Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Batten Disease Support and Research Association Australia

Opening Statement

Batten Disease Support and Research Association (BDSRA) Australia welcomes the opportunity to provide this submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

BDSRA Australia recognises the importance of ensuring the National Disability Insurance Scheme (NDIS) remains sustainable, equitable and capable of supporting future generations of Australians with disability. We acknowledge the Government’s objective of strengthening the Scheme and improving consistency, transparency and accountability. However, many of the practical impacts of the proposed reforms remain unclear. Significant aspects of the future operation of the Scheme will be determined through Rules, delegated powers and implementation processes that have not yet been fully developed or consulted upon.

For families affected by Batten disease, this lack of detail creates uncertainty. Batten disease is a rare, progressive and life-limiting neurodegenerative condition. Support needs do not remain stable over time and often cannot be adequately captured through standardised assessments, fixed funding approaches or assumptions of gradual change. The central question for this Inquiry is therefore not whether reform should occur, but whether sufficient safeguards exist to ensure that people living with rare and progressive conditions remain appropriately supported as these reforms are implemented.

BDSRA Australia is concerned that without appropriate oversight, consultation and flexibility, reforms intended to improve consistency may unintentionally disadvantage participants whose needs are complex, rapidly changing and highly individualised.

Our submission focuses on the unique circumstances of people living with Batten disease and highlights areas where additional safeguards may be required to ensure the NDIS continues to support those with some of the most severe and progressive disabilities in Australia.

Executive Summary

BDSRA Australia supports efforts to ensure the long-term sustainability of the NDIS. However, we are concerned that the Bill provides limited detail regarding how many of the proposed reforms will operate in practice and what safeguards will be available to participants with rare and progressive conditions.

Batten disease is the most common form of childhood dementia and one of the most severe neurodegenerative conditions affecting children. It is progressive, life-limiting and currently without cure.

Unlike many disabilities, Batten disease is characterised by continual deterioration. Children progressively lose vision, communication, mobility, cognitive function and independence over time. The challenge for families is not whether support needs will increase, but how quickly.

Because of this, Batten disease raises important questions about whether standardised approaches to assessment, funding and support planning can adequately respond to progressive neurodegenerative conditions.

BDSRA Australia believes the final legislation, Rules and implementation arrangements must include safeguards to ensure:

progressive conditions are appropriately recognised
diagnosis-informed decision making remains available where clinically relevant
participants retain access to individualised supports that preserve function, participation and quality of life
social and community participation remains a core objective of the Scheme, and
people with rare diseases are meaningfully consulted throughout implementation.

Progressive Conditions Require Different Thinking

Batten disease is fundamentally different from many disability presentations because support needs are expected to increase over time. Children living with Batten disease often experience a combination of vision loss, communication difficulties, cognitive decline, behavioural changes, epilepsy and mobility impairment. These impairments interact with one another and create levels of disability that are often greater than the sum of their individual components.As a result, support planning frequently requires anticipation rather than reaction.

International best practice recognises that there are often limited windows of opportunity during which children can learn communication methods, mobility skills and other strategies that may support participation for as long as possible. Augmentative and Alternative Communication (AAC) provides a clear example. Effective use of AAC often depends on years of familiarity with systems, layouts and access methods. Introducing communication systems only after communication, vision or memory have significantly deteriorated can substantially reduce their effectiveness.

Waiting until function has significantly deteriorated before supports are introduced may reduce their effectiveness and limit opportunities for participation and engagement.

For this reason, BDSRA Australia believes progressive neurodegenerate conditions may require specific safeguards or alternative pathways within the NDIS that recognize the realities of predictable decline.

Standardisation Must Not Replace Clinical Judgement

The proposed reforms place greater emphasis on standardised assessment and decision- making processes. While consistency is an important objective, Batten disease illustrates the limitations of relying solely on functional assessments undertaken at a single point in time.

Children living with Batten disease rarely present with a single impairment. Rather, they experience multiple interacting disabilities that collectively shape their support needs. Diagnosis remains clinically meaningful because it provides valuable information about the likely progression of the condition and future support requirements.

