Submission 3217 — Name Withheld — NDIS Future Generations Bill

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Attn. Legislative Affairs Committee- National Disability Insurance Scheme (NDIS)

Amendment (Securing the NDIS for Future Generations) Bill 2026* (*hereafter called ‘the Bill’)

Thank you for the opportunity to respond to this Bill on behalf of myself and my son who cannot speak adequately for himself. I know he is keen to be heard: he took 20 minutes to spell out, “know me so my say” on his cardboard communication board.

Two weeks was not enough time to consider and respond to this Bill and we are grateful for the short extension for accepting submissions.

Contents

1. Comment P.1
2. The real costs of NDIS cuts P.3
3. Our Lived Experience P.3
4. Some Specific Concerns about this Bill P.5
5. Recommendations P.8
6. Final Statement P.8
7. Comment I oppose the passing of this Bill and ask that it be rejected in entirety.

I cannot convey the absolute horror and sense of dread I feel. The NDIS needs reform and is a work in progress but this Bill is a declaration of war against the disabled community. My son is one of the “permanently and profoundly disabled” people the government now says the scheme was meant to serve. His life would be up-ended and he would be at great risk of death without his current level of supervision and he would have no quality of life without his very limited community participation. Yet provisions in this Bill are geared to defining away his disability and denying him support.

The proposed changes are cruelly aimed at: Minimising the number of people supported, minimising support to each participant and minimising support provided by the scheme overall. Taking the humans out of human services, with assessment by an un-verified generalised tool analysed by a Robodebt style algorithm that will be programmed to spit out inadequate funding. Administrative convenience and standardised management of plans. Closing off opportunities for review contrary to fair dealing and human rights charters. Moving right away from person-centred supports and co-design. Concentrating power in the hands of the NDIS CEO and, more importantly, gives the Minister power to make “Determinations” without limits or scrutiny. Interfering with medical management and body autonomy and disregarding medical or allied health expertise.

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The Bill does not: Affirm the right of people with disability to enjoy the same human rights as others and share in the life of the community. Comply with the recent Eastham Federal Court ruling that a person’s disabilities should be considered holistically. Recognise people may not be able to fund their disability needs from personal incomes. Tackle rorting and criminal behaviour the right way. Recognise that regulation can never keep people safe: it takes people. Accept most people who enter the scheme will remain on it for life with growing need. Reflect the difficulties of assessment and diagnosis, the need for specialist knowledge or an understanding of scientific research. Give an honest accounting as there is no mechanism to account for costs to the taxpayer and broad community of not providing adequate disability support. Address the toxic culture, lack of proper training or poor decision-making within the NDIS.

The disability community has been sold a pig in a poke. We believed that the scheme would be run in a manner that supported the Principles and Objectives set out in the original Act. It beggars belief that disabled people are being abandoned and put in harm’s way. Our community’s recommendations are being distorted and basic rights are being denied. There is no fairness, no democracy, here. It is very un-Australian.

This Bill takes away choice and control and gives even more power to the NDIS. It shows contempt and disregard for those with disability and the millions of us who step up to care for them.

There is one thing almost everyone agrees on: the NDIS is broken and not working as intended. This Bill is a second attempt to put lipstick on the pig and will make the scheme even less fit for purpose. It is a a triple turnpike backflip and a total cop-out.

The NDIS Act, 2013, was already written to limit supports available and “protect the scheme” from participants. Lack of respect and good guidance for them along with registration of providers lacking business acumen, greedy individuals and criminal behaviour have brought us here. The NDIS did not notice the fraud and rorts because the focus became trying to stop participants actually starting to enjoy the things “normal” community members do. We are not all demanding gold-plated wheelchairs. Our people just want a fair go.

The federal government is now picking up its bat, ball and bucket of money and walking away, leaving it to the States. We will end up back with an underfunded, unnavigable, fragmented system with lots of small budget programs that collectively cost more to run and deliver even less service. That’s crazy when we are part way to doing better.

