Usher syndrome diagnosis and functional capacity assessment process (Participant experience)

Submission 549

Submission to the Senate Community Affairs Legislation Committee

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

2026 Submitter:

Capacity: Personal submission

Date: 1 June 2026

Introduction

Thank you for the opportunity to make a submission to the Senate Community Affairs Legislation Committee inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I make this submission in my personal capacity as a person with disability, a current NDIS participant, and someone with lived experience of Type 2A Usher syndrome, which involves both hearing and vision impairment. I am also involved in disability advocacy and student representation, but this submission is made as an individual and should not be read as representing any organisation.

I accept that the NDIS must be sustainable. A scheme that cannot be financially sustained will eventually fail the very people it was created to support. However, sustainability cannot be achieved by narrowing access, reducing supports, or shifting responsibility to state, territory, mainstream or community systems before those systems are clearly defined, funded, operational, accessible and accountable.

My central concern is that the Bill appears to rely on a disability support ecosystem outside the NDIS that does not yet exist in a reliable form. That creates a serious risk of people with disability being pushed out of, or partially out of, the NDIS and into service gaps.

This is not reform. It is cost shifting unless the alternative supports are real, available and enforceable.

Summary of recommendations

I recommend that the committee:

1. Delay or amend provisions that reduce access or supports until foundational, state, territory and mainstream supports are actually operating in practice.

2. Require clear Commonwealth, state and territory responsibility maps so people with disability can see which system is responsible for which support.

3. Prevent NDIS supports from being reduced or withdrawn unless an appropriate alternative support is available, accessible and enforceable.

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4. Require any functional capacity assessment process to account for interacting impairments, environmental barriers, communication barriers, transport barriers and fluctuating real-world support needs.

5. Protect people with complex, lifelong or interacting impairments from being pushed between systems that each claim another system is responsible.

6. Place strong limits, transparency requirements and review rights around any ministerial or administrative power to reduce funding for groups or categories of supports.

7. Require human review, transparency and appeal rights for any automated or semi-automated administrative decision-making.

8. Ensure social, civic and community participation supports are not treated as optional extras, especially for people whose disability affects transport, communication, orientation, safety and access to public life.

9. Require public reporting on service gaps, wait times, regional access, unmet need and outcomes during any transition from NDIS supports to foundational or mainstream supports.

10. The Bill should not assume that states and territories can simply “pick up” supports

One of my strongest concerns is the lack of clarity around what states and territories are meant to provide if the NDIS is narrowed.

It is not good enough to suggest that people can return to the supports that existed before the NDIS. In many cases, those supports were limited, inconsistent, crisis-driven, geographically uneven, or simply unavailable. For many people with disability, the “pre-NDIS system” was not a functioning support system. It was a patchwork.

The NDIS was created because that patchwork failed too many people.

The Bill appears to sit alongside a broader policy direction in which some supports may move away from individualised NDIS funding and toward foundational, mainstream, community, state or territory systems. That may be appropriate in some areas if properly designed. But it is dangerous if those systems are not yet built.

There is a real risk that governments will reduce NDIS supports first and build alternative supports later. That sequencing is backwards.

People with disability should not be used as a live trial population while governments negotiate responsibilities between themselves.

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The committee should recommend that no NDIS support be reduced or withdrawn on the assumption that another system will provide it unless that system is already available in practice.

2. Foundational supports cannot be treated as a substitute before they exist

Foundational supports may become an important part of the disability support ecosystem. I support the idea that people with disability should be able to access supports outside the NDIS, especially where those supports help with navigation, advocacy, inclusion, early intervention, equipment, home and community care, peer support, and mainstream service access.

However, foundational supports cannot be treated as a replacement for NDIS supports until they are fully designed, funded, delivered and independently monitored.

At present, there remains uncertainty about what many foundational supports will look like, who will be eligible, how they will be accessed, what standards will apply, and what happens if a person is refused support. The first phase of foundational supports appears to focus heavily on children. That does not answer the question of what happens to adults with permanent, complex or lifelong disability support needs.

This matters because the Bill includes changes that may affect access, planning, support categories, functional capacity and consideration of other service systems. If the NDIA is allowed to consider the theoretical availability of other systems, then there must be safeguards to ensure those systems are not merely theoretical.

