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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 33,300 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.
It is likely that you are reading this because you have recently been diagnosed with multiple sclerosis (MS) or have experienced changes in your symptoms. You might be concerned about how you manage your MS in the workplace, and whether you should disclose your diagnosis to your employer.
Before you make any decision about your employment (current or future), it is worth considering talking to the experts. There are many strategies and interventions, services and supports out there that focus on minimising the impact of your MS symptoms to reduce productivity loss, reduce work limitations and prevent job losses or the need for dramatic change.
Each of our member organisations provide specialist MS employment support services (see links below), funded through the government’s Disability Employment Services (DES) program. This service is available for people living with a disability, injury or health condition to support them to receive assistance to prepare for, find and keep a job.
Although many people with MS do not consider themselves as having a disability, legally, the condition meets the criteria of disability as set out 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.
This also means that you might be eligible for supports and services under the National Disability Insurance Scheme. Eligibility rests on an ability to prove that, as a result of your MS symptoms, you might live with functional impairments that prevent you from participating in, or completing everyday things, like work – without some support. If you want to see if you are eligible, contact your nearest MS Organisation and ask them to assist you in preparing for access to the scheme.
There are lots of supports for employers too. An employer may be required to make reasonable adjustments to the workplace to accommodate the needs of the employee. Financial assistance for modifications, supports and adjustments are available through programs such as Job Access’ Employment Assistance Fund (EAF) or contacting Disability Employment Australia.
To assist employers in exercising their duty of care to protect employees under the Work Health and Safety Act 2011, they can access resources through Work Safe Australia or their local chapter of the Australian Chamber of Commerce and Industry.
The MS International Federation (MSIF) published the gold standard of principles that any person with MS should expect, which remains relevant today. Accessible and flexible work/employment, volunteering, education and leisure opportunities are some of the key principles to improve or influence quality of life.
In addition to the financial benefits, participation in the workforce has been linked in research to enhanced self-esteem and social inclusion, which can be important contributors to the overall wellbeing of people living with MS.1
Speak to a specialist MS employment advisor who can assist you and your employer through the various supports available.
1 https://www.msaustralia.org.au/news/tracking-work-productivity-of-people-with-ms/
Disclosing a diagnosis of MS is a very personal choice and the decision will depend on a variety of factors, personal values, your workplace situation and your perception of potential impacts of consequences if you reveal your disability or diagnosis to a prospective or current employer.
There is no legal obligation to disclose a disability unless it is likely to affect your job performance or ability to work safely.
Access to employment is a protected right under state and federal legislation. You also have legal protections, including a right to equal opportunity, to be protected from discrimination (direct or indirect), harassment and a right to privacy.
Making a decision to disclose your diagnosis to your employer can be difficult. Similarly, is knowing what strategies, or changes might be required. It is best to seek advice on these matters from the experts. They can provide you (and later your employer) with an assessment of what might work to improve your work environment whilst also connecting you to the relevant funding sources to make it happen.
If you can maintain your work role, continue to complete the tasks required, and do not present a risk to yourself, others, or the organisation, you may choose to delay disclosure or not disclose at all.
It can however be helpful to open up to your employer about your diagnosis if you think you need practical adjustments in the workplace that would assist you to do your job better. An employer is obliged to make such ‘reasonable adjustments’ (changes that allow people with disabilities to work safely and fairly).
Adjustments could be as little as increased flexibility through slight changes to your work pattern.
Changes could also be made to your physical environment. Some may only need minor changes at minimal costs, such as reviewing your workstation. Equipment, training or IT resources might be needed or in some cases, structural change to the physical workspace to make things more physically accessible.
If you elect to disclose, do not feel compelled to provide information beyond what is relevant to the workplace. For example, a discussion simply about fatigue and heat sensitivity may result in an agreement to enable you to work from home on very hot days, have access to a desk fan or air conditioner or work from a cooler location.
You are however required to disclose your diagnosis of MS if your symptoms prevent you from completing the essential tasks inherent to your work role, or if your functional impairments present an occupational health and safety risk to yourself of others. For example, a truck driver who experiences visual disturbances or takes pain medication that can cause drowsiness would be required to disclose their diagnosis of MS to the employer as the condition may impact safety while driving.
I was admitted into hospital with a severe relapse and I was diagnosed with MS that same week. I told my employer straight away; I was completely paralysed down my right side so I was going to be off for a while. I ended up being off for 4 months and when I returned I had a discussion with my employer about the reasonable adjustments we could put in place to enable me to continue at work. We agreed I would reduce my hours to 16 a week for a period of time while I recovered. It meant I was really productive when at work, and enabled me to take naps in the afternoon. I really appreciate my employer understanding and working around my MS.
Sommer, 35 years old.
We have an informative landing page with printable resources such as a key facts and figures about MS leaflet (in various languages), both a short or more detailed introductory guide called, Understanding MS that you can use to discuss or explain MS to your employer. There is also a great free online course for those with a more in-depth interest.
But the best way to start is just having a conversation. Most employers would like their employees to be open about what they need in the workplace to make them more productive and successful. And remember, you are the expert and know best what would work for you.
Receive support
While it is ultimately up to you as to whether you disclose your MS to your employer, it might help you to know that a study published in 2014 evaluating the relationship between the disclosure of an MS diagnosis at work and maintenance of employment showed that people who had disclosed their MS to their employer were more likely to remain employed1. This may be because disclosing employees may be receiving more assistance with workplace accommodations, social support and potentially more effective symptom management than non-disclosing employees.