Dr. Nick Hartland, a recent appointee to Australia’s Disability Strategy Advisory Council,

was chosen to head the fledgling National Disability Insurance Agency before it even had a name. I heard him say that this world first reform would be difficult and would take

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about 25 years to get right. We are only half way along that timeline - the baby is only half born - but this Bill wraps the umbilical cord around its neck and kills it off.

On a personal level, this Bill will be a wrecking ball through our son’s support system that could take away his independence, see him forced to sack his long-term, reliable workers and reduce his freedom to do something as simple as taking a walk when he wants to. Although there have been repeated assurances plans were not being cut, his funding was cut by 4% in the last plan when there was no change in need. This Amendment will see deeper cuts justified by definitions and categories. He may even be forced to choose between having a radical brain operation or being denied support all together.

2. The real costs of NDIS cuts Actuaries are required to analyse and report on the costs and performance of the NDIS. The government has decided on these reforms as a result of those reports. The actuaries are not required to report on the costs of failing to provide support for disabled people. However, it is no secret that cuts to the NDIS will shift cost onto other government services including hospitals, police, prisons and the courts. Disabled people are already over-represented in a gaols because many are still not adequately supported.

Prior to the NDIS starting up, two unsupported teenagers with intellectual disability ended up in the justice system after lighting the 2009 Black Saturday Bendigo bushfire that caused the loss of one life, destroyed about 60 homes, hectares of forest, killed wildlife and almost reached the centre of the city. Our community was rocked by that disaster because we failed two young men who needed a sense of purpose, guidance and supervision. There was no NDIS then to provide what they needed.

The NDIS is not just a hand-out for the disabled. It is insurance for all of us that people with disability can be included, productive members of the community. It is the cheap option and we dismantle it at our peril.

3. Our Lived Experience The participant is a middle-aged man with complex needs. He needs to live alone and 24/7 supervision and support is essential for his safety. One of his medical conditions is degenerative and he will need more support eventually. His varied disabilities and health issues all interact to affect his health and capacity at any given time and he needs more support to enter and navigate the complex community environment. He is not trying to rip off the scheme. He just wants to live his life his way with dignity and a ray of happiness in his day.

As his nominees, my husband and I help him to “self-manage” and directly employ support workers. I have tertiary education, training, experience in running a business and over 60 years lived experience of disability.

For over 46 years, I have battled for support, understanding; inclusion, knowledge, dignity and respect for my son, myself and my whole family.

My son did not ask to be born with permanent and degenerative disability. He didn’t ask to be wracked by seizures day and night; afraid to go to sleep; overwhelmed with sensory overload; in frequent pain and constant panic. He definitely didn’t ask to have a risk of death 20 times that of a ’normal’ member of the community or wear the necklace of diagnoses strung together through his lifetime.

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He didn’t ask to be born into a world lacking expertise or understanding, be subjected to assessments that traumatised him, be constantly trying new medications or to suffer a string of clinicians listing his many deficits within his hearing. He never agreed to be a guinea pig testing out the latest theories and treatment programs that were his “best hope” or “best practice” or be told he was “too hard” and would not fit in, but he has made it plain in recent years he will not put up with any more of the same.

He has grown into a warm-natured, loving, resilient human being who makes the most of his simple life, hopes for the odd steam train ride, and tries hard to hold his shit together.

I never chose to live in a war zone: physically attacked by a child who could not express himself another way. I did not ask to be patronised; treated as if I was disabled; sleep deprived; denied the opportunity of a satisfying career; unable to earn an income; excluded from my community.

Life before the NDIS

Years ago there was very little support. Our son was often too old for a program and excluded just when he was ready to benefit from it. Schools and adult training centres excluded him and we had a six year battle to gain access to adult services. We stitched up small grants and accessed multiple funding buckets to access community activities.

For two decades my life was squeezed into around three hours of respite a fortnight that gave me the freedom to do the family shop, pay bills (in person in the pre-digital age) and attend my own medical appointments but little else.

