National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 472
Senate Community Affairs Legislation Committee Inquiry
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by:
PURA Foundation Australia info@purafoundation.au
May 2026
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 472
Submission to the Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
PURA syndrome is a rare genetic neurodevelopmental disorder caused by pathogenic variants in the PURA gene. The condition is associated with permanent and substantial functional impairment across multiple domains, including intellectual disability, severe communication impairment, hypotonia, mobility impairment, feeding difficulties, behavioural challenges and, for many individuals, developmental and epileptic encephalopathy (DEE). These overlapping and interacting neurological features contribute to the cumulative and fluctuating impact of disability experienced by individuals living with PURA syndrome, resulting in significant functional impairment, safety risks, reduced independence and substantial lifelong support needs.
The PURA Foundation Australia is a national not-for-profit organisation supporting individuals and families affected by PURA syndrome across Australia and New Zealand.
Areas of the Bill Addressed in this Submission
This submission responds specifically to reforms contained within Schedule 1 of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. The submission focuses on the potential impact of the proposed reforms on individuals living with PURA syndrome and addresses the following provisions:
- Functional Capacity Assessment Provisions (Part 1 – Defining Functional Capacity), including the introduction of standardised and evidence-based assessment processes to determine functional capacity and support needs.
- Reassessment and Administrative Process Provisions (Part 2 – Limit Unscheduled Plan Reassessments), including changes relating to reassessment thresholds, evidence requirements, review processes and administrative decision-making.
- Supports Needs Assessment Framework Provisions (Part 3 – Strengthen Link Between an Impairment and Need for Support), including assessment processes used to determine disability support needs and the relationship between impairment, functional impact and support requirements.
- Standardised Decision-Making and Planning Provisions (Parts 4 and 5 – Support Determinations and Plan Renewal), including increased consistency and standardisation across planning, funding and support determinations.
- Plan Flexibility, Plan End Dates and Funding Utilisation Provisions (Part 5 – Plan Renewal), including proposed plan end dates, restrictions on rollover or carryover of unused funds, and the impact of fluctuating support utilisation associated with developmental and epileptic encephalopathy (DEE) and periods of neurological instability.
- Reasonable and Necessary Support Provisions (Part 6 – Reasonable and Necessary Supports), including clarification of supports funded through the NDIS and increased delineation between disability supports and mainstream service systems.
- Permanence and Appropriate Treatment Provisions (Part 8 – Tightening Meaning of Permanence to Reduce Access Where an Impairment Can Be Treated), including consideration of permanent impairment and whether appropriate treatment options have been exhausted.
The PURA Foundation Australia supports efforts to improve the long-term sustainability, consistency and integrity of the NDIS. However, aspects of the proposed reforms may have unintended consequences for participants living with PURA syndrome and other rare neurodevelopmental disorders characterised by permanent and substantial functional impairment, complex support needs and a requirement for lifelong disability supports.
PURA Foundation Australia Page 1
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 472
- Functional Capacity Assessment Provisions (Part 1 – Defining Functional Capacity)
Proposed reforms relating to functional capacity assessments and increased standardisation within assessment processes raise significant concerns for participants living with complex neurological disorders such as PURA syndrome.
The PURA Foundation Australia is concerned that standardised assessment processes may not adequately capture the cumulative and fluctuating impact of disability experienced by individuals living with PURA syndrome, particularly where support needs arise from the interaction of intellectual disability, severe communication impairment, physical disability, and developmental and epileptic encephalopathy (DEE).
Many individuals require substantial support across multiple domains, including mobility assistance, communication support, seizure monitoring, behavioural support and ongoing supervision for safety. While some participants may demonstrate isolated functional abilities or periods of relative stability, this does not necessarily reflect their overall level of disability or daily support requirements.
For many individuals living with PURA syndrome, functional capacity is influenced by fluctuating neurological factors including epilepsy severity, developmental and epileptic encephalopathy (DEE), sleep disruption, physical fatigue, illness, periods of hospitalisation and broader neurological instability. Functional presentation may fluctuate significantly across environments and over time. Assessment processes that rely heavily on brief clinical observations or task based measures may therefore underestimate the cumulative and fluctuating impact of disability, particularly where participants experience episodic deterioration, variable functional capacity and substantial supervision requirements.
Assessment processes that rely heavily on brief clinical observations or task based measures may therefore underestimate: • the impact of severe communication impairment • mobility limitations and physical support requirements • epilepsy related supervision and safety needs • overnight monitoring requirements • the cumulative impact of fluctuating neurological symptoms on daily functioning.
