Submission 595

24 May 2026

Proposed NDIS reforms risk treatment disruption for people with cerebral palsy

deepCommittee Members,

I am a person with cerebral palsy and have been supported through the National Disability Insurance Scheme for the past six years. I am writing because I am very worried that proposed reforms will cause treatment disruption for people like me with permanent disability who rely on consistent supports to stay well, independent, and able to participate in everyday life.

I am particularly concerned about:

• changes to “functional capacity” and “reasonable and necessary” supports
• changes to what is considered value for money
• increased standardisation of assessments and planning
• limits on flexibility caused by funding periods and removal of rollovers
• mandatory registration reducing choice and access to trusted providers
• reforms that may make it harder for people with permanent disability to maintain ongoing therapy supports.

For the past six years, the NDIS has been a lifeline for me. It has enabled me to manage pain, muscle tightness, spasticity, mobility, and balance through regular maintenance supports. This has allowed me to continue working, participate in my community, and preserve my walking ability as I age.

For most of my adult life, I privately funded my healthcare - including physiotherapy, podiatry, footwear, and guided exercise. As my support needs increased with age, this became impossible to maintain, even though I worked full time.

Before I had access to the NDIS, I could often only afford intensive bursts of therapy when I reached crisis point and experienced episodes of acute pain, including times when I was unable to walk and required extended periods off work.

Since being on the NDIS, I have seen how these acute episodes can be avoided through regular maintenance. Access to regular therapies such as physiotherapy and exercise physiology is essential for people with cerebral palsy to maintain strength, mobility, and function, and to reduce deterioration and long-term health costs.

I have successfully managed a modest package of these supports through the NDIS. I have not requested major changes to my plan since it began, except on one occasion when the Agency sought to reduce supports and I was required to go to the Administrative Appeals Tribunal (now the Administrative Review Tribunal), where that decision was reversed and my original package of supports was found to be reasonable and necessary.

Concerns regarding the proposed reforms

I am fearful that changes proposed in this legislation could disrupt or limit my treatment through: standardised decision-making; cuts across whole funding categories (now and in the

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future); and restrictions on hours for individual supports. Changes including these will cause harm - both for me and for others with permanent disability.

The new legislation is broad and the impact is, frankly, difficult to understand - and at times impenetrable. However, it is clear that access to reasonable and necessary supports may become more restricted in a variety of ways and could be subject to ministerial change at any time. I genuinely do not know how I will fare under this raft of complex changes, and I am worried that the gains I have made over the past six years could be lost.

Even now, the funding I receive does not fully cover everything I need and I pay privately to fill in the gaps. Any reduction in supports is likely to cause me increased pain, reduced mobility, and a decline in my functional independence over time. Reducing access to supports may save money in the short term, but it will create greater costs for both participants and the system over time.

Plan flexibility and continuity of support

I am concerned about proposed changes that limit the ability to carry over unspent funding between plan periods. This flexibility provides an important buffer that allows me to self-manage scaling up supports during periods of increased pain, fatigue, mobility decline, and functional difficulty without requiring urgent plan reviews.

My supports and spending patterns have remained stable over many years. In my experience, the ability to carry over unspent funding encourages careful planning and responsible use of supports. Removing this flexibility may instead create a “use it or lose it” pressure to spend remaining funds unnecessarily before the end of a plan period. It may also increase the need for unnecessary plan reviews and administrative processes, areas where I think the NDIA could easily make savings without causing harm to participants.

Value for money and clinical effectiveness

I am concerned about proposed changes to the definition of “value for money” within the Bill, where lower-cost supports may be favoured without consideration of whether they achieve the same outcome.

For people with cerebral palsy, cheaper or lower-intensity supports may not maintain mobility, function, or independence in the same way as their existing therapies and long-term clinical relationships. This risks directing people with disability toward supports that may appear cheaper on paper but are less effective at preventing deterioration and achieving long-term gains, resulting in greater health costs down the track.

Mandatory registration and continuity of care

I am concerned that mandatory registration and digital payment system enrolment may unintentionally discourage experienced providers, particularly smaller allied health providers like those I rely on, from remaining in the scheme.

For people with lifelong disability, continuity of care and clinical understanding are extremely important. My unregistered providers not only provide a high level of expertise, but also offer value for money because they do not automatically charge at the maximum

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NDIS price limit, which in my experience many registered providers do. Mandatory registration may actually increase costs rather than reduce them.

Losing trusted providers would have a significant impact on people who rely on long-term therapeutic relationships to maintain function and stability. For example, my exercise physiologist has worked with me over many years, and tracks my gait, balance, fatigue, muscle tone and pain patterns. He has the expertise to alter my program every session based on how I present on the day. A lower-cost alternative, such as a support worker, would not have this high level of expertise. This knowledge directly affects safety, mobility, and outcomes - including supporting my capacity to maintain full-time work.

Decision-making and individualised assessment

I am concerned that increasing automation in assessment, planning, and compliance processes may miss the nuances and complexities of fluctuating impairment. Cerebral palsy does not present the same way everyday, and effective support cannot always be reduced to standardised categories or automated budget decisions. Consideration of reports from allied health professionals who understand cerebral palsy and how it affects me as an individual are essential.

Recommendations

I recommend that the Bill be amended to:

• maintain flexibility in plans, including the ability to carry over unspent funds
• ensure “reasonable and necessary” supports remain individually assessed rather than standardised
• avoid funding caps or category-wide reductions that do not reflect individual need and risk harm
• ensure value for money assessment considers long-term clinical outcomes, not just short-term cost
• protect continuity of care by supporting long-term provider relationships and avoid unintended loss of experienced allied health professionals
• ensure any registration requirements do not reduce choice, access, or affordability of care.

Closing

I also want to emphasise that public discussion around “waste” and “rorting” within the NDIS is creating anxiety and stigma for the many genuine participants who rely on these supports.

I have previously had to go through the tribunal process to maintain a modest and effective package of supports that were previously all approved as reasonable and necessary. The legal costs incurred by the NDIA would likely have far exceeded the value of the supports I was seeking to maintain. I do not want to repeat this process, but I am concerned more incorrect decisions are in my future and many others as a result of the proposed reforms. The NDIS has been essential to my independence, health, and wellbeing. I urge the Committee to ensure reforms strengthen the scheme without reducing flexibility, continuity of care, participant choice, or access to clinically appropriate supports for people with permanent disability, including cerebral palsy.

Submission 595

​I​​would​​be​​happy​​to​​speak​​with​​the​​Committee​​about​​my​​concerns.

​Yours​​sincerely,