Submission 2313
SUBMISSION TO THE SENATE COMMUNITY AFFAIRS LEGISLATION COMMITTEE
NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
Introduction
I am writing as a single, disabled parent to a disabled, transgender child. Both my daughter and I are NDIS participants, and this Bill poses a serious risk to both of us - independently and together.
I am Autistic (Level 2), and also live with POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), Hypermobile Spectrum Disorder (with a pending assessment for Hypermobile Ehlers Danlos Syndrome), adenomyosis, hypothyroidism, fibromyalgia, chronic fatigue, and chronic migraines with aura. My conditions are complex, fluctuating, deeply interconnected, and share many overlapping symptoms. I am on the NDIS as an Autistic person, but my day-to-day capacity is shaped by all of these conditions simultaneously.
My daughter is 12 years old, Autistic (Level 2), has ADHD (combined type), and suspected Developmental Coordination Disorder (DCD). She is also transgender - which impacts her experiences as a disabled person, contributes to the complexity of her support needs, and creates additional barriers to accessing disability supports. Whatever one’s view on trans issues, I hope we can agree that she is a child with high, complex disability needs who faces barriers that the average child does not.
Due to my daughter’s complex needs, I am her sole carer. Since leaving an abusive marriage a few years ago, we have had no family support network. Our NDIS supports have been critical to our survival, enabling us to function, learn, and live independently.
I am writing about four aspects of this Bill, all of which apply to our circumstances.
Schedule 1: Functional capacity assessed without supports
Schedule 1 of the Bill inserts a new definition of ‘functional capacity’ into the NDIS Act. It defines a person’s functional capacity as their ability to undertake an activity “without assistance from other people, assistive technology or modifications” and “in a context that excludes, as far as possible, the impact of the person’s environmental and personal circumstances.” This definition will apply to all determinations about whether a person meets the disability or early intervention requirements, including at reassessment. This directly misrepresents how both my child and I actually function - and would lead to a profoundly inaccurate picture of our support needs.
My daughter’s recent reports to the NDIS found that she scores lower than 95% of her same-aged peers across all developmental and functional domains. That result is achieved with supports in place: from myself, her current NDIS supports (including an occupational therapist, speech therapist, psychologist and dietitian), and her paediatrician. Her assessed clinicians have found that even with this level of support, her capacity remains significantly below her peers. My daughter’s Functional Capacity Assessment also noted the high level of masking she undertakes and the negative impact this has on her wellbeing and functioning - something that was only recognised by an experienced Occupational Therapist over multiple
Submission 2313
sessions and an extended period of rapport-building. Removing supports from the assessment picture would not reveal a truer picture of my daughter’s needs - it would obscure them entirely. If she appears to have low needs in a snapshot assessment, it would at best reveal her supports are working.
The same applies to me. My capacity and needs vary significantly and are severely impacted by everyday activities - like whether I showered, whether I prepared a meal, whether I left the house, how many meetings I have, or how hot or humid it is that particular day. I have learned to adapt by using a shower chair, sitting while preparing medication and meals, sitting while brushing my teeth, opting for video calls over audio calls where possible, and doing online shopping. Access to support workers has changed my life - notably improving my capacity and independence. My NDIS supports and environmental adaptations are why some days I might appear more functional, particularly given my many invisible illnesses and disabilities. Assess me without these supports and adaptations, or on a day when I haven’t experienced many triggers, and the assessment would be profoundly inaccurate. My support team understands the fluctuating nature, the significant impact of environments and triggers, and the complexity of my disability - which is what allows them to capture a true reflection of my needs and suggest effective and sustainable supports.
I ask the Committee to remove the requirement that functional capacity be assessed ‘without assistance,’ and instead require assessments to reflect how a person truly functions in their daily life with their existing supports in place. I also ask the Committee to protect the requirement for allied health and treating professional evidence in all access, planning and reassessment decisions. This is not only best for participants but will protect governing agencies from the risk of causing further harm and injury to participants.
Schedule 1, Part 3: Co-occurring conditions cannot be separated from Autism
Schedule 1, Part 3 requires that funded supports arise ‘directly’ from the impairment for which a person was assessed. Previously, the word ‘directly’ was not present. This change will apply to all new plans and to decisions made on review of earlier decisions. For both my daughter and me, this is clinically unworkable.
I am on the NDIS as an Autistic person. But my daily functioning is shaped by POTS, MCAS, fibromyalgia, chronic fatigue, and Hypermobile Spectrum Disorder - conditions that commonly co-occur with Autism, interact constantly with my Autistic presentation, and share symptoms with Autistic burnout. My fatigue is not separable into an ‘Autistic fatigue’ component and a ‘POTS fatigue’ component. My sensory sensitivities interact with my MCAS reactions. My executive functioning difficulties are compounded on days when my pain levels are high or my heart rate is dysregulated. My support team needs to understand how these conditions interact with and exacerbate my disability as an Autistic person. The support I receive needs to address me as a whole person - because I am a whole person.
