Submission 3419 — Ms Ruth Carmyn — NDIS Future Generations Bill

Submission to the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Attention: Committee Secretary, Senate Standing Committee on Community Affairs

Submitted by email: community.affairs.sen@aph.gov.au Date: 1/6/26

To whom it may concern,

I welcome the opportunity to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am a person with disability, a friend to many people with disabilities (both physical and psychological) and was a teacher of students with disabilities for nearly 30 years. Due to financial reasons, I live in a borderline rural area, which faces persistent natural disasters, has limited public transport and is regularly isolated from the city by road and train closures, but I realise that I am far more connected than disabled people who live further West.

I have chosen to draw on my own and observed experiences of disability and write generally about the devastating impact of this bill, rather than give specific personal circumstances, in order to make my submission public. However, this does not mean that I will not personally affected – to the point where I am likely to become completely unable to contribute to my community, with volunteer or paid work – if this bill is passed. Not only will it render me invisible, but it is likely to destroy my capacity for effective self-care and prevent me from engaging with the social and interest groups which make the difference between “existing” and “living”. I do not believe that any of our elected politicians genuinely believe that disabled people are second class citizens who deserve merely to “exist”, but this is the reality we are facing if the changes to NDIS implemented in this Bill are passed.

1. This Bill requires intense scrutiny as it will cause significant harm to many of our most vulnerable citizens. Not only does it posit monumental changes to a major safety-net that enables disabled people to connect and contribute meaningfully to their communities, but it also appears to be a precursor to ending support for most disabled citizens.

That it was rushed through an insufficient (even with the extension) consultation period suggests a deliberate attempt to avoid transparency and public scrutiny. This is particularly concerning, given that it affects those with already limited capacities – I am well-educated and literate but I was unable to adequately address these points in the given time, and will spend months recovering from the effort of the past weeks. Parents, carers and support agencies were similarly prevented from submitting because even the “extended” deadline remains too short to allow them to engage with the documentation on top of already oversubscribed and short staffed services. More importantly, it did not allow time for carers of less educated or articulate NDIS clients to make them aware of the implications for their treatment, denying them opportunities to process and respond a Bill designed to deny them what agency they currently have. The short time frame feels extremely intentional!

2. The most pressing concern is that this bill leaves unqualified Ministers to make decisions about individuals with complete disregard to the very people it was meant to assist and the circumstances in which they live. By allowing Ministers unilateral powers to decide who receives NDIS support (Schedule 1 Parts 8 and 9) and how much funding (Schedule 1 Part 4; Schedule 3) they are entitled to - without consultation or even parliamentary debate - this Bill will render the entire NDIS system ineffective. It is especially concerning that the rules that will determine critical eligibility thresholds (Schedule 1 Parts 1, 8 and 9) have not even been written!

No disability is alike, and NDIS was designed with flexibility to allow consideration of every person’s unique circumstances. To allow one person to decisively shape every aspect of a disabled citizen’s life whether they qualify for the NDIS and what supports they can access - without parliamentary debate or public scrutiny suggests either disdain for the participants or a complete lack of understanding of how a disability can affect every aspect of a person’s life including:

• basic self care - such as cooking, eating and showering, or maintaining a home and/or garden clean enough to invite friends and family over;

• medical care – including access to correct diagnoses, specialists,medications and other treatment options

• accessing transport or physical and/or environmental adjustments - in order to maintain independence with regard to education, work, shopping or the pursuit of faith, sport and other interests;

• communication and/or behavioural assistance - including communication devices as well as psychological and psychiatric supports which facilitate social engagement and capacity-building.

These are the things that make us human, but if this Bill is passed, many new participants will be denied access, and existing participants may not even realise that supports or eligibility rules have changed until their plan is affected. All decisions affecting NDIS eligibility and funding levels MUST be made through primary legislation subject to full parliamentary scrutiny, with mandatory advance notice and consultation with affected participants before any changes take effect.

3. Disability Studies is a vast discipline in which specialists spend a lifetime learning just one small fragment. That a single Minister be allowed to arbitrarily reduce reduce funding cross all budget categories for any support or group of supports - by a specified percentage through an instrument that cannot be challenged (Schedule 1 Part 4) - is terrifying. The current system is not perfect, but it at least attempts to treat disabled people as individuals and to consult with specialists about their needs. In what other context would it be allowable to cut funding with no explanation – particularly funding that supports a vulnerable population’s access to assistive technologies, capacity building or community participation?

Furthermore, under this Bill, NDIS clients will not even have financial control of funds allocated to them. Unspent funds will no longer carry over at plan renewal (Schedule 1 Part 5), preventing the purchase of high cost items such as electric wheelchairs, vital air conditioning or, in some case, surgeries. At the very least, unspent funds (which, after all are earning interest for the NDIS) need to be carried over at plan renewal if clients are able to identify a target they are saving toward, and any loss of funding must be subject to independent review.

