Submission 1720
Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House CANBERRA ACT 2600
RE: Submission to the Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I request this submission be published with my Name Withheld as it contains sensitive personal details regarding my disability.
Dear Chair and Committee Members,
Before I address the specifics of my argument, I want you to know a little about me and my life. I am 36 years old. I live alone. I do not have any friends or family to support me. I have two degrees. I am not employed due to my disability. I receive the Disability Support Pension. I am an NDIS participant. In the five years I have been receiving NDIS funded support, I have moved out of the family home and into the modest one-bedroom unit where I now live. I have joined a gym. I have taken up g fishing. And I have most recently begun building a business so I can engage in some meaningful work from home. One day, if my business is successful, I hope to be less reliant on the pension. But I would not have achieved these goals if it were not for the support I have received. My support team would say it was all me, but I still feel I owe them a debt of gratitude for their help. They are the only support I have. The NDIS has literally been life-changing for me. I was hopeful about the future. And that is what I do not believe there has been enough of in the community: the benefits of the NDIS to people like me and to the broader community. There are instead a slew of articles in the mainstream media by so-called commentators critical of the NDIS. They use deceptive, attention-grabbing headlines implying participants misuse their funds to, for example, go for a walk, see a movie, or get a haircut1. The general public appears to know little about what life is like for someone with a disability, so when reading such a headline, they - naturally - will believe there is something wrong: that it is not “fit for purpose”; that it has lost its “social licence”. But there is nothing wrong. I used my NDIS funding to get a haircut and I would do it again if I needed to. But it is the nuance in that admission people do not seem to understand.
Submission 1720
This is what actually occurred. Having conversations with people can be tricky for me. Sometimes I do not know what I have to say in order to get what I need. So I used my NDIS funds to seek help from my speech pathologist. She and I discussed what I needed to say and we made the phone call to book the appointment so I could get a haircut.
Some NDIS participants might not need a Speech Pathologist to help them get a haircut, but instead need a support worker to take them, look after them, and reassure them. Some might need an Occupational Therapist to help coordinate that activity. Some might need a Support Coordinator to help find a hairdresser or barber to accommodate them: perhaps they need to find a business which can dim the lights or can provide a quieter service to avoid participants’ sensory overload and subsequent distress. The point is this: the constant NDIS bashing without any context or insight has, I believe, led many to resent the idea of their taxes going toward the scheme.
On social media there is a similar but far more vitriolic stream of unfounded allegations against NDIS participants, providers, and the scheme itself. We are seen as “burdens”, “fakers”, “grifters”, “retards”, or more generally not sufficiently disabled to be deserving of help. Anyone non-white and with a non-English speaking background is a particular target. Muslims, those living in Western Sydney, and immigrants generally are singled out as scammers and fraudsters. These allegations, I fear, have infiltrated the broader Australian community and have caused the NDIS to get an even further bad rap.
However, it seems the government has seized upon the sentiments of these loud groups and reframed them as the NDIS losing its so-called “social licence”, thereby attempting to justify broad funding cuts. It is a phrase specifically used in the context of the NDIS by both NDIS Ministers, Mark Butler2 and Jenny McAllister3, and Prime Minister Anthony Albanese4. But in his speech to the National Press Club on 22 April 2026, Mark Butler, referring to his belief the NDIS’ “social licence” is at risk, cited research by Talbot Mills5:
While 7 in 10 Australians still agree the NDIS plays a vital role for people with a disability, 7 in 10 also think it’s gotten too large and struggles with dodgy providers.
Worse still, more than 6 in 10 think it’s actually “broken”.
What Butler neglected to mention is that an overwhelming majority of respondents have no experience with the NDIS.
Submission 1720
NDIS experience
Which best describes your experience with t he National Disability Insurance Scheme (NDIS)? (%)
I have personal experience (as a participant or carer in my 18 immediate family)
Younger respondents were much more likely to have had experi ence:
- Under 30: 25% personal/ 28% second hand
- 30-44: 22% I 24%
- 45-59: 15% / 18%
- 60+: 9% / 15%
I have second-hand experience (through extended 21 city were more likely to have personal (35%) or second-hand (26%) space.
I have no experience wit h the 57
Those who live in a city were more likely to have personal (35%) or second-hand (26%) experience.
Unsure 5
TALBOT MILLS RESEARCH Base, All r espondents (n=/026, July 2025) Figure 1: Talbot Mills Research showing 57% of respondents have no experience with the NDIS
Why is the Albanese-Labor government making such significant changes to the NDIS based on the opinions of people who have no experience with it? Particularly when it appears a large number of people hold prejudicial views of NDIS participants and providers alike, or simply do not understand the scheme or how it works. Does the government understand that for a lot of participants, the NDIS is inextricably linked to our everyday lives, and therefore changes to the NDIS mean changes to our lives? Does the government need to be reminded of the NDIS’ principles?
