National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2297
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission to Community Affairs Legislation Committee
From Tricia A Stephenson
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2297
Dear Committee Members,
I was diagnosed with Parkinson’s Disease in September 2023, am currently receiving supports in relation to my condition, and make the following submission in relation to your Inquiry, based on my experiences in negotiating the existing arrangements and with respect to my concerns for the future as my chronic and incurable condition continues to progress and my capacity declines:
My application for support related to an initial low level of intervention supports categorised as “early intervention”, designed to preserve my capacity and enable full participation in the workforce and community by delaying the progress of my degenerative neurological condition.
My treating neurologist made recommendations for therapeutic exercise treatment programs that have been proven to have an efficacious impact on the physical and neurological capacity of Parkinson’s sufferers, but my Initial Plan did not provide funding for such therapy as part of the Plan, but made allocations for Occupational Therapist and other Allied Health assessments at the beginning of the Initial Plan, and again toward the end of the Initial Plan.
With regard to Unscheduled Plan Reviews, I have had three reviews and amendments since inception of my Initial Plan in July 2025, all of which have been required as a result of administrative errors and “conditional denials” of support.
Initially I was advised that self-management of Plans was not available to Plan recipients, and my Initial Plan included financial allocation for the Plan to be administered by a Plan Manager, despite my demonstrated capacity to do this myself without additional cost.
As indicated above, my Initial Plan did not provide for demonstrably effective therapeutic exercise interventions, despite the recommendations of my treating neurologist, and the funding of both beginning and end of Plan functional capacity assessments.
I sought a Plan review to correct both the administrative error and what appeared to be an oversight in provision of intervention support.
As a consequence, the error was corrected, and my Plan is now self-managed, with a resulting saving, although the amount remains in my Plan. I was also advised that the neurologist recommended therapeutic exercise intervention would only be permitted if it was supported by a Functional Capacity Assessment provided by an Occupational Therapist (OT).
I subsequently obtained the requested Occupational Therapist Functional Capacity Assessment which supported the early intervention therapeutic exercise program recommended by my treating neurologist.
Since submitting this Report and requesting authorisation to proceed with the therapeutic exercise program, I have been advise by the NDIS that the amounts my Plan allocated to Allied Health (including Occupational Therapist assessments) are intended to be used flexibly, and that I could have used them for the requested therapeutic exercise programs without the OT Functional Capacity Assessment.
I note that the cost of the OT Functional Capacity Assessment which appears – on the basis of subsequent advice - to have been unnecessary, would have funded my requested therapeutic exercise program for approximately two years.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2297
It concerns me greatly that, while much is made of the cost of the NDIS, there are many issues that appear to relate to inconsistencies and errors in interpretation, approval and implementation of appropriate Plans for support recipients that would result in very significant savings to the Commonwealth without reduction or denial of appropriate supports to those with profound disabilities, or those with degenerative conditions such as Parkinson’s Disease who are seeking low to medium level early interventions in order to reduce and delay the most debilitating effects of the condition for as long as possible, in order to continue to participate in the workforce and community for as long as possible.
Further, the amendments are intended to “clarify the definition of permanence by introducing the concept of ‘all appropriate treatment’”. It is important to recognise that the impact of this on people with Parkinson’s may be both profound and devastating. At various stages of progression of the disease, different treatments are indicated, commensurate with the level of disability and likely efficacy of treatments. An expensive and higher risk treatment performed during later stage Parkinson’s, unless contra-indicated, is Deep Brain Stimulation (DBS), which involves surgery to place electrodes in specific areas of the brain.
If, as indicated, ‘all appropriate treatment’ has to be undertaken, how would the proposed rules prevent arbitrary decisions withholding NDIS support from those with Parkinson’s whose condition and capacity was profoundly impacted, but who had not reached the stage where DBS was required or considered appropriate? Faced with such a situation, it is conceivable that access to supports might become a factor in people making a decision to seek or proceed with DBS surgery, even though there may be less interventionist or radical and high-risk, high-cost treatments and therapies that may be available as options.
In my view, DBS is just one possible scenario where there is a very real risk that limiting support for access to early intervention therapies may result in more rapid and profound decline of individuals with Parkinson’s, leading to significant and largely avoidable costs being incurred in the Health system.
Despite my diagnosed condition, I am determined to do as much as I can to delay deterioration of my physical and neurological capacity for as long as possible. During the period when I was being advised that I was not eligible to have financial support for the recommended therapeutic exercise program, I have used my own resources to pay these costs, but am grateful that I will be relieved of this burden during the remaining period of my current plan.
Although my lifetime of paid employment is in its final phase (I am currently on personal leave, dealing with issues related to Parkinson’s and some other conditions), maintaining my physical and neurological capacity remains an important priority for me and, I would argue, will continue to see me making a positive contribution to both the economy and community.
