Government update

Find out about current government issues that impact upon people living with motor neurone disease (MND).


starter plan for people living with MND entering the national disability insurance scheme (NDIS)

The MND starter plan was developed by MND Australia, NSW and Victoria and provided to the National Disability Insurance Agency (NDIA) to inform the development of the Planning guidance for People Diagnosed with MND entering the NDIS. 

This NDIA Practice Guide for MND has been distributed to NDIA planners to assist them to understand the progressive and complex nature of MND.  It is designed to highlight to planners the need to take into account the current and future needs of a person with a diagnosis of MND. The aim is to ensure that a person’s initial plan contains sufficient supports to reduce the need for repeated plan reviews. 

The Practice Guide for MND is the first disease specific Practice Guide to be adopted by the NDIA and has come about as a result of sustained MND Association advocacy at the local, state and federal level. This guide is an internal NDIS document and therefore only available to NDIS staff and planners. 

MND Associations are able to support people living with MND and their families to prepare for, and to enact, their plan. Contact 1800 777 175 to speak with the MND Association in your State or Territory.

Neurological alliance australia (NAA) ADVOCATes FOR AUSTRALIANS LIVING WITH NEurodegenerative disease in the national disability insurance scheme (Ndis)

On Wednesday 22 March, a joint position paper was launched by the Neurological Alliance Australia (NAA) at Parliament House, Canberra to call for equitable and effective support within the National Disability Insurance Scheme (NDIS) for people with progressive neurodegenerative diseases and increased investment in research.

Senator Deborah O’Neill hosted the morning tea that was well attended by representatives from all partners of NAA: Alzheimer’s Australia, Brain Injury Australia, Huntington’s Australia, Parkinson’s Australia, Muscular Dystrophy Australia, MND Australia, Muscular Dystrophy Foundation Australia, MS Australia and Spinal Muscular Atrophy Australia.

More than 850,000 people are living with progressive neurodegenerative diseases in Australia and an estimated further 4 million carers and family members are affected. With the combined annual cost of neurological and neuromuscular diseases to the Australian economy at almost $30 billion, there is great need for NAA to advocate for effective support and care and increased investment in research.

During the launch, Chairman of the MND Research Institute of Australia Research Committee, Professor Matthew Kiernan presented on the urgent need for increased investment in research. He commented that with adequate funding it could be possible to cure neurological disease in this generation of parliamentarians.

Following the personal accounts from three people who are living with a progressive neurological disease, NAA Chair, Deidre Mackechnie presented the joint paper to Senator O’Neill and outlined the NAA recommendations to ensure the best outcomes for people with progressive neurodegenerative diseases within the NDIS. Read the joint position paper and NAA recommendations and watch the launch coverage on Channel 9, Canberra.

The next step in NAA's lobbying efforts will be to distribute the joint position paper to the Disability Minister Christian Porter, Assistant Disability Minister Jane Prentice and the secretariat of the NDIS Joint Standing Committee.

NAA joint position paper launch, Parliament House 22 March 2017

MND delegates: Sue Donaldson (MND NSW Advisor), Stan Fraser, Diane Fraser (living with MND), Professor Matthew Kiernan (Chairman MNDRIA Research Committee), Jenny Cahill (Coordinator, ACT Health MND Clinic), Carol Birks (CEO, MND Australia), Amy Critchley (Board Director, MND NSW) holding Zoe Critchley


advocating for all Australians living with MND

Six-months into the nationwide roll-out of the National Disability Insurance Scheme (NDIS), MND Australia and the State MND Associations are hard at work advocating for over 2000 Australians living with MND.
Carol Birks, Ken Wyatt AM MP and David Ali                   David-Ali,-Catherine-King-and-Carol-Birks.jpg

Photo left: Carol Birks (CEO, MND Australia), Hon Ken Wyatt AM MP (Assistant Minister for Health and Aged Care) and David Ali (President, MND Australia)
Photo right: David Ali (President, MND Australia), Hon Catherine King MP (Shadow Minister for Health and Medicare) and Carol Birks (CEO, MND Australia)

During November MND Australia’s CEO Carol Birks and President David Ali have met with Assistant Minister for Social Services and Disability, Hon Jane Prentice MP and Shadow Minister for Families and Social Services, Hon Jenny Macklin MP to discuss NDIS issues experienced by people living with MND. Carol and David also proposed ways in which the NDIS can better address the complex and rapidly progressing needs of people living with MND. The details of these ideas were further discussed by Carol and State MND Association representatives at a meeting with the National Disability Insurance Agency. In partnership with the Neurological Alliance of Australia, we are working on a paper detailing common NDIS issues to present to parliamentarians in early 2017. Disability services were also discussed with Senator Carol Brown, Shadow Minister for Disability and Carers.

