Canada has one of the highest rates of multiple sclerosis and employers need to do more to accommodate, according to director
Canada has one of the highest rates of multiple sclerosis (MS) in the world; 90,000 people live with MS, and it affects women three times more than men.
COS spoke with Julie Kelndorfer, Director – Government and Community Relations, MS Society of Canada, about challenges facing the MS community and what workplaces can to do to ensure that they are safe and welcoming.
Kelndorfer herself is well acquainted with the disease.
“My journey has been interesting […] I grew up in a small town in Alberta,” says Kelndorfer. “My career path took an interesting turn. I was set to go off to a school of business [but] I spent a summer at our local auxiliary hospital and just loved working on the rehab side of things, so I moved my direction.
“I ended up doing a degree in recreation administration, with a focus on people with disabilities. I worked many years in the continuing care system. It was interesting, because I ended up working with a lot of women in particular living with very progressive forms of [MS].”
Kelndorfer’s aunt was diagnosed with MS, and then Kelndorfer herself was diagnosed with the disease after giving birth to her son in the early 2000s.
Kelndorfer says that there are four priorities that the MS community wants to tackle: employment security, income security, access to treatment and care and MS research.
An invisible disease
The issues that those living with MS are myriad and complex.
85 per cent of those with MS are diagnosed withy a type of MS called relapsing remitting disease – this means intermittent periods of wellness followed by periods of illness and disability.
“You never know when that will happen, [it’s] very uncertain and unpredictable. You could be fine one day and the next day some individuals are unable to walk, talk, do things on their own,” says Kelndorfer.
Due to the intermittent nature of this type, the disability can be invisible meaning that those living with it can face financial and practical challenges – and this is something that employers need to know.
Disclosure is a huge issue in the workplace. For many people who live with MS, it can be invisible to the outsider.
“They don’t necessarily have a manifestation that makes them look different than anybody else,” says Kelndorfer. Those living with it may not feel comfortable disclosing, or even feel the need to disclose.”
If employees chose to disclose, then the issue of accommodations come up. However, says Kelndorfer, “while accommodations are important, communicating is just as important.”
This is why the MS Society has partnered with the Institute for Work and Health on a project which involves communicating with workplaces about episodic disability.
“Episodic disability is a key consideration for the workplace. It is characterized as disabling conditions or conditions that are lifelong.”
And these can create uncertainty and unpredictability for both the worker and the employer.
The project focuses on both employers and employees on issues such as accommodation and disclosure, but also thorny issues like worker privacy.
“One of the key pieces of this project is to be able to help employers and employees be able to balance [privacy],” says Kelndorfer, “but also be able to help the worker and the employer with supports and accommodations.”
More flexibility needed
Among the other issues facing those living with MS, access to benefits and compensation (such as EI sickness benefits) is another problem.
Again, the unpredictability of the disease makes claiming benefits difficult.
“The problem with EI is that it’s still not flexible,” says Kelndorfer. She says that employees can relapse at multiple points during the day, but benefits do not allow flexibility and accommodation for this intermittent connection to work.
Nevertheless, she says, one of the positives of COVID is that it has allowed for some change in the flexibility of the EI benefits system.
Speaking on COVID, she says that we can draw some parallels.
“It’s been interesting the last couple of years what the world has experienced – it in some ways resembles exactly what it’s like to like to live with MS every day, that uncertainty and unpredictability. You never know what’s coming up [yet] so many people with MS persevere.”