A support that exists in a policy document is not the same as a support a person can actually use.

I recommend that the Bill be amended so that a decision-maker cannot reduce, refuse or redirect NDIS support because another system “should” provide it unless that support is:

• currently available;
• accessible to the person;
• appropriate to their disability-related need;
• available within a reasonable timeframe;
• subject to quality and safeguarding standards;
• subject to review or complaint rights; and
• not dependent on unpaid family or informal support filling the gap.

3. Complex and interacting impairments do not fit neat service categories

My own disability is Type 2A Usher syndrome. This involves both hearing and vision impairment. That combination is not simply “hearing impairment plus vision impairment”. The two impairments interact.

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For example, a person who is blind or vision impaired may rely heavily on hearing for orientation, communication and environmental awareness. A person who is deaf or hard of hearing may rely heavily on vision for communication, lip reading, Auslan, captions, environmental cues and safety. When both senses are impaired, the functional impact can be greater than either impairment considered separately.

This is why neat administrative categories can fail people with complex or interacting impairments.

Support needs may involve:

• assistive technology;
• communication access;
• orientation and mobility;
• transport;
• support to attend appointments or public events;
• support to participate safely in study, work, volunteering or advocacy;
• help navigating inaccessible physical and digital environments;
• support to manage fatigue caused by constant adaptation;
• support coordination or navigation where systems are complex; and
• advocacy where mainstream systems are not accessible. If the Bill strengthens the link between supports and eligible impairments, it must not do so in a way that artificially separates connected support needs. A support may appear to relate to transport, community access, technology, communication or participation, but for a person with dual sensory impairment those categories often operate together.

The committee should recommend that the legislation and rules explicitly protect people with complex, lifelong and interacting impairments from being disadvantaged by rigid categorisation.

4. Functional capacity assessment must reflect real life, not just clinical measurement

I understand the policy move toward functional capacity assessment. In principle, assessing functional capacity can be fairer than relying only on diagnosis. But the design matters.

A poor functional capacity system could become a rationing tool. A good functional capacity system would assess what people can actually do in real-world conditions, with and without support, across different environments.

For people with sensory impairment, disability is highly context-dependent. I may function differently depending on lighting, noise, transport availability, digital accessibility, communication format, fatigue, weather, unfamiliar environments, crowding, and whether information is provided in an accessible way.

A person may appear to function well in a controlled assessment but still face major barriers in real-world settings.

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The committee should recommend that functional capacity assessment must:

• assess the interaction between impairment and environment;
• consider cumulative and interacting impairments;
• include communication access needs;
• consider transport and mobility barriers;
• recognise fatigue and cognitive load caused by sensory loss;
• avoid over-reliance on short clinical or desktop assessments;
• include the person’s own account of their functioning;
• include evidence from relevant professionals where appropriate;
• provide clear reasons for decisions; and
• include accessible review and appeal rights. The assessment process must not punish people who have become skilled at adapting. Adaptation does not mean support need has disappeared.

5. Ministerial powers to reduce funding need strong safeguards I am concerned about any power that would allow funding for groups or categories of supports to be reduced through ministerial or administrative mechanisms without sufficient parliamentary scrutiny, disability impact assessment and individual review rights.

Financial sustainability is important, but broad powers to reduce support categories create serious risks.

A support category may look discretionary at a budget level but be essential at an individual level. Social and community participation is a good example. It can be wrongly framed as lifestyle or recreation spending. For many people with disability, it is actually the mechanism by which they access public life, build independence, maintain mental health, participate in education or employment, and avoid isolation.

For people with dual sensory impairment, participation support may also be tied to safety, communication and mobility.

The committee should recommend that any power to reduce funding for groups or categories of support be subject to:

• public consultation with people with disability and representative organisations;
• publication of the evidence base for the decision;
• disability impact assessment;
• parliamentary scrutiny;
• protection for individual exceptional circumstances;
• accessible review rights; and
• reporting on outcomes after implementation. The NDIS should not be managed through blunt category-level cuts that ignore individual functional need.

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6. Social and community participation supports should not be treated as optional extras

I am particularly concerned about reductions to social, civic and community participation supports.

