National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
Senate Submission
NDIS Reform Legislation and Progressive Neurodegenerative Disability
Childhood Dementia Lived Experience Perspective
Submitted by: Alicia Brown
Childhood Dementia Lived Experience Council Member Batten Disease Support and Research Association Australia Board Member Mother to a 31yo NDIS participant with advanced CLN3 Batten Disease
South Australia 29 May 2026
Executive Summary
This submission is provided from the perspective of families and advocates within the Childhood Dementia and Batten Disease communities regarding proposed NDIS reforms and associated legislative changes.
While the Childhood Dementia community supports accountability, safeguarding and long-term sustainability within the National Disability Insurance Scheme (NDIS), significant concern exists regarding:
● expanded ministerial discretion, ● delegated rule-making powers, ● increasing standardisation, ● narrowing support interpretation, ● and insufficient safeguards against future erosion of supports for vulnerable cohorts.
These concerns extend beyond funding administration and raise broader questions regarding Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), particularly obligations relating to dignity, autonomy, participation, community inclusion and individualised supports.
Childhood Dementia refers to a group of more than 100 rare progressive neurodegenerative conditions affecting children and young people, including Batten disease and other disorders causing progressive deterioration across cognition, communication, mobility, behaviour, swallowing, vision and functional independence.
These conditions are:
● progressive, ● medically complex, ● highly individualised,
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
● life-limiting, ● and highly variable across disease trajectories.
Some children deteriorate rapidly following diagnosis, while others experience slower progression across childhood, adolescence or adulthood. Support needs may arise long before a person appears profoundly physically disabled.
These conditions do not fit neatly within standardised disability models.
Many supports within Childhood Dementia are preventative and maintenance-based. They are not simply lifestyle supports or optional extras. Their purpose is often to:
● preserve communication, ● sustain mobility and postural control, ● maintain respiratory stability, ● support safe swallowing, nutrition and hydration, ● maintain bowel and bladder function, ● support seizure management and neurological stability, ● reduce dystonia, pain and physical distress, ● reduce behavioural escalation and emotional dysregulation, ● preserve autonomy, participation and connection, ● delay deterioration, hospitalisation ● prevent institutionalisation
Progressive neurodegenerative disability creates unique challenges because cognitive change, behavioural change, communication decline, fatigue, seizures, visual impairment and emotional regulation difficulties may significantly affect safety, learning, participation and independence long before a person appears severely physically impaired.
For many children with Childhood Dementia, early intervention following diagnosis is critical. Supports introduced before significant deterioration, including communication systems, mobility strategies, orientation supports and therapeutic routines, may preserve function, familiarity, participation and autonomy for longer. Delayed intervention may permanently reduce opportunities to maintain communication, learning and quality of life as cognitive and neurological decline progresses.
The community is particularly concerned that increasing standardisation, framework-based interpretation and future delegated interpretation of:
● “reasonable and necessary” supports, ● Social and Community Participation supports, ● maintenance therapies, ● integrated allied health supports, ● preventative supports, ● and health/disability boundaries
may unintentionally narrow access to supports essential for maintaining neurological and physiological stability, communication, safety, participation, autonomy and quality of life.
There is also concern that increasingly rigid standardisation and narrow support interpretation may unintentionally drift away from the rights-based and individualised principles underpinning Australia’s commitments under the UNCRPD.
Rare disease communities are particularly vulnerable because their support needs are poorly represented within standardised datasets and average-based policy models.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
The Childhood Dementia and Batten Disease communities therefore recommend safeguards ensuring:
● parliamentary oversight of substantive support changes; ● protected review and appeal rights; ● mandatory consultation with disability and rare disease communities; ● recognition of preventative and maintenance-based supports; ● specialist expertise in progressive neurodegenerative disability; ● protection of Social and Community Participation supports as rights-based supports enabling ordinary life and inclusion; ● recognition of integrated allied health and disability implementation; ● and safeguards against delegated powers being used to substantially erode support access without transparent oversight.
An Appendix is included outlining specific proposed reform mechanisms, the potential risks these reforms may create for Childhood Dementia and progressive neurodegenerative disability communities, and suggested safeguards or alternative approaches intended to preserve both sustainability objectives and participant safety, continuity and rights protections.
- Governance and Structural Vulnerability
The proposed reforms raise concerns not only about funding administration, but about how disability support will be interpreted and governed into the future.
Expanded delegated powers and increasing reliance on ministerial or administrative rule-making may allow substantial changes to support access, interpretation and eligibility without sufficient parliamentary scrutiny or transparent safeguards. For people with progressive neurodegenerative disability, this creates ongoing instability within systems already managing complex and rapidly changing needs.
