Could NDIS reform mistakes leave you or your loved ones at risk? Find out how

The National Disability Insurance Scheme (NDIS) has been a beacon of hope for many Australians living with disabilities, offering them the support and resources needed to lead more independent and fulfilling lives.

However, as we entered the latter part of 2024, the NDIS began to roll out a series of reforms that have left many participants feeling uncertain and anxious about their future within the program.


The NDIS, a $35 billion initiative, has undergone significant changes since October 2024, with new legislation introducing updated lists of fundable items, revised early intervention requirements, and more.

These changes have already impacted how support is provided to some 646,000 individuals who rely on the scheme.

Yet, the reforms are far from complete. March has been marked as a critical period for further consultation on key elements such as the support-needs assessment tool, which will determine the level of public funding allocated to each person based on their impairments.


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Anxiety has been created in the disability sector by NDIS reforms due to the risk of losing essential support and tight consultation timelines. Credit: Depositphotos


The tight timelines and limited scope for consultation have raised concerns among advocates, who argued that the promised co-design of crucial aspects of the new system is virtually unattainable.

The foundational supports, which are to be provided by the states and territories as agreed upon by the national cabinet over a year ago, should be operational by 1 July.

However, there is still a lack of consensus on what these supports entail and the infrastructure required to deliver them.


Adding to the sector's unease is introducing a new NDIS minister and the prospect of a looming federal election.

But perhaps the most distressing issue for people with disabilities is the fear of receiving a letter from the National Disability Insurance Agency (NDIA) indicating that they may no longer be eligible for the scheme—a scheme they were assured would support them for life.

This fear was underscored by a recent decision from the administrative review tribunal, which questioned the legal basis for the NDIA's practice of reversing the burden of proof of eligibility onto participants.

Veronica Stephan-Miller, the woman at the centre of this case, described her interactions with the NDIA as so stressful that they affected her health, including her eating habits.

'I have a PO box,' she said.

'And at that time, I wasn’t getting my mail regularly, so it was 10 days before I actually picked the letter up. I went into panic mode.'


Many participants have faced similar challenges when their eligibility came under review, often with little clarity on what additional information the NDIA required.

The process is not only alarming but can also seem absurd, as evidenced by one case where a participant's eligibility was questioned not due to their permanent disability but because the agency lacked a copy of their ID.

The reversed onus of proof, reminiscent of the controversial robodebt scheme, has been distressing for participants and frustrating for allied health workers who provide the necessary documentation for eligibility and funding assessments.

Muriel Cummins, from the Occupational Therapy Society for Invisible and Hidden Disability, expressed concern over the rapid pace of reforms and the lack of communication with health professionals despite their critical role in the system.

'We’re seeing people who have conditions like [multiple sclerosis] and Parkinson’s, which are lifelong, permanent and often degenerative conditions, receiving notices for eligibility reassessments,' she said.

'It’s a real shock for the participants, and it’s also a real challenge for us as therapists to understand what the NDIA is actually asking for.'


The NDIA's focus on reassessing eligibility, particularly for conditions that are lifelong and degenerative, has led to a significant number of participants being removed from the scheme.

At a Senate estimates hearing, it was revealed that 1,200 participants, mostly children, were being reassessed weekly, with nearly half losing their NDIS access.

The situation is equally problematic for service providers. Rodney Jilek of Community Home Australia shared the financial strain and emotional toll of providing care without adequate funding due to delays in plan reviews.

The NDIA's emphasis on preventing provider fraud has also resulted in payment bottlenecks, forcing Jilek to use his funds to keep his business afloat.

In response to these issues, the new NDIS minister, Amanda Rishworth, has stated her intention to meet with disability community representatives to address concerns related to the scheme.


Meanwhile, an NDIA spokesperson acknowledged the need for improvement in participant communication and reassessment timeframes, indicating that changes are on the horizon.

Jeff Smith, CEO of Disability Advocacy Network Australia (Dana), argued that the sudden removal of NDIS access without proper foundational support harms individuals.

'The approach here might be OK under the letter of the law, but it certainly breaks the spirit of the legislation,' he said.

'It’s certainly inconsistent with the idea that the changes that we make will take place in lockstep with the implementation of foundational supports so that people are looked after under some system or another.'
Key Takeaways
  • The NDIS reforms have created anxiety in disability sector due to the possibility of losing access to essential support and the tight timeline for consultation on the support-needs assessment tool.
  • An Administrative Review Tribunal decision called into question the legality of the NDIA’s practice of reversing the onus of proof of eligibility onto participants, which has been compared to the controversial robodebt scheme.
  • Advocates and allied health professionals express concerns over the rapid pace of the reforms and their exclusion from the decision-making process, potentially impacting the quality of care for people with permanent and degenerative conditions.
  • There are also issues on the provider end, with delays in plan reviews leaving participants without funds and some providers having to make difficult decisions to withdraw care or financially support their services due to outstanding payments from the NDIA.
How will the NDIS reforms affect people with long-term conditions? How can the NDIA improve communication and reassessment processes? Let us know in the comments below.
 

