TAKING ACTION TO IMPROVE #LIFEWITHMS
Continue ReadingBy Benjamin Davis
As the dust settles on our annual Day on the Hill and carnation pinning ceremony on Parliament Hill, I’ve been reflecting on the importance of the nearly 80 meetings we had with parliamentarians and staff in our nation’s capital.Recognizing caring Canadians: National Caregivers Day
Continue ReadingCaregivers are the backbone of our health care system and home care programs. They contribute an estimated $25 Billion of unpaid care annually.
Canada has the highest rate of multiple sclerosis in the world and caregivers make it possible for Canadians living with MS to stay in their homes while receiving the care they need, an important consideration in assessing quality of life, especially given the lack of available age-appropriate long term care. (more…)
Chronic illness in the workplace: One company’s success story
Continue Reading“The measure of a society is found in how they treat their weakest and most helpless citizens.” -Former US President Jimmy Carter
Living with multiple sclerosis can indeed make us feel helpless sometimes. It can wear down our physical abilities and our personal agency to shape and take control of our lives. Sometimes in more progressive manifestations of the disease, a person can quite literally become physically weak and helpless. MS can deprive us of the peace of mind that predictability and security bring. It can steal the simple joy of play. It can erode the satisfaction that comes with working on something we love – the feeling of a job well done.
Cause a commotion: Four things the Ontario government can do for MS
Continue ReadingImagine for a moment that you could take days off for medical appointments – or because of a short relapse – without worrying about losing your job. That your loved ones could act as caregivers without worrying about what it means for their income. That you had access to government funded physiotherapy programs with trained MS specialists that could drastically improve your ability to walk. And that going out for dinner wasn’t limited to the few restaurants with fully accessible washrooms.
You shouldn’t have to imagine what life would be like with access to these things – we believe that they should be the norm. Canada has the highest rate of multiple sclerosis in the world. And when it comes to accessibility, we’ll stop at nothing to ensure that people living with MS and other chronic or episodic illnesses and disabilities are properly represented and included in the discussion.
Face-to-face with Canada’s planned accessibility legislation
Continue ReadingLast May we asked Canadians affected by MS what independence means to them. The resounding answer was that having the ability to work, to get around and to make informed choices about course of treatment are all essential to maintaining independence. The common thread here is accessibility.
There are a lot of ways to advocate for better accessibility in Canada. Our federal government is currently developing new planned accessibility legislation to promote equality of opportunity and increase the inclusion and participation of Canadians with disabilities in our communities – and you can be part of this discussion.
Our federal government wants to hear from you
Continue ReadingYOUR GUIDE TO MAKING YOUR VOICE HEARD
by Benjamin Davis
What does true accessibility look like? The ability to access one’s surroundings is crucial to living a life without barriers, but true accessibility is more than just a physical issue. There are so many issues that fall under the umbrella term “accessibility”: timely and flexible access to employment and income supports; quality medical care and treatments; reliable public transportation; education and counselling; support for family members and caregivers; workplace accommodations; and advancements in MS research leading to better symptom management and quality of life for people living with multiple sclerosis.
An important thing is currently happening in government: federal representatives are working to establish legislation for accessibility, and you can get involved through a series of consultations. These consultations are a huge starting point for change, a very exciting sign of progress, and a meaningful step towards better inclusion of people with disabilities in our communities. People with episodic illnesses like MS should be a part of this much needed overhaul, and we encourage you to participate in the consultation process.
Removing barriers: Improving accessibility in Canada
Continue ReadingWhat does true accessibility look like? The ability to access one’s surroundings is crucial to living a life without barriers. True accessibility, however is more than just a physical issue. The access puzzle for a person living with MS must include: timely and flexible access to employment and income supports; quality medical care and treatments; reliable public transportation; education and counselling; support for family members and caregivers; workplace accommodations; and advancements in MS research leading to better symptom management and quality of life. Achieving true accessibility means removing barriers that put you at a disadvantage. The burden of removing such barriers should not fall on the person living with a disability. Some people do find it energizing to work towards effecting positive change in their communities. Karen was diagnosed with MS in 2010 and advocates for more accessible spaces in her community.
We have made considerable progress in making our society more inclusive, but there is still work to do. Canadians with disabilities continue to face barriers in their daily lives. What does an accessible Canada mean to you? Please take the time to participate in our online consultation or to attend one of our public sessions in person. Together, we will make history.
