Submission 2819
Submission to the Senate Community Affairs Legislation
Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for
Future Generations) Bill 2026
Submitted by:
Date: 1 June 2026
Table of Contents
Submission to the Senate Community Affairs Legislation Committee…………………………………….1
Introduction………………………………………………………………………………………………………………….2
Consultation and Co-Design…………………………………………………………………………………………..4
Recommendation ………………………………………………………………………………………………………4
Removal of “Reasonable and Necessary”…………………………………………………………………………5
Recommendation ………………………………………………………………………………………………………5
Ministerial Powers to Change Supports and Funding ………………………………………………………..6
Recommendation ………………………………………………………………………………………………………9
Mandatory Registration for Personal Care Supports………………………………………………………….9
Recommendation …………………………………………………………………………………………………….11
Automatic Plan Renewals and Funding Carryover ………………………………………………………….11
Recommendation …………………………………………………………………………………………………….12
Requirement to Try “All Appropriate Treatment”……………………………………………………………12
Recommendation …………………………………………………………………………………………………….13
Compatibility with the UN Convention on the Rights of Persons with Disabilities ……………..13
Recommendation …………………………………………………………………………………………………….13
Closing………………………………………………………………………………………………………………………13
Introduction
Thank you for the opportunity to make a submission to the Senate Standing Committee on Community Affairs about the National Disability Insurance Scheme Amendment (Securing the
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NDIS for Future Generations) Bill 2026. I want to express my concerns about the harmful consequences the Amendment Bill will cause if it passes Parliament.
I support and recognise the NDIS needs to be sustainable and have a long-term future so participants can access the supports they need to live a good quality of life. However, sustainability cannot come at the expense of the supports that make independent living possible, nor the choice, control, independence, and opportunities that the Scheme was created to provide.
This Bill feels like a step backwards. I cannot support the Bill in its current form.
Taken together, the proposed amendments represent a significant shift away from the original vision of the NDIS. They move decision-making further away from participants, reduce important safeguards and avenues for review, increase ministerial discretion, and risk replacing individualised support with standardised rules and funding limits. For people like myself with high physical support needs, the consequences are not theoretical. They affect where we live, who supports us, our ability to work, participate in our communities, maintain relationships, and exercise control over our own lives.
When the government introduces more restrictions, tighter definitions, and more control over what supports can be funded, it directly affects our ability to live ordinary lives.
One of my biggest concerns is the impact this Bill will have on choice and control, which were meant to be at the heart of the NDIS.
I have been a NDIS participant for 8 years, and it has transformed my life in the best way.
My degenerative genetic condition, Spinal Muscular Atrophy, means I have required a high level of physical support for my entire life. I need assistance with everything from getting out of bed and dressed in the morning, going to the bathroom, eating and drinking, showering and going out.
This was mostly provided by my parents, until 2005 when at the age of 32 we finally received some state government funding for support, after having been on a waiting list for 10 years.
Through that funding I received 2 hours of personal care on weekdays for showering, 4 hours a month of community access, some physio and travel funding. I was living with my ageing parents who were doing the majority of my support, and we often worried I would be put into a nursing home or group home if they were no longer able to support me. These were both inappropriate options that would also put me at high risk of harm, neglect and abuse. It was also something they have spent their entire lives making sure did not happen.
We had been told there could be no increase in my state government funding, unless I was put into a group home. Then the NDIS came along and changed everything.
And with it, something I had always dreamed of but thought impossible suddenly was a possibility. To live an ordinary life independently in my own home.
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With NDIS support, I am now living independently in accessible housing (SDA), supported by a wonderful team of both independent and agency support workers, most of whom have worked with me for between two and nine years. For the first time in my life, I have genuine choice and control over how I live. The NDIS has enabled me not only to gain employment, but to build a career. It allows me to make decisions about my day, including when and what I eat and drink, shower, go to the bathroom, leave the house, shop, participate in my community, and spend time with friends and family.
I do not think the importance of being able to live independently can be overstated. Living on my own has allowed me to grow into myself in ways that would never have been possible while living with my parents. That is a normal part of becoming an adult and something most people take for granted.