I was barely surviving on an hour or two of broken sleep night after night, year after year. I juggled caring, running a family, brief stints of casual employment, partnership in a small business and disability advocacy. While my son attended primary school, I became an unpaid member of staff, volunteering up to 30 hours a week almost every week to be on hand to help and advise teachers.

Our family helped trial the innovative Support and Choice (S&P) program, precursor to the Victorian State Government Individual Support Package (ISP) program. Our S&P became an ISP that worked quite differently to the NDIS.

It was always about demonstrated need and not wants: about the bottom line. It was genuinely individual co-designed support. Many features of the program made it easy to live with and flexible. The program left clinicians and accreditation bodies to manage medical treatment. It was a privilege to be granted a package, to pass a trust test, to have freedom to decide what was best for us and our son and we didn’t abuse it.

With no accommodation options, We assisted our son to purchase and build his own home. He did it the normal way: saved a deposit, first home buyer grant, mortgage and help from the bank of Mum & Dad. He paid for many disability aids himself as part of the build. He chose everything even though we did some weird things to achieve that. He moved in on his thirtieth birthday and it was great to see him begin to flourish and enjoy his life.

Under the NDIS

The NDIS seems a lot like a dragon guarding its pile of treasure and I fear being burnt to a crisp whenever I approach it. A lot of our problems with the scheme stem from doing things differently. We are not easy to categorise and don’t fit in boxes. In an effort to help

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and protect, the NDIS has ignored “dignity of risk” and become a coercively controlling parent we cannot escape from.

We find the planning process draining. Our time is now taken up in meetings with providers, managing the employment of support workers and collating evidence. Plans commence before we are notified so we could be using a support without knowing it has been reduced or even removed altogether. That will be a big concern with the next plan as cuts are anticipated if this Bill is passed.

Plan reviews require months of preparation. Services cannot be magicked into existence. Sometimes we just cannot provide requested ‘evidence’. If providers don’t want a difficult client, they just say they have no capacity and it can be extremely hard to carry out assessments on a person with a history of trauma who does not give consent.

Several providers we have engaged have ceased to operate. Those that continue regularly change staff and we have to tell our life story all over again. It seems like thousands of people and organisations are busy respecting and protecting our privacy and leaving us with none at all.

The old the ISP provided supports we need that are not considered NDIS supports and appear on the “OUT” list. This can mean going without and languishing at home as it is very difficult to fund supports from a Disability Support Pension. The participant has already scaled back community access and is partly reliant on food banks.

It is really hard to have supports approved and we have been through several reviews. Changes in plan management were eventually overturned by an external review but during that time, I ended up in hospital. My health issue has not recurred since and no cause was found. It was put down to the stress I was under at that time.

At transition to the scheme, we were told we may not receive exactly the same services but were promised we would not be worse off. I understand that scaling up a system of individual support and widening eligibility brings difficulties. I also know many people had no support at all before the NDIS. They may well be better off and feel some support is better than none regardless of the hoops they are jumping through and support they still lack. However, the features that made the ISP so supportive and gave us all a better quality of life are missing from the NDIS. We feel worse off but I believe that with the right reforms, the NDIS can be fit for purpose, efficient and cost effective and life can be better.

4. Some Specific Concerns about this Bill Changes to eligibility criteria and definitions of permanent disability are aimed at removing people from the NDIS or stopping them from joining it. It has taken a long time to gain any agreement with the States on how Thriving Kids will work with nothing actually in place. There is no clear path forward for anyone else. Outside services are not ready or just don’t exist and you can’t magic them into existence on a particular date in the near future. What will happen to those left without supports?

I am extremely worried about the new definition of ‘permanent disability’. It will interfere with medical treatment decisions and be used to force high needs participants off the scheme. It is grossly unfair it kick a person off the scheme because they cannot afford or cannot get to an “appropriate treatment”. Although the new Section 25A(3) concedes a person may not be able to undertake a treatment for medical reasons and

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25A (4) allow a little flexibility, past experience suggests delegates will not make use of carve outs or create special provisions. I am also concerned yet again non-medically trained NDIS staff will be making decisions about medical matters. Additionally, people with complex disabilities may find a treatment that improves one condition they suffer from but it worsens another. How will these complexities be dealt with? This definition is problematic on many levels and should be dropped.

