My response to the NDIS Bill 2026

Reading through the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026, as someone with a physical disability and Autism Spectrum Disorder, and with friends with various disabilities including intellectual and physical disability, I am not left feeling secure in my future, or theirs.

Rather, it makes me feel intense unease and anxiety about the direction and intentions of the NDIS. I understand the need for the NDIS to make changes to the current ways of operating, but the methods outlined in the Bill mainly serve to punish those of us living with disability.

In the following response, I will outline the concerns that were raised as I read through the Bill, the questions that remain unanswered, and my thoughts about the future of the NDIS.

Being able to get NDIS and planning for supports – Part 1

In the Easy Read document, it states that one of the changes in ‘Being able to get NDIS and planning for supports’ will be to ‘make a definition to say what functional capacity means’ (pg. 8).

In the actual Bill, Schedule 1, Part 1, it states that the definition of functional capacity will be ‘the person’s ability to undertake the activity: (a) without assistance from other people, assistive technology or modifications; and (b) in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances.’

This raised a concerning question for me. In August 2020, a document was released titled ‘Independent Assessment Framework’, which included a definition of Functional Capacity.

It states, ‘functional capacity refers to an individual’s ability to be involved in life situations and to execute tasks or actions, with or without assistance (assistive devices and/or personal assistance). Information regarding impairment(s) and environmental factors, and how they impact the individual’s function is included when assessing functional capacity.’

This framework was not upheld, however I do find myself wondering about the re-definition of functional capacity. Six years ago, functional capacity included a person’s ability to complete tasks ‘with or without assistance’, and now it is ‘without assistance from other people, assistive technology or modifications’. It looks concerningly like a shifting of goal posts, and I have to wonder how far they can be moved.

In the Easy Read document and the Fact Sheet, there is reference to a ‘technical advisory group’ (pg. 9). I could not find mention of an advisory group in the actual Bill. I would like to know, and I believe it is vitally important to inform the disability community, if there will be people with lived experience of disability on this advisory group, and if so, what the percentage will be. As the Easy Read document states, ‘expertise is knowing a lot about something’. If you want someone who knows a lot about what it’s like to experience Functional Capacity Assessments and how accurate they are at portraying our actual capacity and providing support for our needs, you need to come to the real experts.

Being able to get NDIS and planning for supports – Part 3

This is misleadingly soft in the Easy Read document. ‘We will make it clearer what supports you can get from the NDIS. People will only be able to get NDIS supports if it is for their disability.’ (pg 14).

That sounds like something no one could possibly disagree with. However, a closer look at the Bill causes me concern. The note for 31 Paragraph 34(1)(aa) (pg. 15) states ‘omit “arising from an impairment”, insert “arising directly from an impairment or impairments”’.

This creates problems, as disability isn’t mono-dimensional. Many people with disabilities have issues that have arisen from their impairments, but which might not be able to be proven to have arisen directly from their impairments.

For example, I am on the NDIS for a condition called Myalgic Encephalomyelitis. It is my primary disability. It causes extreme weakness, fatigue and pain. Due to this, I use a power wheelchair.

However, I also have a condition called Fibromyalgia. It causes weakness, fatigue and pain. It is not my primary disability, and I’m not on the NDIS for Fibromyalgia.

Does my need for a power wheelchair arise from my Myalgic Encephalomyelitis? Yes. Does it arise directly from my Myalgic Encephalomyelitis, with no interference or contribution from anything else, such as my Fibromyalgia? Possibly not. I cannot separate the pain and weakness of one condition from that of another. And if I can’t, how can the NDIS? But I do need a power wheelchair for my Myalgic Encephalomyelitis – that’s undeniable.

Then there was the case of Lee Eastham, in a groundbreaking Federal Court ruling. He is on the NDIS because of his vision and hearing impairments. He needed a mobility scooter, however the NDIS refused his request on the grounds that his inability to drive was not only due to his NDIS-accessed impairments, but separate medical conditions that were not connected to the NDIS.

He brought an appeal to the Administrative Appeals Tribunal, stating that his need for his scooter was directly linked to the combined effects of all his disabilities – some of which are connected to the NDIS, and some which are not. The NDIS needs to remember the interplay of conditions, and not expect people to compartmentalise our needs.

Being able to get NDIS and planning for supports – Part 4

Part 4 is one of the most concerning, ableist things I have ever read. In the Easy Read document, it reads as follows:

‘the Minister will decide to have less money in NDIS plans for supports for: social; civic; community participation. Civic means being part of your community.’ (pg. 15). It is stated here, in black and white, that there will be less support for people with disabilities to be a part of their communities.

This will lessen the chances for people with disabilities to engage with the economy, either by learning how to progress to the workforce, or by visiting local businesses.

