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.

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.

 

[kaepekrad]

I totally agree with the over haul of NDIS. there are a lot of people getting it under false pretences, or are being over paid, providers are charging exorbitant fees, and there has been no accountability.

 

[Josephine B]

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 agree with you, but my idea is draw up a whole new system where people have to apply then they're screened and assessed. As for providers they also have to apply and be thoroughly screened before being excepted because this is one of the main problems that they're ripping off the government and the recipients. Once it's all finished then totally SCRAP the existing scheme.
I also personally know of people who are on NDIS that don't need what they are receiving, but need some "little" assistance with home help, but not to going out to live concerts and the football. They also have their drivers license, but then choose to have a driver who gets paid for doing so. Also going away on cruises with their aide when others cant even go outside to see the sunshine or rain. This is ALL WRONG when there are so many others who REALLY NEED the assistance because they can't even get out of bed to go to the bathroom or feed themselves. I prefer our tax money going to these REAL NEEDY recipients rather than those ripping US ALL OFF. I could go on further who I know of, but I'm so annoyed I'll just leave it at that.

 

[Annna]

I agree with you, but my idea is draw up a whole new system where people have to apply then they're screened and assessed. As for providers they also have to apply and be thoroughly screened before being excepted because this is one of the main problems that they're ripping off the government and the recipients. Once it's all finished then totally SCRAP the existing scheme.
I also personally know of people who are on NDIS that don't need what they are receiving, but need some "little" assistance with home help, but not to going out to live concerts and the football. They also have their drivers license, but then choose to have a driver who gets paid for doing so. Also going away on cruises with their aide when others cant even go outside to see the sunshine or rain. This is ALL WRONG when there are so many others who REALLY NEED the assistance because they can't even get out of bed to go to the bathroom or feed themselves. I prefer our tax money going to these REAL NEEDY recipients rather than those ripping US ALL OFF. I could go on further who I know of, but I'm so annoyed I'll just leave it at that.

I've read a comment calling for NDIS scrapping and replacement.

I believe that would cost millions.

If you (or anyone else you know) is aware of defrauders of our tax money, report them and help clean the system up.

 

[mylittletibbies]

I've read a comment calling for NDIS scrapping and replacement.

I believe that would cost millions.

If you (or anyone else you know) is aware of defrauders of our tax money, report them and help clean the system up.

So much money is wasted. I was requested to have an OT report done on my daughter to reassess her needs.
Although it wasn't stated I assumed this was to see if they could cut some of her funds.
This was nearly two years ago. The OT report stated that she required a lot more support than she was actually receiving.
This report was shelved, I heard nothing about any additional support and her plan has just been rolled over from one year to the next.
Personally, at this moment, I think her plan is adequate although as she gets older it may need reviewing.
I manage my daughter's funds myself, which means I get much better value from the funds than if they are managed thru the NDIA.

E.g. My daughter has had the same carer for over 20 years. Well before the NDIS.
We agreed on $500/day for 24 hour care when required. Just over $20/hour, exceptional value.

When her carer was ill about 12 months ago I contacted a couple of NDIS approved providers. As we are classed as rural this is a little dearer than city but prices started at around $2,900/day for a normal weekday and increased for Saturday. again for Sunday and ended up at in excess of $5,000/day for public holidays. This is utterly ridiculous, in fact unbelievable.

On the other hand they allow people, who have no money skills or any idea of how to budget, to have access to thousands of dollars to self manage.
These people go through the yearly fund allowance in a matter of months and go back for more.

There just needs to be so many more checks and balances put in place.

 

[marni]

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.

Surely she has a disability sticker. In NSW it is illegal to park in a disability bay without displaying it, there is a fine.

 

[mylittletibbies]

I agree with you, but my idea is draw up a whole new system where people have to apply then they're screened and assessed. As for providers they also have to apply and be thoroughly screened before being excepted because this is one of the main problems that they're ripping off the government and the recipients. Once it's all finished then totally SCRAP the existing scheme.
I also personally know of people who are on NDIS that don't need what they are receiving, but need some "little" assistance with home help, but not to going out to live concerts and the football. They also have their drivers license, but then choose to have a driver who gets paid for doing so. Also going away on cruises with their aide when others cant even go outside to see the sunshine or rain. This is ALL WRONG when there are so many others who REALLY NEED the assistance because they can't even get out of bed to go to the bathroom or feed themselves. I prefer our tax money going to these REAL NEEDY recipients rather than those ripping US ALL OFF. I could go on further who I know of, but I'm so annoyed I'll just leave it at that.