(3) People with disability and their families and carers should have certainty that people with disability will receive the care and support they need over their lifetime.
(6) People with disability have the same right as other members of Australian society to respect for their worth and dignity and to live free from abuse, neglect and exploitation.
(8) People with disability have the same right as other members of Australian society to be able to determine their own best interests, including the right to exercise choice and control, and to engage as equal partners in decisions that will affect their lives.
(9A) People with disability are central to the National Disability Insurance Scheme and should be included in a co‑design capacity.
(10) People with disability should have their privacy and dignity respected.
National Disability Insurance Scheme Act 2013 (Cth) s 4
Submission 1720
Impact
I also want to give some first-hand evidence of the impact the proposed changes have had on me. Even without the changes being implemented, their proposal has caused me significant distress.
In the days leading up to Mark Butler’s appearance at the National Press Club7, I, and I believe a large number of others, were under the impression the changes Mr Butler would announce were going to be in the area of policing and regulation. Matters of NDIS-related fraud and misuse of funds have been making the rounds in the mainstream media and on social media. It seemed reasonable the Minister would be making announcements to address these issues.
When it became clear the government had decided to slash and burn the NDIS, I became very stressed about what was going to happen to me. A flurry of questions went through my mind: Am I going to be one of the 160,000 who would be kicked off for being “high functioning” or having “low support needs”? Am I too “high functioning”? Do I have “low support needs”? Some things I can do by myself, but some things I cannot - does that matter? Sometimes I am OK, but sometimes I am not - how much of the time do I have to not be OK to be deserving of help? I thought these people were supposed to help me. What am I supposed to do? What if I am kicked off? Where do I get help? I do not have anyone else to help me. I have gotten to this place in my life with help from my NDIS-funded support team - am I going to be abandoned? What am I going to do? I do not know what to do.
I questioned why these proposed changes had seemingly come out of nowhere. I do not recall ever receiving any correspondence from the government regarding this issue, certainly not through any official channels such as NDIS-related emails. I looked back through my email and discovered I have received exactly one email from the NDIA on 14 May 2026, more than three weeks after the Minister’s Press Club speech, vaguely describing there being “reforms”. A screenshot is included below.
Submission 1720
Federal Budg1et
The Australian Government has announced reforms in this year’s Federal! Budg1et
The government \r;rill deliver this 1pla1n by:
-
fighting fraud and stopping rorts
-
slowing rapid cost increases
-
dearer eligibility requirements
-
delivering quality servioes and su11iport to participants.
To do this, the government will introduce a bill to P ar1liament soon. Nothing will change until thi,s law passes. Cuirrent NDIS rules and pl1aning stay the same until t hen.
Participants don’t need to do an~~hing. You shou’ld !Qeep using your current p1la1n.
The Department of Health, Disability and Ageing wi’ll share more information about what this means for NDIS participants on lhei’r website.
We’ll also continue sharing information about dhan ges to the ND:IS on our website. and 1in this newsletter.
Changes to the NDIS
redacted
Figure 2: section of email from NDIA
When I attempted to discover specifically what the reforms were, I was met with a page stating,
“Sorry, this page isn’t accessible”. “Forbidden”. This is still the case.8
8 https://www.ndis.gov.au/new-way-of-planning/changes-ndis-legislation
5
Submission 1720
v n Access denied I NDIS X + - D X
-E- 0 G;J I ", www.ndis.gov.au , ,, 1 , 1, , J " 1• , ,.
<(: Q ··· " j Chat
v @ +A Site search 0. Portal sign in ~ t 1800800110 C2;i m
Q Understanding the NDIS v Applying v For participants v For providers v News and events v About v Contact v
Sorry, this page isn't accessible.
403 - Forbidden
Try clearing your cache and cookies or you might also need to logi n to access this page.
0 @ Im y a
0. Recent website updates Anew way of NDIS laws Careers
planning
m,Sitemap
Governance Publications Policies. rules and
le al
Figure 3: screenshot of web page supposed to describe changes to NDIS legislation
Submission 1720
and I were to fall and hit my head, someone would hopefully find me or at least raise the alarm within those few days. But the more my funding is cut, the longer that time period becomes where nobody finds me. And if I were to be ejected from the NDIS, I literally have nobody to find me. I genuinely do not know who the next person to find me would be. And while I am fortunate to be physically healthy, others are not. I am not surprised to be reading how terrified they are. This is the reality of living with a disability.
In any case, it was not the best time for me in the three or four days or so following Butler’s announcements. I did not sleep properly. My resting heart rate increased significantly. I was constantly overheating. I ordered three pizzas and stress-ated them all in one sitting. But on Anzac Day I needed to go grocery shopping, and by this point I was not in good shape. I want to describe what this was like for me.