I am very worried about the changes that create categories of disability and about basing support on a primary disability alone. This is un-realistic. Many participants have multiple compounding disabilities. It also contradicts the Federal Court Eastham decision that a person and their disabilities need to be viewed holistically. The court has ruled. This Bill tries to thumb its nose at the court and go around the umpire. It should not be allowed to become to new law.

I am extremely worried about the ‘functional capacity’ definition and assessment. About six weeks of training to fill in a form is not comparable to a four year or more allied health or medical degree. The ICAN 6 tool modified version has not yet be scientifically validated and the notional that a person’s fate hangs an a standard non-specific test is frightening. Functional capacity fluctuates. It may also be that a person has good capacity overall in the test environment but has none or particular serious deficits in the real world. This definition and assessment process is problematic on many levels and should be dropped.

I am very concerned about taking the humans out of human services, with assessment by an un-verified generalised tool analysed by a Robodebt style algorithm that will be programmed to spit out inadequate funding. This will lead to serious harm to many. This assessment process is problematic on many levels and should be dropped.

Private providers will choose to tap the outer ‘foundational’ market. Providers are already going broke or leaving the scheme in significant numbers. They are not all bad actors. What will be left?

Participants don’t lightly ask for unplanned reviews. We are actually too afraid to ask for them for fear of losing support. We are afraid to seek clarification about supports because the response is always “No”, usually citing Sections 33 and 34. Internal and external reviews triggered by unresolved disputes are a necessary evil. The way to limit these is to address the reasons for the disputes arising. This provision is wrong and takes away rights. It should be removed.

This Bill has been created to allow reduced funding for every participant who remains on the scheme through ministerial determinations and allows for supports to be partially funded. There are many problems here:

• Power will be even more concentrated in the hands of the NDIS CEO and more importantly, the Minister will have power to make “Determinations” without limits, parliamentary scrutiny or other checks and balances. Even if we trust this minister (can we?), these powers could easily be abused by a future minister. There is no certainly the scheme will be secured for future generations if a future minister can determine to whittle it away or close it down.

• Participants using particular categories of supports can be targeted and affected more than others.

• Category cuts compounded by partial funding determinations could see funding budgets reduced to token amounts.

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• There is an unrealistic to expectation that participants and their families can make up the funding shortfalls to buy the necessary supports. A few wealthy families may be able to do that but most are struggling through a cost of living crisis and many rely on the disability support pension and live on the poverty line. People with disabilities often need to see particular specialist doctors and take particular non-PBS medicines. They may already have to cover medical gap fees and the cost of private scripts. People are already relying on food banks to make ends meet. What will happen to people who can’t afford necessary supports on top of normal living expenses? This provision is un-realistic and cruel. It should be dropped.

Paragraph 34(1)(aa) “arising directly from an impairment or impairments” is going to trigger many arguments and complaints. “Arising directly” is not clear cut. Nor is it fair. The person needs to be considered holistically (Federal Court Eastham decision). The change is wrong and should not be made.

Attacks on self management and standardisation of supports are about administrative convenience and funding the lowest common denominator. It will stifle innovation, increase risk to some participants and turn my son’s life upside down.

Closing off opportunities for review is contrary to fair dealing and human rights charters. People are relying on the NDIS. More definitions are being weaponised here. Decisions by algorithm are still decisions. I suspect prisoners in jails have more intact human rights than those imprisoned within the NDIS. People should be able to appeal and have avenues of redress.

Section 31 should not be removed. It explains in detail how person-centred principals should be at the heart of preparing NDIS plans. Section 17B to be inserted is not replacing like with like. It moves right away from person-centred supports and co design. and allows the definition of disability supports to be narrowed. The NDIS Act section 4 has been there since 2013. Having motherhood statements but then including provisions that work against them is wrong. Section 17B should not be inserted and section 31 should be retained.

