National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
SUBMISSION TO THE Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: Name Withheld Primary Carer and Academic Victoria
Executive Summary
This submission is made by the mother and primary carer of a 35-year-old son with profound intellectual and physical disabilities, and an and academic. It is grounded in direct, lived experience of systemic NDIS failure, and informed by the WHO Global Report on Health Equity for Persons with Disabilities (2022), Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (CRPD), the findings of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2023), and Australia’s own Disability Strategy 2021–2031.
My son has cerebral palsy, progressive scoliosis, an intellectual disability, level three autism, complex post-traumatic stress disorder (CPTSD), and a neurogenic bladder requiring scheduled toileting every three hours to prevent kidney reflux and failure. He also has nasopharyngeal incoordination and a soft tissue cleft palate, which creates significant aspiration risk. He needs assistance with all activities of daily living. The CPTSD was not a pre-existing condition; it resulted from fourteen months of sexual abuse by a male support worker during his stay in NDIS-funded Supported Independent Living (SIL), as well as physical assault and intimidation by another resident.
My son’s original NDIS funding package was wholly inadequate, a fact the system did not correct until I, his primary carer, sustained a medical injury that made it physically impossible for me to continue providing care, not because of the severity of his disabilities, but because of the inadequacy of his plan.
Since my medical injury nearly four years ago, I have fought to rebuild something resembling a life. To find a way to still be present for my son, even though I can no longer care for him physically. To have him near me, because I am his person and he is mine. As the parent of an adult child with a disability, I have carried the fear of what would happen to him since the day he was born.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
When the NDIS came in, I was sceptical. I had already watched the system fail us too many times to trust it easily. But slowly, carefully, it began to offer something I had not expected. Hope. The possibility that if I could just get the right supports in place, get him back into his day program, rebuild what we lost, everything might be okay.
This Bill takes that hope away. It pulls the rug from underneath people who were only just finding their footing. For my son and for me, that is not a policy consequence. It is devastating.
The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 would, if passed in its current form, entrench the exclusion and isolation of people with disabilities across Australia. It removes choice, agency, and autonomy, making each of the conditions that enabled my son’s abuse more likely for hundreds of thousands of other Australians. It is a submission about what happens when the law abandons its human rights obligations in the language of budget management.
The submission argues that the Bill:
• Violates Australia’s binding obligations under the CRPD, in particular Articles 19, 25, and 26; • Contradicts the findings and recommendations of the Royal Commission, which the Government itself cites as justification for the legislation; • Directly undermines Australia’s Disability Strategy 2021–2031 and the objects of the NDIS Act 2013; • Is inconsistent with the evidentiary standards established by the WHO Global Report on Health Equity for Persons with Disabilities (2022); • Will predictably increase the rate of abuse, neglect, and preventable health decline among NDIS participants; • Will impose systemic and uncosted financial burdens on other areas of government expenditure, particularly Centrelink, Medicare, state mental health services, and the justice system. The submission calls on the Committee to recommend that the Bill not proceed in its current form and provides specific recommended amendments.
Part 1: The Legal and Human Rights Framework
1.1 Australia’s Obligations Under the CRPD
Australia ratified the United Nations Convention on the Rights of Persons with Disabilities in 2008. The CRPD is not aspirational. It is binding international law, and it establishes the minimum standard against which this Bill must be assessed.
The Bill’s provisions directly engage the following CRPD articles:
Article 19 — Living independently and being included in the community: States Parties must ensure that persons with disabilities have access to a range of in-home, residential, and other community support services, including personal assistance necessary to support living and inclusion in the community. The Bill’s proposed 50 per cent reduction in funding for social, civic, and community participation is a direct and categorical restriction on the supports that enable community inclusion. CRPD Committee General Comment No. 5 (2017) makes explicit that reducing or withdrawing support services that enable community participation constitutes a violation of Article 19.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
Article 25 — Health: States Parties must ensure that persons with disabilities have access to the same range and quality of health services as other persons, without discrimination based on disability. The proposed amendment to Section 3(1)(d) of the NDIS Act - inserting the qualification ‘so far as is consistent with the financial sustainability of the scheme’ - creates a legal basis for denying health-related supports on budgetary grounds. This is directly inconsistent with Article 25’s prohibition on discriminatory denial of health care.