My parents gave me every opportunity they could, but there is a difference between being supported by family and having the supports needed to live independently. When family members are providing much of your support, you do not always ask for everything you need or want because you are conscious of the burden it may place on them.
Living independently has also allowed me to have a more typical adult relationship with my parents. Instead of our relationship being centred around my daily care needs, we are able to spend time together as family, with more of the normal parent–adult child relationship that most people experience.
One small but meaningful example is that I discovered I like tea. I need significant assistance to drink tea, and because it takes time to prepare and support me to drink it safely, it was not something I did when I lived with my parents. Once I moved into my own home with the support I needed, I discovered that I love having a cup of tea with breakfast.
That might seem like a small thing, but it represents something much bigger. Independence is not only about meeting basic needs. It is about having the freedom to discover your own preferences, develop routines, make choices, and live an ordinary life.
The NDIS has given me that opportunity. It has enabled me to live independently, build a career, participate in my community, and make decisions about my own life in the same way that most people do. It’s an opportunity I want everyone with a disability to have. That is why I am deeply concerned that the proposed amendments to the NDIS Act will have far-reaching and long-term consequences for people with disability.
Consultation and Co-Design
The consultation period for this Amendment Bill is extremely short, particularly given the length, complexity, and scale of the proposed changes. It also falls short of the Australian Government Guide to Policy Impact Analysis recommendation of a minimum 30-day consultation period. For many people with disability, meaningful participation in consultation
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processes requires additional time to access information, understand complex policy proposals, consider the likely impacts, and prepare a response.
As a person with disability, I have found it challenging to prepare this submission within the timeframe provided. Most of my weekdays are already filled with work, appointments, and the day-to-day tasks of managing my disability. This leaves limited time and energy to research and understand the extensive proposed amendments and their potential impacts. I also use dictation to write and AI to assist, which can be a slower process and often requires significant time editing and correcting errors. These are not unique circumstances; many disabled people face similar barriers when engaging in consultation processes.
More broadly, there appears to have been little to no genuine co-design or consultation with disability representative organisations or the disability community during the development of these amendments. The people who will be most affected by these changes have had very limited opportunity to shape them.
The NDIS was founded on the principle that disabled people should have a say in decisions that affect our lives. Significant reforms of this scale should be developed through genuine consultation and co-design with the disability community, not presented for comment after the key decisions have already been made.
Recommendation
The Bill should be withdrawn, and the Government consult earnestly with disabled people and their representative organisations about ways in which Scheme can be made financially sustainable without endangering participants essential supports.
If the Bill is not withdrawn, the Senate committee should extend the inquiry timeframe to allow meaningful and accessible consultation and evaluation.
Removal of “Reasonable and Necessary”
I am deeply concerned about the proposed removal of the principle of “reasonable and necessary” from section 31 (s 3(1)(d), s 17B). This principle has always been one of the foundations of the NDIS and was a key reason the Scheme was considered progressive and transformative. It recognised that disability support should be based on an individual’s needs, goals, and circumstances, rather than forcing everyone into a one-size-fits-all system.
Replacing “reasonable and necessary” with a requirement that supports be “consistent with the financial sustainability of the Scheme” represents a significant shift away from individual need and towards cost containment. While the sustainability of the NDIS is important, it should not come at the expense of participants receiving the supports they need to live ordinary lives with full choice and control.
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For me, the majority of my plan consists of 1:1 support for daily living, community participation, and travel. They are what enable me to live independently, participate in my community, and pursue my goals. What is reasonable and necessary for me will be different from what is reasonable and necessary for another participant, which is why flexibility and individualisation are so important.
By replacing “reasonable and necessary” with a focus on financial sustainability, it is likely to result in decisions being driven by cost rather than participant need, leading to reduced independence, participation, and quality of life.
If I am unable to access the supports I need because they are considered too costly, the result will not be greater independence or participation. Instead, it is likely to lead to poorer outcomes, reduced quality of life, increased reliance on family members and informal carers, being pushed into congregate care and greater social isolation. In some cases, it may even increase costs elsewhere in the system through greater use of health services, crisis supports, or more restrictive forms of care.
