Submission to the Senate Community Affairs Committee

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted by a person with the lived experience of two interactive genetic syndromes causing increasing Physical Disability and a Psychosocial Disability that interacts with my Physical Disability. I have been accepted as a NDIS Participant for both areas of Disability.

Background

I am a disabled person with direct, lived experience of navigating the NDIS since the Scheme was introduced to my rural area. I have had the direct and profoundly personal detrimental experience of the bureaucratic power games of the Federal Government from the very beginning.

I was originally receiving support from the Federal scheme called Personal Helpers and Mentors Service (PHAMS) for my Psychosocial Disability. I was left completely on my own and at high risk when the first thing the Federal Government did on announcing the NDIS was to cancel the PHAMS funding twelve months BEFORE the NDIS was introduced to my area. That deleted support for 5,000 mental health patients and tossed all their qualified and experienced support workers that they had relationships with. Those workers were mostly lost to us because there were no other jobs and they either left the industry or moved to Melbourne. Most of those people never applied to the NDIS because they were too disabled to fill in the forms and get reports on their own.

I was different. I was able to swap phone numbers with my PHAMS worker and she managed to get a job working with an agency to help people get onto the NDIS. She took me to every workshop and information session that was going in the area. I was too disabled to be able to attend any of these without her. I was very, very lucky.

Even with her help, it took seven months to plan, prepare and fill in the application forms when the NDIS was formally rolled out in my area. We all knew that the NDIS was refusing people for various random reasons and so my worker prepared me psychologically to be ready for that and to be ready to do an appeal. We put the forms in and it took me three months to recover from the trauma of doing that. I just cried all the time. Why? Because I had to fill in a form with all the things I couldn’t do. I had to face the trauma of my lived reality in minute detail. I only survived by NOT looking at my life and pretending I was OK.

Then the NDIS refused me access to the NDIS. Why? Because someone in some office somewhere in Canberra decided to send me the bog standard copied and pasted letter under Section 24(1)(b) - “The impairment/s are, or are likely to be, permanent.” My support worker went into support mode – “Don’t worry. Just breathe. We’ll appeal. It will be OK.” I went into rage mode. I wrote back an email. Blunt. Precise. I suggested “they” should read the supporting evidence before they send me and cut and paste letter under Section 24(1)(b). The NDIS hurriedly changed their mind and accepted me. The evidence was a Medical Panel Certificate stating that I was permanently Psychosocially Incapacitated and stated my degree of permanent incapacity. I was also accepted under Physical Disability as well.

My submission is specifically to address the fundamental flaws in the NDIS that have been there from the beginning and the current process of unacceptable change that is currently happening.

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1. The Issue of the Insurance Model of the NDIS.

The Australian Political system means that to get anything through parliament, the party in power must have the numbers to get a vote through. You must have the Opposition on side if you don’t have the numbers in the Senate. Labor had to get the Liberals on side. Compromises were made. Someone decided the model for the NDIS Scheme should be an Insurance Model.

This means the Australian population is “insured” for disability. But like all insurance companies, you have to put in a claim, with evidence, to get your claim accepted. Having been accepted, the insurance company decides what your claim covers, how much they are going to pay and what they are going to pay for. Then there is the fine print that you never knew about until after you need to put in the claim. The insurance company has all the power, all the control and all the motivation to minimise the amount of the payout. The NDIS is exactly this model but it has an inbuilt additional power. It is a legislated power-over system that specifically prevents any citizen from suing anyone in the NDIS system for abuse, negligence or breach of contract.

Participants have no power. Participants have no rights. Faceless people in glass offices control your life with a tap of a keyboard and the systems of appeal are internal and hidden. The Tribunal is completely overloaded and is a legal adversarial structure that many disabled people cannot access due to their disability and associated poverty. There is no mediation system, no access to the people who made the decisions, no negotiation and no support other than to use NDIS support money to fight the NDIS itself. We are spending all our time and energy fighting you for the things we need. We are the least likely people to be able to do that. You win.

The structural design of the NDIS is detrimental to the welfare of disabled people and actively discriminates against the disabled.

2. The NDIS Language of Power and Propaganda

Of all the things that politicians have done to me and to all the other disabled people in Australia is the use of fabricated slogans and words to manufacture public support for the funding cuts to the NDIS. Then say that the public is waning in their support of the “social licence” for the NDIS. Well, that’s because your propaganda worked a treat, Mr Butler. The clinical, planned use of specific words are a calculated tool to alienate the disabled from the general public. The worst word that has ever been used against me is the word “sustainable”. For a very long time, this word has been used in terms of the environment – as in sustainable forestry. The Cambridge Dictionary defines this as: causing, or made in a way that causes, little or no damage to the environment and therefore able to continue for a long time. I am not a tree. I don’t cause damage to the economy or the community. How dare you say that I do! I need what I need. That will cost the government what it costs.

The truth is politicians as choosing to limit provision of needs to disabled people because they want to. They have chosen to say - “Betty, you may come in and be provided for but Bill can’t come in. Bill is not worthy. We do not choose Bill.” The politicians are saying - “Fred, we don’t want to provide for you anymore. You have to leave.” The politicians are saying - “Amy, we’ve decided not to provide for your kind of disability any more. You are not disabled enough. Go away.” The politicians are dividing the disabled into those who are worthy and those who are not. Those who have provision and those who don’t.