Article 26 — Habilitation and rehabilitation: States Parties are required to organise, strengthen, and extend comprehensive habilitation and rehabilitation services that support maximum independence and full inclusion. The change from ‘arising from’ to ‘arising directly from’ an impairment in the definition of fundable supports threatens the funding of secondary conditions, including CPTSD arising from trauma sustained within the NDIS system itself, that are clinically and causally connected to the primary disability.
Article 28 — Adequate standard of living: States Parties must ensure equal access to social protection programmes and poverty reduction initiatives. The codification of parental responsibility in the Bill’s amended reasonable and necessary supports framework, combined with the 50 per cent community participation cut, will force carers, including carers with their own disabilities, into reduced employment, increased dependency on welfare systems, poverty and, in some cases, continued exposure to domestic violence.
The objects of the NDIS Act 2013 (Section 3) explicitly state that the Act gives effect to Australia’s obligations under the CRPD. A Bill that amends the NDIS Act in ways that contradict CRPD obligations is internally inconsistent with the statute it purports to amend.
1.2 The WHO Global Report on Health Equity for Persons with Disabilities (2022)
The WHO Global Report on Health Equity for Persons with Disabilities, published in 2022, provides the evidentiary and ethical framework against which the health equity implications of this Bill must be assessed. The Report is directly relevant to Australia: it specifically cites Australia’s Disability Strategy 2021–2031 as a model national commitment to disability health equity.
The Report documents that persons with disabilities globally experience a mortality gap of up to 20 years compared to the general population, that those with intellectual disabilities face a six-fold higher rate of deaths amenable to quality health care, and that the COVID-19 pandemic, during which the abuse of my son came to light and during which his court case proceeded, substantially worsened existing health inequities for people with disability.
This Bill directly violates the Report’s three recommended implementation principles:
Principle 1 — Health equity at the centre of any health sector action: The Bill’s amended Section 3(1)(d) does the opposite. It places financial sustainability at the centre, and health equity is explicitly made subordinate to it.
Principle 2 — Empowerment and meaningful participation: The Bill was introduced on 14 May 2026, with the Senate Inquiry given approximately one month to report. The disability community, including people with complex communication needs, those in trauma, and carers with their own disabilities, has been given no meaningful time to participate. The WHO Report states that participation must be genuine, not procedural.
Principle 3 — Monitoring and evaluation: The Bill’s automatic plan renewal provisions eliminate the review processes that constitute minimum monitoring of whether health equity is being achieved. Demonstrably inadequate plans, as my son’s original plan was, will auto- renew with no assessment. This is the antithesis of evidence-based monitoring.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
1.3 The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability
The Government states that this Bill implements recommendations of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability (2023). This claim requires scrutiny.
The Royal Commission found that inadequate funding, lack of participant voice, poor provider oversight, and the isolation of NDIS participants in inadequately supervised settings were primary contributors to the abuse, neglect, and exploitation it documented. My son’s case is a direct case study in those findings. He was placed in SIL accommodation with funding that was inadequate from the outset. The abuse that followed, sexual abuse by a support worker, occurring three times per week over fourteen months, was only disclosed because I, as his primary carer, had established sufficient trust and communication with my son to enable that disclosure eventually. The system did not identify it.
The Royal Commission’s recommendations called for increased safeguards, better-resourced planning, stronger participant rights, and more robust oversight. This Bill:
• Cuts the social participation supports that give participants visibility in the community and connection to trusted people outside potentially abusive settings; • Reduces access to plan reassessments, making it harder for participants or carers to escalate concerns through the planning process; • Introduces automated decision-making that removes the human judgment the Royal Commission identified as essential to safeguarding. • Codifies the expectation that family carers will provide primary support. This is despite the Royal Commission specifically finding that carer dependency and inadequate formal support were risk factors for abuse and exploitation; • Allows plan suspension and revocation when a participant is not contactable, which is a provision that will disproportionately affect people in crisis, people who have been institutionalised, and people in abusive or unsafe situations who may not have control over their own communications. The Government cannot simultaneously invoke the Royal Commission as justification for this Bill and ignore the Commission’s core finding: that the conditions this Bill will entrench are the conditions that produce abuse.
