Inquiry into Proposed Changes to the NDIS (Participant experience)

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

Submission Regarding Proposed Changes to the NDIS

Publication Request

I am happy for this submission to be published publicly; however, I request that my name and identifying details be withheld or redacted where appropriate. I am comfortable for the broader themes, lived experience perspectives, examples, and policy concerns raised within this submission to remain publicly available.

To whom it may concern,

I am writing this submission as both an NDIS participant and the parent of a young NDIS participant.

I support efforts to ensure the NDIS remains sustainable into the future. However, I am concerned that many of the proposed reforms focus heavily on reducing participant expenditure and increasing regulation, while insufficiently addressing provider profiteering, administrative inefficiency, poor planning processes, inadequate oversight, and the long-term costs created by under-supporting people in the first place.

I have experienced the NDIS from multiple perspectives, including planning meetings, change of circumstances requests, support coordination, allied health funding, early childhood intervention, parent-related supports, reviews, complaints, and tribunal proceedings. Through these experiences I have become increasingly concerned that the current direction of reform risks creating greater long- term costs while simultaneously reducing participant independence, increasing distress, and making the system harder to navigate for the people who rely on it most.

The system is targeting the wrong area for savings

One of my biggest concerns is that many of the proposed reforms appear focused on reducing participant expenditure and increasing regulation while insufficiently addressing other areas of waste, inefficiency, and cost within the system.

Throughout my experience as both an NDIS participant and the parent of a young NDIS participant, I have repeatedly observed situations where significant resources have been spent on reviews, complaints, reports, legal processes, administration, and duplicated assessments while participants have simultaneously struggled to access the supports they genuinely need.

In my view, many of the current reform proposals appear focused on reducing the amount spent directly on participants rather than examining broader structural issues within the system.

These include:

• provider charging practices and profit margins;

• poor transparency around fees, planning processes, and decision-making;

• increasing administrative burden on participants;

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

• planning decisions that may not adequately reflect individual circumstances;

• growing reliance on reviews, appeals, and tribunal processes;

• insufficient oversight of service quality and billing practices;

• barriers to accessing support workers and specialised supports; and

• funding decisions that may increase long-term costs by reducing independence and early intervention opportunities.

Cutting participant plans can create false savings, administrative burden, and unnecessary reviews.

If people are underfunded, the system then spends more money on reviews, complaints, reports, change-of-circumstances requests, legal processes, tribunal preparation, crisis management, and duplicated assessments. The system creates unnecessary costs by underestimating needs at the beginning and then forcing participants into lengthy evidence-gathering and review processes to obtain appropriate supports later.

Many participants experience planning meetings as though funding parameters have largely been determined before meaningful discussion of their individual circumstances and evidence has occurred.

Plans can feel predetermined, funding ranges appear pre-set, and planning meetings do not always feel like a genuine assessment of a participant’s actual functional needs.

Recent reporting has suggested that approximately 73% of NDIS decisions reviewed by the Administrative Review Tribunal were overturned in a reporting period. Although, this figure may not fully capture the number of matters that are resolved through revised offers, negotiated settlements, consent outcomes, or other changes made before a tribunal hearing is ultimately required.

While this does not necessarily mean every original decision was incorrect, it does raise legitimate questions about the consistency, quality, and appropriateness of initial planning and review decisions.

In my own case, I spent approximately the first year of my funding obtaining an Assessment of Capacity and supporting evidence in order to request the supports I genuinely required. During that time, much of the funding that could have been used to build capacity, improve independence, or achieve goals was instead spent documenting why those supports were needed.

