Paper to address dementia under the NDIS

According to a new joint position paper by the Neurological Alliance Australia (NAA), the needs of people with progressive neurological disorders, such as dementia, are not being properly addressed by the National Disability Insurance Scheme (NDIS).

The NAA remains an advocate for the NDIS and acknowledges that many NDIS plans have had positive, life changing impacts. 

However, it also recognises that many people, particularly those with progressive conditions, have experienced challenges accessing the NDIS, including insufficient plans that will adversely affect their quality-of-life and place some at risk of avoidable hospitalisation. 

The Joint Position Paper, People with progressive neurodegenerative diseases in the NDIS, outlines four key recommendations to ensure the best outcomes for the 850,000 Australians living with progressive neurodegenerative diseases that have no known cause or cure, under the NDIS. 

Dealing with progressive neurological or neuromuscular conditions comes at an annual cost of almost $30 billion to the Australian economy. 

The NAA recommendations will not only improve NDIS plan outcomes for people with progressive neurological conditions but will also result in improved outcomes, including increased labour force participation of primary carers of people with disability and social participation of people with disability.

Dementia Australia is an NAA member, focused of advocating for people with younger onset dementia, who are trying to navigate the NDIS. 

Dementia Australia’s National Younger Onset Dementia Key Worker Program Manager Nigel McPaul was a key contributor, in consultation with our national policy team, to the position paper and its launch. 

NAA Chair and CEO of MS Australia, Deidre Mackechnie said if people with progressive neurological diseases were to receive equitable and effective support within the NDIS it was imperative that the NDIA and government addressed these unmet needs. 

“The impact of progressive neurological conditions on individuals and families can be significant both financially and emotionally and can have a huge impact on their ability to remain engaged in their community to maintain a life of meaning and purpose,” Ms Mackechnie said.

“The recommendations outlined in the Position Paper will go a significant way to aligning the original intent of the NDIS with its practical application.” 

To ensure the best outcomes for people with progressive neurodegenerative diseases under the NDIS, the NAA recommends:

  1. Improved pre-planning support for people with a progressive neurodegenerative disease
  2. NDIS planning sessions that recognise the unique needs of people with a progressive neurodegenerative disease
  3. Mandatory inclusion of a Coordinator of Support in all NDIS plans for people living with a progressive neurodegenerative disease
  4. The needs of people with a progressive neurodegenerative disease be addressed in the Productivity Commission’s upcoming Review of NDIS Costs 

The NAA is an alliance of ten national peak not-for-profit health organisations, established in 2010, to promote improved quality-of-life, coordinated services and greater research investment for adults and children living with progressive neurological and neuromuscular diseases in Australia. 

The NAA member organisations include: Dementia Australia, MS Australia, MND Australia, Parkinson’s Australia, Brain Injury Australia, Huntington’s Australia, Spinal Muscular Atrophy, Muscular Dystrophy Australia, MJD Foundation and Muscular Dystrophy Foundation.

View the full position paper here.


Graeme Shears – CEO, Epilepsy Australia;
Phil Martin – CEO, Muscular Dystrophy Foundation Australia;
Robyn Kapp – Executive Officer, Huntington’s NSW;
Carol Birks – CEO, MND Australia;
Julie Cini – CEO, Spinal Muscular Atrophy Australia;
Deidre Mackechnie, CEO MS Australia and Chair of the NAA;
Steve Sant – CEO Parkinson’s Australia;
Laurie Stroud – MD Ambassador, Muscular Dystrophy Australia;
Ara Caswell – CEO, Carers Australia; and
Nigel McPaul – Policy and Program Manager, Dementia Australia.