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Supports for Australians living with cerebral palsy (Provider advocacy)

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Submission 640

Submission to the Senate Standing Committee on Community

Affairs

Inquiry into the National Disability Insurance Scheme Amendment (Securing the

NDIS for Future Generations) Bill 2026

Submission from Cerebral Palsy Australia

May 2026

Introduction

Cerebral Palsy Australia (CP Australia) welcomes the opportunity to make this submission to

the Senate Standing Committee on Community Affairs on the National Disability Insurance

Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

CP Australia is the national voice of Australians living with cerebral palsy (CP). Approximately 37,000 Australians live with cerebral palsy, and around 75% of them are adults. Cerebral palsy is a lifelong, permanent neurological disability that is non-reversible, with support needs that evolve across the life course: through childhood, education, the transition to adulthood, working life, and ageing.

As at 31 March 2026, 18,875 Australians with cerebral palsy were participants in the National Disability Insurance Scheme, approximately 2% of all Scheme participants. While this is a relatively small share of the participant population, the lifelong and complex nature of cerebral palsy means support needs are typically higher than the Scheme average. Annual plan spending for participants with cerebral palsy was approximately $3.083 billion in the 12 months to 30 September 2025, with an average annual plan of approximately $169,100. Around 24% of NDIS participants with cerebral palsy live in Supported Independent Living.

CP Australia acknowledges the Government’s intent in bringing this Bill forward. The financial sustainability of the National Disability Insurance Scheme is a national priority, and targeted reforms to access, integrity and governance are necessary to put the Scheme on a stable long-term footing. However, greater consideration should be given to the needs of people living with cerebral palsy to ensure the impacts on them and their families are minimised.

CP Australia submission May 2026 Page 1 of 15

Submission 640

Our submission focuses on Schedule 1 (Access and planning measures), where the Bill’s consequences will be most directly felt by people living with cerebral palsy.

Our focus is on ensuring that the lived experiences of people living with cerebral palsy remain front and centre. Cerebral palsy is, by definition, permanent and non-reversible. No course of treatment will reverse the underlying neurological impairment. Treatment and intervention can help maintain functional capacity at different life stages but cannot remove the disability or the need for ongoing supports.

Its functional impacts vary significantly between individuals; secondary conditions and declines can develop gradually or suddenly; and supports need to be flexible through major life transitions, including school, work and ageing. We are concerned that some provisions in the Bill risk creating inflexibility.

CP Australia also acknowledges and broadly supports the views being put forward by Ability First Australia (AFA) on the implications of the Bill for the financial viability of the not-for profit registered providers that deliver services to many people with cerebral palsy. The sustainability of these providers is essential to the participants we represent.

At a minimum, CP Australia considers the following settings critical to ensuring the reforms work for people with lifelong disabilities.

Key Critical Recommendations

CP Australia recommends that the Committee prioritise the following:

  • Establish clear rules for functional capacity assessment, co-designed with people with lifelong disabilities, reflecting a lifespan perspective

  • Define “significant change” and reassessment triggers, ensuring participants can initiate reassessment where needs evolve

  • Ensure the “directly arising from impairment” test does not exclude complex or co- occurring needs

  • Apply guardrails to Ministerial funding powers, particularly for high intensity supports and SIL/SDA participants

  • Reconsider reductions to Social, Community and Civic Participation (SCCP) funding for adults with lifelong disabilities

  • Ensure reasonable and necessary frameworks reflect the evolving and lifelong nature of cerebral palsy

  • Maintain participant involvement in plan renewal and flexibility for unused funding

  • Provide human review safeguards for automated decision-making CP Australia submission May 2026 Page 2 of 15

Submission 640

General comments on the Bill CP Australia acknowledges the Bill’s direction. The lifelong, evolving and complex nature of cerebral palsy requires the Scheme to maintain flexibility, participant involvement and a lifespan perspective. We are concerned that some provisions in the Bill, including those relating to functional capacity, plan reassessments, plan renewal, and the ‘direct’ link between impairment and supports, risk creating inflexibility that will negatively impact the lived reality of cerebral palsy across the life course.

