Implications for People Living with Neurofibromatosis and Rare, Complex Disabilities (Participant experience)

Submission 639

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

Implications for People Living with Neurofibromatosis and Rare, Complex Disabilities

The language of policy shapes who is seen, who is heard, and who receives support.

Prepared by: Kirsty Whitehead

Lived Experience Expert | Neurofibromatosis & Rare Disease

Policy, Founder, Advoca-Lab

30/05/2026

Submission 639

Executive Summary

This submission is provided by Kirsty Whitehead, a lived experience expert in Neurofibromatosis (NF) and rare disease policy, working across governance, advocacy, research and systems reform to improve outcomes for people living with complex and lifelong conditions.

NF is a rare genetic condition associated with a broad range of physical, cognitive, neurological

and psychosocial  disabilities. Characterised by  significant  variability and  complexity, NF

provides a valuable case study through which to examine the implications of disability policy reform for people living with rare, complex and fluctuating conditions. This is particularly relevant given findings from the National Neurofibromatosis Health and Social Impact Study, which reported that 60% of respondents had been refused access to the National Disability Insurance Scheme (NDIS).

While recognising the importance of ensuring the long-term sustainability of the NDIS, this submission raises concerns that several proposed amendments may create unintended barriers for people whose disabilities do not align neatly with standardised assessment frameworks. Three key concerns are identified: The proposed definition of functional capacity lacks clarity regarding assessment methods, evidentiary requirements and how complex, fluctuating and cumulative disabilities will be recognised. The introduction of a direct impairment test risks oversimplifying disability by failing to adequately account for cumulative and interacting impairments. New powers to reduce funding for groups of supports create uncertainty regarding the future security of community participation supports and risk shifting costs to participants, families and other service systems.

This submission also highlights broader concerns regarding the language and framing of disability within the proposed reforms. Drawing upon applied linguistic analysis, it argues that

increasing  emphasis  on  assessment,  categorisation,  financial  sustainability  and  risk

management may unintentionally shift the focus of the Scheme away from participation, inclusion and human rights.

Accordingly,  this  submission recommends  greater  clarity  regarding  functional  capacity

assessments,  recognition  of  cumulative  disability,  safeguards  against  disproportionate

evidentiary burdens, protection of community participation supports, and stronger alignment with the human rights principles underpinning the NDIS.

The sustainability of the NDIS is an important policy objective. However, sustainability should not be achieved at the expense of equity, inclusion and access for people living with complex and lifelong disabilities.

Submission 639

Neurofibromatosis: A Case Study in Complexity

Neurofibromatosis (NF) is a rare genetic condition associated with a broad spectrum of physical, cognitive, neurological and psychosocial disabilities. Individuals living with NF may experience

chronic  pain,  fatigue,  vision  impairment,  mobility  limitations,  learning  disabilities,  intellectual

disability, autism, attention deficit hyperactivity disorder (ADHD), executive functioning difficulties, anxiety and other mental health challenges. These impacts frequently occur simultaneously, vary significantly between individuals, and often change across the lifespan.

A defining characteristic of NF is uncertainty. There is no predictable pathway and no single NF experience. Two individuals with the same diagnosis may have vastly different presentations, levels of disability and support needs. Some may require minimal assistance, while others require lifelong multidisciplinary healthcare, disability supports and significant assistance with daily living. As a result, diagnosis alone provides limited insight into the functional impact of the condition, and disability cannot be adequately understood through a single impairment, standardised category or static assessment.

Neurofibromatosis Type 1 (NF1), the most common form of the condition, affects approximately 1 in 2,500 people. The condition can affect multiple body systems and is associated with a range of

medical  complications,  including  tumour  development,  skeletal  abnormalities,  neurological

conditions and sensory impairments. However, it is often the cumulative interaction of these physical, cognitive and psychosocial impacts that creates the greatest barriers to participation, independence and quality of life.