According to the NDIS website, as of March 2026, over 700,000 people are accessing the NDIS. If the government removed the infrastructure for 700,000 people in any other demographic to engage with their local businesses or enter the workforce, it would be seen as fiscally irresponsible.

The Easy Read document also openly states that the decision will be made to have less money for capacity building, and explains, ‘capacity building is teaching you skills to help you do more for yourself.’ If the NDIS is concerned about its ability to maintain itself in the future, why take a step to ensure that participants will always require the most help?

To lessen capacity building means that someone who could one day do their own house cleaning and grocery shopping with no or minimal NDIS funding will, instead, always need to rely on support and, thus, funding that could have instead been outlaid in the early periods of their plan to set them up for future independence.

This isn’t even considering the fact that, for some conditions, capacity building and activities to sustain capacity are needed to make sure someone doesn’t deteriorate, in which case they would need increasing levels of support. A level of maintenance to avoid increased longer-term costs seems reasonable to me.

In the previously mentioned document ‘Independent Assessment Framework’, it states ‘the NDIS has been established with the guiding principles that people with a disability have the same right as other members of Australian society to realise their potential for physical, social, emotional and intellectual development. That is, they be supported to participate in and contribute to social and economic life to the extent of their ability (National Disability Insurance Scheme Act – 2013).’ The reduction of Capacity Building and social, civic and community participation supports flies in the face of these foundational beliefs.

Being able to get NDIS and planning for supports – Part 6

I found it interesting that the Fact Sheet about the Bill is titled ‘Reasonable and necessary supports’, and reiterates that the section is about ‘determining what supports are reasonable and necessary to fund’(pg. 2).

However, the actual Bill has the following note: ‘Omit “reasonable and necessary”, substitute “NDIS”’ (pg. 27). This recontextualises the general principles of the NDIS, now stating that people with disabilities should be able to receive NDIS supports – not reasonable and necessary supports.

This seems to take away from some of the fundamental, core values that the NDIS introduced itself on, and that people with disabilities have relied on from the beginning. In a document released by the NDIS in April 2025, titled Principles we follow to create your plan, it repeats the importance of the ‘reasonable and necessary’ criteria multiple times. In an earlier version of the document, released in November 2022, it contains the statement:

“The NDIS was set up as a world first approach to disability support. It puts people with disability at the centre of decision-making, through the principles of reasonable and necessary supports and individual control.”

Changing the wording of the NDIS to make the supports no longer synonymous with ‘reasonable and necessary’ creates confusion for participants, and more scope for the NDIA to say ‘no’.

Being able to get NDIS and planning for supports – Part 7

This section about plan suspensions is deeply concerning considering the cavalier way the NDIA is already treating contact requirements with participants. Having it clearly stated that the security of a participant’s plan can depend on the variables of things that have already failed multiple NDIS participants does not inspire confidence.

There have been documented cases of the NDIA sending communications to participants in unsuitable formats. Vision-impaired participants received printed letters or PDFs that did not support screen reading software. Some participants were waiting several months to a year before they received an accessible version of their plan. They could, of course, have someone else read it to them – but this goes against many participants’ intention to be independent.

This was detailed in an article in the Guardian seven years ago, in which it was stated that the oversight was to be remedied (despite it being raised by Blind Citizens Australia three years previously).

However, in an article released by Blind Citizens Australia in June 2026 in response to this Bill, the BCA once again raise the issue, stating ‘for years, people who are blind or vision impaired have reported receiving inaccessible letters, PDFs, forms, portal notifications and other communications from the NDIS. These are not isolated incidents. They are systemic failures that continue to undermine participant independence and engagement.’

It raises the concern that blind and vision impaired participants will be punished for circumstances out of their control. Will they be considered non-responsive if they do not respond to correspondence that is inaccessible to them? As Stefan Slucki, Director of Blind Citizens Australia, states, ‘the government cannot claim participants are failing to engage when the agency has failed to communicate accessibly in the first place. If a participant never receives information in a format they can read, understand and respond to independently, that is not participant non-compliance. That is administrative failure.’

There have also been reports from Deaf and hard of hearing participants of receiving phone calls from the NDIA, despite having preferences on file for written or face-to-face communication. Asphyxia, a Deaf author and artist, wrote a detailed post on her blog in 2022 about her communications from the NDIA. They include being told that emailing wasn’t an option, having a doctor from the NDIA call to confirm her deafness, and having an NDIA employee speak to Asphyxia’s friend about her confidential NDIS information in order to relay it to her, because she wasn’t given a chance to organise a professional interpreter.

The NDIS claimed years ago to be making progress towards ensuring that all participants received communication in an accessible way, and yet there are still reports of people experiencing exclusion in this regard. If this vital part of the system cannot be fixed, participants should not suffer the consequences of administrative failures.