1.4 Australia’s Disability Strategy 2021–2031
Australia’s Disability Strategy 2021–2031 was first signed by all Australian governments in 2021 and updated in January 2025 following a review recommended by the Royal Commission. Every First Minister signed the updated Strategy. Its core outcome commitments and guiding principles remained unchanged. This Bill was introduced sixteen months later and conflicts with those commitments in five specific ways.
- The Strategy’s Personal and Community Support Outcome Area states that the NDIS provides eligible people with permanent and significant disability with access to reasonable and necessary disability supports, and that people with disabilities can access supports that meet their needs. The Bill introduces a financial sustainability qualifier into the NDIS Act’s objects, restricts the definition of fundable supports to those arising directly from an impairment, and introduces automated decision-making to determine what supports are reasonable and necessary. The Strategy commits to need-based access. The Bill introduces budget-based constraints on that access.
- The Strategy’s Inclusive Homes and Communities Outcome Area states that people with disabilities can fully participate in social, recreational, sporting, religious, and cultural life, and that social support enables them to participate in many facets of life.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
The Bill reduces social, civic and community participation funding by 50 per cent from October 2026 by ministerial determination, without individual assessment. The Strategy commits to full community participation. The Bill halves the funding that enables it. 3. The Strategy’s Safety, Rights and Justice Outcome Area states that people with disabilities are safe and feel safe from violence, abuse, neglect and exploitation, and cites Royal Commission findings that people with disabilities fare worse in institutional contexts and are more likely to be victims of crime. It further states that strong relationships and social support networks can prevent harm and counter social isolation for people in supported accommodation. The Bill cuts community participation supports, codifies parental responsibility as a planning consideration, and introduces plan suspension and revocation for non-contact. The Strategy identifies connection, visibility and adequate formal support as safeguards against abuse. The Bill reduces all three. 4. The Strategy’s Health and Wellbeing Outcome Area states that people with disability attain the highest possible health and well-being outcomes throughout their lives, and that poorer health outcomes are not an inevitable consequence of disability but a consequence of inadequate access to support and care. The Bill’s treatment-first permanence requirement, its restriction of fundable supports to those arising directly from an impairment, and its automated planning system will reduce access to the therapeutic and health-related supports that determine health outcomes for people with complex disabilities. 5. The Strategy’s Guiding Principles, adopted by all signatory governments and derived from CRPD Article 3, include Principles 1: respect for individual autonomy and the freedom to make choices, and 3: full and effective participation and inclusion in society. The Bill removes participant choice over plan managers and support coordinators, replaces human planning with automated systems, and restricts the ability to challenge decisions. The Strategy enshrines autonomy and participation as governing principles. The Bill restricts both in practice.
- The Strategy’s Outcomes Framework, which the government committed to report against quarterly, measures social participation, choice and control, safety from violence, adequacy of carer support, and whether support needs are fully met. The Bill’s provisions will drive each of these measures in the wrong direction. The government will be required to report publicly on the deterioration their own legislation caused.
Part 2: Lived Experience — What This Bill Means in Practice
2.1 My Son’s Disabilities and Support Needs
My son is 35 years old. His diagnosed conditions include mixed cerebral palsy (Athetoid-Ataxic type), progressive scoliosis, intellectual disability, autism spectrum disorder (level three), complex post-traumatic stress disorder, and a neurogenic bladder requiring active bladder management - he must be reminded to urinate every three hours to prevent urinary reflux and the risk of kidney failure. He has nasopharyngeal incoordination and a soft tissue cleft palate that creates a significant and ongoing aspiration and choking hazard. He requires assistance with all activities of daily living. He is entirely dependent on formal and informal support for his safety.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
He has scoliosis, confirmed by a treating doctor, and it is visibly progressive. Over recent years, his posture has changed noticeably, with increasing lateral curvature, head tilt, and shoulder elevation. This is a recognised secondary complication of cerebral palsy. It affects his positioning, seating, and comfort during daily care.