Recommendation
Retain “reasonable and necessary” as the basis for funding decisions and ensure participant needs remain at the centre of the NDIS.Financial sustainability should be included as one of several considerations the CEO must weigh alongside with choice and control, individualisation and participant-direction principles rather than an override that sits above the reasonable and necessary test.
Ministerial Powers to Change Supports and Funding
My concerns about the removal of “reasonable and necessary” are compounded by provisions in the Bill that would give Ministers the power to change who can access NDIS supports and effectively alter or reduce funding through legislative instruments, without the same level of parliamentary scrutiny or individual review rights (s 34A).
The Bill also enables the Minister to make determinations that set broad caps on supports, including (proposed subsections 33(2EA) and 33(2EB)):
a maximum amount of funding for particular supports;
a maximum frequency and/or duration for the provision of supports; and
maximum worker-to-participant ratios for specific supports or classes of supports.
Taken together, these changes move the Scheme away from individualised assessments of need and towards standardised funding limits that do not reflect a person’s actual support requirements.
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For example, rather than funding what is assessed as reasonable and necessary, supports could be capped across the Scheme. This means people would receive less support than they have been assessed as needing, regardless of their individual circumstances.
The current Minister, Mark Butler, has already announced a 50% reduction in social and community participation funding. This category of support is not a luxury, even though it may seem so to ministers and staff is trying to balance a budget but who have no experience of living with a disability. It is what enables disabled people to leave their homes, maintain relationships, participate in work, study, volunteering, sport, and community life, and avoid isolation. For many people with high support needs, it is the difference between being part of the community and being confined to their home.
I require a support worker to support me whenever I leave the house, whether that is seeing friends, spending time with family, attending work or events, shopping, or participating in sport. They assist me to safely get where I’m going and back home, eating and drinking, using my phone, and using the bathroom.
Reductions in this category would have a direct impact on my life. Instead of being able to go out weekly or fortnightly, I may only be able to leave my home once a month or less. It is not long since the COVID-19 pandemic, when lockdowns meant many people were unable to leave their homes or participate in their communities. At that time, there was widespread recognition of the serious impact isolation has on mental health, wellbeing, and quality of life. These reforms risk recreating similar conditions for disabled people through funding restrictions rather than public health measures.
Other examples of how these powers could operate include:
If assistive technology funding is only partially funded (e.g. 50%), I would be required to find the remaining cost for essential equipment such as a wheelchair costing approximately $47,500. Without a wheelchair, I cannot function safely or independently. If funding is reduced after approval but before payment, I could be left without essential equipment.
If daily living supports were capped (for example at $200,000), it could directly impact basic health and safety, including having to have a strict toileting schedule because I couldn’t go whenever I needed, reducing my liquid intake which isn’t healthy for my kidneys, and my ability to work. This would place my health at risk and could ultimately push me toward more restrictive or congregate living arrangements.
If worker-to-participant ratios were restricted so that 1:1 support was no longer funded, I would no longer be able to safely leave my home independently. This would significantly reduce my autonomy and increase reliance on more restrictive or congregate models of support, even where they do not reflect my preferences or rights. These models of support
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are often more expensive than 1:1, financially disadvantaged participants, and leave people vulnerable abuse, violence and neglect.
These changes would not be gradual. They could be introduced through determinations that take immediate effect, leaving me and other participants to rapidly adjust essential supports that underpin their daily lives.
I vividly recall during the second reading of the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill in August 2024, Senator Pauline Hanson questioned why some participants had plans exceeding $500,000. This type of framing risks implying that high support needs are inherently excessive, rather than recognising that some people require intensive supports to live safely and independently in the community.
If these amendments pass, the government and Minister of the day would have the power to cap or reduce supports at any time, increasing uncertainty for participants and making access to supports dependent on shifting political priorities.
The NDIS was not designed to minimise the cost of disability, but to recognise the value and dignity of disabled people by ensuring we have the supports needed to live ordinary lives.