In the Easy Read document, it also states that ‘the NDIA can suspend NDIS plans’ when a participant has ‘not given them what they need’. My own experiences with requests from the NDIA lead me to have similar concerns about this approach as I had to the prior issue of non-responsive participants.

When I submitted my request for a Change of Circumstances review in mid-2025, I did not receive a response until 2026. When I was contacted by the Senior Planner Delegate, I was told that my Functional Capacity Assessment was out of date and I would need to provide a new one, as a new one was required every three years (please note that my FCA was not out of date when I submitted my documentation, and the documentation provided a functional capacity summary).

I was told to provide a new Functional Capacity Assessment in two business days. When I explained that this process would usually take at least several weeks, I was told it could be extended – to three business days.

I was not able to provide a new Functional Capacity Assessment, however I provided the functional capacity summary, and asked if this would suffice. I did not receive a response. We next heard from the NDIS two months later.

There was no mention of the Functional Capacity Assessment. Now, to ‘give them what they needed’, we had to provide proof that my environment was suitable for a power wheelchair. The NDIS has been aware of my environment – meaning my home and my vehicle – since the beginning of my NDIS plan ten years ago. It has it on record that my home was purpose-built to accommodate a power wheelchair. It funded a wheelchair-modification for my vehicle. However, it stated that, as my Occupational Therapist didn’t explicitly state that my new wheelchair was compatible with my environment, my request would be held up again until I provided this evidence.

I provided the evidence. I gave the NDIS what it needed. I also found the written proof in the initial Occupational Therapist report from the year prior where my therapist stated that the wheelchair was only prescribed after it was determined that it would be compatible with my home environment.

This experience, and others before it, give me the feeling that when the NDIS says they can suspend a plan if the participant has ‘not given them what they need’, that’s actually an excuse to throw unnecessary delays and roadblocks in the way of a request, to the point where all the documentation is out of date and the process needs to painfully begin again. If this is not the intention, then it is a sad side effect of administrative failure. When the choices are malevolence or incompetence, it is hard to have faith in the system.

Fraud measures

These changes look good on paper. I do hope they will be effective in combating issues I’ve read and reported on in recent years, including the woman convicted of fraud at Newcastle Council who became an NDIS auditor (Lisa Scully), neglect in disability organisations only coming to light after there is a death in NDIS custody (Kyah Lucas), and separate deaths in NDIS custody leading to jail sentences of less than ten years (Ann Marie Smith).

The first NDIS Fraud Taskforce was established in 2018, five years after the development of the Scheme, and the Fraud Fusion Taskforce developed four years later in 2022. In the wider community, the finger of blame for fraud and the high cost of the NDIS is often pointed at the participants, with people not realising that the NDIS left itself open to fraud from the very beginning, with a rushed rollout, unverified providers and claims, and a system based on reaction instead of prevention (referenced by John Dardo, head of integrity transformation at the NDIS, in a parliamentary inquiry into the NDIS in May 2026).

I do sincerely hope that these changes break the cycle of the past decade-plus, without participants bearing the brunt of the fiscal responsibility.

New framework planning

My colleague Elyce Shearer has experienced a prototype of the new ‘support needs assessment’, and has written an excellent paper about her experiences. It has brought up deep concerns for me. I believe it is an inappropriate way of measuring someone’s needs. One example is measuring a person’s needs on a good day – this is completely useless. If someone does not need their wheelchair or walking frame on their best day, that does not reflect their need for assistive technology on every other day.

What her experience of the support needs assessment shows is a system that is not aware of the needs of people with disabilities, and which will not put them at the centre of the process. And if we’re not at the centre of the NDIS, then what’s the point?

Securing the NDIS for Future Generations – my final thoughts

The Participant Service Charter, featured on the NDIS website, makes clear the NDIS obligations to participants.

‘We are committed to offering a service that is:

Transparent – We will make it easy to access and understand out information and decisions.

Responsive – We will respond to your individual needs and circumstances.

Respectful – We will respond to your individual needs and circumstances.

Empowering – We will make it easy to access and use information and be supported by the NDIS to lead your life.

Connected – We will support you to access the services and supports you need.

This latest Bill moves away from the Participant Service Charter by putting the onus on the participants to carry the weight of realigning the NDIS for future sustainability, by relinquishing our potential and our means of engaging with the world. The NDIS has not fixed whatever internal issues prevent them from fulfilling the Participant Service Charter, and yet have moved towards penalising participants for things out of their control in an effort to make the NDIS stable.

