It is likely you’re reading this because you have an employee who has recently told you they have Multiple Sclerosis (MS).
MS is the most commonly diagnosed neurological condition in young people, affecting over 25,600 Australians. Three quarters of all people with MS are women. People are typically diagnosed when aged in their 20s and 30s, but children and older people can also be diagnosed.
Multiple sclerosis (MS) is a chronic, autoimmune disease that attacks the central nervous system (the brain, spinal cord and optic nerves). It is non-infectious and non-contagious.
There are different types of MS. Most people live with a relapsing form of MS with active disease symptoms that come and go. A smaller percentage of people live with a more progressive form of MS, where symptoms slowly worsen over time.
The progress, severity and specific symptoms of MS cannot be predicted as they can attack multiple areas of the central nervous system. The symptoms of MS can be both visible and invisible to others, are unpredictable and vary from person to person and from time to time in the same person. No two people with MS have the same experience.
MS may affect a person visibly through changes to their mobility and coordination, or invisibly including neuropathic pain, visual disturbance, heat sensitivity, bladder urgency and sensory issues such as numbness, tingling and burning in the skin. Physical and cognitive fatigue is common for people with MS. Living with the changing nature of MS can be both physically and mentally demanding.
MS is a lifelong disease for which a cure is yet to be found; however, doctors and scientists are making discoveries about the treatment and management of MS every day. The new generation of disease modifying treatments greatly reduces the frequency and severity of relapses thereby slowing disease progression, changing long held perceptions about living with MS. In fact, with the right supports, most people can live a close to normal life.
Due to its varied nature, there is no ‘one size fits all’ approach to managing MS in the workplace. Some people have no need to alter their role or working conditions, while others may benefit greatly from small and reasonable adjustments.
There is a strong business case1 to retain valuable employees and employ people with disabilities. It is easier than most people think. And it’s less costly than recruiting and onboarding a new staff member. There is quite a lot of support for employers through various government programs. In most instances, reasonable adjustments to meet an employee’s needs are minor.
A Disability Employment Service Provider (DES) can do the hard work of recruitment, assessment and providing advice on any potential adjustments and modifications. These services provide both disability management and employment support services. Our member organisations offer specialist MS employment support services (see links below) through the DES program specifically geared to support employers and employees, including how to connect your business to financial supports to fund any proposed modifications.
An employer may be required to make reasonable small adjustments to the workplace to accommodate an employee’s changing needs. The MS employment support services might connect you to Australian Government’s Employment Assistance Fund (EAF). The EAF provides financial assistance for eligible people with disability or mental health needs and their employers to purchase or fund work related modifications, equipment, assistance and support services and even Auslan supports. Some examples include covering the cost of modifications to the physical workplace, modifications to work vehicles, the purchase of communication devices, first aid training and even disability awareness training for the rest of your workforce.
Although many people with MS don’t see themselves as having a disability, the condition meets the definition of disability in the Disability Discrimination Act 1992 (Cth). This definition applies from the moment a person is diagnosed with MS regardless of how it affects them.
Depending on their role or the type of your business, you might also wish to review work processes in relation to worker health and safety. An employer has a duty of care to protect employees under the Work health and Safety Act 2011.
To allow for ability diversity at work, you might need to make reasonable adjustments to the employee’s work or to their work processes to enable the employee to get the job done. This involves conversations, consultation and planning, noting the inherent requirements of a position that are the essential activities and tasks that are carried out to get the job done and relate to results rather than how this is accomplished. Specialist assessment and consultation support (i.e. Occupational Therapy workplace assessments) are available through our members’ specialist MS employment support services. Advice is also available through Work Safe Australia and the Australian Chamber of Commerce (or your local Member of Parliament).
Additionally, your employee might also be eligible for additional supports through the National Disability Insurance Scheme. Participants can use their plan funding for frequent and ongoing on-the-job employment supports and to build skills important for them to maintain employment.
Employers are not required to make adjustments that would lead to unjustifiable hardship. Should you be worried about cost, please contact one of our specialist MS employment support services (listed below).
Should an employee with a disability require a workplace adjustment to be able to work or be able to participate equally in aspects of working life, and that adjustment could be reasonably provided but was not, then this may be considered ‘indirect discrimination’.