The Foundation is particularly concerned that generic assessment models may underestimate disability where participants require continuous supervision, substantial daily support and assistance across multiple functional domains despite variable observable function.
While consistency within assessment processes is important, sufficient flexibility must remain to ensure participants with rare and complex neurological disability are not disadvantaged by assessment frameworks that may not adequately reflect lifelong and multidisciplinary support needs.
Recommendation We recommend that functional capacity assessment processes:
• recognise supervision and safety requirements as components of functional disability • appropriately consider communication impairment, physical disability, epilepsy and behavioural support needs collectively • account for fluctuating neurological presentations and epilepsy related impairment • recognise overnight care and monitoring requirements • ensure assessment processes appropriately consider evidence relating to rare neurodevelopmental disorders and their functional impact.
PURA Foundation Australia Page 2
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 472
- Reassessment and Administrative Process Provisions (Part 2 – Limit Unscheduled Plan Reassessments)
Proposed reforms relating to reassessment processes, evidence requirements and administrative decision making may create disproportionate burden for participants living with lifelong rare neurodevelopmental disorders and complex neurological disability.
The PURA Foundation Australia is concerned that increased reassessment and evidentiary requirements may not be proportionate for participants with genetically confirmed conditions associated with permanent and substantial functional impairment.
PURA syndrome is a lifelong condition with no curative treatment. While an individual’s support needs may change over time, the existence and permanence of the underlying disability does not. Repeated requests for evidence confirming permanence are therefore unlikely to provide additional information regarding eligibility or long term support requirements.
Obtaining evidence for rare disorders can be time consuming, costly and challenging due to limited clinical expertise and restricted access to clinicians familiar with the condition. Families affected by PURA syndrome already navigate significant care coordination responsibilities across disability, health and education systems, while also managing complex daily support needs.
Many individuals with PURA syndrome experience developmental and epileptic encephalopathy (DEE) and periods of neurological instability that can result in recurrent hospitalisation, episodic deterioration, changes in functional capacity and disruption to established support arrangements. Functional regression, seizure escalation and neurological decline may occur unpredictably and can substantially alter support needs within short periods of time.
During these periods, families may be required to coordinate medical care, support workers, therapies and education adjustments simultaneously.
The Foundation is concerned that increased reassessment requirements, inflexible review processes or additional evidentiary burdens may: • require repeated collection of evidence confirming a lifelong condition • divert families from care and support coordination responsibilities • create delays in planning and access to supports • impose unnecessary financial and administrative burden on families managing complex care needs.
The Foundation is also concerned that reduced flexibility within plans may disadvantage participants whose support needs fluctuate due to epilepsy severity, hospitalisation and broader neurological instability. Administrative processes and plan structures should be capable of responding to changes in support requirements without creating unnecessary barriers to continuity of supports.
Recommendation We recommend that reassessment and administrative processes:
• reduce unnecessary reassessment for participants with genetically confirmed neurodevelopmental disorders associated with permanent and substantial functional impairment • provide streamlined and proportionate evidence requirements where the permanence of disability is well established • recognise that participants living with PURA syndrome may experience fluctuating support needs due to developmental and epileptic encephalopathy (DEE), periods of hospitalisation and neurological instability, without any change to the underlying permanence of disability • maintain flexibility within review and planning processes to support continuity of essential supports during periods of increased medical complexity or functional change.
PURA Foundation Australia Page 3
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 472
- Supports Needs Assessment Framework Provisions (Part 3 – Strengthen Link Between an Impairment and Need for Support)
Proposed reforms relating to the Supports Needs Assessment Framework raise important considerations for participants living with rare and complex neurodevelopmental disorders such as PURA syndrome.
The PURA Foundation Australia is concerned that standardised approaches to determining support needs may not adequately recognise the cumulative impact of multiple and interacting disabilities. For individuals living with PURA syndrome, support needs arise from the combined effects of intellectual disability, severe communication impairment, mobility limitations, developmental and epileptic encephalopathy (DEE) and substantial supervision requirements.
Individuals living with PURA syndrome commonly require support across multiple domains, including: • communication supports • mobility assistance • personal care supports • therapy participation supports • behavioural supports • seizure monitoring and safety supervision • community participation supports.