Although the underlying brain lesion of cerebral palsy does not progress, the physical consequences do. Research indicates that scoliosis in adults with cerebral palsy progresses at an average rate of 1.4 to 3.5 degrees per year after skeletal maturity, and that mobility decline accelerates significantly between ages 30 and 40. My son is 35. He can currently walk short distances with aids. Without consistent physiotherapy and adequate formal support, the evidence indicates he will lose that mobility. His support needs will increase.
As a direct consequence of his nasopharyngeal incoordination and soft tissue cleft palate, my son requires a modified soft food diet. He is not tube-fed, but standard textures present a real and serious aspiration risk. Every meal must be specifically prepared by someone who understands that risk. He cannot prepare his own food. His physical and intellectual disabilities make that impossible. This is not a peripheral support. It is three times a day, every day, without exception.
His bowel function further complicates his bladder management. If he does not have a bowel motion daily, this directly affects his bladder, increasing urinary retention. In a person with a neurogenic bladder, urinary retention is not a minor discomfort. It compounds the existing risk of urinary reflux and kidney failure. Daily bowel management is therefore not a quality-of-life support. It is a medical necessity with life-threatening consequences if it fails.
His support needs do not arise from a single condition. They arise from the interaction of multiple conditions. His CPTSD, for example, is not incidental to his other disabilities; however, it profoundly affects his capacity to engage with support workers, to access his day program, and to live safely in any context that requires him to trust other people. It arose directly from a failure of the NDIS system to fund his care and ensure his safety within it adequately.
My son has the capacity to speak. However, his voice is severely affected by the combined impact of his cerebral palsy and his nasopharyngeal incoordination and soft tissue cleft palate. Most people cannot understand his speech, and many perceive him as nonverbal. When he is not understood, he becomes functionally unable to communicate - then he shuts down entirely. This made him significantly more vulnerable to the abuse he experienced in his SIL’s accommodation. His abuser understood that he could not make himself understood to others, that attempts to disclose would likely be dismissed or misread, and that the communication breakdown itself would protect the perpetrator. It did, for fourteen months.
My son is acutely aware of his own vulnerability. He knows that he has been harmed before. He knows that he depends entirely on other people for his safety and his care. He knows that he has no family network beyond me and that I am unwell. He cannot independently summon help, manage his own communications, or navigate the systems that are supposed to protect him. He lives with that knowledge every day. This is not a man without insight. This is a man who understands precisely how exposed he is, and who has no means to reduce that exposure without adequate formal support.
2.2 The Original NDIS Package: A Systemic Failure
My son’s first NDIS package was, in the most direct terms, inadequate. For a man with the complexity of needs I have described, this represented a near-total failure to engage with his support requirements. He received no meaningful support for his communication needs, his aspiration risk, his bladder management in social settings, or his capacity to build the social connections that, as the WHO Report documents, are fundamental to health equity for persons with disabilities.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
For years, I compensated for this inadequacy personally, while maintaining full-time employment. I provided the care that the system refused to fund. I was able to do this until I was not. The system did not respond to my son’s needs. It responded to my incapacity.
2.3 The Assessment Process: Misinformation, Trauma, and Wasted Resources
When my son first entered the NDIS, we were told by NDIA staff that we did not need to provide reports upfront but that we should get the plan first and provide reports afterwards if required. We followed that advice. It was wrong. The consequence was an initial plan that was wholly inadequate, because it was not grounded in the clinical evidence that should have informed it from the outset.