It is worth remembering that it is unlawful for an employer to treat unfairly, harass, or discriminate against a person, or allow this to happen, in the workplace. It is also unlawful to discriminate against a potential employee because they have MS.
There are various federal, state and territory laws in Australia to protect people from discrimination and harassment. “A quick guide to Australian discrimination laws”, produced by the Australian Human Rights Commission might be helpful, please visit: https://humanrights.gov.au/our-work/employers/quick-guide-australian-discrimination-laws
1 Australian Chamber of Commerce and Industry: Employ outside the box – https://www.australianchamber.com.au/wp-content/uploads/2018/01/eotb_-_disability.pdf
A person may be diagnosed with MS at any stage of their working life without impacting their expertise or value to the workplace. It would be prudent for an employer to be open to learning how this employee could best be supported – and thus retained – in the workplace. This is most often best achieved by opening dialogue with the employee by having a ‘can do’ attitude.
For many people with MS, having a supportive employer is what enables them to remain, and thrive, in the workforce .
Demonstrating an open, responsible and productive approach to people with MS (and those with other medical conditions and/or disability) fosters a positive workplace culture for all employees and presents an inclusive and socially responsible organisation to customers.
Following my diagnosis, I had approximately 13 weeks off work, during which time I attended weekly physiotherapy, occupational therapy and speech therapy.
I requested a compassionate transfer to an office closer to home, which was granted.
Upon return my new manager offered assistance and we arranged an ergonomic assessment of my work area. Following recommendations, changes were made to the positioning of my desk, computer screen height and position. A new chair with arm rests was purchased which allowed my right arm to be supported at all times and reduced the drop from my shoulder which was the result of my initial right-side paralysis. I was also given a two-handed mouse launch bar which reduced the movement of my damaged right shoulder. This mouse sits at the base of my keyboard and requires two hands which helps to assist my right hand which has very poor movement and control.
I was able to significantly reduce my work hours albeit temporarily. My work has been open to the hours going up and down again based on my level of functioning. I’m currently working 20 hours a week and will take leave again in September for round two of Lemtrada (MS Treatment).
It helps me so much that my manager is so supportive of my situation. She understands that some days I significantly struggle to get out of bed and is happy for me to come in later or switch my days around. We communicate via text or telephone on a regular basis about how I am feeling.
My manager also has an open-door policy, whereby I can talk to her at any time about work or my health needs and worries.
Sommer, 35 years old
Have a conversation:
A study published in 2014 examined the types of psychological support that people with MS require after disclosure of their diagnosis to maintain their employment status.
Employers that demonstrated trust and inclusive decision making, and focused on the employee’s abilities, resulted in employees having increased feelings of trust and appreciation and a stronger belief in their own capabilities.
This reduced their intentions to leave the workplace. Employers that focused on disabilities, such as re-allocating tasks or adjusting working arrangements without consultation with the employee with MS, resulted in a reduced sense of trust and respect by the employee and reduced confidence in their own abilities. This made leaving the workplace more likely.
1Kirk-Brown AK, Van Dijk PA. An empowerment model of workplace support following disclosure, for people with MS. Mult Scler. 2014 Oct;20(12):1624-32. doi: 10.1177/1352458514525869
2Davis SL, Wilson TE, White AT, Frohman EM. Thermoregulation in multiple sclerosis. J Appl Physiol (1985). 2010;109(5):1531-1537. doi:10.1152/japplphysiol.00460.20
People with MS have just as much education, skill and ambition as they did before their diagnosis. They are valuable employees – worthy of retention and hiring.
Astrid, 33 years old.
Make reasonable workplace adjustments if required:
A reasonable adjustment should respond to the needs of the employee and be determined in consultation with that employee.
Many adjustments cost little or nothing to put in place and may include:
My employer was amazing when I was recovering from a relapse.
They delivered a laptop to my apartment and assigned me with email access and a number of spreadsheet jobs that needed regular attention. I got paid on an hourly basis depending on how many hours I could handle. To be able to wake up each morning, turn my laptop on after only a brief shuffle to the couch, and still feel a part of the business and work that I loved meant so much.
I felt a part of a community of people that cared about me and crucially, I felt that I could still contribute something to the business, no matter how small, as I worked towards recovery.
Claudia, 38 years old.
Tel: 1800 177 591
MS Society of SA & NT
Tel: 1800 812 311