These support requirements are often interrelated and cannot be considered in isolation. Communication impairment may increase reliance on support workers and supervision. Mobility limitations may increase support requirements across daily activities and community participation. Developmental and epileptic encephalopathy (DEE) may affect safety, participation, independence and supervision needs.
The Foundation is concerned that support needs assessment processes may underestimate support requirements where disability arises from the cumulative impact of multiple impairments rather than a single functional limitation. Participants may demonstrate isolated functional abilities while still requiring substantial daily assistance, supervision and support across multiple aspects of life.
For individuals living with PURA syndrome, support needs may also fluctuate due to developmental and epileptic encephalopathy (DEE) severity, illness, hospitalisation and broader neurological instability. Assessment frameworks must therefore be capable of recognising both the cumulative and fluctuating nature of disability and support requirements, including the impact of episodic deterioration, neurological regression and substantial supervision needs associated with developmental and epileptic encephalopathy (DEE) and complex neurological disability.
Recommendation We recommend that implementation of the Supports Needs Assessment Framework:
• recognise the cumulative impact of multiple and interacting disabilities when determining support needs appropriately consider communication impairment, mobility limitations, epilepsy, developmental and epileptic encephalopathy (DEE) and supervision requirements collectively • recognise the substantial support needs associated with safety, epilepsy, communication, participation and daily functioning • ensure support needs assessments reflect the participant’s overall disability profile rather than isolated functional abilities • maintain sufficient flexibility to accommodate fluctuating support requirements associated with complex neurological disability.
PURA Foundation Australia Page 4
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 472
- Standardised Decision-Making and Planning Provisions (Parts 4 and 5 – Support Determinations and Plan Renewal)
Proposed reforms intended to improve consistency and standardisation across the NDIS raise important considerations for participants living with rare and complex neurodevelopmental disorders.
The PURA Foundation Australia supports the objective of improving consistency, transparency and equity within participant decision making processes. However, increased standardisation across planning and funding decisions may not adequately account for the complexity, variability and cumulative functional impact of rare neurodevelopmental disorders such as PURA syndrome.
Individuals living with PURA syndrome commonly experience permanent and substantial functional impairment arising from the interaction of intellectual disability, severe communication impairment, mobility limitations, developmental and epileptic encephalopathy (DEE) and significant supervision requirements. These impairments interact to affect daily functioning, safety, participation and independence, and often require highly individualised support arrangements.
For many individuals living with PURA syndrome, the objective of disability supports is not necessarily improvement in independence or functional capacity, but sustaining current function, maintaining safety, preventing regression and supporting participation despite progressive or fluctuating neurological complexity. Standardised planning approaches that primarily measure improvement oriented outcomes may not adequately reflect the realities of lifelong rare neurodevelopmental disability.
The Foundation is concerned that increased reliance on standardised planning and funding approaches may not adequately recognise the cumulative impact of these interacting disabilities. Participants with PURA syndrome may require support arrangements that differ significantly from standardised assumptions due to the complexity of their disability profile, the impact of developmental and epileptic encephalopathy (DEE), and the substantial supervision and safety supports required in daily life.
As a result, increased standardisation may lead to: • under recognition of the cumulative impact of multiple and interacting disabilities • planning and funding decisions that do not fully reflect individual support requirements • reduced flexibility to respond to complex and changing support needs • inequitable outcomes for participants whose disability profile does not align with standardised planning assumptions.
While consistency across the NDIS is important, implementation of standardised decision making processes must retain sufficient flexibility to ensure planning and funding decisions appropriately reflect the individual circumstances and support needs of participants living with rare neurodevelopmental disorders such as PURA syndrome.
Recommendation We recommend that implementation of standardised decision making processes:
• ensure planning and funding decisions appropriately consider the cumulative impact of multiple and interacting disabilities • preserve flexibility to account for individual circumstances and support needs that may not be adequately reflected through standardised planning frameworks • recognise the substantial supervision, safety and support requirements experienced by individuals living with PURA syndrome • support consistency in decision making while maintaining individualised consideration of functional impairment and support needs.
PURA Foundation Australia Page 5
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 472
- Plan Flexibility, Plan End Dates and Funding Utilisation Provisions (Part 5 – Plan Renewal)
Proposed reforms relating to plan end dates and restrictions on rollover or carryover of unused funds may disproportionately affect participants living with severe and complex neurological disability, including individuals living with PURA syndrome.
