By Benjamin Davis
Canada has the highest rate of multiple sclerosis in the world, which is why Canadians needs us – more than ever before – to step up and take action to improve #LifeWithMS for those affected by the disease. Our own president of Government Relations, Benjamin Davis talks about his meetings with Members of Parliament.
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.
The number of people we met with who brought to light their personal connections to MS was a powerful reminder of the fact that Canada has the highest rate of MS in the world and of our urgent need for change.
Multiple sclerosis impacts all Canadians – not only the individuals living with the disease, but also their friends, families, workplaces and healthcare teams who all come together to manage the realities of MS. As we gather this summer to celebrate our country’s 150th birthday, we hope our government will step up and take action to improve life with MS for all Canadians.
Our focus this year – and every year – is on ensuring Canadians affected by MS have the opportunity to participate fully in all aspects of life. Day on the hill is our chance to focus our advocacy efforts on policy changes that would improve life with MS for people across Canada.
Our conversations revolved around topics like: Income and employment security; disability tax credits; access to treatments as well as physical spaces; comprehensive home care and age-appropriate long term care facilities; and a poverty reduction strategy that better reflects the realities of people living with chronic or episodic disabilities.
MAKING WORK … WORK
“You can’t live off of the CPP-D amount. And you can’t really work because they take the little they are giving you away if they find out you are earning money somewhere else. So you get stuck in a bad cycle that you can’t get out of.”
– Respondent, MS Society Listening Initiative, 2013.
There are currently seven programs offered by different providers federally, provincially and privately: Canada Pension Plan – Disability (CPP-D); Employment Insurance (EI) Sickness Benefit; Employment-Based Long-Term Disability (LTD) plans; Worker’s Compensation benefit; Veterans’ benefits; Tax measures; and Provincial/Territorial social assistance programs.
Part of our advocacy work is asking our government to improve program parameters and basic definitions of disability across the income, employment and support systems to include those living with episodic illnesses. Currently, Canada’s programs define disability and illness as a binary where a person either has a disability or does not which inadvertently excludes people living with episodic illnesses who may need intermittent time off.
We are also asking for an extension of the duration of the EI Sickness Benefit from 15 to 26 weeks to match the Compassionate Care Benefit and for the creation of a more flexible work-sharing program so that Canadians living with MS can work reduced hours while receiving EI income.
We are urging our government to create a system for the expert dissemination of information and hands-on support to employers on roles, best practices and resources when an employee or family member is diagnosed with a chronic or episodic disability, and requires time away from work.
MAKING ENDS MEET
“The issues in question are confronted by more than one million Canadians living with episodic or some form of chronic illness: you want to work, you can work, but the income and social support systems governing our labour market are designed with a binary switch – you’re either in the workforce and off assistance, or you’re out of the workforce completely and on assistance.”
– iPolitics, September 16, 2015
We would like to see disability tax credits made fully refundable and increased to put much needed income directly in the hands of low-income people with MS and other disabilities; eligibility criteria changed to ensure people with episodic disabilities have access to public insurance and tax credit systems for those unable to work or who can only work on an intermittent basis; the inclusion of all Canadians including those with episodic and progressive disabilities in the poverty reduction strategy; and an increase to existing federal benefits and credits for people with disabilities.
We want our government to establish clear, broad, inclusive definitions of disability and barriers. The legislation should include and protect all Canadians with disabilities whether they are visible or invisible, and whether they are permanent or episodic. This definition needs to include the notion of the changing dynamic of disability which is the case for individuals living with progressive neurological diseases like MS.
Access addresses all kinds of barriers: physical barriers in the built environment inside and outside buildings; communication barriers; technology barriers; information barriers; transportation barriers; attitude barriers; legal barriers; and policy or bureaucratic barriers in health, income, employment and disability programs. We hope to see our government be comprehensive and inclusive of all people with disabilities as they implement new accessibility legislation and ensure measures for its effective enforcement.
When it comes to access to treatments, we are asking our government to ensure that people with MS have equitable and timely access to treatments based on the best possible health outcomes rather than the ability to pay. Canadians living with MS need access through public drug programs to all Health Canada approved treatments for MS. We leaned on the Health Charities Coalition of Canada’s (HCCC) Access to Medicines recommendations in asking our government to address access to medicines issues through the creation of an advisory panel and development of comprehensive, evidence-based pan-Canadian Pharmacare standards. This would ensure that Canadians have equitable access to prescription therapies regardless of geography, settings or disease state.
It’s so important for health charities and the Canadians they represent to be active participants in federal, provincial and territorial consultations to support the development of standards that meet the needs of Canadians.
Equally important is our ask for comprehensive home care, including nursing and personal care, supplies (e.g. incontinence supplies) and equipment, meal preparation, home making, child care, rehabilitations, technology (home monitoring), and meaningful respite services. Provinces and territories need to be held accountable for delivering measureable improvements for those who need home care because of a long-term chronic disease and not only to those whose access to homecare is for short periods of time as is the case for those requiring post-acute or palliative care at home.
Finally, we’re asking the government of Canada to create a range of age-appropriate housing and care options for Canadians with disabilities who cannot remain at home – we’re recommending that they do this through the National Housing Strategy and the Health Accord. Additionally, we’ve asked for the creation of a nation-wide funding program for accessible home modifications for people with disabilities to remain in their homes.
WHAT IT ALL MEANS
Canada has the highest rate of MS in the world and therefore is often referred to as “Canada’s disease.” The often unpredictable and episodic nature of MS makes it particularly challenging in maintaining an adequate quality of life. This, along with the challenges of living with a disability, which has both visible and invisible symptoms and the barriers in support programs across all levels of governments, creates immense challenges for Canadian families.
As we celebrate Canada’s 150th birthday, we will continue to ask parliamentarians to take action now to improve life with MS for all the Canadians and their families and friends impacted by this disease.
HOPE ON THE HORIZON
Canada’s Minister responsible for Persons with Disabilities, Minister Carla Qualtrough believes that our country’s diversity is our strength—and that by including people with disabilities, we create a stronger Canada for everyone.
She recently announced that from May 28 to June 3, 2017, National AccessAbility Week will celebrate, highlight and promote inclusion and accessibility in our communities and workplaces across the country.
“We’ve made great strides in promoting inclusion for Canadians with disabilities, but there is still much work to do.To create a truly inclusive society, we need to change the way we think, talk and act about barriers to participation and accessibility—and we need to do it right from the start, not as an afterthought. An inclusive Canada is one where all Canadians can participate and have an equal opportunity to succeed.”
National AccessAbility Week will aim to bring this perspective to the forefront for Canadians, and highlight some of the important initiatives our government and its partners are undertaking to bring about this change.
Today, you’ll see we are now promoting the 7 principles to improve quality of life, recently endorsed by the the MS International Federation (MSIF) board. This valuable tool was created with input from around the world by member organizations and people affected by MS. We are proud that Canada could contribute to this valuable work. The World Health Organization also sees real value in the tool and feels it builds on their quality of life framework, and reflects real life experience from those affected by MS around the world. The principles illustrate the interplay between physical and mental health, social and other impacts of living with a variable, life-long condition, and will play a valuable role in our advocacy efforts moving forward.
Keep an eye on our Twitter @MSSocietyCanada and follow @AccessibleGC, @BJDSEA and hashtags #AccessibleCanada and #AccessAbility for the latest information.