NDIA Accountability Project

Childhood Dementia and Batten Disease impact on NDIS participants

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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,

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.

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.

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.

3. 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.

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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.

5. 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 hensity 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.

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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:

  • Parliamentary oversight of substantive changes to support eligibility, exclusions and interpretation, rather than sole reliance on delegated ministerial or administrative mechanisms.
  • Delegated rules that substantially alter support eligibility, exclusions or interpretation should remain subject to parliamentary disallowance and scrutiny processes.
  • Protected review and appeal rights for participants with progressive and medically complex disabilities whose needs may fluctuate or deteriorate rapidly.
  • Participants with progressive neurodegenerative disability should retain access to responsive reassessment processes where deterioration, fluctuation or rapidly changing needs occur.
  • 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.
  • Recognition that progressive neurodegenerative disability does not fit standardised disability trajectories, and that maintenance of function, stability and prevention of deterioration are meaningful outcomes.
  • Recognition that support needs may arise well before profound visible physical disability, including through cognitive, behavioural, communication, neurological and emotional regulation changes.
  • Recognition of preventative and maintenance-based supports as legitimate disability supports within progressive neurodegenerative disability.
  • 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.
  • 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.
  • Safeguards against artificial separation of “health” and “disability” supports where integrated implementation is essential to maintaining safety, physiological stability, communication, participation and community living.
  • Recognition that effective support within progressive neurodegenerative disability frequently depends on integrated implementation embedded throughout daily life.
  • 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.
  • 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.
  • Recognition that delayed reassessment, inflexible systems or interruptions to support may contribute to deterioration, hospitalisation, family breakdown, isolation and force unwanted institutionalisation.
  • 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

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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.

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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, Batten disease and progressive neurodegenerative disability Actual proposed change / reform mechanism Safeguard or alternative recommendation
Future governments may narrow, reinterpret or exclude supports without adequate parliamentary scrutiny, creating instability for rare progressive disability cohorts whose needs do not fit standard models Expanded delegated rule-making powers and ministerial discretion Substantive changes to support eligibility, exclusions, support definitions or interpretation should remain subject to parliamentary scrutiny, disallowance and transparent consultation
Preventative, maintenance-based or integrated supports may be excluded because they do not fit narrow categories, despite being essential to safety, communication, physiological stability and quality of life New or tighter definition of what counts as an NDIS support NDIS support definitions should explicitly recognise preventative, maintenance-based and integrated supports for progressive neurodegenerative disability
Supports sustaining swallowing safety, respiratory stability, nutrition, continence, mobility and communication may be shifted to health systems that are not designed to provide continuous daily disability implementation Reinforcing boundaries between the NDIS and mainstream systems Integrated implementation required for daily functioning and safety should not be excluded solely because it also contributes to health stability
Supports that preserve function or slow deterioration may be refused because they do not produce traditional improvement or independence outcomes Tighter assessment of reasonable and necessary supports Assessment rules should recognise maintenance of function, stability and prevention of deterioration as valid and necessary outcomes
Fluctuating, interacting and less visible disability needs may be underestimated, particularly where cognitive, behavioural, communication, sensory and neurological changes arise before profound physical disability Standardised functional capacity assessments Assessment tools must include specialist-informed pathways for rare progressive neurodegenerative conditions and must recognise fluctuation, interaction of impairments and invisible complexity
Children with rare progressive conditions may need to repeatedly prove functional impact before supports are provided, even where future deterioration is known and time-sensitive intervention is required Greater reliance on functional assessment over diagnosis-informed access pathways Progressive neurodegenerative diagnoses should trigger specialist-informed anticipatory planning and streamlined access to preventative, communication, mobility and integrated supports before significant deterioration occurs.

Whole-plan budgets may fail to reflect rapidly changing, high-complexity and integrated support needs across home, school, community and health-related settings.

New framework plans and support-needs assessment budget method: Framework planning should include flexible adjustment mechanisms and specialist review for progressive neurodegenerative disability.

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routines

Flexibility may help some participants, but stated supports or rigid budget structures may reduce the ability to respond to fluctuating needs and integrated daily implementation.

Plans should preserve flexibility where needs fluctuate and should not lock progressive participants into categories that prevent safe real-world support.

Participants may experience practical funding caps without adequate recognition of escalating changing needs. Total funding amounts should remain reviewable when deterioration, fluctuation or changed support needs occur.

Families managing fluctuating and progressive disease may lose capacity to retain funding needed for delayed equipment, specialist appointments, inaccessible services, workforce shortages, service inaccessibility, hospitalisation or fluctuating support needs affect utilisation, without automatic assumption that reduced expenditure reflects reduced need. Ending plan rollovers and unspent fund rollovers periods or rapidly escalating care needs.

Rapid deterioration or sudden escalation may not be addressed quickly enough, increasing risk of crisis, hospitalisation or family breakdown. Tighter criteria for unscheduled reassessment requests changing needs occur.

People with progressive disability may become isolated, confined to home or excluded from ordinary life, relationships and community participation. Alternative NDIS funding pathways should ensure continuity of supports achieving the same practical outcomes. Changes to Social and Community Participation and Capacity Building budget structures.

Participation may be wrongly treated as discretionary recreation rather than ordinary life, social inclusion and equal citizenship. Participation supports should not be excluded solely because they also provide recreational, social or relational benefit.

Potential reduction in flexibility between home-based ADL support and community-based participation support when the same support needs occur across home and community settings. Continuity of care may break down Core and participation funding should allow continuity of care regardless of whether support occurs at home or in the community.

Ongoing therapeutic implementation embedded throughout daily life may no longer be recognised as legitimate disability support, reducing the effectiveness of allied health intervention and increasing deterioration risk. Narrower interpretation of integrated allied health and disability implementation supports delivered through disability supports remain recognised where necessary to sustain function, safety, communication, participation and physiological stability.

Greater reliance on framework-based or benchmarked funding assumptions Rare disease cohorts may be benchmarked against unrelated disability groups and have complex needs underestimated.

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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 as integrated disability supports, especially Potential narrowing of distress, behavioural escalation and where communication decline is communication and behavioural reliance on restrictive or crisis-based progressive implementation supports responses

Concentrating greater pricing and Any pricing or market reform should funding control within delegated remain subject to transparent oversight, inherited 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 and connection functions delivered through a dedicated Childhood Dementia / n eurodegenerative pathway within the NDIS. These functions should provide rapid access to supports across disease progression, involve professionals with the condition-specific expertise, and allow extisting long-standing coordinators or support coordinators with established participant knowledge to remain involved or formally consulted where this supports continuity, safety and effective planning

Families may lose access to 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

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Some small, specialised or flexible providers may become unavailable if Future provider reforms should preserve access to appropriately skilled, participant-specific and flexible support arrangements, particularly where established providers demonstrate strong participant knowledge, continuity of care and the ability to deliver improved functional, behavioural, communication and quality-of-life outcomes for people with progressive neurodegenerate disability.

Provider quality and registration directly to safety, continuity and improved outcomes reforms

Stronger controls are needed, but excessive administrative burden may Compliance systems should be proportionate, accessible and designed so families are not forced into crisis administration

Fraud and non-compliance controls managing complex care and progressive decline

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 ensuring consistency with Australia’s UNCRPD obligations