moved:
That the Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities 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; that the Committee report to the House by February 2019; and that it be instructed to request a comprehensive government response to its report, pursuant to Standing Order 109.
Mr. Speaker, I am here today to discuss an issue near and dear to my heart. Like so many Canadians, I have experienced first-hand the trauma of a loved one being diagnosed with an episodic disability.
My wife Kathy was diagnosed with multiple sclerosis in 2004, and since then my family and I have worked to navigate the complexities of life with MS both for the individual and for the family.
In partnership with the MS Society of Canada, I am proud to bring forward private member's Motion No. 192, a motion to ensure persons with episodic disabilities like MS would be adequately protected and treated fairly within Canadian legislation.
The effects of MS are not just physical; they are also emotional, psychological and financial. When individuals or their loved ones are diagnosed with MS, life can suddenly turn on a dime. One day their body behaves normally and the next it refuses to listen.
MS can happen to anyone, without warning and often in the prime of one's life. MS is an unpredictable, chronic and often disabling disease of the central nervous system. MS is a disability with both visible and invisible symptoms, which can range in severity from moderate to severely debilitating. Loss of coordination, vision and cognitive impairments, extreme fatigue, bladder problems and mood changes are all associated with MS.
MS and all episodic disabilities impact most Canadians, not only the affected individuals but also their families and their friends who must come together to manage the illness. No one should have to face MS or any disability alone. There is an undeniable fact that episodic disabilities are treated differently than other chronic diseases and disabilities by government policy. These inequalities have negative effects on those living with episodic disabilities and their loved ones.
This motion seeks not only to address concerns for people living with MS, but for all Canadians living with episodic disabilities, including cancer, HIV, epilepsy, Crohn's disease, diabetes, arthritis, and the list goes on. The motion looks to support individuals living with episodic disabilities until one day we find a cure.
We need to remember that a cure is possible. Though there have been great improvements for people living with MS, there is still much unknown about this disease. However, researchers are zeroing in on what causes MS and are exploring ways to repair the damage it causes and ways to prevent MS from occurring. The best current evidence suggests lifestyle, environmental, genetic and biological factors all contribute. All these areas are being actively examined.
Studies funded by the MS Society are asking if certain risk factors such as gender, age, family history or lifestyle habits impact a person's susceptibility to MS. Until we find the answer, Canadians with episodic disabilities face challenges securing employment, income and disability supports. They struggle daily to access treatments, comprehensive care, housing and moving around in the communities where they live. For these Canadians, research is crucial to obtaining new treatments and a better quality of life.
Multiple Sclerosis impacts hundreds of thousands of Canadian families every year. Our country has the highest rate of individuals affected by MS in the world, with over 77,000 Canadians living with MS or approximately one in every 385 Canadians. That is a large number. Women are three times more likely to be diagnosed than men. These are moms, grandmothers, sisters, daughters and friends.
Christine Sinclair, two-time Olympic bronze medallist and a Canadian women's national soccer team captain, knows first-hand the impacts of MS as her mom lives with MS. She recently shared a story in a MS Society blog post.
She writes:
When you’re a kid, your parents are indestructible, and that’s what my mom was to me. Indestructible. But as years went by, I watched MS chip away at aspects of her life, and her fight against the chronic disease became tougher and tougher....
Today, my mom is still the strongest person I know and my number one champion. She currently resides in a care home, which can be challenging at times. Cognitively, she’s still my mom—friendly, social, and as sharp as ever—but physically, she’s placed in a facility where she is 20 years younger than everyone else.
MS is typically diagnosed between the ages of 15 and 40. These are peak years for Canadians who are getting an education, establishing careers and raising families. A student with MS may not be able to hold a pencil and complete an exam. A person with MS has difficulty holding down a job, because the disease is unpredictable in nature and causes lateness, absence and sometimes even an inability to type on a keyboard. A new mother diagnosed with MS may have difficulty holding and feeding her own newborn baby.