Individuals living with PURA syndrome commonly experience fluctuating support utilisation due to developmental and epileptic encephalopathy (DEE), recurrent hospitalisation, medical instability and periods of neurological deterioration or recovery. As a result, utilisation of funded supports is not always predictable or consistent across the life of a plan.
Periods of increased seizure burden, hospitalisation or neurological instability may temporarily affect a participant’s ability to access therapies, community participation supports and other planned services. However, these interruptions do not reduce the permanence of disability or the ongoing need for these disability supports. For many individuals living with PURA syndrome, supports are required to sustain current function, preserve safety, maintain participation and prevent further regression during periods of neurological instability.
The PURA Foundation Australia also notes that support utilisation may be affected by factors outside the participant’s control. Delays obtaining NDIS required assessments, reports and supporting evidence, together with lengthy wait times for allied health professionals and other specialist services, can result in periods where funded supports are unable to be accessed or implemented as intended. Reduced utilisation arising from these circumstances does not indicate reduced disability related need and should not be interpreted as evidence that supports are no longer required.
The PURA Foundation Australia is concerned that increased reliance on funding utilisation patterns, together with restrictions on plan flexibility, rollover or carryover arrangements, may disadvantage participants whose support utilisation is disrupted by circumstances outside their control. For individuals living with PURA syndrome, periods of reduced utilisation may reflect developmental and epileptic encephalopathy (DEE), hospitalisation, neurological instability, service access barriers or delays obtaining required assessments and evidence rather than reduced support needs.
Implementation of these reforms should ensure that plan management arrangements remain sufficiently flexible to accommodate the fluctuating support utilisation that can occur in rare neurodevelopmental disorders, especially those associated with developmental and epileptic encephalopathy (DEE).
Recommendation We recommend that implementation of plan flexibility and funding utilisation provisions:
• preserve flexibility for participants whose support utilisation is affected by DEE, hospitalisation or neurological instability • ensure funding utilisation patterns are considered in the context of the participant’s overall disability and support needs • recognise that periods of reduced utilisation do not necessarily indicate reduced disability or reduced need for supports • recognise that reduced utilisation may arise from delays in obtaining NDIS required assessments, reports, allied health services or other supporting evidence and should not be interpreted as reduced need for disability supports • maintain continuity of essential supports during periods of hospitalisation, clinical deterioration or recovery.
PURA Foundation Australia Page 6
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 472
- Reasonable and Necessary Support Provisions (Part 6 – Reasonable and Necessary Supports)
Proposed reforms relating to funding frameworks and interpretation of supports funded through the NDIS raise significant concerns for participants living with severe and complex neurological disability.
The PURA Foundation Australia is concerned that increased standardisation or narrowing of “reasonable and necessary” supports may disproportionately affect individuals with rare neurodevelopmental disorders whose support needs arise from the cumulative impact of communication impairment, physical disability, epilepsy, intellectual disability and substantial supervision requirements.
Individuals living with PURA syndrome commonly require coordinated supports across multiple domains, including:
• epilepsy supervision and safety supports • communication supports including Augmentative and Alternative Communication (AAC) • therapy supports • specialised support workers • mobility and personal care supports • community participation supports.
For participants these supports are essential to maintaining safety, communication, functional participation and quality of life.
Epilepsy related supervision requirements provide a clear example. Many individuals require ongoing support due to risks associated with: • seizures and seizure related injury • falls and mobility impairment • aspiration and feeding difficulties • post-ictal confusion and fatigue.
The Foundation is concerned that restrictive interpretation of funded supports may create unintended gaps where disability related supervision, safety and participation needs arise from complex neurological conditions. Increased standardisation of support categories may also reduce the flexibility required to respond to fluctuating support needs and individual functional circumstances.
Participants with severe neurological disability often require highly individualised support arrangements that recognise the interaction between communication impairment, mobility limitations, epilepsy, supervision requirements and daily functioning. Restrictive interpretation of “reasonable and necessary” supports may risk excluding supports that are essential to safety, participation and independence.
Recommendation We recommend that implementation of reasonable and necessary support provisions:
• preserve access to supervision and safety supports required as a consequence of neurological disability and developmental and epileptic encephalopathy (DEE) • maintain flexibility for participants with complex and lifelong neurological disability • ensure communication, mobility, therapy and community participation supports remain accessible where required for functional participation and safety • recognise the ongoing functional impact of epilepsy, communication impairment and physical disability when determining support needs • recognise that support needs arising from communication impairment, mobility limitations, epilepsy and supervision requirements are interrelated for individuals living with PURA syndrome.
