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Representation, understanding and equity: a call for a better NDIS for Australians with multiple sclerosis

Introduction by Croakey: A review of Australia’s National Disability Insurance Scheme (NDIS) scheduled for the second half of this year “will provide the formal mechanism to recommend much needed improvements” to the Scheme, according to Associate Professor Des Graham.

President of MS Australia and living with multiple sclerosis, Graham describes below his “exasperation” in navigating the Scheme to “secure the assistance” he requires.

In addition, he outlines three recommendations for change to ensure the Scheme is fair and accessible to all Australians with multiple sclerosis.


Des Graham writes:

There is not much, if anything, that has beaten me in this lifetime.

Certainly not my multiple sclerosis.

I wish I could say the same for the National Disability Insurance Scheme (NDIS).

I take pride in my resilience, my independence, my intelligence and my above average health literacy. And as I’ve remarked repeatedly since my diagnosis in 2009, ‘I drag the MS around with me. I don’t let it take control of me’.

In truth, I should be expertly positioned to navigate the NDIS, to advocate and negotiate on my behalf to secure the support I require.

I have spent my entire professional career in healthcare – as a nurse, a healthcare consumer, as a strong and passionate healthcare advocate, a senior health care administrator and policy maker, and in more recent years in a voluntary capacity in senior leadership roles with MS Plus, MS Research Australia and the Multiple Sclerosis International Federation.

And now as the current chair of MS Australia, and as a person living with MS, I am extremely proud and humbled to be a contributor to a better future for Australians living with MS, their families, loved ones, carers and friends.

Proud, but also exasperated.

Exasperated because it is clear to me that if I can’t successfully navigate the NDIS and secure the assistance I require, despite my knowledge, my connections, my understanding of government bureaucracy and health systems, then the NDIS is fundamentally broken.

But while the NDIS may have beaten me, please be assured I am far from defeated.

In fact, there are many reasons for us all to be hopeful.

Not the least of which is that the architect of the NDIS, Minister for the National Disability Insurance Scheme Bill Shorten is now back at the helm and promising to rebuild trust, ensure fairness and restore the scheme to its original intent.

Another reason for optimism – a review of the NDIS, originally scheduled for 2023 – and recently brought forward to the latter half of this year, will provide the formal mechanism to recommend much needed improvements.

Importantly, in many ways we already know what is broken, and have already identified solutions.

“Ketamine infusions for pain relief” – Des Graham

A call for changes

MS Australia is actively campaigning for ‘A better NDIS for people living with MS‘.

We are calling for three major changes to the NDIS.

Changes that would benefit not only the 25,600 Australians living with MS, not just the 1.2 million Australians living with a neurological condition, but in fact all Australians living with a disability that might find themselves in need of support from the NDIS in their lifetime.

And while these changes are simple and straightforward, their impact should not be underestimated.

Hear our voice: Firstly, we’re calling for effective representation with the NDIS. We’re calling for the 1.6 million Australians living with degenerative neurological or neuromuscular conditions to be heard, understood and effectively represented with the advisory and consultative structures of the National Disability Insurance Agency (NDIA) and NDIS.

Understand MS: Secondly, we’re calling for better understanding, awareness and education about MS, for frontline NDIA staff. It’s simple really. How can the NDIA assess what it doesn’t fully understand? And how much harder must that challenge be in the absence of comprehensive training when symptoms are invisible, or the severity of the impact so variable; when some days are good and others extremely bad.

Don’t discriminate: And lastly, we’re calling for an end to age discrimination. Chronic disease doesn’t care about your age and nor should the NDIS. Very simply, all Australians with MS should be entitled to register with the NDIS regardless of the progression and severity of their condition, to ensure that NDIS support is available to them after age 65, if and when they need it.

Even more pressing, we must support those Australians already aged 65 and over who have been left out in the cold. For those Australians, we urgently need immediate changes to the NDIS so they too can be eligible for the support they require.

At their heart, these are universal changes to the NDIS that go to improving education, that would ensure effective representation and that would end age discrimination, and that together, will ultimately deliver better support to all Australians who need it.

As a client of the NDIS, I am all too aware of the enormous burden placed on my family and thousands of other families and carers, that occurs every time the NDIS makes ill-informed and inconsistent decisions.

Rest assured, as the Chair of MS Australia and as an individual living every day with a chronic, debilitating and progressive disease, I stand ready to work with the NDIA and the Minister for the NDIS, to advocate for a better NDIS for people living with MS, and to bring to fruition improved quality of life for thousands of Australians.

Associate Professor Des Graham is the President of MS Australia and a person living with MS. Having spent his entire career in healthcare, and as a client of the National Disability Insurance Scheme, he is well qualified to both critique, and put forth solutions and changes to the Scheme that would improve the quality of life for thousands of Australians.

“Advocacy is at the heart of everything I do” – Des Graham with Parliamentary Friends of Multiple Sclerosis co-chairs Senator Deborah O’Neill and Senator Wendy Askew

Read Croakey’s extensive archive of articles on the NDIS.