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The same politicians are not applying the word sustainable to the ever-escalating cost of the nuclear submarines that haven’t been built yet and are now apparently going to be second-hand but that we will never get. The politicians will just say Australia needs them. But Australia doesn’t need the disabled. We are just a burden. We drain the coffers. We are economically unviable. 160,000 to 300,000 of us have to just go just because you made up a number.

The sad reality is that the NDIS was started because the disabled were never provided for in the first place. The governments didn’t care. The community didn’t care. Now after we have had a chance to live like normal people and reach our potential like normal people, you are taking it all away because Professor David Cullen whispered the lore of economic rationalism in your ear and you liked that idea.

You never once told the public we don’t get free haircuts. You never once told the public the NDIS MAKES A PROFIT not a loss. You never once told the public IT WILL COST MORE NOT TO PROVIDE FOR THE DISABLED. You never once told the public the money you pay for the NDIS doesn’t disappear but recirculates in the economy and employs thousands of people and thousands of businesses that all pay taxes. You never once told the public the fraud in the NDIS is your fault because you didn’t set up a suitable computer system that can take invoices out of the “automatic” payment system and process them manually if they are outside normal limits. Who sets up a bank account that is externally accessible and then complains that hackers accessed it? Who punishes the disabled for hackers accessing the government coffers? The Federal Government, that’s who. Your main costs are the totally out of control administration costs and ever-increasing bureaucracy and paper work that does nothing to help the disabled in any way. Every change you make doubles the paperwork and costs, and does nothing to stop any fraud.

Then you actually write propaganda about our “rights” and you “respecting us.” What respect? You have NO respect for any of us. Your language is appalling. Your words hit us and hurt us. You scare us and threaten us with them. We are all terrified of saying the wrong thing and being punished. We dare not speak out or complain. We can be picked out and “reassessed” and thrown out of the NDIS on the whim of any disgruntled NDIS ruler.

I was told by one of my workers not to write this submission. It is too dangerous.

I decided to speak up. Because thousands of other disabled people have no voice. I am choosing to speak up for them.

 3.  The Systemised Disrespect

There’s a lovely document called “NDIA Values, Capabilities & Behaviours”. It says, “The Agency puts participants at the heart of everything it does.” It says, “We seek to understand and address our stakeholders’ needs. We deliver on our promises. We empower and invest in our people. We are proud of our workplace and the work we do.” This all sounds dandy but actually means nothing. As for that bit about, “Respecting the lived experience of the disabled”, you have no respect at all. You haven’t actually listened to any of us in this charge for economic rationalism. Your consultation process is just telling us what you are going to do. Anything we say has no effect on your decisions at all.

When I have a problem or a query, I have to ring a privately contracted call centre (I can’t type), who doesn’t have access to my file and can’t answer any questions but sends an email to “enquires@” and I wait for a non-reply or an answer to a question I didn’t ask. It entirely depends on the understanding of the call taker as to whether my question is recorded properly and if the random

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person at “enquires” understand what I’m after as well. I have no contact with anyone even if I ask to speak to my so-called NDIS contact printed on my Plan. Trying to get a Planner to ring you is impossible if your problem needs someone with some decision-making powers. There’s a very effective brick wall between me and anyone who can make a decision. Even when you go to an NDIS office, they can’t do anything either. The power brokers are inaccessible. This isn’t an accident It’s a planned system to control the power-over, hierarchical system of the NDIA.

We can have no access to any of the actually power brokers. I bet the NDIS Board would be horrified if they ran into any of us Participants in the street. And as for the really important people like Graeme Head, I’d like to ask him a question about why the NDIA system is printing and posting 5, 6, or 10 copies of letters or Plans to people all the time. A trivial question maybe but it’s costing you. And why do you need me to do an OT Report for $5000 dollars only for your Planner to ignore it and cut all my funding by 2/3? The OT Report contained results of the WHODAS that were “severe” and “extreme” impairment in all domains. The end result of these systemic cuts is that my condition has deteriorated and I have none of the services I need to complete my Goals.

But the best is after I finally got a copy of my new Plan after 5 months - there was an IT problem and they couldn’t print it – I only got it because the Planner issued me with a new Plan that’s only for a year and not five years WITHOUT ANY CONSULTATION, CONTACT OR NOTICE AT ALL! Just an email – here’s your new Plan! I don’t want a new Plan. That means I’ve lost all the money on my funding I’ve saved up. It doesn’t roll over. I need every penny I had. I don’t have enough anyway. Even better are the factual mistakes all through the Plan because the Planner didn’t do her job. I have to just try to ignore it because there is no method to do an edit. Where did the “empower the participants” go? Where did the “understand and address our stakeholders’ needs” go? The Planner’s boss told her to do it and bugger anything I want or need.

In my Plan it says under “community support” that I have two friends. It says they both live in Melbourne. That is not true. One lives in Tasmania. I can’t ever travel to Tasmania. I can never see her. I can only ring her. The other one does live in Melbourne. To show you the worst bit, the most hurtful, destructive and horrible thing out of all this that you have done to me, I am including a picture of my so-called “Community Support” friend. My dear fiend who is dying in a nursing home from serious dementia with 5 broken vertebrae that they can’t operate on. She can’t ring me and she can’t answer my calls any more. I can’t get to her to say goodbye. I can’t drive and I have no transport money in my Plan. And you dare to list her as my support. Your disrespect for my situation and my friend is truly destructive.

The powers controlling this dismantling of the NDIA are creating a new version Robodebt. You will kill people.

Rhonda Collins

May 2026