What followed was well over a year of attempting to obtain the functional capacity, occupational therapy, speech therapy, physiotherapy and clinical psychologist reports that the system then demanded. For functional capacity reports, three separate assessors from multiple organisations were engaged over the course of more than a year. One was repeatedly cancelled and never attended. A second arrived from an organisation, conducted part of an assessment, and did so in a manner that caused my son significant distress. She assessed him as an object, cataloguing his deficits in a negative frame and clinical language, pointing out his inadequacies in his presence, with no regard for his dignity or comprehension. My son became visibly distressed. I asked her to stop and leave. The organisation subsequently invoiced us for thousands of dollars for a report that was never completed or delivered. We paid for an assessment that traumatised my son and produced nothing. A third assessor was eventually engaged, began the report, went on leave, and never completed it. We were back to square one. Eventually, we found an occupational therapist to do his report.
This is not an administrative inconvenience. This is what the assessment process does to people with profound intellectual and physical disabilities. Peer-reviewed research documents that functional assessments for people with intellectual disabilities are experienced as distressing, stigmatising, and dehumanising and are associated with deterioration in mental health and feelings of powerlessness. My son’s experience confirms that research precisely. With the pending changes to the NDIS, he has expressed his fear relating to reassessment owing to these traumatising experiences.
His conditions are permanent. They will not be cured. However, with consistent physiotherapy, occupational therapy, speech therapy, psychotherapy and appropriate clinical support, their progression can be managed and delayed. Research on adults ageing with cerebral palsy suggests that therapeutic interventions slow mobility decline, manage scoliosis progression, and maintain functional capacity for longer. Without that intervention, deterioration accelerates. The clinical evidence does not produce a different answer about whether he has these conditions. It yields a different estimate of how quickly they worsen.
Why is he being assessed again? Why is funding that could support him being spent on assessors who may cancel, who may traumatise him, and who may never deliver the report? Why is a man with a profound and permanent disability being repeatedly subjected to a process that research shows is harmful, to confirm what every clinician who has ever seen him already knows?
The Bill’s new framework, proposing yet-to-be-developed or validated automated assessments, tightened permanence requirements, and mandatory treatment exhaustion, does not make this process any less traumatic. It makes it more frequent, less human, and harder to challenge when it goes wrong.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
2.4 Supported Independent Living and the Abuse
In late 2018, my son was offered Supported Independent Living in a group home with three other residents with neurodevelopmental and intellectual disabilities.
My son’s move into Supported Independent Living was not a straightforward choice. It was shaped by two failures running simultaneously. His original NDIS package was so inadequate that I could not both provide his care and maintain the employment that paid our mortgage and overheads. And at that time, I was attempting to leave a domestically abusive relationship. I believed my son would be safer in supported accommodation than in a home I was trying to escape. I supported his move on both of those grounds. That is the context in which everything that followed occurred. The abuse, the unsafe placement, the fourteen months of harm - none of it would have happened had his original package reflected his actual needs, or had the system provided the support that would have allowed us both to be safe. The system failed him twice before he even walked through that door.
My son lived in that SIL accommodation for fourteen months. Over the course of those fourteen months, he was sexually abused by a support worker. The abuse occurred at bath time, every time that worker was rostered on (three days per week) after the second worker had left the shift at 7 pm. My son was alone with his abuser, in a funded care setting, under a system that had been advised by the Royal Commission’s precursors and its own review processes that oversight of lone-worker situations was a critical safeguard gap.
My son eventually disclosed the abuse to me (after 14 months). He was able to tell me it happened every time that person worked. He could not provide dates or times of specific incidents owing to a cognitive limitation that is entirely consistent with his intellectual disability and autism. The case proceeded to court across the COVID period. It was dismissed due to an administrative error arising from my son’s inability to specify dates. His abuser was not convicted and continues to work in the disability field.
The SIL placement was unsafe before my son arrived. The vacancy existed because the previous resident had assaulted another resident so severely that the person spent three months in hospital. This incident was not disclosed before he moved in.