After obtaining the required evidence, I submitted a change of circumstances request. Rather than receiving the additional supports that had been recommended, my funding was significantly reduced. This resulted in months of complaints, reviews, preparation for tribunal proceedings, additional reports, significant stress, and an enormous administrative burden before a more appropriate outcome was eventually reached.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

Public reporting has indicated that NDIA legal expenditure has increased dramatically in recent years, with spending reportedly rising from around $10 million in 2019 to approximately $75 million in 2025. However, this figure represents only one component of the costs associated with reviews, appeals, and disputes. It does not account for the funding participants spend on allied health assessments, support coordination, disability advocacy, legal assistance, mental health support, and other services required to gather evidence, prepare for reviews, pursue appeals, or manage the impacts of being underfunded. Nor does it account for the additional administrative workload carried by NDIA and NDIS staff through reviews, reassessments, complaints, internal decision reviews, and tribunal-related processes.

This raises an important question: are we genuinely saving money by underfunding participants initially, only to spend significant amounts of public money on reviews, legal processes, appeals, tribunal matters, duplicated assessments, advocacy, and administrative responses later?

The financial cost of these processes is concerning. However, I believe the human cost is even more significant.

Participants should be spending their time building independence, engaging with therapies, developing skills, participating in their communities, supporting their families, maintaining employment, and working towards their goals.

Instead, many participants are spending enormous amounts of time and energy obtaining reports, gathering evidence, completing paperwork, responding to requests for information, seeking advocacy support, preparing for reviews, and challenging decisions that may ultimately be changed after further scrutiny.

For some participants, navigating the NDIS can become a full-time job. The current system risks rewarding those who are best able to navigate bureaucracy while disadvantaging those who are most vulnerable.

Every hour spent gathering reports, preparing evidence, responding to requests, seeking advocacy, or pursuing reviews is an hour not spent working towards goals, participating in the community, engaging in therapy, supporting family, maintaining employment, or building independence.

For participants already living with disability, the additional burden created by repeated reviews and appeals can significantly reduce functional capacity and increase stress.

While some participants may be better equipped to navigate complex systems and advocate for themselves, many are not. Even participants without intellectual disability can find the NDIS system overwhelming and difficult to navigate. Those who are least able to self-advocate are often the people most at risk of missing out on supports simply because they do not have the capacity to continually fight the system.

I am also concerned that many proposed reforms focus on reducing immediate expenditure without adequately considering the future costs they may create.

When people are under-supported, they often experience declining functional capacity, reduced independence, worsening health outcomes, increased reliance on informal carers, and greater need

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

for crisis intervention. Addressing these issues later is frequently far more expensive than providing appropriate supports in the first place.

The proposed system also poses a significant risk of requiring larger amounts of funding in the future to address or repair problems created by under-supporting people today.

A truly sustainable NDIS should consider not only what is being spent today, but also what costs may be created tomorrow when participants are prevented from accessing the supports they need to maintain or improve their functioning.

Investing in better-informed and more individualised planning processes at the outset may reduce long-term administrative costs, review requests, tribunal matters, duplicated assessments, participant distress, and future support needs.

A sustainable NDIS should not require participants to repeatedly prove, justify, and defend their disability in order to access supports that are ultimately found to be reasonable and necessary.

Provider profiteering and misuse of funding

One of my major concerns is the amount of participant funding being absorbed by provider margins rather than direct supports.

At the same time that participant supports are being scrutinised and reduced, there appears to be comparatively little scrutiny of where participant funding is ultimately going once it enters the provider system.

Some providers are charging participants the full NDIS support worker rate of more than $70 per hour while only paying the actual support worker approximately $30-$40 per hour. While I completely understand that providers have legitimate business expenses such as administration, insurance, rostering, compliance requirements, and overhead costs, I struggle to see how such large margins are justified in many cases.

The proportion of funding retained by some providers and platforms appears disproportionate to the direct support being delivered to participants.

In some cases, the provider or platform may ultimately earn more per hour than the worker actually delivering the support.

I have also personally experienced a provider charging significantly more funding than I reasonably understood was being consumed by the support being delivered.

I consider myself reasonably well educated, capable, and able to navigate complex systems. Despite this, I still believe I was manipulated and taken advantage of through unclear pricing structures and a lack of transparency around provider charging.