We recognise this Bill is one element of a wider reform program. The announced reductions to Social, Community and Civic Participation (SCCP) funding, the Foundational Supports framework, and adjacent commissioning reforms sit outside the Bill but interact with it and will materially affect people living with cerebral palsy.

CP Australia will work to ensure that the voice of people living with cerebral palsy is heard in all aspects of the NDIS reform package and will continue to advocate strongly for supports that adequately meet their needs.

CP Australia submission May 2026 Page 3 of 15

Submission 640

Recommendations

Schedule 1: Access and planning measures

  1. That the methodology, thresholds, and assessment tool developed under the new rules for functional capacity be co-designed with people living with cerebral palsy and other lifelong disabilities, and that the tool reflect a lifespan perspective that accommodates decline, secondary conditions, and the impacts of ageing.

  2. That clear definitions of ‘significant change’ and the triggers for unscheduled plan reassessments be established in the rules, with input from people with lifelong disabilities, before commencement.

  3. That participants retain the ability to initiate a plan reassessment where their support needs change, including in response to decline that is characteristic of cerebral palsy across the life course.

  4. That the operational application of paragraph 34(1)(aa) as amended by the Bill, requiring the need for support to arise ‘directly’ from an impairment, does not narrow funded supports for participants with complex, co-occurring conditions.

  5. That guardrails be applied to the use of new subsection 33(2EA) (Ministerial determination of maximum support intensity and worker-to-participant ratios) and new section 34A (reductions to groups of supports), particularly for participants with high intensity supports, complex needs, or in Supported Independent Living and Specialist Disability Accommodation settings.

  6. That the proposed reduction to SCCP funding be reconsidered for adults living with cerebral palsy and other lifelong disabilities who rely on these supports for community participation and economic participation.

Schedule 2: Fraud and integrity measures and Governance arrangements

  1. CP Australia acknowledges the intention of these schedules and references Ability First’s submission outlining minor concerns and recommendations.

Schedule 4: New framework planning

  1. That the methodology for working out reasonable and necessary budgets under subsection 32K(1) reflect the lifespan and evolving nature of cerebral palsy, with particular regard to participants with complex co-occurring conditions.

  2. That CP Australia and people living with cerebral palsy be engaged as design and consultation partners through the transition to new framework planning, with a particular focus on transitions across the life course.

CP Australia submission May 2026 Page 4 of 15

Submission 640

  1. That the implementation of new framework planning recognises the research and evidence gap in relation to ageing with cerebral palsy, and that supports are not denied to participants on the basis of evidence gaps.

About Cerebral Palsy Australia

Cerebral Palsy Australia (CP Australia) is the national voice for Australians living with cerebral palsy. We represent the interests of people living with cerebral palsy and bring their voices to public policy discussions.

Cerebral palsy is a permanent, lifelong neurological disability. It is not reversible. A person with cerebral palsy will live with this condition for the rest of their life. The impact of the condition can change over time and may become more complex due to secondary conditions, functional decline and ageing. There is no treatment that reverses cerebral palsy, though treatment and intervention may support function, comfort and participation.

Its functional impacts vary significantly between individuals, can change across the life course, and are often compounded by secondary conditions and the effects of ageing. People living with cerebral palsy frequently rely on a mix of health, disability, and social services across their lives, and the interfaces between these systems are critical to whether the supports they need are available. For example, the economic impact of attending frequent medical appointments can be significant and should be recognised by the NDIS.

The economic impact occurs for several reasons:

  • Time taken away from employment and/or limiting the ability to work due to the need to attend medical appointments: o Without attending these appointments, a person with CP may lose their ability to work.

  • The cost of the appointment can impact upon the limited financial resources of a person with CP if the cost of the medical services is not covered by Medicare or the NDIS: o Noting not everyone with CP can work full-time, in fact this is rare.

A person living with cerebral palsy may need a range of supports over their lifetime, and it is important that any reforms to the NDIS keep these people front of mind.