Evidence from the National Neurofibromatosis Health and Social Impact Study¹ highlights the substantial burden experienced by individuals and families living with NF. Participants reported significant challenges navigating fragmented healthcare systems, coordinating multiple specialists, managing uncertainty regarding disease progression, and accessing appropriate disability and community supports. Of particular concern, the study found that 60% of respondents reported being refused access to the NDIS, despite many living with complex and lifelong disability. This finding raises important questions regarding how existing disability frameworks assess and respond to conditions that do not fit neatly within standardised categories of impairment and support need.

These findings are reinforced by the national report A Rare Kind of Care², which demonstrates that people living with rare diseases frequently encounter delayed diagnosis, fragmented service systems,

limited  professional  understanding  of  their  condition, and  significant  barriers  to  accessing

coordinated care and support. The report highlights that rare disease experiences are often characterised by complexity, uncertainty and the need to navigate multiple systems simultaneously.

These  challenges  are  particularly  relevant  within  disability support systems  that  rely upon

standardised assessment frameworks and clearly defined categories of impairment.

NF therefore provides a valuable case study through which to consider the implications of disability policy reform. The condition demonstrates why disability cannot always be understood through single impairments, static assessments or standardised categories. Rather, disability often emerges through the cumulative interaction of multiple impairments, environmental barriers, support needs and life circumstances.

² Rare Voices Australia, A Rare Kind of Care (2025).

Submission 639

Analysis of the Proposed Amendments Cont.

Concern 1: Functional Capacity and Evidentiary Burden

The proposed definition of functional capacity creates significant uncertainty regarding how disability will be assessed in practice. While the Bill defines functional capacity as a person’s ability to undertake an activity without assistance, assistive technology, modifications or environmental supports, much of the detail regarding how this assessment will occur is deferred to future NDIS Rules. The Bill provides limited guidance regarding how fluctuating conditions, cumulative disability, environmental barriers or complex support needs will be considered. As a result, participants with rare, variable and multifaceted conditions may face inconsistent outcomes depending on how future Rules are drafted and applied. Further concerns arise regarding the evidentiary burden associated with demonstrating functional capacity. Occupational Therapy Functional Capacity Assessments are commonly relied upon within the NDIS and can cost thousands of dollars. The Bill is silent on how these assessments will be funded and whether the cost of demonstrating disability will fall upon participants, families or already stretched public health services.

This issue is particularly relevant for people living with Neurofibromatosis and other rare conditions, where disability frequently arises from the cumulative interaction of physical, cognitive, neurological and psychosocial impairments. These conditions often require evidence from multiple specialists and allied health professionals to adequately capture their impact. This uncertainty creates a risk that participants with complex, rare and fluctuating conditions may face inconsistent assessment outcomes and increased evidentiary burdens.

Concern 2: Direct Causation and Cumulative Disability

The proposed amendment requires supports to arise directly from an impairment or impairments. While the inclusion of “impairments” acknowledges that disability may involve multiple conditions, the introduction of a direct causation test creates uncertainty regarding how complex and cumulative disability will be assessed in practice. For many people living with NF and other rare conditions, support needs do not arise from a single impairment operating in isolation. Rather, they emerge through the interaction of multiple physical, cognitive, neurological and psychosocial impairments that collectively affect participation, independence and daily functioning.

The Bill provides limited guidance regarding how decision-makers will assess support needs that arise from the cumulative impact of multiple impairments. This creates a risk that participants with complex and variable conditions may face inconsistent decision-making where disability cannot be readily attributed to a direct and singular causal pathway.

Concern 3: Reasonable and Necessary Supports, Community Participation and Cost Shifting

Permits the reduction of funding for specified groups of supports for the purpose of ensuring the financial sustainability of the NDIS, even where those supports have previously been determined to be reasonable and necessary. While the provision requires the Minister to have regard to participant safety, safety alone does not reflect the broader objectives of the NDIS. The Scheme was established to support social and economic participation, independence, choice and control, and inclusion within the community.

For many people living with NF and other complex disabilities, community participation supports are not discretionary services. They are essential supports that enable access to education, employment, social connection, skill development, communication opportunities and community life. 4

Submission 639

Analysis of the Proposed Amendments Cont.