The provider later argued that I had agreed to the arrangement. However, I would never have knowingly agreed to those charges had they been clearly and transparently explained beforehand.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

This concerns me greatly because if somebody like myself could still struggle to identify and fully understand the true financial implications of these arrangements, I question how many other participants may be experiencing similar situations without even realising it.

Many participants are expected to navigate highly complex service agreements, billing structures, travel charges, platform fees, and NDIS pricing systems while already managing disability-related challenges, stress, executive functioning demands, or vulnerability.

True informed consent cannot exist if participants do not genuinely understand the financial implications of what they are agreeing to.

I fully acknowledge that providers need to remain financially viable and should be able to make a reasonable profit. However, if the Government is genuinely concerned about the sustainability of the NDIS, it should carefully examine where participant funding is being absorbed throughout the system before reducing the supports available to people with disability.

Greater transparency around provider margins, platform fees, intermediary costs, and the proportion of funding reaching direct participant supports would help ensure future reforms are informed by evidence rather than assumptions.

In my view, addressing inefficiencies, excessive margins, poor transparency, and inappropriate billing practices may offer greater opportunities for savings than simply reducing the supports available to participants who rely on them.

Support coordinators are essential safeguards

I am extremely concerned about proposals to reduce or remove support coordination.

In my experience, support coordinators are one of the most effective safeguards participants have within the NDIS. They do far more than simply coordinate services. They help participants understand complex systems, manage budgets, identify inappropriate charging, advocate for reviews, navigate complaints, and ensure supports are actually meeting a participant’s needs.

Support coordinators reduce waste and protect participants from financial exploitation.

The person who understands how my supports operate in practice is my support coordinator. They understand what services I receive, what supports I need, how my budget is being used, and whether providers are charging appropriately.

Plan managers generally process invoices. Support coordinators are often the people identifying when something does not look right.

For example, support coordinators I know have identified:

• participants being charged travel incorrectly;

• providers charging additional hours that were not worked;

• excessive allied health travel costs that participants were not properly informed about;

• duplicated charging;

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

• and budgets that appeared adequate on paper but were not actually workable once NDIS pricing arrangements, reporting requirements, assessment costs, and future evidence requirements were taken into account.

One example involved a participant being charged both support worker hours and additional travel time during the same support shift, resulting in the participant effectively paying twice for part of the same activity. Another involved a participant being charged substantial travel costs because an allied health provider was going to fly a clinician into a regional area, despite the participant not being properly informed that these costs would be charged against their funding. Luckily the support coordinator questioned the large travel change and the service cancelled beforehand.

These are exactly the types of issues support coordinators regularly identify and resolve.

Support coordinators also provide an important layer of oversight regarding the quality of supports participants receive.

Through both my lived experience and my work, I have seen situations where support workers attend appointments, activities, or shifts but provide very little meaningful support. In some cases, participants are no better off having the support worker present than if they had attended alone.

Many participants do not know what they should reasonably expect from a support worker. They may not realise when a support is not meeting its intended purpose, when goals are not being worked towards, or when a provider is not delivering an appropriate standard of service.

Support coordinators are often the people having those conversations with participants. They help participants understand whether supports are actually meeting their needs, whether goals are being progressed, and whether a different provider or worker may be more suitable.

Without support coordinators, many participants would have no practical mechanism for identifying poor-quality services, addressing concerns, changing providers, or understanding what they should reasonably expect from funded supports.

Support coordinators also help participants understand what funding actually means in practice.

During my child’s planning process, funding amounts initially sounded reasonable. However, it was my support coordinator who pointed out that once hourly rates, report-writing requirements, assessments, reviews, and planning for future evidence were taken into account, the proposed funding would only result in a very limited number of therapy sessions across the year.

Without that knowledge, I may have accepted a budget that sounded adequate but would not have realistically met my child’s needs.