The bulk of public investment in cerebral palsy services and research has historically focused on prevention and early intervention. While that focus has delivered important outcomes for children, it has left meaningful gaps in research, services, and policy settings affecting adults with cerebral palsy, particularly in relation to ageing. CP Australia works to ensure that public policy and supports for people living with cerebral palsy do not stop at age 18.

CP Australia submission May 2026 Page 5 of 15

Submission 640

The following sections provide detailed analysis and implementation recommendations aligned with CP Australia’s priority recommendations above. Schedule 1: Access and planning measures Schedule 1 is the focus of this submission. Its provisions will most directly determine how the reforms will be experienced by people living with cerebral palsy.

Part 1: Defining functional capacity CP Australia acknowledges the introduction of functional capacity in primary legislation. We believe that functional capacity should be considered in conjunction with a diagnosis of cerebral palsy.

CP Australia notes that while the Bill introduces the concept of functional capacity, it does not define what constitutes a “substantially reduced functional capacity” or how this threshold will be applied in practice.

Without clear definitions and consistent assessment frameworks, there is a risk of variability in access decisions for participants with similar levels of impairment. Established clinical approaches to assessing functional ability in cerebral palsy demonstrate how support needs correlate with functional capability and may assist in promoting consistency in interpretation.

Functional capacity must also include consideration of the environment a person lives in. For example, for people living in rural or remote areas with limited infrastructure such as no paved pathways, a different level of wheelchair or mobility assistance is required compared to someone living in a city. Any consideration of functional capacity needs to have regard to the individual’s circumstance.

We make two further observations.

Permanence and functional capacity Cerebral palsy is, by definition, a permanent and non-reversable neurological disability. The fact of permanence is well established at the point of diagnosis and is consistently demonstrable throughout the participant’s life.

We acknowledge the role of functional capacity as a measure of support need, but we emphasise that for a lifelong condition such as cerebral palsy, functional capacity should be assessed alongside, and not in place of, the established fact of permanence.

It is important that people living with cerebral palsy are not asked to re-evidence their disability. Supports are provided for maintenance, not as a treatment. As people age their needs increase and adequate supports need to be provided.

CP Australia submission May 2026 Page 6 of 15

Submission 640

We ask the Committee to insist that the Agency confirm that cerebral palsy and similar permanent, non-reversible neurological disabilities will continue to be recognised as eligible disabilities, with functional capacity considered as one element of assessment, rather than as a replacement for the diagnosis pathway.

A lifespan perspective For people living with cerebral palsy, functional capacity is not a static measure. It changes through childhood, through the transition to adulthood, through working life, and through ageing. Secondary conditions associated with cerebral palsy frequently develop and worsen with age. The assessment tool, and the timing and triggers of reassessments, must reflect this lifespan reality.

Part 2: Unscheduled plan reassessments CP Australia agrees that unscheduled plan reassessments should be available where there are genuine and ongoing changes in support needs.

We are also aware of instances where the reassessment process is protracted by the Agency, resulting in further deterioration beyond that which originally triggered the reassessment request. We recommend that the Agency’s reassessment process be time bound and include the right for the participant to be involved.

We raise two further operational considerations.

Triggers for ‘significant change’ The threshold for unscheduled plan reassessments will, in practice, be determined by the operational definition of ‘significant change’. For people living with cerebral palsy, change in support needs is often gradual rather than acute. A participant may experience a slow decline over months or years as a secondary condition worsens, or as ageing compounds existing impairments and/or brings on new impairments. Equally, a participant may experience a sudden change, for example, following injury, hospitalisation, or the acquisition of a co-occurring condition.

CP Australia requests the Committee to consider whether the definition of ‘significant change’ should expressly accommodate both gradual and acute changes in support needs, and participants with cerebral palsy should have a right to request a reassessment in recognition of the nature of CP.

CP Australia submission May 2026 Page 7 of 15

Submission 640

Participant control over plan reviews

Plans should always be renewed with participant involvement. Plans that renew automatically without participant involvement risk being locked in at a level of support that no longer reflects the participant’s actual needs. For a person living with cerebral palsy, who may be experiencing gradual decline that was not captured at the time the plan was last set, this can have serious cascading consequences for their health, independence, and ability to participate in community and work.