People living with MS are our co-workers, our families, our friends and our children. These are the people who are impacted by the disease every day, every hour and every minute, whether the symptoms show or not.
Marilyn Lenzen, diagnosed with MS 18 years ago, is one of these Canadians. She wants to ensure that supports are there for all Canadians affected by MS. For her, it is all about raising awareness.
She says:
People are willing to listen—they want to know what they can do to help change the lives of people affected by MS. MS needs to be viewed as an episodic disease, which sometimes keeps us out of the workforce. We need flexibility.
For me, this issue hits even closer to home. At the time of my wife's diagnosis, we owned a business we had built from the ground up. Kathy managed the office administration and payroll. When she was diagnosed, she lost complete use of her right arm. Being right-handed, she was devastated.
MS, along with other episodic diseases, is unpredictable. We had no idea how long the attack would last or if she would recover from it at all. Would it be permanent, or would she only partially recover?
Since the business was our own, we were able to make changes to Kathy's duties and pull some of our staff into the office to help. Many people with episodic diseases do not have that same luxury. When their episodes flare up, they may be forced to take time off work, resulting in lost wages or even a loss of employment.
For my wife Kathy, things like writing, filing and taking messages became very difficult, as did putting on her earrings and getting dressed, operating a can opener and folding clothes, and the list goes on. Thankfully, our children at the time were 17 and 13 and could help with all the household chores.
There are many people with MS who may not have the same luxury of a supportive family network to lean on. They might have to hire help, which can be very expensive.
Unfortunately, persons with episodic disabilities are treated differently, not only by society but by government legislation as well. While the symptoms of these disabilities are not constant, the lifestyle and employment limitations they cause are just as devastating as many permanent disabilities.
Support for persons with disabilities in Canada is built on a binary switch: either people can or cannot work. However, life for people with MS is not that black and white. For some, it is progressive in nature, with a continued worsening of symptoms over time. Some are able to work; others are not. Some can work part-time, with their episodic symptoms unexpectedly interrupting their work progress.
Programs like employment insurance do not adequately consider the episodic nature of certain disabilities, often forcing Canadians out of the workplace entirely or prematurely.
It is up to us, the Canadian government, to take a stand and make fighting MS and other episodic disabilities a priority. This motion would put the steps in place to develop better public policy to address people living with episodic disabilities like MS until a cure is available. It also seeks to ensure that all Canadians with disabilities are treated with equity in Canadian legislation. We need Canada's government to support critical steps to improve life for people living with episodic disabilities.
This private member's motion aims to achieve four key objectives: create better employment supports for people living with MS and other episodic disabilities; improve income and disability support for people affected by MS and other episodic disabilities; increase access to treatment, comprehensive care and housing; and invest in fundamental research for episodic disabilities like MS.
Updating employment supports and programs is key to making lasting progress by including “episodic disability” in the definition of disability. We want to make sure that people with episodic disabilities remain in the workplace longer and are able to perform their duties. We want to make sure that access is a reality. By making access a reality, we can increase access to treatments and comprehensive care and housing for those who need it. That is a win for all Canadians.
That is why I sponsored private member's Motion No. 192. It was to ensure that the needs of persons with episodic disabilities, such as multiple sclerosis, were adequately protected and to ensure equity in government policy to support Canadians across all types of disabilities.
I am asking members to join me in solidarity to take action to help improve the quality of life for people with MS and all episodic disabilities. Motion No.192 is a bold motion and only seeks to advance the quality of life for those living with episodic disabilities.
The text of the motion reads:
That the Standing Committee on Human Resources, Skills and Social Development and the Status of Persons with Disabilities 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; that the Committee report to the House by February 2019; and that it be instructed to request a comprehensive government response to its report, pursuant to Standing Order 109.
Let us work together to better understand the needs and concerns of Canadians living with episodic disabilities like MS and make Canada a leader in smart public policy through which everyone wins.