Submission in response to NDIS Reform 

Neurofibromatosis falls between systems

Neurofibromatosis (NF) is a lifelong genetic condition characterised by unpredictable progression and multisystem involvement. Tumour growth, pain, fatigue, cognitive changes and other manifestations evolve over a person's lifetime.  Disability often arises from the cumulative interaction of multiple impairments rather than a single, readily identifiable functional limitation. This complexity creates challenges within service systems that are largely designed to assess static or singular impairments. In practice, people living with NF are frequently assessed against frameworks that do not adequately capture the cumulative and fluctuating nature of their disability and are referred between health, disability, education and social care systems. Each system in turn, often considers another service better placed to respond. NF therefore illustrates a broader structural gap in how Australia's service systems recognise and respond to complex, lifelong conditions requiring coordinated, multidisciplinary support. This is not a gap unique to NF: it reflects a broader policy blind spot affecting people with progressive, multisystem and rare conditions, whose needs do not map neatly onto the boundary between clinical and disability service systems[1][2]. Addressing this gap requires the NDIS, and the systems it interacts with to explicitly recognise and provide for conditions that sit across this boundary.

This structural gap is evident in the lived experience of families navigating NDIS access for children and adults with NF. One family sought access for their child with NF, whose functional impact included significant cognitive, speech and hypotonia-related challenges. Access was not recognised because the child did not have a co-occurring autism diagnosis, despite NF being the underlying source of impairment. The family described feeling that their child “didn’t fit into any box” the system recognised, and that families whose child’s needs aligned with a more commonly recognised diagnosis were, in effect, more able to access support.8 Their experience is not isolated. It illustrates a systemic pattern built around discrete and familiar diagnostic categories, applied to a condition whose disability arises from complex, interacting impairments rather than a single named cause.

Recommendation 1: Preserve developmental delay protections

Relevant amendment: Schedule 1, Part 1 introduces a statutory definition of functional capacity through proposed section 9(b) and applies that definition to the developmental delay access criteria.

Policy concern: The current Act recognises that children with developmental delay may require coordinated interdisciplinary assessment and support. Linking developmental delay to the new statutory definition of functional capacity may narrow how developmental delay is interpreted for children with complex, multisystem conditions such as NF.

Practical impact on families: For families of young children with NF, developmental delay may not present as a single clear impairment. Parents are often navigating the health system to understand whether there is a medical or clinical reason for changes in speech, motor skills, learning, fatigue, behaviour or sensory processing. While that clinical investigation is occurring, the child’s developmental needs may still be immediate and significant. If access is delayed until a medical explanation is confirmed, critical opportunities for early developmental support can be missed. Bazner[1] et al, provides evidence to support the need for ‘early and continuous support for cognitive functions’ through childhood and remain lifelong.  This is particularly important for children under 9 who already have current NDIS plans and are expected, under current guidance, to remain in the scheme. For these children, a new functional capacity assessment may not be needed immediately and should not become an additional hurdle where existing evidence already demonstrates developmental support needs.

Recommended change: The Committee should seek clarification that proposed section 9(b) will not diminish the existing recognition of interdisciplinary assessment and coordinated care within the developmental delay provisions of the Act.

Recommendation 2: Define personal circumstances in functional capacity assessments

Relevant amendment: Schedule 1, Part 1, proposed section 9 (1)(b) defines functional capacity as a person’s ability to undertake an activity in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances.

Policy concern: The Bill does not define personal circumstances or explain how the term should be applied. For people with NF, functional capacity is often affected by fatigue, pain, cognitive impairment, tumour burden and other manifestations that may fluctuate or become apparent only after sustained activity and impact the rest of the day and week.  Without guidance, assessments may understate the practical and cumulative impact of these impairments.

Recommended change: The NDIS Rules should define and guide the interpretation of personal circumstances under proposed section 9B(1)(b), including how functional capacity assessments should account for fatigue, fluctuating impairments, cumulative disability and the sustainability of activities for people with progressive multisystem conditions. Ensuring a person-centred approach to disability supports.

Recommendation 3: Ensure transparent and evidence-based assessment methods

Relevant amendment: Schedule 1, proposed sections 9(b)(2) and 9(b)(3) allow the NDIS Rules to determine the practical operation of the statutory definition of functional capacity, including assessment methods, classifications, thresholds and matters that may, must or must not be considered.

Policy concern: The broad delegation of assessment methodology to the NDIS Rules may create inequitable access for people with NF and other progressive rare diseases. Implementation should not require participants to repeatedly prove well-established features of their condition through additional reports where appropriate multidisciplinary clinical evidence already exists.

Duplicative evidence requirements would impose avoidable financial and administrative burdens on families, particularly given evidence from the NF Health and Social Impact Study regarding the substantial cost of living with NF and existing barriers to NDIS access. If established clinical evidence is not recognised, the assessment framework may widen rather than reduce inequity.

Practical impact on families: Families may be required to obtain multiple specialist reports to confirm NF-related impacts that are already well established in clinical evidence. This can delay access to supports and create significant out-of-pocket expenses for specialist appointments, allied health assessments, travel and time away from work or education. These costs create an unintended inequity: families with the financial resources, health literacy and flexibility to pursue repeated assessments are more likely to progress through the system, while families already under financial, caring or geographic pressure may be left without timely support. This is particularly concerning where NF families already report substantial difficulty accessing the supports they need, with around 60% indicating that they do not feel they have adequate access NDIS. Furthermore almost 30% of NF families did not access care due to fiscal reasons. Requiring families to repeatedly retell their story, document impairment and justify support needs can also cause distress and relived trauma, particularly where families have already experienced delayed diagnosis, fragmented care or previous denial of support. The result is not simply administrative inconvenience. It can increase mental health strain, deepen patient and carer burden, and shift more responsibility onto unpaid carers who are already coordinating complex, lifelong and often unpredictable care.