While some participants may be better equipped to navigate the complexity of the NDIS system, advocate for themselves, gather evidence, challenge decisions, and pursue reviews or appeals, many participants are not in that position.

Even participants without intellectual disability can find the NDIS system extremely complex, overwhelming, and difficult to navigate.

The increasing administrative burden, documentation requirements, and reduction in support coordination risks leaving many vulnerable participants without the supports they genuinely need

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

simply because they do not have the capacity, confidence, knowledge, communication skills, executive functioning, or support network required to continually fight the system.

Removing support coordination may create larger long-term financial losses through unchecked billing errors, inappropriate spending, participant confusion, poor-quality services, crisis escalation, and loss of oversight.

If the goal of reform is to reduce waste and improve accountability, support coordinators should be viewed as part of the solution, not part of the problem.

Rather than reducing support coordination, I believe there is a strong argument for strengthening and better utilising support coordinators as a safeguard against participant exploitation, billing errors, poor-quality services, system complexity, and unnecessary expenditure.

Transparency, communication, and procedural fairness

I am deeply concerned about the lack of transparency in how planning, reassessment, and review discussions are conducted.

In my own experience, I received what was described as a simple “check in” phone call from the NDIA.

At no point was it made clear to me that the conversation would be used as part of a reassessment process that could significantly impact my funding.

As an autistic person, I took the conversation at face value.

If somebody tells me they are simply checking in, I generally assume that is exactly what they are doing.

I did not understand that I was effectively participating in a planning or reassessment discussion.

I also did not feel comfortable suddenly disclosing highly personal information about my daily struggles, vulnerabilities, executive functioning difficulties, and support needs to a stranger over the phone for no clearly explained reason.

As a result, I answered questions in a general and surface-level way rather than providing the detailed information I would have provided had I understood the true purpose and significance of the conversation.

I later discovered that this discussion had contributed to a process that resulted in my funding being reduced by more than half.

Participants cannot provide accurate information if they are not properly informed about why information is being requested, what process they are participating in, how the information may be used, and what potential consequences may result from the discussion.

I believe this issue is particularly significant for autistic participants and others who may answer questions literally, mask difficulties, minimise struggles, or not realise what information is actually being sought unless it is communicated clearly and directly.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

I experienced similar issues during my child’s planning meeting with questions such as “What does a typical day look like?” initially appeared to be simple conversational questions. It was only when my support coordinator clarified that the NDIA was actually trying to understand the disability-related challenges within those routines that I realised what information was really being requested. Without that clarification, I may never have understood what information was actually being sought.

Procedural fairness requires transparency. Participants should be clearly informed when they are participating in a planning discussion, when information may affect funding decisions, what evidence is being considered, what information is being sought, and how decisions will be made. Many participants are already navigating disability, stress, trauma, executive functioning difficulties, communication differences, and complex life circumstances.

The system should be designed to improve understanding, not rely on participants correctly interpreting vague or ambiguous questions.

Planner expertise and the risks of automation

I am extremely concerned about increasing automation within the NDIS without strong qualified human oversight. While AI and automated systems may be useful for summarising information or assisting with administrative tasks, decisions that affect disabled people’s lives should still be reviewed by appropriately qualified humans with genuine disability-informed knowledge and an understanding of the participant’s individual circumstances.

Many of the concerns participants currently have about the NDIS are not caused by a lack of information. They are caused by poor interpretation of information, lack of disability-specific understanding, rigid decision-making, and a failure to properly consider context. Increasing automation risks making these problems worse rather than better.

I have personally experienced planning conversations that left me concerned about the level of disability and developmental understanding held by some of the people involved in decision-making. During discussions about my child’s developmental delays and gross motor concerns, The person conducting our plan meeting asked if my child was chubby. When I explained that my child’s weight was in proportion to her height, the planner then directly told that “sometimes chubbier children have more trouble with their balance and gross motor skills” and then denied any supports or funding to assist my child in this area.

This was deeply concerning because it suggested assumptions were being made rather than the evidence and professional concerns actually being considered.