Under this Bill, the NDIA could determine that support for my fluctuating, multi-system disability does not ‘directly’ arise from my Autism diagnosis. My needs and functioning would not change, but my funding could be removed. I also have serious concerns about the subjectivity involved in asking an administrative decision-maker to determine whether a support need originates in one disability or another - especially when conditions overlap in symptoms and frequently co-occur.
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My daughter’s situation is similar. She is on the NDIS as an Autistic person, but her ADHD, suspected DCD, and associated sensory and executive functioning difficulties cannot be neatly separated. Her supports cannot be effective or sustainable if they do not consider her as a whole person. Autistic people are not a monolith - by definition we are on a spectrum - and need to be seen and supported as such.
Our personal experiences of challenges connected to Autism being exacerbated by our co-occurring conditions are not rare. Research published in the Journal of Autism and Developmental Disorders (Guan et al., 2021, PMC10124270) confirms that the majority of Autistic people have at least one co-occurring condition. These issues are deeply intertwined, overlapping, and inseparable.
I ask the Committee to remove the word ‘directly’ from the amendment and restore the NDIA’s obligation to fund support for the whole person, not just a single diagnosis in isolation.
Schedule 1, Part 8: The ‘appropriate treatment’ requirement
Part 8 of Schedule 1 inserts new subsections in the NDIS Act that change what it means for an impairment to be ‘permanent’. Under the new provisions, an impairment will not be considered permanent unless: the person has undertaken ‘appropriate treatment’ for it; any further treatment is unlikely to materially improve or alleviate the condition; and the impairment is likely to persist for the person’s lifetime. Crucially, the new section explicitly states that treatment may be considered ‘appropriate’ regardless of whether the person’s individual financial circumstances or geographic location prevent them from accessing it.
My disability, Autism, is a lifelong neurological condition. There is no evidence-based treatment that removes or resolves it. The therapies I access support me to manage daily life - they do not and cannot eliminate the underlying condition. Even seeking diagnosis, let alone treatment, is an expensive and challenging exercise, particularly for those of us outside major cities. After being on a wait list for months, I was ‘lucky’ to be assessed and diagnosed as Autistic before my divorce - otherwise I would not have been able to afford to seek diagnosis as the single, disabled parent I am today.
I also have a number of co-occurring conditions not yet listed on my NDIS plan. The diagnosis and treatment of these lifelong conditions require multiple clinicians and the trialling of multiple medication combinations - which are expensive and difficult to access when you live outside a major city. Despite actively pursuing diagnosis and treatment, I face significant structural barriers. I have been on a waitlist for over 12 months for my hEDS assessment. My treating cardiologist - whom I access via telehealth - has clinically identified that I have POTS and is treating me accordingly. However, he is unable to give me a formal POTS diagnosis because the NASA lean test currently required for diagnosis must be conducted in-clinic, and no clinic can currently accept at-home tests or wearable data, even where that data is clinically substantive. I have made use of mental health plans, allied health plans and every accessible support Medicare offers. Under this Bill’s test, I could be told I have not completed ‘appropriate treatment’ - not because I have refused to pursue options, but because those options are not accessible to me. These are failures of the healthcare system through no fault of my own - and yet I would be penalised for them, with the likely result that my conditions deteriorate and the burden on healthcare and social welfare systems increases, the opposite of what this Bill claims to achieve.
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I ask the Committee to amend the Bill so that treatment only counts as ‘appropriate’ if it is genuinely accessible to that person given their finances, location, and medical circumstances. I also ask the Committee to explicitly confirm in the legislation that Autism is a permanent, lifelong neurological condition for which no curative treatment exists.
The cumulative gendered impact: a single disabled mother losing her last foothold in the workforce
I want to speak plainly about the gendered economic harm this Bill will cause - because I am living its intended outcome in advance, and I can predict what these changes will do.
I am a single parent. I receive a single parent pension and carer’s allowance. My primary role
- seven days a week - is caring for and homeschooling my daughter, who has high and complex needs. I homeschool her because mainstream schooling was not safe for her: she was bullied and traumatised, leading to panic attacks, suicidal thoughts, self-harm, and school refusal from as young as eight years old. These experiences were directly related to her being Autistic and transgender - the combination of both identities made it extremely difficult to find environments that were genuinely safe for her. I am therefore her school, her NDIS and practitioner coordinator, her advocate, her scheduler, her cook, her carer, and her parent - all at once.