PURA Foundation Australia Page 7
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 472
- Permanence and Appropriate Treatment Provisions (Part 8 – Tightening Meaning of Permanence to Reduce Access Where an Impairment Can Be Treated)
Proposed changes relating to eligibility, including consideration of permanent impairment and whether “appropriate treatment” options have been exhausted, may create unintended barriers for participants living with rare genetic neurodevelopmental disorders such as PURA syndrome.
PURA syndrome is a lifelong, genetically confirmed condition associated with permanent and substantial functional impairment. While clinical management may improve quality of life and support functional capacity, the underlying neurological disability remains permanent. While treatment, therapy and clinical management may improve aspects of functioning, reduce seizure burden or support quality of life, these interventions do not remove the underlying permanence of disability or the substantial lifelong support needs associated with PURA syndrome.
Individuals living with PURA syndrome commonly require: • lifelong multidisciplinary care • Augmentative and Alternative Communication (AAC) and speech pathology support • behavioural and physical supports • assistance with activities of daily living • ongoing severe epilepsy management • supervision for safety and seizure related risks.
Many individuals experience severe treatment resistant epilepsy requiring numerous medication trials and ongoing specialist management without achieving seizure freedom.
Due to the rarity and complexity of PURA syndrome: • evidence bases remain limited • standard treatment pathways are variable • therapeutic responses differ significantly between individuals.
The Foundation also notes that advances in rare disease precision medicine therapies should not alter recognition of the permanent nature of PURA syndrome. While future treatments may improve aspects of clinical management or quality of life for some individuals, they do not eliminate the underlying genetic condition or the substantial lifelong functional impairment associated with it.
The PURA Foundation Australia is concerned that additional evidentiary requirements regarding “appropriate treatment” may create disproportionate burden for participants with permanent neurological disability where: • no curative therapies or targeted treatments exist • standard treatment responses are unpredictable • support needs remain substantial regardless of treatment response.
Recommendation We recommend that eligibility and permanence provisions:
• recognise genetically confirmed neurodevelopmental disorders associated with substantial and lifelong functional impairment as permanent disabilities for the purposes of NDIS access • recognise that ongoing clinical management and treatment do not alter the underlying permanence of disability in conditions such as PURA syndrome • ensure the existence of emerging, experimental or future therapies does not diminish recognition of permanent and substantial functional impairment • provide proportionate evidentiary requirements for participants with lifelong rare neurological conditions where the permanence of disability is well established.
PURA Foundation Australia Page 8
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 472
Conclusion
The PURA Foundation Australia supports efforts to strengthen the long term sustainability, consistency and integrity of the NDIS. However, implementation of the proposed reforms must ensure that individuals living with severe and lifelong rare neurodevelopmental disorders are not unintentionally disadvantaged by eligibility, assessment, planning, funding and administrative processes that may not adequately recognise the nature and complexity of their disability.
For individuals living with PURA syndrome, disability is characterised by the cumulative impact of intellectual disability, severe communication impairment, mobility impairment, developmental and epileptic encephalopathy (DEE), feeding difficulties and substantial supervision requirements. These interacting impairments result in permanent and significant functional limitations characterised by the cumulative and fluctuating impact of disability, substantial supervision and safety needs, and lifelong requirements for disability supports that sustain function, preserve participation and prevent regression.
The PURA Foundation Australia urges the Committee to ensure that implementation of the Bill:
• appropriately recognises the permanence and substantial functional impact of rare neurodevelopmental disorders such as PURA syndrome • ensures assessment and decision making processes accurately reflect the cumulative impact of complex and interacting disabilities • recognises supervision, safety and daily support requirements as integral components of functional disability • preserves access to reasonable and necessary supports required for communication, mobility, participation and daily functioning • provides proportionate reassessment and evidentiary requirements for participants with lifelong and genetically confirmed conditions • maintains flexibility within planning and funding arrangements for participants whose support utilisation may be affected by developmental and epileptic encephalopathy (DEE), hospitalisation and neurological instability.
Behind every policy decision are individuals and families navigating lifelong disability and significant daily support needs.
The PURA Foundation Australia urges the Committee to ensure these reforms preserve equitable access, continuity of supports, participation, safety and dignity for people living with PURA syndrome and other rare neurodevelopmental disorders.
The Bill should not proceed in its current form.
PURA Foundation Australia Page 9