At the time, I was also discussing concerns that had already been identified by allied health professionals. Rather than feeling that those concerns were being carefully considered, I left the conversation feeling that assumptions were being made without an appropriate understanding of child development, disability, or developmental assessment and professional recommendations appeared to be dismissed without adequate justification. For example, I requested support related to sign language and key word signs for my child due to significant communication concerns. I was informed that this type of support would only be funded for deaf children.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

This response appeared inconsistent with the principle that NDIS plans are intended to be individualised and based on functional needs rather than diagnosis categories. My child’s communication difficulties still exist regardless of whether the underlying diagnosis is hearing-related or neurodevelopmental. Communication supports should be based on actual functional communication needs, evidence-based recommendations, and long-term outcomes rather than assumptions about what may happen in the future.

These experiences have raised concerns for me about whether the people making planning decisions always have the knowledge, training, and expertise necessary to properly interpret the evidence in front of them.

Moving to more automated systems threatens to make these issues even worse. Many disability support decisions require consideration of communication differences, sensory needs, executive functioning, developmental trajectories, family circumstances, behavioural presentations, environmental factors, and individual goals. These are nuanced issues that often cannot be accurately understood through rigid categories, algorithms, automated scoring systems, or scripted questioning alone. Australia has already seen the consequences of poorly supervised automated decision-making through the Robodebt scheme. While the NDIS is a different system, the lessons remain relevant. Automation can create efficiencies, but it can also magnify mistakes when there is insufficient human oversight, poor understanding of context, or inadequate opportunities for participants to explain their circumstances.

Disabled people are already among the most vulnerable members of our community. Many participants experience challenges with communication, executive functioning, literacy, cognition, organisation, mental health, or navigating complex government systems. Making it harder to access a qualified human decision-maker risks leaving participants without meaningful opportunities to explain their circumstances or correct misunderstandings before decisions are made.

If automation is used within the NDIS, it should be used to support decision-making rather than replace it. A qualified human being with appropriate disability-informed knowledge should remain responsible for reviewing evidence, understanding context, exercising judgement, and making final decisions that affect a participant’s life, supports, independence, and wellbeing.

Support worker registration and unintended consequences

I understand the intention behind requiring support workers to become registered. Participant safety, accountability, and quality assurance are important goals. However, I do not support mandatory registration of all support workers. I am concerned that mandatory registration risks reducing participant choice, reducing workforce flexibility, increasing costs, increasing reliance on large agencies, and making supports harder to access without necessarily addressing the issues it is intended to solve.

Public reporting indicates that the NDIS workforce currently relies heavily on unregistered providers and independent workers. Any significant changes to registration requirements therefore have the potential to substantially reshape the workforce and may have unintended consequences for participant access to support.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

Participants are sometimes able to identify suitable support workers through community networks, cultural networks, lived-experience communities, universities, regional communities, or specialised interest groups. These pathways can be particularly important where participants require workers with:

• specific language skills;

• cultural understanding;

• lived experience;

• specialised knowledge;

• or particular personal attributes that allow a support relationship to be successful.

Not every participant requires a highly specialised agency worker. Sometimes a participant simply needs a suitable person who can assist them to access the community, attend appointments, build confidence, participate in activities, or develop independence. For some participants, particularly those in regional and rural areas, finding any suitable worker can already be difficult. Introducing additional costs, administrative barriers, lengthy approval processes, or expensive registration requirements may further reduce the available workforce.

I am particularly concerned about the impact on independent support workers. Many independent workers choose to work outside large agencies because it allows greater flexibility, lower costs, more participant choice, and stronger relationships with the people they support. If registration becomes expensive, complex, or time-consuming, it may unintentionally push more workers toward large agencies and provider organisations. This could reduce competition, reduce participant choice, increase costs, and further concentrate funding within larger organisations rather than directing funding toward frontline support.