These supports  frequently reduce  social  isolation, strengthen independence and sustain the

wellbeing of both participants and carers. The proposed amendment expressly contemplates circumstances in which funding provided under a participant’s plan may be insufficient to meet the total cost of supports that have already been determined to be reasonable and necessary. This raises concerns regarding the practical meaning of “reasonable and necessary” where funding may subsequently be reduced for financial reasons.

From a lived experience perspective, reductions to community participation funding may have

broader consequences than are immediately apparent.  In  practice,  participants and  families

frequently rely on flexible supports to maintain social connection, access community activities and build independence. Where these supports are reduced, the burden is often transferred to informal carers, many of whom are already managing significant caring responsibilities. There is also a risk that funding reductions may create unintended pressure on other support categories. Families may be forced to utilise daily living supports to facilitate community access, reducing the overall level of assistance available to participants. Rather than eliminating support needs, such changes may simply shift costs and responsibilities between funding categories, families and other public

systems. Any assessment of  financial  sustainability should consider the broader social and

economic consequences of reducing community participation supports.

Submission 639

Language, Classification and Disability

This submission is further informed by research in applied linguistics, including the application of Cameron’s Dynamic Discourse Approach to Metaphor Analysis. From this perspective, legislative language is not neutral. The language used within policy frameworks shapes how disability, support

needs and  participants  are  understood  within  institutional  systems.  Across  the  proposed

amendments, disability is increasingly constructed through concepts such as functional capacity, impairment, eligibility, thresholds, financial sustainability and risk management. While these concepts serve legitimate governance purposes, they also frame disability as something to be assessed, categorised and managed. The effect is a shift away from the lived experience of disability and towards the administration of access to support.

Particular concern arises from provisions requiring supports to be provided only insofar as they are

consistent with the  financial  sustainability of the Scheme.  Linguistically,  this framing places

participant needs within a fiscal constraint, establishing a hierarchy in which support becomes conditional upon broader economic considerations. Through this lens, disability is constructed less as a matter of participation and inclusion and more as a matter of eligibility, evidence and resource allocation. This is especially significant for people living with Neurofibromatosis and other rare conditions, whose experiences often do not fit neatly within standardised categories or assessment frameworks. The cumulative effect is a system that risks positioning participants as subjects of assessment whose needs must be continually demonstrated and justified, rather than as citizens exercising rights to participation, inclusion and support.

The United Nations Convention on the Rights of Persons with Disabilities recognises disability as arising through the interaction of impairments and social barriers and affirms the rights of people with disability to autonomy, inclusion and equality. Legislative language should reflect and reinforce these principles, ensuring that people with disability remain at the centre of the Scheme rather than becoming secondary to the systems designed to administer it.

The  language  of  the proposed amendments  reflects a  broader  shift from a  rights-based

understanding of disability towards an administrative and economic model of disability. While financial sustainability remains an important policy objective, it should not eclipse the principles of participation, dignity and inclusion upon which the NDIS was founded.

Submission 639

Recommendations

The Committee should consider:

Recommendation  1:  Clarifying the  definition of functional capacity within primary  legislation,

including how fluctuating, cumulative and rare disabilities will be assessed.

Recommendation 2: Ensuring functional capacity assessments are accessible and publicly funded where required to prevent financial barriers to accessing the Scheme.

Recommendation  3:  Providing  guidance on  the assessment  of  cumulative and  interacting

impairments where support needs arise from multiple disability impacts.

Recommendation 4: Clarifying the operation of the direct impairment test for people living with complex, rare and multifaceted conditions.

Recommendation 5: Protecting community participation supports from broad funding reduction mechanisms that may undermine inclusion, independence and social participation.

Recommendation 6: Considering the potential for cost shifting to carers, health services, mental health services and other public systems when assessing measures intended to improve financial sustainability.

Recommendation 7: Ensuring future NDIS reforms remain consistent with Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities.

Recommendation 8: Undertaking targeted consultation with people living with rare and complex conditions prior to implementing significant assessment and funding reforms