issue close to him and his family.
The notice of the motion was placed in May 2018. It was debated in the months after and it was agreed to in November 2018. Witnesses presented testimonials to the HUMA Committee in November and December 2018. The HUMA Committee then adopted the motion in February 2019. Their report, Taking Action: Improving the Lives of Canadians Living with Episodic Disabilities, was tabled in the House of Commons on Friday, March 22, 2019 by the Chair of the HUMA Committee, MP Bryan May.