Part 3: Impairment-linked support CP Australia acknowledges the principle that NDIS funding should be directed to supports arising from a participant’s impairment. We note, however, that the requirement for a support to arise ‘directly’ from an impairment, as introduced by amendments to paragraph 34(1)(aa), risks creating practical difficulty for people living with cerebral palsy.

Cerebral palsy frequently co-occurs with other conditions including intellectual disability, epilepsy, communication impairments, mental health conditions, and acquired conditions developed over the life course. People living with cerebral palsy commonly engage with the health system, the mental health system, the education system, and the broader social service system in parallel with their NDIS supports. The boundaries between systems are not always clear, and historically the NDIS has played an important role in funding supports that, while related to the impairment, also have implications for health or wellbeing.

For people living with cerebral palsy, who commonly rely on multiple systems concurrently, unclear interfaces can result in delays, duplication, or complete gaps in support.

For example, a person living with cerebral palsy may require support to attend frequent medical appointments, but in practice this can be disputed between the health system and the NDIS. Where neither system takes responsibility, the participant can be left without the practical support needed to access essential care, or the cost may be shifted onto family members or the participant themselves.

A narrow interpretation of ‘directly’ could result in gaps in support, which would leave participants without the supports they need. This may result not only in immediate gaps in support, but also in increased long-term costs to the Scheme where unmet needs escalate into higher-intensity support requirements.

CP Australia submission May 2026 Page 8 of 15

Submission 640

CP Australia asks the Committee to:

  • Ensure the operational application of paragraph 34(1)(aa) includes clear, published interface arrangements between the NDIS and adjacent service systems (health, mental health, education, aged care) that reflect reality. For example, supports for attending medical appointments and the impact of mental health issues that compound physical functioning.

  • Ensure these arrangements are stress-tested and piloted before commencement, with people living with cerebral palsy involved in the testing

  • Ensure the Department, the Agency, and other relevant agencies create guardrails that will ensure that no participant falls through the gap between systems.

Part 4: Support determinations CP Australia notes the new power in section 34A for the Minister to reduce funding for groups of supports. We acknowledge the principle of transparent Ministerial decision making on Scheme costs.

We are, however, concerned about the announced application of this power to reduce SCCP funding.

SCCP supports are core to the lives of many adults living with cerebral palsy. They are how adults with cerebral palsy participate in their communities, maintain social connection, develop work-readiness, sustain employment, and access daily activities that support independence.

As an example: An NDIS participant with CP had her SCCP funding cut last year, as the NDIA said it was up to her family to provide social and community participant. The participant had moved to a new city with her husband and therefore, had no other support from family or friends, outside of the support provided by her husband. The participant was left isolated and no longer had access to the community for things such as shopping or attending other community events, without her husband, which impacted her mental health. As a result she was required to lift heavy bags of shopping placing her at risk of falling over in the community or wait for her husband to be available.

These supports also play an important role for families and providers, offering respite and underpinning financial viability.

CP Australia submission May 2026 Page 9 of 15

Submission 640

Reducing these supports, for participants who have built their lives around their existing plans, will have significant consequences for their wellbeing, independence, and ability to participate. It will also increase pressure on families who may be required to step in to provide transport, accompaniment, or other unpaid support, including for medical appointments, with real economic consequences for households already carrying substantial caring responsibilities.

Around 24% of NDIS participants with cerebral palsy live in Supported Independent Living, a substantially higher proportion than the Scheme as a whole. For these participants, SCCP funding is the principal means by which they engage with their communities outside the home: it pays for the worker time and transport that turns supported accommodation into supported life.

CP Australia asks the Committee to:

  • Consider the disproportionate impact of these reductions on adults living with cerebral palsy and other lifelong disabilities, who rely on SCCP supports for community participation and work-readiness; and

  • Ensure guardrails are placed on the use of section 34A to prevent reductions that have the effect of cutting funding for core community and economic participation supports for adults with lifelong disabilities.