Recommended change: The NDIS Rules should require decision-makers to recognise established multidisciplinary clinical evidence for progressive rare diseases when determining functional capacity, minimise unnecessary duplication of evidence requirements, and avoid creating inequitable financial or administrative barriers to access.

Implementation safeguard: The Rules should be supported by a transparent assessment methodology that identifies the evidence, criteria and decision-making processes used to determine functional capacity. Their development and review should include meaningful consultation with people with disability, lived experience representatives, peak disability organisations, clinicians and rare disease experts.

Recommendation 4: Clarify cumulative and interacting impairments

Relevant amendment: Schedule 1, Part 3, 31 paragraph 34 (1)(aa) amends the support funding criteria by replacing the requirement that supports arise “from an impairment” with the requirement that supports arise “directly from an impairment or impairments”.

Policy concern: Requiring supports to arise directly from an impairment introduces a narrower causal threshold than currently exists. For people with progressive, multisystem conditions such as NF, disability often results from the interaction of multiple impairments rather than a single discrete impairment. Because the Bill does not define directly, there is uncertainty about how cumulative and interacting impairments will be considered.

Practical impact on families: In everyday life, families do not experience NF-related disability as separate impairments that can be neatly isolated. A person may need support because pain, fatigue, learning difficulty, anxiety, tumour burden and mobility issues combine to affect daily living, self-care, social participation and family routines. If each impact is assessed in isolation, the overall support need may be underestimated, leaving families to fill the gap through unpaid care, reduced work hours and constant coordination across services.

Recommended change: The legislation or NDIS Rules should clarify that the word directly must not be interpreted to exclude supports required because of the cumulative interaction of multiple impairments. For people with NF and other progressive multisystem conditions, a support may arise directly from disability even where no single impairment, viewed in isolation, explains the full support need. The Rules should make clear that these supports remain within the scope of the NDIS where the combined functional impact of the person’s impairments creates the need for support.

Recommendation 5: Strengthen safeguards before funding reductions

Relevant amendment: Proposed Schedule 1, part for 34 would allow the Minister, through delegated legislation, to reduce funding for specified groups of supports.

Policy concern: Proposed section 34 creates a broad executive power to reduce funding for specified groups of supports, with limited statutory safeguards. While the Bill requires consideration of participant safety, it does not require consideration of broader impacts on participants, families or unpaid carers. For people with NF, support needs are frequently lifelong, progressive and subject to change. Funding reductions made without broader safeguards will increase reliance on unpaid carers, disrupt essential supports and compound the social, financial and caring burden already experienced by communities affected by NF.

Practical impact on families: If support hours are reduced without considering family impact, parents and unpaid carers may need to absorb additional care, transport, supervision and coordination responsibilities. This may affect employment, income, sibling wellbeing and the family’s capacity to manage the long-term demands of a progressive condition.  The Foundation is concerned that, without appropriate safeguards, the proposed amendments have the potential to adversely affect the health, wellbeing and safety of participants with progressive, multisystem conditions, while further increasing the burden placed on families and unpaid carers. This would further impact the 77% of NF carers who are already experiencing mental health concerns.[1]

 Recommended change: Proposed section 34A should require the Minister, before reducing funding for a class of supports, to consider impacts on participants, unpaid carers and families, particularly where participants live with progressive, lifelong or complex conditions. Any determination should be informed by transparent consultation with disability representative organisations and accompanied by a published impact assessment addressing participant outcomes, equity and carer burden.

Recommendation 6: Prevent service gaps and strengthen rare disease services

Relevant amendment: Schedule 1, Part 6 Section 70 after paragraph 34 (1)(f) introduces a new funding criterion for reasonable and necessary supports. Proposed paragraph 34(1)(g) provides that a support must not be one that would be more appropriately provided or funded by another scheme or one or more existing government service systems.

Policy concern: CTF supports avoiding duplication between the NDIS and other government systems. However, people with NF and other complex rare diseases already experience fragmented support across health, disability, education and social care. Without clearer funding responsibility and stronger rare disease service capacity, proposed paragraph 34(1)(g) may deepen these gaps.

Evidence base: A Rare Kind of Care[1] and the NF Health and Social Impact Study[2] identify fragmented service delivery, difficult system navigation and limited coordinated support as key barriers for people and families affected by NF and other complex conditions. Key recommendation aligns with the National Strategic Action Pan of Rare Disease[3], NF and Rare disease have commonwealth funded dedicated multidisciplinary coordinated person-centred approach to care. 

 Practical impact on families: Families affected by NF commonly describe becoming the default care coordinator between specialists, allied health providers, schools, the NDIS and mainstream services. A parent may be told that a support is a health responsibility, then advised by health services that it is an education or disability matter, while the child day-to-day needs continue. This creates repeated retelling of the family’s story, delays in support, out-of-pocket costs, time away from work and stress for siblings and carers. Additional to families, adults with NF navigate disability & health systems with less support and only 7% feeling very satisfied with their transition pathway from paediatrics to the adult system[4]Without clear accountability and stronger rare disease service pathways, families and individuals are left to hold together a system that should be coordinated around them. Beyond families, this is a repeated pattern experience in adult NF care, with fewer service supports available. 

  Recommended change: The NDIS Rules should clarify how funding responsibility is determined when support needs span multiple government systems. This should be accompanied by increased investment in rare disease services, including care navigation, multidisciplinary assessment pathways and cross-system referral mechanisms.

 Implementation safeguard: Implementation should align with Australia’s National Strategic Action Plan for Rare Diseases by supporting person-centred, equitable and coordinated care for people living with rare disease.