4. It is this deeply flawed understanding of disability which allows the Bill to replace whole-person assessment with a single eligible impairment consideration (Schedule 1 Part 3). Removal of the current recognition that environmental factors and other ineligible impairments can and do affect support needs (Schedule 1 Part 3) is a deliberate measure taken to facilitate the inclusion of rules which would require to exhaust treatment options before they can be eligible for the Scheme (Schedule 1 Part 8). The idea that disabled people will need to prove their impairment cannot be treated before they are able to access NDIS further supports further marginalises disabled clients and completely denies lived experiences of disability such as

• financial considerations when accessing treatment (most of which is NOT covered by medicare),

• geographical considerations such as rural or fringe locations (where, I repeat, the majority of disabled people live),

• family situations (both as part of a support network but also in terms of responsibilities – for instance disabled carers with limited financial means cannot easily leave their charges) and

• access issues such as availability of treatment, availability of transport to treatment (right now a very serious issue as many mobile clients are unable to afford petrol!) and extensive waiting lists, which can render diagnosis and treatment unavailable to individual clients.

• medical issues such as side-effects or co-morbidities which may render treatment/s useless. There is no one-size-fits-all solution when it comes to disability or any other heath condition. It is imperative that you do not proceed with a requirement to exhaust “appropriate treatment” options – there are no safeguarding measures around participant harm due to side effects or complications, a participant’s financial ability to pay, or their geographic capacity to access treatments.

5. While the Bill makes a (very misguided) attempt to give the Minister a degree of information about disabilities through a functional capacity assessment tool, the Instrument for Classification and Assessment of Support Needs (I-CAN) is completely unvalidated and risks misidentifying the needs of individual clients. Moving from a whole-person assessment to a single eligible impairment (Schedule 1 Part

3. will make it impossible for assessors to accurately capture the full extent of a person’s disability, including changing support systems and/or needs that fluctuate or vary over time.

To definite a disability outside the “environmental and personal circumstances” of a client’s experiences is ludicrous. This is paramount to defining the job of a politician as merely the moments they spend in session – ignoring the need for family support, travel expenses and vast amounts of time campaigning and consulting (hopefully!). To be disabled is to exist in a potentially changeable, geographically and socially defined network which accounts for the type and variety of accessible supports.

Local (family, community or regional) perceptions of specific disabilities make each experience of disability unique:

• needs may change according to family circumstances (including carer responsibilities, relationship breakups, job mobility, illness, burnout or death) or ability to participate in supportive friendship alliances (which may implode, or be facilitated by organisations that sudden lose funding or fold)

• socio-cultural contexts including race, religion and socio-economic status provide each client with potentially different needs

• a disability itself may fluctuate in severity for many reasons, both medical and environmental, particularly if there are co-morbidities;

• unexpected financial issues may impact access to equipment or medical services;
• geographical/environmental factors (such as moving to a more affordable region because the Disability pension is not a living wage!) may reduce access to services;

Any forward movement of this Bill MUST contain an understanding of disability within each client’s “personal and environmental circumstances”, for this is how a disability is lived. The very definitions contained in this Bill are flawed. Read together with the eligibility thresholds in Parts 8 and 9, the tool used to conduct functional capacity assessments must be capable of sufficiently identifying whether a person meets the threshold for that single impairment. Under the I-CAN, a participant may be found ineligible or have their supports undercounted, with no guarantee the result reflects their actual experience. I-CAN requires urgent validation to ensure it will sufficiently identify the needs of all people with disability, including those whose needs may be fluctuating or episodic and may not be captured through a point in-time assessment, and to ensure it is culturally appropriate for implementation with immigrant, First Nations and other minority clients.

6. With the narrowing of criteria and fewer rights to challenge decisions, existing clients will face restricted access to reassessment and review (Schedule 1 Parts 1 and 8). Combined with restrictions on reassessment requests (Part 2), automatic plan renewals without review rights (Part 5), and un-reviewable funding reductions (Part 4), existing participants face narrower criteria with significantly fewer avenues to challenge decisions about their supports. It is already difficult to access NDIS funding and stricter rules for reassessment will make it difficult and potentially impossible for clients to access additional support if their circumstances change or their disability deteriorates.