If I am able to maintain a level of fitness and delay the progression of Parkinson’s, I will be able to continue to provide support to my elderly parents (aged 89 and 87) who continue to live in their own home without regular Aged Care support or Home Care packages. In addition, one of my daughters is returning to full-time employment (from 0.6) from July, and I will assist her with childcare care so that she is able to undertake this additional paid employment without requiring additional commercial childcare.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2297
In addition, undertaking my current recommended therapeutic exercise regimen provides me with a degree of confidence that I will be able to maintain my capacity to drive, which is important for me to undertake the normal tasks of life, and remain actively engaged in the community. Again, in my view, this is a both a cheaper intervention and a more positive outcome for everyone, than if my decline accelerates and I need to seek support of subsidised transport to move between my home and various medical and other appointments. To provide some context of this, I note that during last week I had my twenty seventh medical appointment / consultation / procedure for this Calendar Year – this figure does not include any of the therapeutic exercise classes I have attended during the year.
Beyond these immediate intentions and aspirations, I am concerned that the proposed changes to the NDIS, if pro-active early intervention to preserve capacity is not viewed as a desirable aspect of the program, those of us who are afflicted with Parkinson’s and other degenerative conditions will decline at a faster rate than we might otherwise do, and will thus become an increased burden on the health care system, community support systems and our families, and less able and likely to continue to participate actively and positively in our communities.
In considering how the proposed changes may have a very real impact on lives – both their quality and length – I urge the Committee to look beyond the headline “cost savings”, and consider whether a more targeted response to address deliberate fraud and over-servicing and the obvious and deep-seated administrative flaws and arbitrary, inconsistent decision making should take priority over withdrawing services and supports that provide a demonstrable current benefit to society and the economy, and provide wellness, longevity and resilience to reduce the likelihood and magnitude of future health and care costs.
I am also concerned that the proposed changes will transfer resources from support and intervention for those with disabilities and reduced capacity to one of increasing burden on health care workforce, with an increased share of resourcing being channelled toward capacity assessments rather than supporting people with disability. As indicated above, I have already seen this operative in my Initial Plan, where, despite recommendations from my treating neurologist, prior to approval of relatively modest amounts to fund therapeutic exercise interventions, I was required to have a full Functional Capacity Assessment conducted by an Occupational Therapist, at a cost of just over $2600. As noted previously, this amount would have provided sufficient funds for the recommended therapeutic exercise program for approximately two years. I was fortunate that funding for this assessment was included within the allocations in my Initial Plan.
For the future, if applicants require a full Capacity Assessment to be undertaken as a pre- requisite to apply for access to NDIS supports, rather than as a funded mechanism to determine levels of support within some form of conditionally accepted Plan, it will create an access hurdle that will likely prevent those most in need or most deserving of support from applying for such support, creating inequity in a system that was intended to recognise the need for fairness in a program that supports some of the most basic tenets of human dignity.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2297
Access to the NDIS system and relevant supports provided me with optimism about how I might be able to delay or fight the corrosive impacts of Parkinson’s. The changes proposed have increased my uncertainty that I will have access to the supports I might need both to slow its progression and continue to live my best possible life as it progresses. Despite the challenges of navigating the system, including its complexity and inconsistencies, I believe that I am currently in a situation where my supports are appropriate to assist me in delaying further decline as much and for as long as possible.
In previous employment as a Personal Care Assistant in an Aged Care facility, I provided care to people with late-stage Parkinson’s Disease. Declining to that point is a terrible prospect, and one that I intend to resist as long and as hard, and in whatever way possible that I can. Access to early intervention therapies and supports appears to provide an opportunity for myself and many other people with early onset Parkinson’s to prolong our experience of “normal” life, continuing in employment and community activity, although perhaps for reduced hours or in a modified form.
I believe this is a positive for the whole of our society, and is actually at the core of why the NDIS was established and the function it was intended to fulfil. It seems unconscionable that it should now be redrawn to not only limit support to those with profound disabilities and capacity impediments, but that it should do it in such a way that it is likely to lead to more people with more profound levels of disability and capacity reduction than needs to be the case.
In many spheres of life – including learning delays; cancer detection and treatment; anti- smoking campaigns – our mature society recogises that tackling the problem “upstream” where it is a minor problem, is the best and most cost-efficient way of reducing the financial, health and human consequences of the problem. Leaving intervention until the only thing that can be done is coping with outcomes has always led to the worst possible results.
I contend that the most appropriate place for NDIS to become operative for those with recognised chronic and degenerative conditions such as Parkinson’s is at the early intervention stage, where there is still both hope and clinically efficacious interventions that can delay decline and high levels of profound disability and suffering for individuals and families, and very significant cost burdens in the Health and Care systems.
I urge the Committee to consider the impact that these well-intended but poorly targeted changes will have on the lives of people living and currently working through the early stages of Parkinson’s Disease and similar degenerative neurological conditions.
Yours Sincerely, Tricia A. Stephenson
Tricia A. Stephenson
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