We note Ability First Australia’s submission on the operational impact of these reductions on the registered provider sector, and the consequences for participants with high-intensity needs in Supported Independent Living settings. CP Australia agrees with AFA’s observations on this point.

Part 5: Plan renewal CP Australia raises concerns about automatic rollovers and the cessation of carry-over of unused funding at renewal.

Plan reviews should not have automatic rollovers without participant involvement.

Further, for a participant living with cerebral palsy, the inability to use all funded supports in a given plan period may reflect:

  • A period of acute illness or hospitalisation
  • A workforce shortage in their area, particularly in regional and remote markets
  • The complexity of finding appropriately trained workers or qualified therapists
  • A pause in supports during life transitions (for example, moving home, returning to study, or recovering from surgery).

CP Australia submission May 2026 Page 10 of 15

Submission 640

In each of these cases, the practical realities of life have meant they were unable to use the planned supports. The cessation of carry-over treats all unused funding as evidence that the funding was not needed. For people with cerebral palsy in thin markets, this risks compounding existing inequities in service access. This creates a risk that participants in thin or constrained markets are systematically disadvantaged, despite having equivalent support needs.

CP Australia’s position is that unused funding should not lead to penalisation in the following year. Plans should be reset to at least the same baseline, and in some cases unused funds should be rolled over. There is always a need to discuss funding levels and flexibility with participants, particularly those participants living with cerebral palsy.

CP Australia would welcome the opportunity to work with the Department and the Agency on operational arrangements for carry-over that recognise these realities.

Part 6: Reasonable and necessary supports CP Australia acknowledges the policy intent of providing greater clarity and consistency to the reasonable and necessary test.

We make two observations.

The value-for-money provision CP Australia supports the principle of value for money. We note, however, that for participants living with cerebral palsy, the value of a support is often inseparable from the quality, continuity, and safety of its delivery. Cerebral palsy frequently involves complex support needs that require trained, experienced workers and consistent therapeutic relationships. A lower-priced support that does not meet these requirements is not a comparable support.

We ask the Committee to consider whether the operational definition of ‘comparable supports’ should account for the quality, safeguarding, and registration standards under which the comparator support is provided. This aligns with Ability First Australia’s submission on the same point.

The Ministerial power to set maximum support intensity and worker-to-participant ratios CP Australia notes the breadth of new subsection 33(2EA). For people living with cerebral palsy who have high-intensity supports, who live in Supported Independent Living, who live in Specialist Disability Accommodation, or whose support needs require particular worker to-participant ratios, this power has significant implications.

CP Australia submission May 2026 Page 11 of 15

Submission 640

The clinical safety implications also need careful consideration. Rosters, supervision arrangements, and crisis response capacity in these settings are built around the participant’s actual support requirements, not around a funded ratio.

CP Australia asks the Committee to ensure that this power is exercised with guardrails for participants with complex needs, and we cross-reference Ability First Australia’s submission on the operational consequences of this power for SIL and SDA settings.

Part 7: Plan suspension CP Australia supports the introduction of a plan suspension mechanism in appropriate circumstances. We note, however, that disengagement from the Agency is often itself a signal that the participant is in distress, struggling with health or family circumstances, or experiencing difficulty navigating the Agency’s systems.

Part 8: Tightening the meaning of permanence CP Australia acknowledges the policy intent of tightening the definition of permanence. Cerebral palsy is, by definition, permanent and non-reversible. No course of treatment will reverse the underlying neurological impairment. Treatment and intervention can maintain functional capacity at particular life stages but cannot remove the disability or the need for ongoing supports. We ask that the implementation of the tightened permanence test does not create administrative burden for participants whose permanence has long been clinically and consistently demonstrated.

Part 9: Eligibility based on access to other services CP Australia acknowledges the principle that the NDIS should not displace other appropriate service systems. The interface between the NDIS and other systems is important for people living with cerebral palsy, who often access a range of services in parallel.

Schedule 2: Fraud and integrity measures CP Australia supports the integrity agenda set out in Schedule 2. A Scheme that is well targeted, properly governed, and protected from fraud is in the interests of every participant.