One of the four residents was a large nonverbal man whose size and unpredictable behaviour terrified my son. My son is five feet tall and weighs fifty kilograms. The house installed a lock on his bedroom door so he could lock himself inside for safety from another resident in his own home. On one occasion, the resident grabbed my son, dragged him down the hallway, and bit deeply into his hand, tearing tissue. The support worker on duty did not intervene. My son sent me a photograph the next morning. He needed a hospital visit to rule out a fracture.
Out of fear, my son stopped eating at the communal table. Staff set up a corner table so he could sit facing the wall. Eventually, he retreated to eating in his room. Staff permitted this despite it being a direct breach of his dysphagia safety protocols. The system knew about all of it. It did nothing.
My son returned to my care in early 2020. He was subsequently diagnosed with CPTSD and underwent and continues to receive therapy for these events. The diagnosis is not separate from his other disabilities. It is a consequence of those disabilities intersecting with a system that failed to protect him.
During this period, the NDIS Quality and Safeguards Commission made intermittent contact with me to inquire about the progress of the court case. They requested that I provide them with court documents so that they could investigate whether the perpetrator should be permitted to continue working in disability support. The responsibility for that investigation was placed upon us, on a family already navigating a criminal court process across a pandemic, caring for a man with profound disabilities who had been sexually abused, and managing the trauma that followed. The Commission did not lead that process. We were asked to feed it.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
This is the same Commission that this Bill proposes to strengthen by expanding its powers. The Committee should consider what strengthened powers mean in the hands of a body that, when confronted with a clear and documented case of participant abuse, asked the victim’s family to do its investigative work for it.
2.5 The Consequences: CPTSD, Isolation, and the Collapse of Trust
Since 2020, my son has not had male support workers. He has had a significantly reduced capacity to access his day program. His social world contracted sharply. The community participation support he has received in recent years, the support this Bill proposes to cut by 50 per cent, has been the primary mechanism by which he has rebuilt social confidence, community connection, and quality of life.
The WHO Report documents that social participation is not a discretionary add-on to disability support. It is a determinant of health. Isolation is associated with higher rates of secondary health conditions, premature mortality, and, with devastating relevance to my son’s history, increased vulnerability to abuse. People who are visible in their communities, who have trusted relationships outside their immediate care setting, who their neighbours and local services know, are harder to abuse without consequence.
My son is only now, years after the abuse, beginning to rebuild that visibility. This Bill would cut the funding that makes it possible.
2.6 My Own Situation: Carer Disability, Medical Injury, and Domestic Violence
In 2022, I sustained a permanent medical injury that has left me with severely limited physical capacity. I now have approximately three hours of upright time per day. I cannot bend, twist, or lift heavy objects. I am, by any functional measure, a person with a permanent disability. I moved to this area specifically to enable my son to access a day program, which he attended for fifteen years. Because of the abuse he experienced, my medical injury, and the disruption of the COVID period, he lost his place in that program. Despite my best efforts, he remains on a waiting list and has not been able to return. In losing access to that program, he lost far more than a daily routine. He lost a community he had been part of for fifteen years, the transport that came with it, and the allied health supports embedded within it, including physiotherapy and speech therapy. These losses compound his isolation and his clinical needs simultaneously. He now relies on one-to-one support every day, rather than the balance between individual outings and a group program that was working well for him. This situation will worsen. Many programs of this kind closed when the NDIS was introduced, reducing the options available to people like my son. The loss of his day program place is not a lifestyle inconvenience. It is a direct consequence of compounding system failures and is irreversible. I am an academic. I teach online. I use my upright time (approximately 3 hours a day) four days per week, to earn the income that pays my mortgage and overheads. My capacity to work depends on my son having adequate formal support during those hours. I am a survivor of domestic abuse. I left my husband due to a pattern of domestic abuse. I remain dependent on his assistance with my son’s care. This is not an arrangement I have chosen. It is an arrangement imposed on me by the system’s inadequacy.
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
Part 3: Specific Provisions — Analysis and Impact
3.1 The Change from ‘Arising From’ to ‘Arising Directly From’ an Impairment
Schedule 1, Part 3 of the Bill changes the threshold for fundable supports from those ‘arising from’ an impairment to those ‘arising directly from’ an impairment. No definition of ‘directly’ is provided. No guidance has been issued. No impact assessment on secondary conditions has been published.