Carol and David have focussed on advocating for a fair care system for people aged over 65 who are living with MND through productive meetings with the Assistant Minister for Heatlh and Aged Care, Hon Ken Wyatt AM MP; Shadow Minister for Health and Medicare, Hon Catherine King MP; and Shadow Minister for Ageing and Mental Health, Hon Julie Collins. A submission to the Ageing and Aged Care, Aged Care Legistated Review was made in early December. We look forward to meeting with the aged care department in Canberra in early 2017.
We are thankful to our parliamentarian friend, Hon Alex Hawke MP for scheduling time to meet and for his continued assistance to keep MND on the political radar. 

Read the MND Australia Action Framework


Call on politicians to support MND care and research

National Action Framework
Let's keep MND on the political radar. MND Australia has written a National Action Framework including five commitments to improve the lives of people living with MND.
Contact your local parliamentarians/candidates and send them the MND Australia National Action Framework ​along with your personal message about why they should support MND care and research.

Share the framework with your social network and encourage them to join our advocacy campaign. The more parliamentarians we talk with, the louder our voice when lobbying for the rights of people living with MND.


MNd Australia Action Framework

In the lead up to the Federal Election 2016, MND Australia seeks five commitments from our politicians to improve the lives of people living with MND and their families:

  1. Increased investment in research
  2. Development of National MND Guidelines
  3. Improvements to aged and disability care
  4. Timely access to a full range of assistive technology
  5. A specific commitment to fund specialist MND multidisciplinary clinic coordinators
Read the full MND Australia Action Framework.

mnd Australia budget 2016 analysis

There are no major new policies included in the 2016 Federal Budget that would significantly improve the lives of the more than 2,000 Australians living with MND and their carers.  However, policies related to the NDIS, aged care, health and research sectors will impact the MND community to varying degrees. Read full analysis

National Disability insurance scheme (NdIs) and my aged care update

Roll out of the full NDIS in all states and territories (except Western Australia) will start progressively from July 2016. The NDIS will provide assistance to people diagnosed with MND when under the age of 65.

People diagnosed with MND when over the age of 65 can apply to receive assistance from the Australian Government’s My Aged Care. Read more about the NDIS and My Aged Care



Feedback on the National Disability Advocacy Framework Discussion Paper

MND Australia works with the state MND associations to ensure that policy makers and other key decision makers understand the complex, progressive needs of people living with MND. On 31 July, MND Australia submitted feedback on the National Disability Advocacy Framework Discussion Paper to the Australian Government Department of Social Services.

Global Day 2015 morning tea at parliament house

To mark ALS/MND Global Day 2015, MND Australia held a morning tea at Parliament House in Canberra, hosted by Alex Hawke MP, to promote MND care and research and advocate for the rights of people living with MND.  

In the spirit of this year’s Global Day campaign – ALS/MND Without Borders – members of both sides of politics joined 50 people from the MND community including those living with MND, their loved ones, peak bodies and health and community care professionals.  

Read more about the parliamentary morning tea


MND Week 2015 – let's make the system fair for all people living with MND

On 1 July 2015 the Australian Government will release the latest Aged Care Reform to give older people more choice, more control and better access to a wider range of aged care services. The crucial issue is whether people with a disability over the pension age will have access to adequate supports to meet their individual needs.

There is inequity in Government support of people in Australia living with MND. For people diagnosed with MND when under the pension age, the NDIS will provide access to reasonable and necessary supports to meet their individual needs. However, people diagnosed with MND when over 65 must rely on aged care services and facilities, which are designed to address needs related to ageing not disability.  MND is not a disease related to ageing.  Typically, people living with MND have complex and individual care needs that rapidly escalate as the disease progresses.

During MND Week 2015, we ask that the Aged Care Reforms make for a fair care system for people living with rapidly progressing neurological diseases like MND.


Three new submissions to support the rights of people living with MND

MND Australia works with the state MND associations to ensure that policy makers and other key decision makers understand the complex, progressive needs of people living with MND. MND Australia has made three new submissions in early 2015 to support the rights of people living with MND.


ALS/MND Global Day advocacy activities 2014

During ALS/MND Global Day 2014, MND Australia and the state MND associations focussed on advocating for Australians living with MND. 

Senator Sue Boyce, Alex Hawke MP, John Alexander MP, The Hon Catherine King MP and Gai Brodtmann MP joined representatives from peak bodies, people living with MND and their carers, the MND Australia Board and the Executive Management Group from the state MND associations at a morning tea held at Parliament House, Canberra.

Assistant Minister for Social Services, Senator The Hon Mitch Fifield visited the MND centre at Gladesville for a productive meeting about the issues related to providing care and support for people with MND.  

Read more about Global Day advocacy activities.


Related links


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