I am obviously personally interested in making sure the NDIS is viable for future generations. The cost of the NDIS is significant. However, the NDIS has also become an integral part of the Australian economy. In False Economy, an analysis by Per Capita for National Disability Services, which assessed the economic benefits of the NDIS, released in 2021, it was estimated that the economic multiplier effect of the NDIS could be in the range of 2.25, resulting in a substantial reinvestment back into the economy (pg. 5).

The article states, ‘the recent attempt to instigate so-called ‘independent assessments’ to restrict access to the NDIS was indicative of the current government’s approach to the Scheme, which is to see it as a cost burden rather than an investment in human capital and wellbeing.’ (pg. 6).

It also explains the employment opportunities brought about by the NDIS. ‘The NDIS creates employment for around 11,500 people, including 4,396 APS employees, 1,692 labour hire contractors and consultants, and 5,462 people employed by NDIA’s partners. There are an estimated 270,000 workers across 20 occupations working in 11,600 providers, these include disability support workers, allied health professionals and physical therapists.’ (pg. 13)

Not only this, but the NDIS has indirectly increased employment opportunities for people with disabilities and their family members. ‘Given the investment in paid care under the NDIS, a significant number of former unpaid carers will have re-entered the workforce.’ The numbers include an 8.2% increase in paid jobs for carers of child NDIS participants, with further increases in working hours, as well as a 4.9% increase in paid jobs for carers of young adult participants.

The article also points out, ‘over 71% of carers are women, meaning that the enabling of carers to take up paid employment is likely to have a positive impact on gender equity in workforce opportunity.’ Considering that women in Australia are more likely to find themselves in part-time and casual employment (32% and 27% respectively, compared to 11% and 22% for men), giving unpaid carers more opportunities to seek work seems, to my uneducated eye, to be a healthy move for the economy.

In the NDIS Corporate Plan, released in 2025-2026, it states that the NDIS comprises ‘funding for services that assist people with disability to participate in economic and social life’ (pg. 11). The Outcome Statement of this document is to ‘improve the independence, and the social and economic participation, of eligible people with disability through the management of a financially sustainable National Disability Insurance Scheme with proper, efficient and effective use of resources.’ (pg. 11)

The functions outlined in this document seem to promote the former focus of the NDIS – respect for people with disability, promotion of our independence in our communities and in the workforce, and ensuring the NDIS can remain financially sustainable without infringing on the support we need.

The Corporate Plan specifies an outline for recording participant employment rates and participant social and community engagement rates, with these records measuring ‘measuring the effectiveness of the NDIS in supporting the independence, and social and economic participation, of people with disability.’

The Corporate Plan did not see us as a burden to be lessened. The False Economy article explains how people with disability, and the NDIS, can help contribute to the economy. The Participant Service Charter puts people with disabilities as central, and deserving of respect and a place in society.

For generations, people with disability were shunned or seen as ‘less than’, as not worthy of being part of the communities that surrounded us. We were left at home while the world continued past us, decisions were made for us, and the general consensus was that we were a burden and should only be helped when it was absolutely necessary. We should be kept alive, but not helped to live a life.

When the NDIS was formed, it was the first chance many people had to integrate with their communities. It was their first opportunity to learn skills, to seek employment, to make friends. It was the first time they had not been seen – and treated – as a burden.

Many of them are now facing the uncertainty of having the funding they relied on to access these communities and opportunities reduced. Intrinsically connected to this funding reduction is uncertainty about a sense of self-worth. Are we now the burdens that we worked so hard to grow beyond? Are we going to lose the opportunities we fought so hard to prove we deserved? Are we going to lose the responsibilities we had to convince people we were capable of?

This Bill does not completely reflect the needs and concerns of people with disabilities. This is why so many independent advocates and advocacy groups oppose the Bill in its current form. This includes groups such as People with Disabilities Australia, Women with Disabilities Australia, Inclusion Australia, and National Legal Aid, which all point out concerning issues in the changes that are being proposed.

The Bill needs a lot of revision before it is suitable in meeting our needs and showing us respect as equal members of the Australian community. A lot of this is down to an innate lack of understanding.

There are only approximately 23% of NDIA employees openly identifying as living with ongoing disability (according to the National Disability Insurance Agency Annual Report 2024-2025). It also took almost ten years for the NDIA to appoint a person with a disability as head of the NDIA board. It took a further six months for the board to have an equal ratio of people with and without disabilities.

The voices of these people are strong, but they face an inordinate amount of pressure when they can be easily drowned out by the opinions of those who know and have experienced less.

Please listen to us. We do know best about what we need, and if you do not work with us and try to meet us where we are, Australia will be worse off. We are the one minority that anyone can join at any time. Disability rights are human rights. Disability rights are everyone’s rights. Disability rights are your rights. Look after us. We’re trying to look after everyone.