Participants may also lose access to workers with specialised skills or backgrounds that are difficult to source through traditional providers. For example, participants may require workers who speak a particular language, understand a specific cultural community, have lived experience relevant to the participant, or possess specialised knowledge relating to a particular disability or medical condition. These workers may not necessarily be employed through large providers but may instead be identified through community networks and then trained in the practical support tasks required.

Overly restrictive registration requirements risk making these arrangements more difficult and reducing access to supports that are often highly individualised and effective.

I am also concerned about the impact on flexibility. Disability does not operate according to business hours, staffing rosters, or administrative processes. If a participant’s regular support worker becomes unavailable due to illness, leave, family emergency, or resignation, it is often possible to identify another suitable person to step in and provide support while longer-term arrangements are made.

Mandatory registration risks making these practical arrangements significantly more difficult. The ability to source one-off, temporary, replacement, casual, or short-term support workers can be extremely important for maintaining continuity of support and preventing participants from being

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

left without assistance. I am not convinced that registration will address many of the problems participants currently experience.

Poor-quality support, incorrect billing, lack of transparency, and participant dissatisfaction are not issues that occur only among independent workers. Many of these concerns already occur within registered provider settings. For example, I made a formal complaint regarding a provider that was charging for hours not worked. I received a brief phone call from the NDIA regarding the complaint and then heard nothing further. The provider had argued that I had approved the charges. However, the issue was not that I had knowingly agreed to them. The issue was that the charging structure had not been transparently explained. Even while discussing the arrangement with somebody who had significant experience navigating the NDIS, neither of us understood the true amount of participant funding that was being consumed. Had those charges been explained clearly, I would never have agreed to them. Years later, I became aware of concerns that similar issues may have continued to arise regarding the same provider and other participants.

This raises concerns about whether additional registration requirements alone will improve participant safety if complaints are not effectively investigated and acted upon. If the Government ultimately proceeds with mandatory registration despite these concerns, it is critical that any system is designed with extreme caution.

Registration processes should be simple, affordable, accessible, proportionate to risk, and designed to minimise barriers to workforce participation. Most importantly, registration should not come at the cost of participant choice, participant safety, workforce availability, regional access to supports, or the flexibility that many participants currently rely upon.

The current reform discussions appear heavily focused on increasing regulation, but not enough on whether those changes will actually improve participant outcomes. In my view, the risks of mandatory registration may ultimately outweigh the potential benefits.

Restrictive funding rules create false economies

I am increasingly concerned that the NDIS has become more restrictive in what it will fund, often in ways that appear intended to save money in the short term but may actually increase long-term costs. In many cases, relatively small supports that could improve independence, participation, and functional capacity are being denied, while much more expensive ongoing supports remain necessary as a result. For example, I once requested funding for a relatively inexpensive shower visor to help manage sensory difficulties associated with water on my face while showering. This was denied as an everyday item. The issue is not the shower visor itself. The issue is the broader principle that low-cost sensory accommodations that improve functioning and independence are increasingly excluded under narrow interpretations of what constitutes an everyday item.

Similarly, I am aware of examples where participants have been denied relatively inexpensive adaptive equipment that would allow them to complete tasks independently, while the NDIS remains

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

willing to fund ongoing support worker hours to perform those same tasks. In one example, a participant requested a blender that would allow them to independently prepare meals despite their disability. The blender was reportedly denied as an everyday item. However, the NDIS was prepared to fund support workers to attend and prepare meals for the participant instead.

A one-off purchase that increases independence may ultimately reduce support needs. Denying that item while funding ongoing support worker hours may create significantly higher long-term costs. I believe the NDIS should place greater emphasis on practical supports that increase independence and reduce future reliance on paid support wherever possible.