1Kirk-Brown AK, Van Dijk PA, Simmons RD, Bourne MP, Cooper BK. Disclosure of diagnosis of multiple sclerosis in the workplace positively affects employment status and job tenure. Mult Scler. 2014 Jun;20(7):871-6. doi: 10.1177/1352458513513967
‘Many of us hold legitimate fears about ‘coming out’ because of the impact it will have on our work and friendships. I feared it would affect my career advancement. However, when I ‘came out’ I was overwhelmed by the support shown by my colleagues and fellow partners. I was also congratulated by clients. Another lawyer actually ‘came out’ to me admitting that she too has MS and a personal assistant also confided in me that she suffers clinical anxiety. It was so great not to feel alone and to be a sounding board for others suffering. I’m lucky to be in a workplace that encourages work life balance, that openly discusses mental illness and that has a dedicated human resource team that is passionate about stamping out inequality in our firm.’
Catherine, 32 years old
The employer has an obligation to consider the health of an employee and, if necessary, make workplace adjustments to enable a person with MS to work effectively and enjoy equal opportunity with others.
Depending on how MS impacts the employee, this could be as simple as:
Debunk the myths
Telling colleagues about MS creates opportunities to challenge the stigma often associated with the condition and educate the community about MS.
Having an opening conversation and being honest about MS and its impact can raise awareness of the condition and encourage advocacy in the workplace.
Managing symptoms in the workplace can model living well with MS.
Share experiences
We are all human. Often the sharing of challenges and struggles is reciprocated, and colleagues can provide strength, compassion, encouragement, or simply someone to talk to especially on a ‘bad MS day’.
Stigma
Employers and colleagues may hold negative views, or may have an inaccurate and outdated perception of MS.
They may anticipate the employee with MS will be unreliable, take a lot of time off work, work slowly, or need supervisors putting more pressure on them.
Assumptions
The employer may assume an employee with MS does not want or would not be able to cope with further training or a promotion due to symptoms of MS; they . may focus on your disability rather than the skillset and career aspirations of the individual.
Ignorance/Fear
MS is not well-understood adding to the importance of debunking the myths and challenging the stigma and assumptions still held by some employers. Not everyone is aware of the new generation of therapies that greatly reduce the frequency and severity of relapses thereby slowing disease progression. Similarly, it might not be generally known that we now have access to effective symptom-management strategies that could minimise the impact of symptoms on the workplace.
Be realistic:
Be honest with yourself regarding how MS is affecting you, your work role, and your own abilities and coping strategies.
Maintain a work-life balance encourages good mental and physical health and well-being and will likely contribute to making employment more sustainable.
A diagnosis of MS is a life-changing event, often prompting people to rethink their priorities and career aspirations. This can be a very positive experience. It may present as an opportunity to pursue something you have always wanted to do.
Equally, despite symptom management strategies and workplace adjustments, you may no longer want or be able to continue in your current role. This does not mean you have to stop work altogether as there are several other options you could explore.
Consider a different role with the same organisation. It will depend on the organisation you work for, but there may be an option to move to another role that allows you to better manage your symptoms of MS.
Have a change in direction: this may include training or study, seeking new employment, turning a passion into a business, becoming self-employed.
There are employment support services specialising in assisting people with MS to find suitable work. Contact your state MS organisation for more information about their employment support services and the Australian Government Disability Employment Services.
If seeking new employment, the same guidelines regarding disclosure of MS apply. It is however important to consider your digital presence as a potential employer may learn of your MS if they search you online. Consider the possible positive and negative outcomes of this scenario; it may be that debunking the myths surrounding MS is the best approach.
My employer gave me full paid leave after my diagnosis and told me to take as much time as I needed. I took a week and a half off because I was keen for things to return to normal. My first week back at work was probably one of the worst experiences of my life. I was one of the Senior Managers and found it very stressful being back. I was able to work from home but in the end work stress contributed to another relapse and I knew I had to make a change. I took some time out and decided to start my own business. A year later it is one of the leading companies in Australia. I tell all my clients that I have MS so that they understand my situation is sometimes out of my control and can support me. Everyone is compassionate and understanding. They know that when it gets hot I need to stay indoors and stay close to the air conditioning. If I’d stayed in my other job my MS probably would have progressed much more – I felt completely burnt out. For me it was so important that I still worked and now I’m in control of the gears so I can rev up and slow down as and when I want.
Claire, 34 years old
MSWA
(08) 9365 4888 or 1800 287 367
[email protected]
www.mswa.org.au
mswa.org.au/living-well/learning-about-conditions/multiple-sclerosis/working-with-ms
MS Plus (ACT, NSW, Tasmania, Victoria)
1800 042 138
[email protected]
www.msplus.org.au/support-services/employment-services
MS Queensland
1800 177 591
[email protected]
www.msqld.org.au/service/employment-services
MS Society of SA & NT
1800 812 311
[email protected]
www.ms.asn.au/how-we-help/multiple-solutions-employment-agency
Human Rights and Equal Opportunity Commission (HREOC)
HREOC has responsibilities for inquiring into alleged infringements under current legislation.
www.humanrights.gov.au
1300 369 711
Australian Government: Job Access and the Employment Assistance Fund
Funding applications for workplace tools and equipment can be submitted by an individual, an organisation, or a Disability Employment Services
www.jobaccess.gov.au
1800 464 800