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The NDIS is wonderful, but a lot of people are ripping it off. Beauty therapy for example, does a facial on a client, and somehow, the NDIS pays for it. Seriously? It’s very open to abuse, and loopholes everywhere. People who legitimately qualify for the scheme, have problems accessing the benefits. My beautiful daughter has M.S. She can barely walk and is 33 years old. She has a disability parking permit and she desperately needs it. She recently went to Bunnings, and parked legally in a disability parking space. Then she gets abused by staff there, telling her that the parking space was for handicapped people. It was so offensive, she cried. She is trying to raise 2 children, and has a wonderful husband. But that type of stuff, is truly disturbing. She struggles to accept that she will be in a wheelchair one day, and that is how she is treated by Bunnings! Certainly leaves a bad taste in my mouth. I wonder if other people have to tolerate ignorance like that. Gezabel.
 
It's about time the NDIS had more checks & balances on it. Way too many people have accessed this programme with little if any follow up over the years to see that they still need this assistance from the rest of us. There appears to be little need for participants to prove that they need some things while seniors who are part of the aged care system have to prove they need even the simplest improvement to their home or other aid to make it safe for them & the wait to get this approval is many months with a cost of hundreds of $$$$ taken from their package.
 
I know some people are ripping off the system while others who desperately need the help are not getting it. It seems as if once you get it, there are no checks and balances. I think the concept was good but it hasn't been thought out properly or had the correct checks put on some people.
 
The NDIS is wonderful, but a lot of people are ripping it off. Beauty therapy for example, does a facial on a client, and somehow, the NDIS pays for it. Seriously? It’s very open to abuse, and loopholes everywhere. People who legitimately qualify for the scheme, have problems accessing the benefits. My beautiful daughter has M.S. She can barely walk and is 33 years old. She has a disability parking permit and she desperately needs it. She recently went to Bunnings, and parked legally in a disability parking space. Then she gets abused by staff there, telling her that the parking space was for handicapped people. It was so offensive, she cried. She is trying to raise 2 children, and has a wonderful husband. But that type of stuff, is truly disturbing. She struggles to accept that she will be in a wheelchair one day, and that is how she is treated by Bunnings! Certainly leaves a bad taste in my mouth. I wonder if other people have to tolerate ignorance like that. Gezabel.
We live in Boroondara council area and I'd like to give them a pat on the back. Their rules are no parking fees for disabled parking permits, even if there are no special areas available. Of course the rules still apply for non parking areas. Did she report that offensive action to Bunnings?
 
I know some people are ripping off the system while others who desperately need the help are not getting it. It seems as if once you get it, there are no checks and balances. I think the concept was good but it hasn't been thought out properly or had the correct checks put on some people.
Its relatively new and there are lots of procedures still to be fine tuned in my opinion. What you have said is no doubt a pretty big problem. Providers must be having quite a few procedure and organisational difficulties considering the need to update regularly when problems come to light. Certainly hope things get better and people needing the support don't suffer as many have already.
 
The NDIS is wonderful, but a lot of people are ripping it off. Beauty therapy for example, does a facial on a client, and somehow, the NDIS pays for it. Seriously? It’s very open to abuse, and loopholes everywhere. People who legitimately qualify for the scheme, have problems accessing the benefits. My beautiful daughter has M.S. She can barely walk and is 33 years old. She has a disability parking permit and she desperately needs it. She recently went to Bunnings, and parked legally in a disability parking space. Then she gets abused by staff there, telling her that the parking space was for handicapped people. It was so offensive, she cried. She is trying to raise 2 children, and has a wonderful husband. But that type of stuff, is truly disturbing. She struggles to accept that she will be in a wheelchair one day, and that is how she is treated by Bunnings! Certainly leaves a bad taste in my mouth. I wonder if other people have to tolerate ignorance like that. Gezabel.
I same the problem with the parking? I'll in all likelihood finish up in a wheelchair however I'm trying to put off the inevitable for as long as I can with just my walking stick. So whenever I get a nasty bastard making snide comments about disabilities I tell them one of mine is Tourettes Syndrome? and to "Fuck Off"
 
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Start checking out the providers who are ripping people off by charging rediculous prices. The goverment should take over the care providers as they are doing very shonking things. I know of 1 residential care facility that charges for the rooms, takes the ndis and then insists that you use their support workers. That way when they take residents out they double and tripple dip, charge each resident as if they are the only people being taken, so they charge everyone for the hire of the car, everyone for a support person (even though not everyone has one). If you notice these people are driving around in very expensive cars and are having their houses renovated.
 