What happens to a disabled person when a parent or carer becomes unemployed? Or ill? Or burned out? Or dies? What happens if they move (as is the case with rising accomodation prices and the difficulty of accessing accomodation if disabled) to an area with less support? What happens if they have a modulating disability like Lupus, or a condition which is influenced by seasonal changes? If someone’s funding is reduced or their plan renewed automatically, they may have limited or no ability to challenge that decision. This will make it harder for people to obtain increased assistance when their circumstances or disability change. Any new legislation requires a “no harm” safeguard to ensure that current participant loses access to supports unless equivalent supports are in place. In addition they must have the right to an independent review rights and access to unscheduled reassessments must be preserved.

7. Schedule 1 Part 4 enables the Minister to unilaterally cut funding for social, civic and community participation supports by 50 per cent and capacity building daily activities by 10 per cent for all NDIS participants, from 1 October 2026, regardless of the fact that there is currently no system in place to replace this funding. Social, civic and community supports are often what help disabled people stay visible, connected and safe, and provide agency and independence. If supports that help participants connect with their community, build skills and maintain independence are be cut, there will be significant flow-on costs to communities and to tax payers. Carers/families will be left with greater responsibilities and no additional support, and disabled people without family and/or carers will be forced to struggle alone, potentially exacerbating their conditions or likely raising the already severe mental health crisis in Australia. Some disabled people (and possibly some burned-out carers) will also lose their independence to such an extent that they will become burdens on the state.

The Foundational Supports system intended to fill that gap has no confirmed implementation date and is not yet operational. Indeed, the extremely brief timeline for implementation renders an operational scheme impossible, as there is no time for consultation, development or testing. It is essential that no reductions to community participation or capacity building supports take effect until Foundational Supports are fully operational, adequately funded and demonstrably able to meet the needs of those who will be unable to access NDIS supports, regardless of changeable personal and environmental circumstances.

8. Finally, I would also like to remind you that the NDIS is a major employer of disabled adults both at administrative and service levels. It appears that this Bill is designed to cut costs associated with disability, by

• redefining the concept of disability to substantially reduce eligibility,
• denying participants agency over their own plans,
• ignoring the very reality of lived experience and
• passing the disability buck to other government bodies (most notably, housing and aged care organisations).

The decimation of jobs represented by changes to the NDIS will not save money because many of these adults cannot be employed elsewhere – they will simply be supported by Disability pensions, at the cost of independence, personal capacity-building and life as a full human being. Moving NDIS clients on to other organisations does not save money; it creates social chaos including “disability ghettos” and burnt-out family, friends and charity workers, which could potentially lead to very negative social consequences including an increase in mental health facilities or even crime, as people lose financial access to treatments.

In conclusion, this Bill seems to me to be an attempt to render the NDIS ineffective. We are already in a position where disabled citizens are passed onto other bodies (accomodation, age pension). If I were a conspiracy theorist, I would suspect that this Bill was deliberately designed to phase out the scheme entirely, but I do believe that this is merely the effect of insufficient research and consultation by politicians who do actually care about their constituents, but do not have lived experience of disabilities, particularly lived experience which is not framed within financial, educational and geographical privilege.

According to the Australian Bureau of Statistics (2024), approximately 5.5 million Australians (over twenty percent of our general population and at over half of our ageing population) live with a disability. We are not AI robots who can be erased and recoded at a whim; we are real people with real experiences, real skills and real interests who, in general, contribute real value to our communities, including in paid work and formal and informal volunteer capacities. Denying us independence and agency by cutting funds and shifting us to other government agencies or charity organisations would be both expensive in the long term (since they still require funding) and ineffective. For instance, elderly disabled clients’ needs cannot be and are not met by simpler aged care options. Nor are charity organisations or volunteer communities generally equipped with specialist staff. In any case, such organisations are often faith-based, exposing our most vulnerable populations to belief systems that may be outside their own culture or convictions. While we often exist at the margins of society, we are not an insignificant proportion of your constituents – and we do vote!

While there may be an argument for rescheduling the cost of certain services in cases where the charge to the NDIS is greater than that to the general public or insurance companies, or means testing recipients from high tax brackets (provided they have access to review if circumstances change), under no circumstances should any part of this Bill be passed as it would be the first step in decommissioning the NDIS, an essential organisation that is currently, on the whole, effective.

Instead, adequate funding for extensive consultation with all stakeholders (especially disabled people and carers/support workers) should be undertaken, in which the cost of NDIS is considered against benefits (and savings!) to both individual clients and society as a whole. To separate the costs of a support organisation from the benefit, as was done in the writing of this Bill, is both irresponsible and short sighted. It is a false economy to enact cost-cutting procedures in one sphere only to escalate costs in another, particularly when the flow-on costs for both individuals and the society in which they reside have not been considered.

Thank you for taking the time to read this submission. I hope that it has encouraged you to take a supportive stance on this issue which affects more than a fifth of the Australian population.