Rare disease communities are particularly vulnerable within highly standardised systems because their needs are uncommon, medically complex and poorly represented within average-based policy models. Supports that are essential to maintaining communication, safety, physiological stability, participation and family sustainability may not fit neatly within narrow or benchmarked interpretations of disability support.
For Childhood Dementia, continuity and flexibility are not administrative preferences. They are protective factors that help prevent avoidable deterioration, hospitalisation, isolation and institutionalisation. Progressive neurological disability continues regardless of policy reform, administrative delay or funding rigidity.
The concern is therefore structural as much as financial. If support interpretation narrows over time without strong safeguards, review rights and specialist-informed oversight, highly vulnerable cohorts may gradually lose access to the integrated supports that allow them to remain safely connected to family and community life.
- Progressive Neurodegenerative Disability Does Not Fit Standardised Systems
Progressive neurodegenerative disability differs fundamentally from stable disability presentations.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
Childhood Dementia involves ongoing deterioration across multiple interacting domains, often with fluctuation, unpredictability and periods of rapid change. Functional capacity may vary significantly due to illness, seizures, fatigue, behavioural distress or disease progression. Needs that appear manageable at one point in time may escalate quickly. Functional capacity can fluctuate vastly from day to day and within a day, so assessments done in a single setting are not likely to give a true and complete picture of the person’s abilities or needs..
These conditions cannot be accurately understood through isolated functional categories or simplistic assumptions about independence, improvement or static support requirements. Preserved function in progressive disease is often the result of intensive and ongoing support, not evidence that support is unnecessary.
There is concern that increasingly standardised assessment systems may underestimate complexity, fail to recognise fluctuation, or misinterpret maintenance as low need. This is particularly relevant where communication decline, cognitive change, sensory impairment, behavioural dysregulation or neurological instability emerge before profound visible physical disability.
Particularly in the case of Batten Disease, where children gradually lose their vision and become blind, standardised assessments may not able to be used if sections of them rely on visual function.
For progressive neurodegenerative conditions, maintenance of function and prevention of deterioration are meaningful outcomes. Assessment and funding systems must explicitly recognise this reality rather than relying primarily on models designed around rehabilitation, recovery or measurable improvement.
- Prevention, Maintenance and Integrated Daily Support
Many supports within Childhood Dementia are preventative and maintenance-based. Their purpose is often to preserve stability, maintain communication and participation, reduce distress and delay avoidable crisis.
Early intervention following diagnosis is frequently time-sensitive. Opportunities to establish communication systems, therapeutic routines, orientation strategies and familiarity with assistive supports may reduce as neurological decline progresses. Delayed intervention can permanently reduce opportunities to maintain autonomy, engagement and quality of life.
For progressive neurodegenerative disability, prevention is not an optional enhancement to care. It is often what allows people to remain safely at home, connected to ordinary life and out of hospital for longer periods.
The distinction between “health supports” and “disability supports” also becomes increasingly artificial within progressive neurological disease. Effective support commonly depends on allied health professionals, families and disability support workers operating together within ordinary daily environments.
Therapeutic implementation is often embedded continuously throughout everyday life through positioning, communication strategies, swallowing support, mobility assistance, behavioural regulation and other integrated routines. Restricting supports to isolated clinic-based models does not reflect the realities of advanced neurological disability, where fatigue, transport burden, behavioural complexity and medical fragility may make clinic-only intervention impractical or ineffective.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
Narrow interpretation of preventative or integrated supports risks shifting costs and pressure elsewhere, including onto families, emergency systems, hospitals and residential care environments, while reducing quality of life and increasing avoidable deterioration.
- Participation, Community Access and Ordinary Life
Social and Community Participation should remain recognised as a rights-based support area that enables people with disability to access ordinary life on an equal basis with others.
People living with progressive neurodegenerative disability should not be required to clinically justify ordinary human experiences such as relationships, recreation, community presence and family participation simply because those experiences require complex support to occur safely.
As disease progresses, participation often requires increasing levels of disability support, including communication assistance, mobility support, seizure monitoring, behavioural regulation and dysphagia awareness. This does not make participation discretionary or recreational in nature. It reflects the level of support required to enable equal access to ordinary life.
There is concern that narrower interpretation of participation supports may unintentionally increase isolation, family breakdown and premature institutionalisation by confining people to the home once community access becomes more complex.
Continuity of support across both home and community settings remains essential. The same disability-related support needs frequently exist regardless of physical location.
- Family Fragility, Escalating Complexity and Lifelong Progression
The proposed reforms must be considered within the reality that many Childhood Dementia families are already operating within highly fragile and exhausting systems.