I drove to my local Aldi, one of the few places I can get to by myself. But as I turned into the car park I noticed how full it was and realised it was Saturday. I avoid going to Aldi on Wednesdays and Saturdays as much as possible since it is their Special Buys days, so it is far busier than usual. I parked my car and figured I would just tough it out and get out of there as quickly as I could. I have benzodiazepine medication prescribed to me by my GP and psychiatrists which I carry on me, but it did not cross my mind to take any. I should have.
I grabbed a trolley and went inside. I saw how busy it was and thought to myself, "Oh no". I started getting angry and intolerant of everything and everyone around me. People everywhere. Kids everywhere. Screaming kids everywhere. Several of Aldi's large restocking crates blocking the aisles. People standing around chatting to each other blocking the aisles. I began gesturing at people to get out of the way. It was very much unlike me. I was overheating so badly I was sweating from my head. I grabbed a bottle of Gatorade to buy.
I went through the self-checkout so I could take my time, but I always feel people glaring at me and making comments about "why he's going so slow". I had to line up because it was so busy. And when I got to the next open terminal I discovered the previous customer had left their basket there. Every. Little. Thing. I put it in its proper place. I was scanning my items one at a time, and began feeling very strange. I could feel and see the droplets of sweat falling from the sunglasses I wear in bright environments so it is a little more tolerable. People seeing me anxious has a snowball effect of making me more anxious. I started feeling so deeply angry and began zoning out. For about thirty seconds, I felt like I was on autopilot. I was only aware of the background noise of people talking and the beeping of the machines. I felt like if anyone came up to me during this time with a complaint I was going to have a complete and total public meltdown and begin verbally abusing the person. I was so scared that all the anger and desperation that had built up over the previous few days was going to erupt.
Fortunately I managed to pay and get out of there without incident. I got back to my car and drank the entire bottle of Gatorade in one go. I just wanted to go home. By the time I unpacked the trolley, got home, unpacked the car, and sat down, I nearly broke down in tears.
I know I am not the only person who is distraught. People are terrified that the system which is supposed to protect us is now going to abandon us. Disability rights advocate Sam Connor recently pointed this out in two posts I want to highlight below.
Submission 1720
-· • Sam Connor t) @criprights
Fun fact.
The 50% cuts in social and community participation in NDIS means that those who need support to work will lose their jobs. t . Briana Mills, LMF … @1tl10B1i;i11ziMills Say it with me: Disabled people deserve to live even if they can’t work.
I,_
Figure 4: X post from Sam Connor10
- · -• Sam Connor t) @criprigr1ts
I just went into one of the larger disability groups that I administer and people are talking, seriously, in the context of losing their NDIS supports, about accessing Voluntary Assisted Dying.
Time to get offline again.
Goodnight.
Figure 5: X post from Sam Connor11
10 bttps •11x com/cripcigbtststatus12oss222404z 1s130330 11 https://x.com/criprights/status/2057027389876838786
Submission 1720
I am particularly displeased with how the government has handled this. There has been little information and little time for me to properly present my view about its disastrous proposals. The government has not requested my feedback, nor did it make it known to me there was a Senate Committee I could make a submission to. I have therefore not had enough time to review the bill in its entirety. I fear there are many NDIS participants who will now go without their voices being heard about changes which will fundamentally affect them. It is not right. That being said, I do not disagree with all of the proposals as I understand them:
-
Functional capacity assessments are, in theory, a great idea because they target what the participant actually needs rather than making potentially unfounded assumptions based on that person’s diagnoses. But I have doubts about whether such an assessment can properly capture the details of a person’s overall functional capacity. Speaking from personal experience, capacity can vary depending on various factors. For example, during summer in particular I have diminished capacity due to heat intolerance. If an assessment takes place during a cold day, I may present as more functional than usual.
-
I fully support measures which ensure funds are accountable and ensure they are paid to those who provide support, including anti-fraud measures. From a participant perspective, at a bare minimum, each claim should require an accompanying invoice or a compelling reason why one could not be provided: this should be an exceptional circumstance. But where an invoice cannot be provided, a Commonwealth Statutory Declaration (which myGov already has the capacity to issue12) should be required by law.
-
While blanket cuts to participant funding are unacceptable, if the government is intent on following through on its plan to cut social, civic and community participation and capacity building daily activities from 1 October 2026, participants must be given total budget flexibility. We need the choice to pool our remaining funds and prioritise the supports needed for our immediate survival. It must be according to need, and the best people to determine those needs are the participants themselves, not a bureaucrat in Canberra.
The irony of these proposed reforms is that they threaten to destroy the exact outcomes the government claims to want. With my current NDIS supports, I am actively building a business to become less reliant on the Disability Support Pension. I have worked so hard to get to this point in my life, sometimes too hard to the point of burnout. If my supports are cut and I am isolated, that progress will instantly collapse, and I will be permanently dependent on the pension system for the rest of my life. I urge the committee to consider that cutting vital supports to participants like me is setting us up for lifelong dependency on welfare.
Yours sincerely,