Tackling the burden of disability: MS in the workplace

**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!

By Andrea Butcher-Milne

I started advocating for people with MS when I turned to the MS Society back in 1998 to ask for help gaining access to my CPP benefits. They were being denied to me because I had an episodic disability. My mother had MS, I’d been diagnosed with the disease myself the year prior. They helped me find my way through the system, and in return I decided to get involved.
One of the biggest challenges I’ve faced as a person living with MS is navigating the system. It can be hard to step up and ask for the benefits and help you’re entitled to when your options aren’t made clear, and accessing those options involves jumping through hoops. How can we have a voice and be heard when we don’t even know what our voice is supposed to be used for? So often, we’re afraid to ask for help because we don’t want to rock the boat too much! We shouldn’t be afraid to rock the boat, because that’s how change happens–that’s why helping people navigate the system is such an important issue for me.

Last month, I attended a roundtable discussion about tackling MS in the workplace. I was glad to see people around the table whose professional roles could potentially improve the lives of people affected by MS. A representative from Employment Canada was keen to understand the various programs that needed to be adjusted for people with MS. Staff attended from the Ontario Disability Support Program (ODSP), which is responsible for ensuring you are financially supported if you have a disability. I was also surprised to find representation from insurance companies; it’s so important that they hear first-hand the real experiences of people living with disabilities, and what it means when a person is denied coverage.

It was great to hear insurance companies talking about investing in more wellness benefits; things like ensuring employees have access to rehabilitation services like physiotherapy, which could have a huge impact on symptom management and quality of life. Making those types of tools more accessible to people would widen the range of options they could choose from when it comes to managing their symptoms.

We also talked about the importance of supporting people through career transitions; putting programs in place that would allow a person to go back to school if they can no longer perform the tasks required in their current job; and providing people with the tools needed to maintain their own livelihood before forcing them to rely on disability benefits.  For me, what this boils down to is providing people with the tools they need in order to remain in control of their own lives, maintain their independence and feel confident and fulfilled despite all of the things that are changing in their lives.

I was diagnosed with MS in 1997, and I still can’t believe how much the landscape has changed in the last two decades. We have so many more options now than my mother did when she was diagnosed. The landscape is still changing, and the MS Society recognizes that we need to keep pace with that. That’s why I choose to work with them to advocate for our rights—because we have the right to live in a society that is fully inclusive of people living with all disabilities. This is how I’m fighting to end MS.

Today is International Day for Persons with Disabilities. Please show your support by tweeting with the hashtags #idpd2015 and #inclusionmatters