NDIS clearly broken according to MS sufferers

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People living with multiple sclerosis join growing chorus for reforms to 'clearly broken' NDIS

Kelly Engelhardt is one of about 25,000 Australians living with MS — a chronic neurological disease with no cure.

When Kelly Engelhardt was first diagnosed with multiple sclerosis (MS) just before her 21st birthday she feared she wouldn't be able to finish her teaching degree, get married and have children, but 20 years later she has achieved those things and more.

However, in the past two years the 41-year-old's MS symptoms have worsened.

"I've had to give up work, I need to use a walking stick even around the house now and if I go out, I need to use a wheelchair," she said.

"The fatigue is phenomenal and just day-to-day life is a lot harder.

"I don't feel like I'm the mum and wife that I want to be. that I'm not good enough for them at times, I need some help and it's hard.

"The children are 14 and nine and it's not their job to help mum.

"My husband works full time and of course he will help out where he can, but also his job is how we get our money, how we survive."

MS is an inflammatory neurological condition where the immune system attacks the body resulting in damage to the protective sheath surrounding nerve fibres.

When the nerves are damaged, the brain cannot communicate with other parts of the body, leading to a range of symptoms which are variable and unpredictable.

Peak body MS Australia said around 25,000 Australians live with the condition, which is the most common acquired chronic neurological disease affecting young adults that has no cure.

'We're not all the same'
Mrs Engelhardt has had mixed dealings with the National Disability Insurance Scheme (NDIS).

"When I first applied it was a negative experience because I had to prove I would never be cured of MS," she said.

"That was a big disheartening comment … because that's the dream of everybody with MS, for it to be cured."

The Sydney resident said her first NDIS package was "amazing" and she could not use all of the allocation.

But she said it had since been cut and she can now only see an exercise physiologist once a week.

Mrs Engelhardt said she was getting weaker and needs funding for two sessions a week.

"I feel like they're not willing to invest because they know there's no chance of me getting better," she said.

She wants a greater understanding of MS within the National Disability Insurance Agency (NDIA), which is the independent organisation that implements the NDIS.

"We are not all the same. There are different types of MS and even within those types, people will do differently," she said.

"We're not asking for things just for the sake of them, we're asking for them to live life a bit better because life can be hard."

A 'completely broken' NDIS system

The plea for better understanding is echoed by Des Graham, the chair of MS Australia who was diagnosed with the condition 14 years ago.

"The National Disability Insurance Scheme is great architecture, but it is fractured and people are having lower qualities of life because of two things: firstly they're not getting access to it and then, secondly, those who are getting access aren't getting the right packages," he said.

"It gave a lot of people a lot of hope, unfortunately it is clearly broken."

Mr Graham has an extensive background in health as a nurse, researcher and senior bureaucrat, but in his personal experience he has found the NDIA "completely frustrating and quite honestly unbelievable".

Documentation from the NDIA shows it declined his application for 69 hours of physiotherapy over two years because it was "not considered value for money and may in part be considered treatment of a medical condition, so more appropriately funded by health".

He got 55 hours over two years – half the amount he said he really needs.

Read more:- NDIS funding disputes are on the rise. Some people who rely on the National Disability Insurance Scheme claim it has an adversarial approach that is pushing them to despair, with lengthy battles over funding becoming increasingly common.

Mr Graham wants the NDIA to recognise it is not a disease management expert.

"It is quite unbelievable the amount of assessments you get from your specialist neurologist, your specialist pain physician, from your urologist that goes into your application, only for someone who's unqualified, with all due respect, to make a decision that in fact you're not entitled to that package because you don't meet the criteria."

Neither Mrs Engelhardt nor Mr Graham have formally appealed against the NDIA's decisions.

"People do get tired of telling their very personal stories and having to defend themselves … the experts have given them the information, it's all in front of them," Mr Graham said.

There are more than 4,000 legal appeals relating to NDIS funding before the Administrative Appeals Tribunal. 

Push for a Neurological Advisory Council

Mr Graham has called for the establishment of a dedicated Neurological Advisory Council to the NDIA, similar to the Autism Advisory Group (AAG).

"There's 1.2 million people in Australia with degenerative neurological or neuromuscular disease – so all of those at some point in time in their life will come in and out of the NDIS," he said.

"So we think it's incredibly useful to have a council, an advisory council of some form, to talk to the NDIA about the best disease management."

In response, an NDIA spokesperson said the Autism Advisory Group "discusses autism-specific challenges that impact 38 per cent of NDIA participants across their life spans, as well as the broader neurological context".


The spokesperson said there are several feedback mechanisms already in place to represent Australians living with neurological conditions, including the Disability Representative and Carers Organisation and the Independent Advisory Council.

Mr Graham said he feels "hopeful" of reform under the new NDIS Minister Bill Shorten.

In a statement, Mr Shorten said he has brought forward the 2023 NDIS review and broadened it "to find ways to ensure we improve the participant journey, including access and planning processes".

"We will work with participants to improve the planning process and support participants to find the most effective supports to achieve their agreed goal," he said.

According to the latest quarterly report, more than 530,000 Australians receive support through the NDIS with payments costing more than $27 billion in the past financial year.

The vast majority of the estimated 4.4 million Australians living with disability are not on the NDIS. 

The timing of the scheme's review has not yet been announced.

www.abc.net.au/news/2022-08-31/qld-health-multiple-scelosis-patients-let-down-by-broken-ndis/101386048

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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.

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.

www.croakey.org/representation-understanding-and-equity-a-call-for-a-better-ndis-for-australians-with-multiple-sclerosis/