What is often missing from these discussions is the broader value of the Scheme. Research has found that the NDIS generates an estimated $2.25 return to the economy for every dollar invested, through increased workforce participation, employment, economic activity, and reduced reliance on other services. When decisions are driven primarily by cost, there is a risk that both the value of disabled people’s lives and the wider economic benefits of the Scheme are overlooked.
A participant could have funding allocated for supports such as social and community participation, only for those supports to be later restricted or capped through a determination. This means that while a plan may show a certain amount of funding, the supports that funding can be used for may be reduced in practice. This leads to a lack of stability in funding when it can be changed at any time , and makes it impossible to plan your life. Participants could effectively receive less support than they have been assessed as needing.
I am also worried that these changes may not be clearly communicated to participants and that there are limited opportunities to challenge broad determinations that affect entire groups of participants. Participants should not have to monitor legislative instruments to understand whether the supports they rely on have changed.
Another issue is the Schedule 5 provision allowing the Minister to modify how the NDIS Act operates for up to 12 months through a “transitional” rule. While these powers are time-limited, they represent a significant reduction in parliamentary oversight and accountability. Decisions that affect disabled people’s rights, supports, and independence should be subject to proper scrutiny, debate, and consultation, not left to the discretion of a single Minister.
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Any significant changes to the NDIS should be co-designed and developed in genuine consultation with the disability community, particularly the people who will be directly affected by those decisions. Disabled people must have a meaningful voice in shaping policies that impact their lives, rather than being consulted only after decisions have already been made.
For people like myself with high physical support needs, reduced access to supports can have serious consequences, including reduced independence, increased reliance on family carers, and greater pressure towards shared or congregate living arrangements because they are often seen as cheaper alternatives. This risks reversing decades of progress towards community living and choice and control for disabled people.
While these are separate amendments, together they create a significant risk that participants will receive less support than they have been assessed as needing, with fewer protections, less transparency, and fewer meaningful opportunities to understand or challenge decisions that affect their daily lives.
Recommendation
Remove the proposed ministerial powers to alter participant eligibility, support categories, and funding arrangements through legislative instruments. Any changes affecting participant rights and supports should be subject to full parliamentary scrutiny, genuine consultation with the disability community, and appropriate review and accountability mechanisms. Protections for participants against reducing support below what is needed for safe and dignified living should be introduced.
Mandatory Registration for Personal Care Supports
The people who provide my personal care support assist me with some of the most private and important aspects of my daily life. I need to have confidence in the people supporting me and the ability to choose workers who are the right fit for me. I am concerned that mandatory registration could reduce my ability to make those choices and limit access to workers who know me well and support me effectively.
I strongly support effective safeguarding measures and the importance of ensuring that people with disability receive safe, high-quality supports, particularly in relation to personal care. However, safeguarding measures must also be workable in practice. Mandatory registration, as it is currently structured, is not a feasible requirement for many independent and sole support providers, particularly those working with only a small number of participants.
Most of my support workers are independent workers. They are highly experienced, qualified, and provide safe, high-quality support. I work with independent workers because registered agencies have consistently failed to meet my needs.
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Before being on the NDIS when I had 2 hours a day, 5 days a week support for personal care, I had to use two agencies just to have enough staff to cover those 5 shifts. I also ended up doing the agency’s work for them in that I would make sure all the fill in shifts were covered as even though my workers would provide 2 months’ notice of going on holidays, the agency wouldn’t even look at filling them until at least the week before when most staff already had their calendar planned or full. If I was not managing my roster, I would often be left without support, which it would fall on my parents to do.
Now being on NDIS I have to use an agency for the shared overnight shifts as part of my SDA agreement. It is not unusual for them to be unable to fill a shift which is when my independent workers step in, often at short notice, to make sure I have support. My parents are in their late 70s now so having them do any personal care is not an option.
Many independent workers have also previously worked for registered providers and chose to leave because they were frustrated by poor working conditions and did not feel adequately supported, valued, or protected by their employers. I fear many of them will not return to registered agencies and be lost to the industry entirely.