I am concerned about the sidelining of clinicians. We are told clinicians have “sympathy bias” but the bias and pressure on delegates to deny supports is not being seen for what it is. It is spun as a positive “we have to protect the scheme”. Medical and allied health professionals are registered and bound by codes of conduct. They are bound to eliminate bias and be as objective as possible. They are the ones who should be making assessments when one is required. Provisions assigning assessment to clerks and computers is wrong and should be dropped.

Excluding people who have received other compensation is wrong. TAC, workers’ compensation and the like are limited. People may have ongoing problems and be left with no support. This provision is wrong and should be dropped.

This Bill seems to have been drafted to ensure many of the more expensive items such as home modifications are outside the scheme. Many do not have access to support from another program. This is wrong and should be dropped.

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5. Recommendations Support self-managers. The push to take away self-management and standardise administration as well as supports is insulting and short-sighted. A senior business unit delegate admitted to us that measures such as taking self-management away and forcing us to register as providers would increase costs to the scheme. Self-managers are often innovators and keep the costs of high needs participants to a minimum.

Deal with the bad actors. Regulators such as ASIC and the police should step up and sort out criminals.

Retain the current legislation while we go back to the drawing board to design an NDIS 2.0 that is actually does what it should. Address the faulty assumptions, the ideology that led to a commercial, profit taking and non-integrated “marketplace”, the commodification of people with disability or the conflicting imperatives in the original NDIS Act, 2013. It does not address the anti-competitive nature of having a defined marketplace some groups of business cannot access.

Lower the bar. NDIS delegates can agree a support is appropriate but still decline it because each and any support can already only be provided if it is on an “IN” list and if the delegate can tick every single box on their check sheets. Delegates have told me they have to consider every criterion and weight them equally. Every support must score 100% to be approved and 99.9% is a fail. The barriers are far too high right now and that has led to costly reviews. If you want to reduce legal costs and the number of lawyers employed by the NDIS, create fairer and more realistic provisions.

Stop fighting against co-design. Needs are not properly addressed and requirements are poorly understood when there are no open conversations and this is not the participant’s fault. This Bill does not promote open conversations and co-design. It does the opposite.

Uphold the Participant Charter. It was meant to help turn around a toxic culture but just having more polite conversations has not changed attitudes towards participants or the application of the Rules and Guidelines.

Redefine the meaning of “Guidelines”. Guidelines can be like post and chain fences that are demarkation lines with a bit of give. The NDIS definition and usage is more like a fixed uncrossable cyclone fence topped with barbed wire. That is why reviews and legal battles are so common and costly. Bring in some compassion and common sense.

6. Final Statement This Bill is about winding back and dismantling the NDIS. What does it say about our morals and common sense if this scheme is dismantled without proper support on the ground before we replace it?

The Minister’s intention to cut social, civic and community participation (SCCP) funding and capacity building daily activities demonstrates there is no longer a commitment to inclusiveness or a belief disabled people should have the same opportunities as others to be active in the community.

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The new plan structure will weaken support and does not provide better co-design. Other measures in the Bill will reduce flexibility, choice and control and concentrate power in the person of the CEO. Participants will be punished for others faults and removed from the scheme when they can’t respond as directed.

The Minister of the day will have the power to reduce the scheme to a token, supporting no one, and dismantle it almost completely without having to announce its closure.

Disability and needs won’t change because definitions do. Neglect, suffering and deaths will be the result. Kicking people off the scheme before substitute services exist is wrong and we will eventually end up wth a mish-mash of uncoordinated services that collectively cost more than the NDIS.

Our lived experience shows that there is a better way and that cooperation and mutual respect will bring about better personal and financial outcomes.

Please do not play politics with vulnerable people’s lives. They are members of our community who contribute as they can and give other lives purpose. Please don’t take away a helping hand. Reject this Bill.

Thank you for considering these submission.