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. [I feel] 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.
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.