Families commonly manage escalating care complexity, workforce instability, fragmented services, administrative burden, financial pressure and progressive loss, while simultaneously coordinating high intensity daily supports across home and community environments.
Parents and carers frequently function as coordinators, trainers, advocates, therapy carryover workers, behavioural interpreters and informal palliative care providers in addition to their role as family members. Much of this labour remains invisible within broader policy discussions.
Because these systems often operate close to exhaustion, relatively small reductions, delays or administrative barriers may trigger disproportionate downstream consequences, including avoidable deterioration, hospitalisation, family burnout, loss of workforce stability and premature residential care placement.
For progressive neurodegenerative disability, unmet need does not disappear when supports are reduced. The burden is instead transferred onto families, emergency systems and ultimately the person living with the disability themselves.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
Many people with Childhood Dementia now survive well into adulthood with increasingly complex support needs. Continuity, flexibility and specialist understanding therefore remain essential across the full lifespan of disease progression, including transition into adult systems and advanced stages of disease.
Recommendations
The Childhood Dementia and Batten Disease communities respectfully recommend that the proposed legislation and associated reforms include safeguards ensuring:
1. Parliamentary oversight of substantive changes to support eligibility, exclusions and interpretation, rather than sole reliance on delegated ministerial or administrative mechanisms. 2. Delegated rules that substantially alter support eligibility, exclusions or interpretation should remain subject to parliamentary disallowance and scrutiny processes. 3. Protected review and appeal rights for participants with progressive and medically complex disabilities whose needs may fluctuate or deteriorate rapidly. 4. Participants with progressive neurodegenerative disability should retain access to responsive reassessment processes where deterioration, fluctuation or rapidly changing needs occur. 5. Mandatory consultation and co-design with disability representative organisations, rare disease organisations and lived experience communities prior to major reform or reinterpretation of support categories. 6. Recognition that progressive neurodegenerative disability does not fit standardised disability trajectories, and that maintenance of function, stability and prevention of deterioration are meaningful outcomes. 7. Recognition that support needs may arise well before profound visible physical disability, including through cognitive, behavioural, communication, neurological and emotional regulation changes. 8. Recognition of preventative and maintenance-based supports as legitimate disability supports within progressive neurodegenerative disability. 9. Protection of Social and Community Participation supports, or alternative funding mechanisms that enable the same practical outcomes, including equal access to ordinary life, community inclusion, relationships, recreation and family life. 10.Recognition that effective support within Childhood Dementia frequently requires integrated allied health and disability implementation embedded throughout daily life rather than isolated clinic-only intervention. 11.Safeguards against artificial separation of “health” and “disability” supports where integrated implementation is essential to maintaining safety, physiological stability, communication, participation and community living. 12.Recognition that effective support within progressive neurodegenerative disability frequently depends on integrated implementation embedded throughout daily life. 13.Inclusion of specialist expertise in Childhood Dementia, Batten disease or the specific condition causing Childhood Dementia where condition-specific expertise exists within assessment, review planning processes and legislative changes. 14.Recognition that continuity and flexibility of supports are critical protective factors across the full progression of disease, including diagnosis, childhood, adolescence, transition to adulthood, advanced disease and end-of-life stages which can happen at any age in this cohort. 15.Recognition that delayed reassessment, inflexible systems or interruptions to support may contribute to deterioration, hospitalisation, family breakdown, isolation and force unwanted institutionalisation. 16.Safeguards ensuring the proposed reforms remain consistent with Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities, particularly obligations
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
relating to dignity, autonomy, participation, individualised supports, community inclusion, and equal recognition before the law.
Conclusion
People living with Childhood Dementia and Batten disease are not asking systems to prevent death. Families understand the progressive and terminal nature of these conditions.
What families are asking for is the ability to preserve communication, safety, physiological stability, autonomy, participation, dignity and quality of life for as long as possible within ordinary family and community life.
For progressive neurodegenerative disability, supports are not optional extras. They are interconnected protective systems that help sustain safety, physiological stability, communication, participation and connection to ordinary life, while reducing crisis, hospitalisation and premature institutionalisation.
Progressive neurodegenerative disability does not fit neatly within standardised disability frameworks. Childhood Dementia is characterised by fluctuation, unpredictability, interacting disabilities and progressive deterioration across the full lifespan from diagnosis through to end-of-life care.
There is significant concern that increasingly rigid standardisation, delegated interpretation and narrow support categorisation may fail to recognise the realities of these conditions and may drift away from the rights-based and individualised principles underpinning Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities.