I am aware of a seriously impaired young man, both medically and intellectually. His funding for his outings to a disability support group has been cut as it doesn't fit the guidelines.
I am also aware of at least two others who receive support including self care, these two are also employed as carers for others on the NDIS.
How can that be, people who can't successfully care for themselves but can care for others. RUBBISH.
 
I am an NDIS recipient and require a wheelchair for mobility and also require personal care and household care support. I am married and my husband is in his 70s and is not is brilliant health. My support is less than 20 hrs per week with a little flexibility for medical appointments, which are frequent and often city based. From my perspective it’s the service providers that should be assessed on their service standards and their costings. I have had reason to question practices and protocols of one organisation on more than one occasion and am now in the process of attempting to change providers to a company that has a client first focus. The majority are a business with a bottom line
 
I hope my funding isn't cut. My xhildren are my full time carers but I also have a carer that comes in twice a week to maintain my home and help my children. I also have a nurse and a cleaner as I am completely bed bound and need assistance with daily living. I'm really frightened about what it will mean for me. I can't speak and I have a support worker who comes in once a week to help me communicate and provide mental health support.
 
The NDIS is wonderful, but a lot of people are ripping it off. Beauty therapy for example, does a facial on a client, and somehow, the NDIS pays for it. Seriously? It’s very open to abuse, and loopholes everywhere. People who legitimately qualify for the scheme, have problems accessing the benefits. My beautiful daughter has M.S. She can barely walk and is 33 years old. She has a disability parking permit and she desperately needs it. She recently went to Bunnings, and parked legally in a disability parking space. Then she gets abused by staff there, telling her that the parking space was for handicapped people. It was so offensive, she cried. She is trying to raise 2 children, and has a wonderful husband. But that type of stuff, is truly disturbing. She struggles to accept that she will be in a wheelchair one day, and that is how she is treated by Bunnings! Certainly leaves a bad taste in my mouth. I wonder if other people have to tolerate ignorance like that. Gezabel.
Even though I have a disibility walker I also have a Sunflower Lanyard, you wear it around your neck while you're out and it shows people that you have a hidden disibility, it is against the law for anyone to abuse someone using them.
I also have the keyring to go with it.
 
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I same the problem with the parking? I'll in all likelihood finish up in a wheelchair however I'm trying to put off the inevitable for as long as I can with just my walking stick. So whenever I get a nasty bastard making snide comments about disabilities I tell them one of mine is Tourettes Syndrome? and to "Fuck Off"
Even though I have a disibility walker I also have a Sunflower Lanyard, you wear it around your neck while you're out and it shows people that you have a hidden disibility, it is against the law for anyone to abuse someone using them.
I also have the keyring to go with it.
 
Well hello, just been readingthe comments on NDIS, that would be the biggest ripoff this government has introduced, the people who need this agency is the onesmissing out.I see so much stupid use from so called carers, could write a book on it, well any way .
 
I hope my funding isn't cut. My xhildren are my full time carers but I also have a carer that comes in twice a week to maintain my home and help my children. I also have a nurse and a cleaner as I am completely bed bound and need assistance with daily living. I'm really frightened about what it will mean for me. I can't speak and I have a support worker who comes in once a week to help me communicate and provide mental health support.
I hope for your sake that your funding remains intact, as I’m hoping mine does. I firmly believe that we deserve a level of dignity and respect and we can’t expect our loved ones to carry all the burden. I was asked how much support I should expect from my daughter…..she’s married with four children and works full time. Where would she fit in “actual support?” She drops in for coffee and a chat when able and I can’t expect much more than that.

Take care sweetscent62. I sincerely trust and hope that your support is maintained in a manner that meets your needs.
 
This scheme was so hastily rolled out by Rudd/Gillard that nobody had time to catch their breath. A case of "just do it" by the Minister without due regard as to the machinations of this gigantic organisation. It has bumbled along from one disaster to another and nobody could be bothered or was able to address the limitations of this scheme. Add to this the perennial problem of the "scum" who find ways to rort the system and you have a behemoth system with no real checks and balances. It has been too hard for too long and it is now time to start to diassemble the system bit by bit (not wholesale as this would create it's own black hole). To do this in a systematic way would be the go - starting with re-examining the providers individually and collectively. Then move onto the claimants to examine the bona-fides of each person.
 
I’ve been trying for three years to get on with my problems yet I know people with problems less worse than mine who are on it!
It’s so depressing!
I’m not asking for much!
It seems that many of the wrong people are getting NDIS benefits while other truly needy individuals are being put through the ringer.
 

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