BDSRA Australia is concerned that an overreliance on standardised assessments, automated decision-making or rigid eligibility frameworks may fail to adequately recognise the complexity of progressive neurodegnerative diseases.

Participants must continue to have access to individual consideration, clinical expertise and mechanisms for review where standardised processes do not accurately reflect their circumstances.

Preserving Function and Quality of Life Are Meaningful Outcomes

For many people living with Batten disease, improvement is not always a realistic or achievable outcome. Success may instead involve preserving communication, delaying deterioration, maintaining engagement in daily activities, reducing pain and discomfort, supporting family life and enabling continued participation in the community. These outcomes are meaningful to families and should remain legitimate objectives of NDIS-funded supports.

The value of support should not be measured solely through gains in independence or economic participation. For people living with progressive neurodegenerative conditions, supports often provide value through harm reduction, preservation of function, improved quality of life and reduced burden on families.

Evidence Requirements and Rare Diseases

BDSRA Australia is concerned that future reforms may place increasing emphasis on traditional evidence frameworks that rely heavily on large-scale peer-reviewed research. For rare diseases, this presents significant challenges.

The small number of people affected by Batten disease means that large clinical studies are often not available, despite strong clinical consensus regarding the effectiveness of particular supports, technologies or interventions. Decision-making frameworks should recognise the realities of rare disease research and allow appropriate consideration of

Clinical Expertise, Lived Experience And Emerging Evidence

Clinical expertise, lived experience and emerging evidence where traditional evidence bases are limited.

Failure to do so risks creating unintended barriers to innovative and highly individualised supports that may substantially improve quality of life.

For people living with Batten disease, participation in community life often requires substantial support. Participation is not limited to organised community activities. It includes meaningful engagement in everyday activities, recreation, family life, hobbies, social relationships and experiences that contribute to wellbeing and quality of life.

Many participants require highly individualised support to engage safely and meaningfully in these activities.

BDSRA Australia is concerned by policy directions that may reduce access to social and community participation supports through broad restrictions or blanket funding reductions. For people living with Batten disease, these supports are not discretionary extras. They are often the difference between meaningful participation and social isolation.

The NDIS was established not only to provide care and support, but to enable people with disability to participate in community life. Reforms should strengthen this principle rather than weaken it.

Recommendations

BDSRA Australia recommends that the Committee:

Ensure significant future changes to support eligibility, funding arrangements and support categories remain subject to parliamentary scrutiny and transparent consultation.
Establish formal mechanisms for ongoing consultation with people with disability, rare disease organisations and lived experience communities throughout implementation of the reforms.
Recognise progressive neurodegenerative conditions, including Batten disease and childhood dementia, as a distinct cohort requiring specific safeguards within the NDIS.
Retain flexibility for diagnosis-informed decision-making where conditions have well-established and predictable progression.
Ensure functional assessments recognise the cumulative impact of multiple interacting impairments and do not replace clinical judgement.
Preserve access to anticipatory, preventative and function-preserving supports where these are clinically justified.
Maintain flexibility for urgent plan variations and rapidly changing support needs.
Avoid creating gaps or barriers between disability, health, education and other service systems.

Protect participant choice and control, particularly for people requiring highly specialised and individualised supports.
Ensure reforms do not result in blanket restrictions or reductions that disproportionately affect participants with complex and progressive conditions.

Conclusion BDSRA Australia supports efforts to strengthen the NDIS and ensure its sustainability for future generations.

However, the impact of many proposed reforms remains uncertain. The lack of detail regarding future Rules, delegated powers and implementation arrangements makes it difficult to assess how participants with rare and progressive conditions will be affected. For families living with Batten disease, delays, inflexible processes and inappropriate support decisions can have lifelong consequences. Progression continues regardless of funding cycles, assessment schedules or administrative processes.

We therefore urge the Committee to ensure that the final legislation and its implementation include appropriate safeguards, oversight and consultation mechanisms to protect people living with rare, progressive and life-limiting conditions.

The NDIS was created to support Australians with significant and permanent disability. Batten disease sits squarely within that purpose. The challenge is ensuring that future reforms preserve that commitment.