Catherine Rosa lives alone in a cottage in the small Tasmanian town of Cygnet, a short drive from Hobart which is renowned for its rural charm.
The 56-year-old grandmother, who is legally blind and can barely see, cherishes her independence in this tight-knit community, where people greet her when she's walking with her guide dog and often provide assistance if she needs it.
Volunteers are helping her to try and overturn a funding decision under the National Disability Insurance Scheme (NDIS), which Ms Rosa says has left her feeling unsafe at home and is causing severe distress.
"The NDIS has just been absolutely bloody terrible," Ms Rosa told 7.30.
"It's just been completely demoralising and demeaning and it's just brought me to my knees."
Retired nurse Cate Warren volunteers at the Cygnet Community Hub and has spent her spare time over several years supporting Ms Rosa in her struggle to get what she considers adequate NDIS support.
"I think [Ms Rosa's situation is] really sad, when that was the very thing that was supposed to give people their independence and it has failed her over and over again," Ms Warren said.
Ms Rosa has a degenerative eye disease called retinitis pigmentosa, which is shrinking her remaining sight.
She has no depth perception and can only see small bits of what's in front of her.
"It's like I'm constantly scanning with that tiny bit of sight. I've got to create a picture of what's around me," Ms Rosa said.
Her condition has led to regular falls at home.
"I'll bang into my own doorways and my walls," she said.
"I've had heaps of accidents in my bathroom and fallen out of the shower.
"Often people in the community will comment on the different bruises all over my forehead and my cheek, my arms.
"It just happens all the time."
Ms Rosa currently receives NDIS funding for a range of support including her guide dog, physical therapy, and support coordination.
However, her latest plan does not cover key areas like home modifications to her bathroom, kitchen, front steps, and the installation of an intercom at the front door.
That's despite her undergoing repeated assessments by occupational therapists since September 2020 who have recommended her bathroom undergo significant renovations to keep her safe.
Ms Rosa can become disoriented in her current shower, resulting in her being confused about the direction she is facing, "exacerbating vertigo-like symptoms, which poses a serious fall risk", according to one report.
The recommendations include removing the small existing shower cubicle and replacing it with a wider wet area that would include grab rails.
These home modifications have been supported by an optometrist who found Ms Rosa has "a great risk of a fall due to her not seeing her feet", and that her home should be uncluttered and designed for safety.
However, the home modifications have been rejected by the National Disability Insurance Agency (NDIA), which said they do not represent value for money and may not substantially reduce the risk of injury.
Instead, documentation shows the NDIA suggested cheaper alternatives, including the use of tactile markers, a shower chair, long cane, and grab rails.
Ms Rosa has also requested voice-activated assistive technology, which has only been partially funded.
In a statement, the NDIA told 7.30 that in order to fund supports such as home modifications, it is "a legislative requirement that the NDIA be satisfied that the support being considered represents value for money."
"The costs of the support must be reasonable relative to both the benefits achieved and the cost of any alternative support," the statement said.
Cate Warren, the volunteer assisting Ms Rosa, is sceptical those suggestions from the NDIA will work.
An internal review upheld the decision to reject the home modifications as not being value for money.
They are preparing to launch a legal appeal to the Administrative Appeals Tribunal (AAT), but Ms Warren is worried about the toll the ongoing dispute is having on Ms Rosa.
"She was very fragile when this last plan came through … that was really quite devastating," Ms Warren said.
'I think it's a disaster'
When 7.30 raised Ms Rosa's situation with NDIS Minister Bill Shorten, he said he was deeply concerned.
"I think it's a disaster — it's a disaster for Catherine and the people who love her," he said.
"I think it undermines public confidence.
"I haven't seen all of the logic of the agency but on its surface, it would take me about six seconds to think that Catherine's in the right.
"If someone needs to adapt their home, to make it safe, so they can live in-home rather than living in an institution or facility, then this is why we created the NDIS — for people in the circumstances that Catherine is in."
7.30 requested an interview with a representative of the NDIA but no one was available.
The agency did not answer specific questions about Ms Rosa's case.
The NDIA said in a statement it was committed to "the safety and wellbeing of every participant, and we continue to work to ensure every eligible participant has the disability-related supports they need".
Disputes undermining 'overwhelmingly positive' scheme
More than half a million Australians rely on the NDIS — costing almost $30 billion a year — and that's expected to rise sharply.
During the federal election, Labor accused the NDIA and the Morrison government of making funding cuts to plans that couldn't be justified, something the Coalition disputed.
The average plan budget for people on the scheme has fallen over the last two years from $70,010 to $68,800, but the agency argues this is because there are more children entering the scheme who require lower amounts.
Now in government, Mr Shorten argues the NDIS is an overwhelmingly positive social investment but is being undermined by having too many disputes.
