This article is part of our special report The Brain and Multiple Sclerosis.
SPECIAL REPORT / While many people who suffer from multiple sclerosis are highly skilled, 50-60% can expect to be unemployed after receiving their diagnosis despite the fact that only little adaptation in the workplace is needed to keep them employed, experts say.
The economic burden of healthcare costs related to brain diseases such as multiple sclerosis has increased from €386 billion in 2004 to €798 billion in 2010 across 30 European countries, according to the European Brain Council (EBC).
Aside from the drastic increase in healthcare costs, Europe is also losing a highly-educated group of young workers as many lose their jobs shortly after being diagnosed. This happens although employers only need to make small adjustments in the workplace to hold on to a young employee with multiple sclerosis. Around 70% of Europe’s 600,000 people with multiple sclerosis are diagnosed with the disease in their 20s and 30s.
Shoshana Pezaro, who was diagnosed with multiple sclerosis at the age of 28, though she had lived with the symptoms of the disease for years, has a university degree in theatre and film and landed a job in television immediately after graduating. As a production coordinator, she sometimes worked two days without stopping though she would lose the feeling in her arms and would need help to get dressed in the morning and be taken to work.
Eventually, Pezaro decided it would be better to become self-employed in Brighton, England, and set up her own business with 13 employees teaching piano, singing, dancing and drama, to control her working hours.
However, Emma Rogan, who works as a project coordinator at the European Multiple Sclerosis Platform (EMSP) in Ireland, said that people living with the condition have different symptoms that vary in type as well as severity.
This means that some might be able to work full-time with only small adaptations at work.
“Fatigue is a symptom for many people with multiple sclerosis, me included," Rogan said in an interview. "However, a planned rest period during the day means I continue my work and complete tasks. To facilitate this my employer last year put a reclining chair in the building. For others it’s about having their lunch hours extended so they go home and take a rest,” she said.
Multiple sclerosis is a potentially disabling disease, which strikes the white matter of the brain and spinal cord and affects the rest of the nervous system. It has great consequences for society as more than one million people are affected indirectly through their role as carers and family members, according to the EMSP.
Younger people between 20 and 40 are the ones who are the most often diagnosed with multiple sclerosis, and women are diagnosed twice as often as men. Both Pezaro and Rogan were diagnosed in their 20s.
Focus on SMEs and self-employment
Pezaro cited the example of a friend with multiple sclerosis who was able to keep her job at a large energy company because the firm had been “fantastically supportive”. For example, the company has ensured flexible working hours for her and has made sure she could sit close to the toilet and a window to prevent her from overheating.
“She doesn’t need physical adaptation, but she knows that if she did need a large screen that they understand her needs and are willing to talk about it. She doesn’t even fear of losing her job. She feels like her work is valued,” Pezaro stressed.
Rogan added that keeping an employee with multiple sclerosis isn’t only good for the person concerned.
“When word gets out that you are an employer who takes such considerations, it’s great for business and it opens up a whole new market,” she said.
But while a large energy company in Britain was able to keep an employee with multiple sclerosis, Pezaro said that the real issue in the EU is the lack of government support for SMEs which employ around 80% of the EU’s workforce.
While the EU has also established a youth unemployment scheme where national governments can apply for funding, it remains to be seen how much money trickles down to young people with disabilities.
“If one of the people working for me had multiple sclerosis and was suddenly off, I would have really struggled financially to keep the business running. There’s no financial support in place for small businesses if someone is off,” Pezaro stated.
Self-employment is another way for people with multiple sclerosis to get to do what they are passionate about, according to Pezaro. But had she been diagnosed with the disease before she set up her business, she wouldn’t have succeeded to get business insurance, loans or overdraft.
“The banks would just have said ’no’,” she said. “So I think to support people to be able to work independently and set up their own enterprises, we really need to look at how that can be funded and where the grants could come from so that people could have equal opportunities.”
The question of quotas
While other disability groups have called for quotas to force companies to hire people with disabilities and to make sure that job centres keep them as a priority, Pezaro said that idea would make her “fearful”.
“I could imagine that I could be forced into a job that was not appropriate for me. It would be demoralising and awful. A non-recognition of my skills and talent. That’s what I fear. On the other hand, I can see how that could be positive in making people make an effort with disabled people finding employment. I would just be concerned that it wouldn’t be appropriate employment,” she emphasised.
Concerning quotas, Rogan referred to the example of the number of women in politics and the under-representation of half the population.
“As long as there isn’t an equal playing field, there needs to be quotas. When it comes to people with disabilities and quotas for employment, I think in general terms they are useful. However, there must be processes in place to follow through. If someone with a disability has specific experience, qualifications and skills in one area but is offered a job which is a complete mismatch no-one is going to benefit,” the EMSP’s Irish project coordinator stated.
EURACTIV has asked several members of the European Parliament who have dealt with issues related to multiple sclerosis and employment in the past, what more could be done in the EU to keep young people with multiple sclerosis employed in the EU. They all declined to comment.