A diagnosis of MND can bring up questions about your work life and future plans.
Many people choose to keep working for as long as they can. Work can provide income, routine, purpose, and connection with others.
This summary is a starting point. The full guide, Employment & MND: for people living with MND has practical questions and advice to help you stay in work longer. It will help you understand your options, plan ahead, and make decision that are right for you.
The guide is part of a series about work and MND. There is also:
MND affects people in different ways. Changes in the way you move, your strength, speech, or the way you feel can affect your work over time.
Where you work and the kind of job you have will also influence what is possible in your work life. It can feel hard to decide whether to keep working, reduce your hours, or stop work.
Getting advice early from health, legal, or financial professionals, can help you make the right choice for your situation.
You do not have to tell your employer about your MND. But you must share this information if safety could be an issue.
Many people find that being open with their employer helps them get support, feel less stressed, and plan changes at work.
If you choose not to tell your employer and a problem happens at work, it may affect your rights or access to support at work.
It is against the law for an employer to treat you unfairly because you have MND.
Your employer must make reasonable changes to help you stay safe and do your job. This could include:
- flexible work hours
- working from home
- allowing more breaks
- altering performance
- supporting equipment and modifications.
There may be government funding to help pay for some workplace changes, such as equipment or modifications.
Changes to your work hours or role can affect your overall income, super, insurance, and other benefits.
You may be able to get support, such as income protection, total and permanent disability (TPD), or early access to your superannuation.
It is a good idea to get advice before making any changes. This can help you avoid affecting your benefits by mistake.
Think about the physical impact of your work, such as:
- physical strength
- repetitive movements
- fine motor skills
- prolonged sitting, standing or awkward positions.
Do harder tasks when you feel your best and take regular breaks.
Consider changes at work to support your needs. This might include using helpful equipment, and getting support from healthcare professionals, such as an occupational therapist.
It is also important to consider your mental health. Support services, like counselling or Employee Assistance Programs (EAP), can help.
Living and working with MND can be complex, and your partner or a family member can help support you. Sharing how MND affects your work, energy, and decisions can help them understand your needs.
As a carer, they may also need to think about their work options and plan ahead. Open conversations can make it easier to manage work and wellbeing together.
You may find it helpful to share Employment and MND: a guide for carers with your partner or family member who has a caring role and is working.
The way MND affects your work life will change over time, and your needs at work may change too. It can help to have open conversations with your employer and check in often.
Simple changes, like flexible hours or adjusting your role, can make a big difference. Your employer must make reasonable changes to support you and cannot treat you unfairly because of MND.
You may find it helpful to share Employment and MND: a guide for employers with your employer and colleagues to help them understand what they need to do to support you in the workplace.
Employment Rights and Workplace Flexibility
- Job Access
- Fair Work Ombudsman
- Australian Human Rights Commission
- Employer Advisory Service
Entitlements
- Services Australia
- ATO (early Access to Superannuation)
- Superannuation & of insurance law glossary terms
Equal Opportunity and Human Rights Commissions
- ACT Human Rights Commission
- Anti-Discrimination NSW
- NT Anti-Discrimination Commission
- Queensland Human Rights Commission
- Equal Opportunity Commission South Australia
- Equal Opportunity Tasmania
- Victorian Equal Opportunity and Human Rights: Commission
- Equal Opportunity Commission WA
More information about MND
Acknowledgements
- The Employment and MND guides were developed by MND Victoria in consultation with MND Australia and Tom Cobban, Berrill & Watson Lawyers.
- Sincere thanks to Todd Johnson, State Council President, MND Victoria, and those with lived experience whose insights have contributed to the creation of this resource.