My current NDIS supports have helped me build a small amount of capacity beyond that. I am sometimes able to take on casual work in research and virtual assistance, from home, in the limited hours when my symptoms allow and when my daughter is occupied. I am highly educated - with a bachelor’s, honours, and master’s degree - yet I cannot work full time. I no longer have a career. But thanks to my NDIS supports, I have a foothold: a small income, a connection to the workforce, a sense of professional identity, and a small superannuation contribution - all of which matter enormously to a single woman who has escaped abuse and is on a pension in her forties with a precarious financial future.
The proposed changes in this Bill will take that foothold away.
The new subsection in Schedule 1, Part 6 (subsections 34(1G), 34(1H) and 34(1J)) creates a legal presumption that parents are responsible for providing ‘substantial care and support’ for their children - defined to include supervision, personal care, transport, emotional support, behavioural support, and other assistance with daily living. It then directs the NDIS not to fund supports whose primary purpose is to reduce burdens on parental time below what is ‘reasonably expected of a parent,’ improve household efficiency, or give effect to a parent’s preference for support to be provided other than by parental care. If my daughter’s supports are reduced under these provisions, I will absorb the difference. The burden does not disappear. It transfers to me - someone who is also disabled, who cannot drive to access supports, and who is already struggling to maintain her own functioning and her foothold in the workforce.
If my own supports are reduced - because I am assessed without my supports in place under the new functional capacity definition or because the NDIA determines that my co-occurring conditions do not ‘directly’ arise from my Autism - I will have less capacity to function at all. Less capacity to work. Less capacity to care for my daughter. Less capacity to maintain the household. I am also in the demographic most at risk of homelessness, and the removal of these supports - in the context of the current cost-of-living crisis - materially increases that risk.
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The NDIA’s quarterly data from March 2025 revealed that carer employment rose 6 percentage points - from 46% to 52% - with access to the NDIS. This documents a direct relationship between funding and workforce participation. These changes will reverse that. More people who are already struggling will become unemployed. Research consistently shows that primary carers are disproportionately women - women who will lose income, superannuation, and social connection as a result.
I also want to note that my support workers and almost all of my support team - for both myself and my daughter - are women. Not because we sought out women providers, but because most of the providers available to us were women. If funding is reduced across the scheme, they lose work too. The gendered harm of these changes flows through the entire system: to disabled women, to women who care for disabled people, and to women who provide disability support as workers.
I ask the Committee to: • Remove subsections 34(1G), 34(1H) and 34(1J) from the Bill • Require a gender impact assessment of all proposed changes before this Bill proceeds • Commission modelling of the effect on carer workforce participation if the proposed funding reductions are implemented • Consider the flow-on effects of these changes on employment rates, hospitalisation rates, homelessness, and other social outcomes • Recognise that the cumulative effect of these changes - the new functional capacity definition, the ‘directly’ requirement, the ‘appropriate treatment’ test, and the parental responsibility presumptions - will fall disproportionately on women, and will particularly harm single disabled mothers and their children.
Conclusion
My daughter and I are not rare or edge cases. We are the people this scheme was designed to support: people with genuine, complex, lifelong disability needs, for whom adequate support makes the difference between functioning and not functioning. We are already struggling. Our NDIS supports do not only sustain our functioning and wellbeing - they build our capacity to participate in education, the workforce, and the community. Prior to her NDIS supports, my daughter was suicidal. She was eight years old. With the move to home education and access to NDIS supports, her wellbeing has improved significantly. I plead with you to consider people like us when reviewing this Bill.
I ask the Committee to oppose this Bill in its current form, and to recommend substantive amendments that protect the right of every participant to be assessed as an individual, with their real supports and real conditions fully in view.
I also ask the Committee to reflect on what genuine consultation with the disability community could achieve. This Bill was introduced on 14 May 2026 and the submission window for a 113-page Bill originally closed on 29 May - a 15-day window granted to a community that includes many people with cognitive, energy-limiting, and communication-related disabilities. That is not consultation. It is compliance with the form of consultation. Disabled people and their families are not simply respondents to reform proposals. We hold the most detailed first-hand knowledge of where the scheme works, where it fails, and where genuine savings could be made without causing harm.
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consultative process - one in which we are partners in designing reform rather than subjects of it - would be both more effective and more just. I hope the Committee will recommend that such a process occur before this Bill is allowed to proceed.
I understand the desire to address inefficiencies and poor practices in the scheme. But I do not understand how the changes in this Bill achieve that, when it is NDIS participants who will bear the greatest costs. If the Government is serious about a sustainable NDIS, it needs our expertise at the table - not our compliance after the fact.