It is also important to recognise that registration alone does not guarantee quality or safety. The Disability Royal Commission heard extensive evidence of violence, abuse, neglect, and exploitation occurring within disability services, including provider organisations that were subject to regulatory oversight. The Royal Commission identified systemic failures by disability service providers to prevent harm and respond appropriately to complaints, highlighting problems in organisational cultures, systems, policies, and practices.
Many of the concerns raised through the Royal Commission were not simply about whether a provider was registered, but about failures of accountability, oversight, workforce conditions, and organisational culture. Some of the most serious cases of abuse and neglect examined occurred within formal disability service settings.
For this reason, safeguarding should not be reduced to a question of registration status alone. Effective safeguarding requires strong oversight, responsive complaints mechanisms, participant choice and control, quality workforce conditions, and the ability for participants to leave unsafe or unsuitable providers. Registration is only one part of that broader picture.
The people who support me assist with some of the most private and important aspects of my daily life, so trust, consistency, and compatibility are essential. It takes time to find and train workers who understand my needs and support me in a way that promotes my independence.
If mandatory registration results in independent workers leaving the sector, it will reduce choice and control over who provides intimate supports and may further shrink an already stretched disability workforce. I could lose trusted support workers and become increasingly reliant on larger registered providers, which do not always offer the same flexibility, continuity, or personalised support.
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For people like myself who rely on daily personal care, this is not simply an inconvenience. Losing trusted support workers can affect our ability to get out of bed, attend work or appointments, participate in our communities, and live independently. Any registration requirements should strengthen safeguarding without reducing participant choice and control or undermining the stable, one-to-one support relationships that many of us rely on every day.
The NDIS was built on the principle of choice and control. Any registration requirements should improve safety without reducing participants’ ability to choose who provides their support.
Recommendation
Review the proposed mandatory registration requirements for personal care supports to ensure they strengthen safeguarding without reducing participant choice and control or shrinking the disability support workforce. Any registration framework should be proportionate, accessible, and affordable for independent and sole support providers, and should be developed in consultation with people with disability and support workers. Participants should retain the ability to choose trusted support workers, particularly where those workers have established relationships and a demonstrated history of providing safe, high-quality support.
Automatic Plan Renewals and Funding Carryover
Another significant issue is the proposed automatic renewal of plans where funding and specific supports may not automatically carry over into a new plan period (s 50A).
While automatic renewals may reduce administrative burden for some participants, they may also create unintended consequences for people who have significant purchases or supports that span multiple plan periods. Participants often need to plan months in advance for major items such as assistive technology, home modifications, or other high-cost supports. Delays in assessment, quoting, ordering, manufacturing, and delivery are common and are often outside the participant’s control.
For example, I currently require a new wheelchair with an indicative cost of approximately $47,500. It is not uncommon for complex wheelchairs to take many months to be assessed, approved, built, delivered, and invoiced. If funding for that wheelchair is included in one plan period but payment does not fall due until after an automatic plan renewal, there is a risk that the funding may not carry across to the new plan. This could leave me unable to access equipment that has already been approved and ordered, creating significant uncertainty and financial risk.
For people with high physical support needs, assistive technology such as wheelchairs is not optional. My wheelchair is essential for mobility, independence, participation in the community, and daily life. Any process that creates uncertainty around funding for approved supports risks disrupting my ability to live safely and independently.
Participants should not be disadvantaged because of delays in procurement, delivery, invoicing, or administrative processes that are outside their control. Funding for approved supports and
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committed purchases should automatically carry over between plan periods until the support has been delivered and paid for.
Recommendation
Ensure that funding for approved supports, assistive technology, home modifications, and other committed purchases automatically carries over between plan periods where delivery, invoicing, or payment has not yet occurred. Participants should not lose access to approved supports due to administrative timing or delays outside their control.
Requirement to Try “All Appropriate Treatment”
I am alarmed by the proposed requirement included in the Amendment Bill that you must try “all appropriate treatment” first (s 25A).
As a person with disability, I should have the right to make informed decisions about my own body and healthcare. Currently it is proposed to only apply to people entering Scheme, there is no guarantee It would not be applied to people already on the scheme in the future.