For many people without disability, participation is assumed. They can travel, communicate, access buildings, navigate public events, use websites, attend meetings, volunteer, study, work and maintain social contact without needing formal support.

For many people with disability, those same activities require disability-related support.

Social and community participation is not simply leisure. It is connected to:

• mental health;
• community inclusion;
• public participation;
• study;
• employment pathways;
• volunteering;
• advocacy;
• civic involvement;
• independence;
• reduced isolation; and
• the right to live as part of the community. For people with hearing and vision impairment, isolation is a serious risk. Reducing participation supports may appear to save money in the short term while increasing long-term dependence, poorer health outcomes and exclusion.

The committee should recommend that participation supports be assessed by their role in maintaining independence and inclusion, not dismissed as discretionary spending.

7. Automated decision-making must not replace accountable human judgement

The Bill appears to permit or support more automated administrative decision-making within the NDIS. I understand why government agencies are attracted to automation. The NDIS is large, complex and administratively expensive.

However, automation in disability systems is high risk.

Automated systems can reproduce bias, misunderstand complex circumstances, over-standardise decisions, and make it harder for participants to understand why a decision was made. This is especially risky for people with complex, interacting or less common disability profiles.

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The committee should recommend that automated or semi-automated decision-making be subject to strong safeguards, including:

• transparency about when automation is used;
• plain English reasons for decisions;
• accessible communication formats;
• human review on request;
• the right to challenge decisions;
• publication of rules or criteria where possible;
• independent auditing for bias or error; and
• protections against automated decisions being treated as final simply because they were produced by a system.

Efficiency must not come at the cost of procedural fairness.

8. The Bill must not recreate the old service gaps the NDIS was meant to fix

The NDIS was not created in a vacuum. It was created because previous disability support systems were fragmented, inequitable and often inadequate.

That history matters.

If the Bill narrows the NDIS without ensuring other systems are ready, it risks recreating the same failures under a new name. People with disability could once again be left negotiating between systems that deny responsibility:

• the NDIS says the state should fund it;
• the state says it is an NDIS responsibility;
• mainstream services say they are not funded or skilled to provide it;
• community services say they lack capacity;
• families are expected to absorb the gap; and
• the person with disability is left with no practical support. This is especially dangerous in regional and smaller jurisdictions such as Tasmania, where service markets may already be thin and specialist supports may be limited.

The committee should recommend a “no wrong door” principle backed by enforceable responsibilities. If governments want people to move between NDIS, foundational, state, territory and mainstream systems, then governments must make those pathways clear and accountable.

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9. Sustainability must be built through system design, not hidden rationing

I support efforts to reduce fraud, improve provider quality, strengthen safeguarding, improve navigation and make the NDIS more consistent. Those are legitimate reform goals.

But sustainability should not be achieved by making the scheme harder to access, harder to navigate or easier to reduce without building the rest of the disability ecosystem.

The right reform question is not simply: “How do we reduce NDIS spending?”

The better question is: “How do we build a coherent disability support system where the NDIS, foundational supports, mainstream services, advocacy, transport, housing, health, education and employment systems each do their job?”

At present, I am not satisfied that the Bill answers that question.

The committee should recommend that the Bill be amended to include stronger transition safeguards, clearer intergovernmental responsibility, and protections against people falling through gaps.

Conclusion

The NDIS needs reform, but reform must not become a polite word for withdrawal.

The proposed changes raise serious risks for people with disability unless they are matched by clear, funded, accessible and accountable supports outside the NDIS. It is not enough to say that states, territories, mainstream services or foundational supports will fill the gap. Those supports must exist in practice before people are redirected to them.

For people with complex or interacting impairments, including dual sensory impairment, the risk is particularly acute. Support needs do not fit neatly into administrative categories. Reducing one support can undermine communication, transport, safety, independence, participation, study, work and social connection at the same time.

I urge the committee to recommend amendments that protect people with disability from being pushed between systems, strengthen review rights, require clear responsibility mapping, and ensure that no person loses NDIS support on the basis of alternative services that are not yet real.

The NDIS should be made sustainable by building a stronger disability support ecosystem, not by narrowing the scheme before the rest of that ecosystem exists.

1 June 2026

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