We support Ability First Australia’s submission on the implications of the expanded civil penalty regime for the directors and officers of not-for-profit boards that support people with cerebral palsy.

CP Australia submission May 2026 Page 12 of 15

Submission 640

Schedule 3: Governance arrangements Part 1: Decision-making on pricing CP Australia supports the introduction of a clearer statutory framework for pricing decisions. Pricing decisions have a direct impact on the quality and availability of the supports that participants living with cerebral palsy rely on.

We endorse Ability First Australia’s submission on the pricing framework, in particular the structural gap between assumed and actual costs in the disability support sector. We agree with AFA that the financial viability of the registered not-for-profit providers that deliver services to many people with cerebral palsy should be a consideration informing pricing decisions. This is to both safeguard ongoing access to quality supports for participants and to recognise the realities of providing services to people with complex needs.

Part 2: Automation of administrative action

We acknowledge the introduction of a transparent legislative framework for automated decision-making within the Agency.

However, decisions affecting participants living with cerebral palsy frequently involve nuance, individual circumstances, and clinical complexity. The functional impacts of cerebral palsy are highly individualised. Communication needs, support requirements, secondary conditions, and the interplay between cerebral palsy and other conditions vary substantially between participants. An automated system cannot, at least in the foreseeable future, fully understand the impacts of cerebral palsy on a particular individual.

CP Australia asks the Committee to ensure that decisions which significantly affect a participant are subject to a mandatory right of human review on participant request, without administrative penalty. And that the framework includes transparency requirements, so that participants understand when an automated decision has been made and how to seek human review.

This is particularly important for participants with complex or highly individualised needs, where decisions require contextual and clinical understanding.

Part 3: Minor amendments CP Australia has no substantive comment on the minor amendments in this Part.

CP Australia submission May 2026 Page 13 of 15

Submission 640

Schedule 4: New framework planning CP Australia notes the implementation of new framework planning and welcomes the deferral of commencement to 1 April 2027 in response to consultation feedback.

We make two observations.

A lifespan perspective We draw the Committee’s attention to subsection 32K(3C), which provides that a funding amount under a reasonable and necessary budget may be more than, equal to, or less than the actual cost of providing or acquiring the support.

For participants living with cerebral palsy, the methodology for working out reasonable and necessary budgets must take account of the evolving nature of the disability across the life course, the prevalence of complex co-occurring conditions, and the comparative lack of an evidence base for adult and ageing-related interventions.

The research and evidence gap on ageing with cerebral palsy A practical concern for the implementation of new framework planning is the limited evidence base on ageing with cerebral palsy, and on interventions for adults living with cerebral palsy. Most cerebral palsy research and funding has historically focused on prevention and early intervention.

If the new planning framework requires evidence of effectiveness to fund a support, and the evidence base for adults with cerebral palsy is thin because the research has not yet been done, the unintended consequence may be that adults with cerebral palsy are denied supports that they need. CP Australia asks the Committee to consider how the new framework will deal with situations where the evidence base is incomplete.

CP Australia submission May 2026 Page 14 of 15

Submission 640

The broader reform agenda This Bill is one element of a broader package of NDIS reforms. CP Australia appreciates that several elements including the commissioning of Supported Independent Living, the commissioning of support coordination, the Foundational Supports framework, Thriving Kids, and the implementation of new framework planning, are being progressed through processes outside this Bill.

For Australians living with cerebral palsy, these reforms taken together will shape the supports available across the life course. CP Australia welcomes the Government’s commitment to placing the NDIS on a sustainable long-term footing. We urge the Government, the Department, the Agency, and the Parliament to keep the lived experiences of people living with cerebral palsy front and centre as the reforms progress.

Getting these settings right will be critical to ensuring the NDIS remains both financially sustainable and capable of meeting the needs of participants with lifelong and complex disabilities.

We thank the Committee for the opportunity to make this submission.

Zane McKenzie

Board Chairperson

Cerebral Palsy Australia

CP Australia submission May 2026 Page 15 of 15