Access to disability supports should not depend on whether I agree to undertake every treatment that someone else considers appropriate.
There is a risk that participants could be pressured into pursuing treatments, therapies, surgeries, or interventions that they do not want, that carry significant risks, or that offer little likelihood of improving their functional capacity.
It also disadvantages people who cannot afford it, end up on a long wait list before being able to have treatment or isn’t available where they live which disproportionately effects certain groups including First Nations, low income and people with intellectual disability.
Throughout my life I have undergone numerous medical interventions, therapies, and assessments. While some have been beneficial, none have removed my need for disability supports. In recent years drug treatments for my disability have become available, they are extremely costly to the government under the PBS and have mostly been tested on people under the age of 25. This is a treatment I have chosen not to have because the unknown effects it would have, and if it was beneficial would not change the support level I require.
My eligibility for the NDIS should be based on the reality of my support needs, not on whether there are additional treatments that someone believes I should try.
Recommendation
Remove the requirement that participants must have tried “all appropriate treatment” before accessing the NDIS. Eligibility should be based on a person’s functional impairment and support needs, not on whether they have exhausted every possible treatment option.
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Compatibility with the UN Convention on the Rights of Persons with
Disabilities
Several aspects of this Bill risk being inconsistent with Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities (CRPD), particularly Article 19, which recognises the right of disabled people to live independently and be included in the community, with the supports necessary to do so.
The CRPD is clear that disabled people have the right to make choices about our lives and to receive the supports we need to participate fully in the community on an equal basis with others. Changes that reduce the individualisation of funding, allow supports to be capped or restricted through ministerial determinations, or limit choice and control over how supports are provided may undermine these rights in practice.
Of particular concern is the risk that reduced or standardised supports could limit genuine access to community life and increase reliance on shared or congregate living arrangements. This is inconsistent with the intent of Article 19, which is to ensure disabled people are not forced into institutional or segregated settings due to a lack of appropriate supports.
Recommendation
Any reforms to the NDIS should strengthen Australia’s implementation of the CRPD by ensuring that disabled people have real choice, adequate supports, and the ability to live ordinary lives in the community with dignity and independence.
Closing
I feel incredibly fortunate to be supported by the NDIS and be able to live a wonderfully ordinary life, where I have full choice and control and quality of life. It enables me to get out of bed every day, work, go out, meet up with friends and enjoy life. And that is what I wish for everybody who needs the NDIS to experience, whatever form their dream ordinary life looks like for them.
The NDIS has allowed so many of us to thrive rather than to survive. We cannot allow people with disability to just survive again.
Rather than strengthening the NDIS, many of these changes risk taking us backwards. They move away from the core principles of reasonable and necessary, choice and control, independent living, individualised support, and community inclusion that made the NDIS progressive and world-leading.
Before the NDIS, disability support was often characterised by block-funded services, limited provider choice, long waiting lists, inflexible support arrangements, and decisions being made for disabled people rather than by them. Many people were forced to rely heavily on family
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members, fit their lives around service availability, or live in shared and congregate settings with little to no choice and control because there were few alternatives.
The NDIS was designed to move away from these models by placing funding and decision making power with participants and recognising that disabled people should have the same opportunities as everyone else to choose where they live, who supports them, and how they participate in society.
The NDIS was not revolutionary simply because it funded disability supports. It was revolutionary because it recognised disabled people as experts in our own lives and gave us choice, control, and individualised funding to determine how those supports were provided.
Many of the proposed amendments risk reintroducing elements of these older approaches through greater standardisation, funding caps, reduced flexibility, increased reliance on provider driven models, and fewer opportunities for participants to challenge decisions. The result may be a system that is more focused on managing costs than supporting people to live full and independent lives.
I urge the Committee to carefully consider the cumulative impact of these changes and to ensure that any reforms strengthen, rather than weaken, the rights, independence, and inclusion of people with disability. The NDIS was created to support disabled people to live ordinary lives and participate fully in the community. That vision is worth protecting.
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