People with disability should not be required to clinically justify ordinary human experiences that others take for granted. Community inclusion, relationships, participation, recreation, autonomy, communication and family life are not luxuries. They are part of equal citizenship and ordinary human existence.
The NDIS remains one of Australia’s most significant social reforms. Sustainability and accountability are important goals, but reform must not come at the cost of invisibility for people whose conditions are rare, progressive, medically complex and profoundly life-altering.
Reform should strengthen safeguarding and accountability while continuing to uphold the rights of people living with Childhood Dementia to remain connected to family, community, communication, participation, dignity, autonomy and ordinary life throughout the course of their disease.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
Appendix A – Legislative Reform Risks and Safeguard Analysis
The following appendix outlines key proposed reform mechanisms and implementation directions associated with the current NDIS reform process, together with potential risks for Childhood Dementia and progressive neurodegenerative disability communities, and suggested safeguards or alternative approaches intended to reduce unintended harm while supporting sustainable reform.
Real risk for Childhood Dementia, Actual proposed change / Batten disease and progressive reform mechanism neurodegenerative disability Safeguard or alternative recommendation
Future governments may narrow, reinterpret or exclude supports Substantive changes to support eligibility, without adequate parliamentary exclusions, support definitions or Expanded delegated scrutiny, creating instability for rare interpretation should remain subject to rule-making powers and progressive disability cohorts whose parliamentary scrutiny, disallowance and ministerial discretion needs do not fit standard models transparent consultation
Preventative, maintenance-based or integrated supports may be excluded NDIS support definitions should explicitly because they do not fit narrow recognise preventative, categories, despite being essential to maintenance-based and integrated New or tighter definition of what safety, communication, physiological supports for progressive counts as an NDIS support stability and quality of life neurodegenerative disability
Supports sustaining swallowing safety, respiratory stability, nutrition, continence, mobility and communication may be shifted to Integrated implementation required for Reinforcing boundaries health systems that are not designed daily functioning and safety should not be between the NDIS and to provide continuous daily disability excluded solely because it also contributes mainstream systems implementation to health stability
Supports that preserve function or slow deterioration may be refused Assessment rules should recognise Tighter assessment of because they do not produce maintenance of function, stability and reasonable and necessary traditional improvement or prevention of deterioration as valid and supports independence outcomes necessary outcomes
Fluctuating, interacting and less visible disability needs may be underestimated, particularly where Assessment tools must include cognitive, behavioural, specialist-informed pathways for rare communication, sensory and progressive neurodegenerative conditions Standardised functional neurological changes arise before and must recognise fluctuation, interaction capacity assessments profound physical disability of impairments and invisible complexity
Children with rare progressive conditions may need to repeatedly Progressive neurodegenerative diagnoses prove functional impact before should trigger specialist-informed Greater reliance on functional supports are provided, even where anticipatory planning and streamlined assessment over future deterioration is known and access to preventative, communication, diagnosis-informed access time-sensitive intervention is mobility and integrated supports before pathways required significant deterioration occurs.
Whole-plan budgets may fail to reflect rapidly changing, Framework planning should include New framework plans and high-complexity and integrated flexible adjustment mechanisms and support-needs assessment support needs across home, school, specialist review for progressive budget method community and health-related neurodegenerative disability
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
routines
Flexibility may help some participants, but stated supports or rigid budget structures may reduce Plans should preserve flexibility where the ability to respond to fluctuating needs fluctuate and should not lock Flexible funding budgets and needs and integrated daily progressive participants into categories stated support allocations implementation that prevent safe real-world support
Participants may experience Framework plans using practical funding caps without Total funding amounts should remain whole-plan budget allocation adequate recognition of escalating or reviewable when deterioration, fluctuation models changing needs or changed support needs occur
Families managing fluctuating and Participants with progressive progressive disease may lose neurodegenerative disability should be capacity to retain funding needed for permitted to retain and rollover unspent delayed equipment, specialist funds where delays, deterioration, appointments, inaccessible services, workforce shortages, service workforce shortages, episodic inaccessibility, hospitalisation or fluctuating deterioration, hospital recovery support needs affect utilisation, without Ending plan rollovers and periods or rapidly escalating care automatic assumption that reduced unspent fund rollovers needs expenditure reflects reduced need
Rapid deterioration or sudden Participants with progressive escalation may not be addressed neurodegenerative disability should retain quickly enough, increasing risk of access to responsive reassessment where Tighter criteria for unscheduled crisis, hospitalisation or family deterioration, fluctuation or urgent reassessment requests breakdown changing needs occur
Participation supports should remain People with progressive disability recognised as rights-based supports Changes to Social and may become isolated, confined to enabling ordinary life and inclusion, or Community Participation and home or excluded from ordinary life, alternative NDIS funding pathways should Capacity Building budget relationships and community ensure continuity of supports achieving the structures participation same practical outcomes