Quite a few years ago now, I recall the NDIS approved funds for a prostitute for a disabled man

There was a pretty big hoohaa about it, at the time.
I wonder if they would approve the same for a woman?

 

[Josephine B]

So much money is wasted. I was requested to have an OT report done on my daughter to reassess her needs.
Although it wasn't stated I assumed this was to see if they could cut some of her funds.
This was nearly two years ago. The OT report stated that she required a lot more support than she was actually receiving.
This report was shelved, I heard nothing about any additional support and her plan has just been rolled over from one year to the next.
Personally, at this moment, I think her plan is adequate although as she gets older it may need reviewing.
I manage my daughter's funds myself, which means I get much better value from the funds than if they are managed thru the NDIA.

E.g. My daughter has had the same carer for over 20 years. Well before the NDIS.
We agreed on $500/day for 24 hour care when required. Just over $20/hour, exceptional value.

When her carer was ill about 12 months ago I contacted a couple of NDIS approved providers. As we are classed as rural this is a little dearer than city but prices started at around $2,900/day for a normal weekday and increased for Saturday. again for Sunday and ended up at in excess of $5,000/day for public holidays. This is utterly ridiculous, in fact unbelievable.

On the other hand they allow people, who have no money skills or any idea of how to budget, to have access to thousands of dollars to self manage.
These people go through the yearly fund allowance in a matter of months and go back for more.

There just needs to be so many more checks and balances put in place.

So much money is wasted. I was requested to have an OT report done on my daughter to reassess her needs.
Although it wasn't stated I assumed this was to see if they could cut some of her funds.
This was nearly two years ago. The OT report stated that she required a lot more support than she was actually receiving.
This report was shelved, I heard nothing about any additional support and her plan has just been rolled over from one year to the next.
Personally, at this moment, I think her plan is adequate although as she gets older it may need reviewing.
I manage my daughter's funds myself, which means I get much better value from the funds than if they are managed thru the NDIA.

E.g. My daughter has had the same carer for over 20 years. Well before the NDIS.
We agreed on $500/day for 24 hour care when required. Just over $20/hour, exceptional value.

When her carer was ill about 12 months ago I contacted a couple of NDIS approved providers. As we are classed as rural this is a little dearer than city but prices started at around $2,900/day for a normal weekday and increased for Saturday. again for Sunday and ended up at in excess of $5,000/day for public holidays. This is utterly ridiculous, in fact unbelievable.

On the other hand they allow people, who have no money skills or any idea of how to budget, to have access to thousands of dollars to self manage.
These people go through the yearly fund allowance in a matter of months and go back for more.

There just needs to be so many more checks and balances put in place.

So much money is wasted. I was requested to have an OT report done on my daughter to reassess her needs.
Although it wasn't stated I assumed this was to see if they could cut some of her funds.
This was nearly two years ago. The OT report stated that she required a lot more support than she was actually receiving.
This report was shelved, I heard nothing about any additional support and her plan has just been rolled over from one year to the next.
Personally, at this moment, I think her plan is adequate although as she gets older it may need reviewing.
I manage my daughter's funds myself, which means I get much better value from the funds than if they are managed thru the NDIA.

E.g. My daughter has had the same carer for over 20 years. Well before the NDIS.
We agreed on $500/day for 24 hour care when required. Just over $20/hour, exceptional value.

When her carer was ill about 12 months ago I contacted a couple of NDIS approved providers. As we are classed as rural this is a little dearer than city but prices started at around $2,900/day for a normal weekday and increased for Saturday. again for Sunday and ended up at in excess of $5,000/day for public holidays. This is utterly ridiculous, in fact unbelievable.

On the other hand they allow people, who have no money skills or any idea of how to budget, to have access to thousands of dollars to self manage.
These people go through the yearly fund allowance in a matter of months and go back for more.

There just needs to be so many more checks and balances put in place.

Surely she has a disability sticker. In NSW it is illegal to park in a disability bay without displaying it, there is a fine.

Most of us know it's illegal, but then you also get those that park illegally with a disability card that belongs to someone else, maybe a family member, but that family member isn't with them at the time. Also, I've seen tradie utes with cement mixers on board parking in the disability parks without a card. Maybe he's forgotten his card because he suffers from memory loss.