The same concern applies to sensory supports. For example, restrictions on noise-cancelling headphones are particularly difficult to understand. The explanation I have heard is that participants may become reliant on these supports if they find them helpful. However, many assistive technologies improve functioning precisely because they work. We would not argue that a wheelchair should be removed because somebody becomes reliant on it. We would recognise that the wheelchair allows the person to function more effectively. The same principle should apply to sensory supports. Without appropriate sensory supports, participants may avoid community environments, become overwhelmed more easily, experience reduced functional capacity, require additional support worker assistance, rely more heavily on home delivery services, or withdraw from activities that support participation and independence.

Reducing supports may not eliminate costs. In many cases it simply shifts costs into health systems, emergency systems, carers, families, state-funded services, and future NDIS expenditure. The proposed system also poses a significant risk of requiring larger amounts of funding in the future to address or repair problems created by under-supporting people today.

Communication supports and individualised planning

One issue that particularly concerns me is the increasingly rigid interpretation of what supports are considered appropriate and the growing tendency to assess supports based on diagnosis categories rather than individual functional needs.

The NDIS was established as a person-centred system built around individualised plans. Some funding decisions appear inconsistent with that principle. As mentioned previously, I requested support related to sign language and key word signs for my child due to significant communication concerns and was informed that this support would only be funded for deaf children. This appears inconsistent with the principle that supports should be based on individual need. My child’s communication difficulties still exist regardless of whether the underlying diagnosis is hearing- related, developmental, neurological, or otherwise. Restricting communication supports in this way appears contrary to the principle that NDIS plans should be tailored to the individual participant.

I am also concerned that this type of decision-making fails to consider long-term cost effectiveness. Sign language and key word signs provide lifelong communication skills that do not require batteries, charging, internet access, upgrades, repairs, subscriptions, or replacement every few years. These skills can be used across home, education, community, and social environments throughout a

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

person’s life. While communication devices and AAC technology can be incredibly valuable supports, communication should not be dependent solely on access to a device or screen.

This is particularly relevant for very young children. For a young child, learning communication skills that can be used naturally throughout everyday interactions may provide substantial long-term benefits while also reducing future reliance on more costly technological solutions. I was effectively told that a device-based approach could be funded while sign language could not. This is difficult to understand from both a developmental and cost-effectiveness perspective. It is also difficult to reconcile with broader recommendations regarding young children’s screen exposure and development.

Moving toward increasingly automated systems risks making these issues worse by reinforcing rigid categories rather than allowing genuine consideration of individual circumstances. Participants should be assessed on their actual functional needs, goals, strengths, barriers, and circumstances, not simply on whether they fit neatly within predetermined categories.

Impact on disabled parents and families

As both an NDIS participant and the parent of a young NDIS participant, I have experienced firsthand how decisions within the NDIS can affect not only the individual participant but also their family. When my own supports were significantly reduced, my child was always safe, fed, cared for, and protected. However, the stress, administrative burden, and loss of supports had a substantial impact on my own functional capacity. The months that followed were consumed by complaints, reviews, gathering evidence, preparing documentation, and trying to navigate a complex system while simultaneously managing my disability and caring for a young child.

While I ensured my child’s needs were met, I do not believe I was able to engage in parenting in the way I would have wanted during that period. Instead of spending my energy supporting my child’s development and creating positive family experiences, much of my capacity was consumed simply trying to maintain stability and fight for supports that had previously been recognised as necessary. For families with young children, these periods are particularly significant.

I am also concerned about situations where supports effectively fall into gaps between plans. At various times I was informed that certain supports could not be funded through my plan because they related to parenting responsibilities. However, similar supports were also not considered appropriate under my child’s plan because they were considered responsibilities that fell to me as the parent. This creates situations where genuine disability-related support needs can effectively fall between systems.

These issues are rarely simple and often require nuanced human judgement that considers the parent’s disability, the child’s disability, family circumstances, functional impact, and the purpose of the support being requested. Rigid funding rules and standardised decision-making frameworks do not always account for these complexities.