— THE HONOURABLE CARLA QUALTROUGH, MINISTER OF SPORT AND PERSONS WITH DISABILITIES
An open letter to our Prime Minister
Continue ReadingDear Mr. Trudeau:
In its proposed Bill C-14, the Government of Canada introduces a vague criterion for eligibility to medical assistance in dying, a criterion which is nowhere found in the landmark Supreme Court decision to which the legislation responds. The requirement that death must be “reasonably foreseeable” in order to qualify for medical assistance in dying lacks clarity. This requirement may prevent those who face grievous, intolerable and irremediable suffering but whose death is not imminent from exercising their constitutional right. In doing so, it would shift unduly the burden of defining what is intended by this criterion through lengthy court battles to a person whose right potentially may have been abrogated.
Photo courtesy of CBC/Reuters
The Government of Canada must not place this burden on people whose intolerable suffering is the very reason for this legislation. That’s why we are calling on the Government of Canada to seek clarification from the Supreme Court of Canada in a reference to determine whether or not the requirement at 241.2 (2) (d) of Bill C-14 that a patient’s death within a period of time is not too remote is consistent with Carter v. Canada.
A reference to the Supreme Court in this matter has two significant advantages. It brings clarity in a timely fashion. By leaving the meaning of ‘reasonably foreseeable’ to be defined by the courts with the potential for appeals means such clarity could escape us for decades. Physicians and other health professionals deserve clarity in considering requests for medical assistance in dying. Placing the burden of decisions to permit medical assistance in dying on health professionals without sufficient clarity introduces the risk that many will opt to not grant the right to such assistance.
Imagine for a moment living with insufferable pain, without the autonomy to move, swallow or speak, and with fatigue that makes even the smallest task overwhelming. For some, with very progressive forms of multiple sclerosis, such a life is intolerable.
The MS Society of Canada respects and values the autonomy of all persons with MS in making decisions that affect the quality and outcome of their lives. That includes the choice to live a full and rich life in dignity in a place of one’s choosing with adequate and appropriate supports, surrounded by loved ones. And the choice to seek medical assistance to end one’s life, a right granted to Canadians by the Supreme Court of Canada in February 2015.
The choice to be free of suffering, to peacefully die with the assistance of medical professionals, should not be taken away from those who are in greatest need of the choice because of lack of clarity in the legislation. Their suffering is cruel enough.
Sincerely yours,
Valerie Hussey, C.M., Chair, Board of Directors
Yves Savoie, President & CEO
Tackling the burden of disability: MS in the workplace
Continue Reading**UPDATE**
On September 12, the Conference board of Canada released the report The Value of Specialty Medications: An Employer Perspective which will further guide Canadian employers through improving access to specialty medications for their employees – so that people living with MS can remain in the workforce when they want to.
**UPDATE**
On May 24, the Conference Board of Canada released the report Multiple Sclerosis in the Workplace: Supporting Successful Employment Experiences. In their press release, the group states, “While Canada has the highest rate of multiple sclerosis (MS) in the world, we may not be doing enough in terms of providing appropriate workplace accommodations and income supports for this population and their caregivers.” (The French version of the press release can be found here.)
Key findings from the report are very much in line with the Institute for Research on Public Policy’s (IRPP) report titled Leaving Some Behind: What Happens When Workers Get Sick; and ACTION on MS from the MS Society’s Listening to People affected by MS initiative. This report outlines some key actions that can be taken by employers, governments, and other stakeholder groups, including:
- positive employer attitudes and accommodations for employees with MS
- early use of interventions and disease management strategies
- better and more coordinated employer and government supports
So what does this mean? It means we have one more piece of concrete evidence to take to our governments to raise awareness and effect change. It means we have more tools to advocate for crucial changes that will have a real impact on the working lives and financial future of people living with MS and their caregivers. Watch this space to follow our progress! (more…)
World MS Day 2016: Choosing independence
Continue Readingby Ben Davis, Vice-president, Government relationsThe concept of independence is as personal as multiple sclerosis itself. For some people, independence can mean living within what I’ve heard someone call their “version of normal”. For others, independence can mean a great workout or carving out time for meditation. It can mean summoning the courage to ask for help. Independence can mean a great many things, and this May leading up to World MS Day on May 25, we’re celebrating all of the ways that people affected by MS maintain independence for themselves. (more…)
As the dust settles on our annual Day on the Hill and carnation pinning ceremony on Parliament Hill, I’ve been reflecting on the importance of the nearly 80 meetings we had with parliamentarians and staff in our nation’s capital.
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