"In plenty of cases it's making massive changes for the better," he said.
"But frankly I've been appalled ... upon coming to government at some of the needless hardship, the bureaucratic stupidity, just the plain unfairness where people with very clear cases are being forced to go through weeks, months, years of stressful litigation and argument, just to get modest, decent support."
Jump in disputes
There are a growing number of people who are concerned about their funding plans, and more than 4,400 NDIS legal appeals before the AAT.
The AAT's annual report for 2020-21 stated there had been a substantial jump in applications related to funding disputes for supports, with applications increasing by 76 per cent.
Rachael Thompson, an advocate who handles NDIS appeals at the Rights Information and Advocacy Centre in Victoria, said her service is experiencing unprecedented demand and simply can't cope.
"We cover the area of regional Victoria and we've had to completely close our waitlist since February," she said.
"In the last financial year, we've opened up 130 NDIS appeals matters.
"We don't have enough staff working on NDIS appeals to support that, so we have no choice but to close our waitlist."
In her cases, Ms Thompson claims the disputes generally relate to the NDIA cutting funding without always providing clear reasons.
"What we're finding is that the NDIA has been arbitrarily cutting people's plans without a valid reason," she said.
"They're very generic reasons and people are left with no option but to appeal to the tribunal."
The agency is also spending heavily on corporate lawyers, with more than $40 million paid over a 10-month period until the end of April, which is more than double the previous year.
"The sad part is that most of these matters that we're seeing could be settled earlier on," Ms Thompson said.
"Instead, people are being dragged through this adversarial combative process, which is very legalistic and it really shouldn't be like that."
Funding plan slashed
Lauren Smith and her teenage son Gabe live in Torquay, Victoria, and have lodged an appeal with the AAT to try and resolve a funding dispute.
Gabe has autism and a number of other conditions requiring a high level of support.
"He needs help with gaining independence and learning how to cook and prepare food, looking after his personal hygiene, and accessing the community and making friends and learning how to communicate and socialise with people outside of the home," Ms Smith said.
Ms Smith couldn't believe it when she received Gabe's latest funding plan last year, which slashed funding for occupational therapy, physiotherapy, and transport.
The plan came after having to challenge funding plans in previous years.
"It's taken a huge toll on me and it takes up so many hours and hours and hours of meetings and assessments and reports," she said.
"And then you receive a letter to say that your application has been rejected because it's not value for money and it just it breaks your heart."
Ms Thompson is representing Ms Smith and her son and believes the funding cuts have had a detrimental impact.
"The amount of money that's been spent on getting all this additional evidence completely outweighs what the benefits could have been if Gabe had received the funding," Ms Thompson said.
Ms Smith said her dispute had continued for months, which included having multiple AAT hearings.
However, shortly after 7.30 contacted Mr Shorten and the NDIA about her son's case, Ms Smith said she was offered a settlement, with the therapy that was previously denied now included.
Mr Shorten said he thought the lengthy process to resolve the funding dispute was unnecessary.
"I just want to say to Lauren, and her precious son Gabriel, that you shouldn't have had to go through this, in my opinion," he said.
The NDIA did not answer specific questions about the Smith family's case, stating it was not appropriate to comment because the case was before the AAT.
NDIS review coming
Mr Shorten is ordering urgent reviews of the thousands of cases still in dispute, and proposing changes to try and prevent them in the future.
"One, I want to blitz the legacy cases sitting at the AAT," he told 7.30.
"Secondly, a better conciliation process without lawyers, but most of all, if we can make more transparent initial decisions, set the plans up right, then I think we can starve this litigation bin fire of the oxygen, of anxiety, insecurity, and opaqueness."
The proposed shake-up comes after a turnover in the NDIA's senior leadership which saw both the chief executive Martin Hoffman and chair Denis Napthine stand down.
Mr Shorten said the details of a wide-ranging review of the scheme would be announced soon.
"We want to make sure that there's co-design with people with disability before we finalise our terms of reference," he said.
"But I am very optimistic that within a matter of weeks, if not a month, we should be able to announce the review, who's doing it, how we're going to do it, [and] when it's going to get done.
"But I just want to reassure NDIS participants and service providers that this review won't take forever."
In Tasmania, Catherine Rosa is still fighting for the supports she believes she desperately needs.
"It's important that my home is the one place in this world where I can feel really comfortable and safe and I don't have accidents," she said.
Ms Rosa has pleaded with the Albanese Government to make life easier for NDIS participants.
"You have to change this system, something has to be done," she said.
"I invite Mr Albanese and Bill Shorten to come here for the day.
"Let me put a blindfold on them and let them have my day living as I do in this house with nothing, and going out in the street.
"I'd love for you to experience that."
Watch this story on 7.30 tonight on ABC TV and ABC iview.