Greater transparency and accountability

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

I would strongly support greater transparency around how NDIS funding is distributed and spent. Public discussion often focuses on participant plans and participant spending. However, there appears to be far less visibility regarding how funding is distributed across other parts of the system. Greater public transparency around how NDIS funding is distributed across direct participant supports, provider payments, administration, legal processes, fraud responses, and review systems would help inform more evidence-based reform discussions.

I would welcome clearer public reporting regarding:

• how much funding goes directly to participant supports;

• how much is retained through provider margins and platform fees;

• how much is spent on administration;

• how much is spent on reviews and complaints;

• how much is spent on legal processes and tribunal matters;

• how much is spent on compliance and fraud investigations;

• and how much funding remains unspent due to workforce shortages, service shortages, and access barriers.

Recent reporting suggests that billions of dollars in participant funding remains unspent each year. This is important because it challenges the simplistic narrative that participants are simply over- utilising supports. In many cases, participants are unable to access the supports they have already been funded for due to workforce shortages, provider shortages, waiting lists, transport difficulties, regional barriers, and broader market failures.

Reducing participant budgets does not address these underlying issues. If participants are already unable to access the supports included in their plans, further reducing funding risks distracting attention from the real barriers preventing participants from receiving support.

Conclusion and recommendations

I support efforts to ensure the NDIS remains sustainable into the future. However, I do not believe increasingly restrictive, automated, and adversarial systems are the solution.

Throughout my experiences as both an NDIS participant and the parent of an NDIS participant, I have repeatedly seen situations where costs have been increased, participant wellbeing has been reduced, and significant distress has been created not because participants were receiving too much support, but because the system was not operating efficiently, transparently, or in a genuinely person-centred way.

Many of the proposed reforms appear heavily focused on reducing visible participant expenditure while insufficiently addressing provider profiteering, administrative inefficiency, poor planning processes, inadequate oversight, workforce issues, and the long-term costs created by under- supporting people in the first place.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

I am concerned that many of the proposed changes risk increasing participant distress, reducing independence, worsening functional capacity, increasing administrative burden, reducing participant choice, creating workforce shortages, increasing reliance on large providers, and ultimately creating greater long-term costs across the NDIS and broader community systems.

I believe reforms should focus on improving outcomes and reducing waste rather than simply reducing participant funding. In particular, I believe consideration should be given to:

• improving transparency regarding planning, reviews, reassessments, and decision-making processes;

• ensuring participants clearly understand when conversations may influence funding decisions;

• improving disability-informed training and expertise for planners and decision-makers;

• maintaining strong qualified human oversight of any automated systems or AI-assisted decision- making processes;

• preserving genuinely individualised planning based on functional needs rather than diagnosis categories;

• retaining and strengthening support coordination as a safeguard against participant exploitation, billing errors, poor-quality services, and system complexity;

• improving oversight of provider billing practices, platform fees, and excessive provider margins;

• ensuring registration requirements do not unintentionally reduce participant choice, workforce flexibility, independent workers, or regional access to supports;

• increasing transparency around how NDIS funding is distributed and spent across the broader system;

• investing in better planning decisions at the outset to reduce the need for reviews, complaints, tribunal matters, duplicated assessments, and legal expenditure;

• supporting practical, low-cost interventions that improve independence and reduce future support needs; and

• ensuring reforms are assessed not only on immediate financial savings but also on their long-term impacts on participants, families, communities, and future expenditure.

Most importantly, I believe the NDIS must continue to recognise that disabled people are individuals. Participants have different communication styles, support needs, family circumstances, goals, strengths, challenges, sensory profiles, cultural backgrounds, and lived experiences.

A sustainable NDIS should not be achieved by moving away from individualised support and towards increasingly rigid systems.

I respectfully ask that any reforms prioritise participant safety, independence, dignity, choice, transparency, and genuine individualisation while addressing the areas of inefficiency and waste that exist elsewhere within the system.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2361

Thank you for considering my submission and for the opportunity to provide feedback on these proposed changes.

Yours sincerely,

[Name withheld from publication]