Government support

Government support for people living with motor neurone disease (MND) varies depending on an individual’s personal circumstances. For expert advice on the National Disability Insurance Scheme (NDIS) and My Aged Care for people living with MND, contact your state MND association.

National roll out of the NDIS NDIS rool out

Roll out of the full National Disability Insurance Scheme (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.

The introduction and trial of the NDIS

The NDIS was launched in July 2013, following years of discussion about the need for a major reform of disability services in Australia.  It provides individualised support for eligible people with permanent and significant disability, their families and carers. 

In July 2013 trial NDIS sites were rolled out in various regions. A small number of people living with MND eligible for the NDIS in Victoria and NSW have provided an opportunity to review and analyse NDIS processes, the role of state MND Association Support Service staff and the impact on people with MND.  

MND Victoria and MND NSW have been working to ensure an effective planning process for people living with MND in the Barwon and Hunter regions. People living with MND who have NDIS plans in place are reporting that they are satisfied with the services they receive. The trial sites have reiterated the importance of the involvement of the MND Advisors in the NDIS process to ensure that plans are developed that take into account the individual, complex and progressive nature of MND. 

Experts in MND care and support

With over 30 years of experience, state MND associations are the experts in providing support and services especially for people living with MND and the broader MND community. State MND association staff understand that MND progression and symptoms vary from person to person and that individualised support is key to maximising quality of life. Contact your state MND association on 1800 777 175 to find out more about:  
  • MND-specific information, education and advice 
  • Care and guidance coordinated by trained MND Advisors
  • Local support and care services especially for people living with MND
  • NDIS plans and how state MND associations can provide coordination of supports and the option to include a ‘bundle’ of aids and equipment at a fixed annual rental fee (currently available in NSW and Victoria)
  • Education for new health and community providers.

Ongoing lobbying

State MND associations continue to work to ensure that the NDIS provides a rapid response to service provision from a range of providers with an understanding of MND, timely access to aids and equipment, coordination and regular review.  Read Feedback on the National Disability Advocacy Framework Discussion Paper prepared by MND Australia. 

State update

  • NSW, ACT and NT: Read updates from MND NSW
  • South Australia: To date, the trial NDIS sites in South Australia have focussed on providing support to children with disabilities. The roll out will continue to increase in age from the beginning of 2017 and the NDIS will be open for over 18 year olds around July 2017. Find out more   
  • Queensland: There are trial sites in Townsville for under 18s and Palm Island for under 45s. Detals of the full roll out across Queensland are to come. Find out more
Find out more about the roll-out of NDIS services in your state for people living with MND by calling 1800 777 175 or visiting your state MND association.

 

My Aged Care

People diagnosed with MND when over the age of 65 can apply to receive assistance from the Australian Government’s My Aged Care. Contact your state MND association or freecall 1800 777 175 to find out more about accessing Government support. 

Ongoing lobbying

The Australian Government has introduced reforms to aged care 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.

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. 

Join us in advocating for a fair care system for people living with rapidly progressing diseases like MND
 

Related links

 

Proud member of:

International Alliance of ALS/MND Associations

ACNC Registered Charity

 

MND Australia would like to advise Aboriginal and Torres Strait Islander users that this website may contain images or names of deceased persons.