Participation may be wrongly treated Narrower interpretation of as discretionary recreation rather Participation supports should not be Social and Community than ordinary life, social inclusion excluded solely because they also provide Participation supports and equal citizenship recreational, social or relational benefit
Potential reduction in flexibility Continuity of care may break down Core and participation funding should between home-based ADL when the same support needs occur allow continuity of care regardless of support and community-based across home and community whether support occurs at home or in the participation support settings community
Ongoing therapeutic implementation embedded throughout daily life may Integrated allied health implementation no longer be recognised as delivered through disability supports Narrower interpretation of legitimate disability support, reducing should remain recognised where integrated allied health and the effectiveness of allied health necessary to sustain function, safety, disability implementation intervention and increasing communication, participation and supports deterioration risk physiological stability
Progressive neurodegenerative disability Greater reliance on Rare disease cohorts may be should require specialist-informed framework-based or benchmarked against unrelated assessment and exceptions from benchmarked funding disability groups and have complex average-based benchmarking where assumptions needs underestimated needed
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
Maintenance, stability, interdependence Increased emphasis on Maintenance supports may be and slowing deterioration should be measurable functional undervalued because progressive recognised as meaningful support improvement disease is not expected to improve outcomes
Children may miss critical windows to learn AAC, orientation, mobility, Funding rules that may restrict assistive technology and therapeutic Early intervention and anticipatory anticipatory or preparatory routines before vision, cognition or supports should remain available after supports physical capacity decline diagnosis where future decline is expected
Loss of communication and Communication, regulation and regulation supports may increase behavioural support should be recognised Potential narrowing of distress, behavioural escalation and as integrated disability supports, especially communication and behavioural reliance on restrictive or crisis-based where communication decline is implementation supports responses progressive
Concentrating greater pricing and Any pricing or market reform should funding control within delegated remain subject to transparent oversight, ministerial powers may create consultation and parliamentary scrutiny ongoing structural vulnerability for where substantial impacts to support rare disease communities, access may occur. Pricing frameworks particularly where future should protect access to specialised, governments may reduce pricing, flexible and appropriately skilled supports narrow support access or reshape required for complex progressive disability, markets in ways that destabilise and should not disproportionately specialised, flexible and disadvantage small, specialist or Pricing decisions transferred to participant-specific supports required participant-specific service models the Minister and possible for progressive neurodegenerative supporting low-volume, high-complexity differentiated pricing disability disability cohorts.
Participants with progressive neurodegenerative disability should have access to specialist-informed coordination Families may lose access to and connection functions delivered coordinators and navigators with through a dedicated Childhood Dementia / specialist understanding of neurodegenerative pathway within the Childhood Dementia, progressive NDIS. These functions should provide neurodegenerative disability, rapid access to supports across disease complex communication needs, progression, involve professionals with rapidly changing progression and the condition-specific expertise, and allow long-term realities of affected existing long-standing coordinators or families, resulting in fragmented support coordinators with established Commissioning of new support care, delayed supports, participant knowledge to remain involved coordination and connection inappropriate benchmarking and or formally consulted where this supports functions increased crisis risk continuity, safety and effective planning
Quality and fraud controls are important, but rigid systems may Safeguards should improve quality and reduce flexibility for families oversight without removing flexible, Plan management changes and coordinating complex, participant-specific arrangements needed stronger integrity controls participant-specific supports by rare disease families
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 737
Some small, specialised or flexible providers may become unavailable if Future provider reforms should preserve reforms favour larger generic access to appropriately skilled, services, despite established participant-specific and flexible support providers often holding substantial arrangements, particularly where participant-specific knowledge, established providers demonstrate strong communication understanding, participant knowledge, continuity of care behavioural insight and integrated and the ability to deliver improved care experience that contributes functional, behavioural, communication Provider quality and registration directly to safety, continuity and and quality-of-life outcomes for people with reforms improved outcomes progressive neurodegenerative disability
Stronger controls are needed, but excessive administrative burden may Compliance systems should be overwhelm families already proportionate, accessible and designed so Fraud and non-compliance managing complex care and families are not forced into crisis controls progressive decline administration
Narrow or rigid interpretation of supports may unintentionally erode rights relating to dignity, autonomy, participation, family life, individualised support and community inclusion for people with Reforms should include explicit safeguards Potential inconsistency with progressive neurodegenerative ensuring consistency with Australia’s UNCRPD principles disability UNCRPD obligations