My son’s CPTSD does not arise in a single linear step from his cerebral palsy or his autism. It arose from the interaction of those disabilities with a system that failed to protect him. Under a strict reading of ‘directly’, a planner or an automated decision system could find that CPTSD supports are insufficiently direct and too many causal steps removed from the primary impairments.
The WHO Report is explicit that disability operates through cascading interactions between conditions and environments. The Report documents that secondary mental health conditions, including anxiety and PTSD, are well-established consequences of living with disability in under-resourced environments. Defining fundable supports as only those arising ‘directly’ from an impairment is clinically illiterate and legally reckless. It will predictably defund the supports that manage the consequences of the primary conditions that the system itself has failed to prevent.
3.2 The 50 Per Cent Cut to Social, Civic, and Community Participation
Schedule 1, Part 4 provides the Minister with the power to issue a determination reducing funding for an entire category of support, by decree, without individual assessment, without parliamentary approval, and without any sunsetting provision. The Government has announced it intends to use this power to reduce social, civic, and community participation support budgets by 50 per cent from 1 October 2026.
This is not a marginal reduction. For my son, it is the difference between rebuilding a social life and retreating to the isolation that both preceded and enabled his abuse. The WHO Report documents that community participation is a determinant of health, not a lifestyle choice. CRPD Article 19 and General Comment No. 5 establish the right to community inclusion as a non-derogable obligation. A 50 per cent cut to the supports that enable that inclusion is not a budgetary adjustment. It is a violation.
Furthermore, the power itself, unchecked, ministerially held, non-sunsetted, is structurally inconsistent with the individuated planning framework on which the NDIS Act was built. Supports are supposed to be reasonable and necessary for the individual. A determination that cuts an entire category by 50 per cent for all 760,000 participants simultaneously is not individualised. It is a blanket measure dressed in the language of administrative efficiency.
3.3 The Treatment-First Requirement for Permanence
Schedule 1, Part 8, provides that an impairment will not be considered permanent unless the person has tried every appropriate treatment available in Australia. The Bill explicitly states that individual financial circumstances and geographic location do not affect whether a treatment is considered appropriate.
My son’s disabilities include conditions for which there is no curative treatment. For those conditions that are manageable, the management depends on consistency of support - support that the system failed to provide adequately for the first years of his NDIS participation. The idea that he should be required to demonstrate exhaustion of treatment options before his permanence is acknowledged is, in his case, academic. In many other cases, it is a barrier
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National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2021
Senate Submission — NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026
that will prevent people in areas where services are sparse, waitlists are long, and the financial burden of seeking specialist treatment is prohibitive from accessing the scheme.
The WHO Report specifically documents that geographic remoteness and financial disadvantage compound health inequities for people with disability. A provision that makes NDIS access conditional on accessing services that the Government has itself acknowledged are inaccessible, as Minister Butler stated in his second reading speech that mainstream services had collapsed, is not a reasonable threshold. It is a barrier built on a contradiction.
3.4 Plan Reviews, Reassessment, and the Right to Challenge Decisions
This Bill makes three distinct and compounding changes to how participants can access, engage with, and challenge decisions about their plans. Each change is harmful in isolation. Together, they constitute a system that is structurally inaccessible to people with complex disabilities.
- Getting a reassessment. Under the current law, a participant can request an unscheduled reassessment when their circumstances change. Under this Bill, that right is replaced with a threshold: a participant must demonstrate a significant and ongoing change in functional capacity that substantially reduces their ability to perform daily activities. The response time doubles from 21 to 90 days. For a participant whose plan has never adequately reflected their needs, this provision does not protect stability. It entrenches inadequacy. A plan that was wrong when it was made will auto-renew indefinitely, and the threshold required to correct it will be beyond the reach of many participants with intellectual disabilities who cannot articulate and document their own functional decline in the terms the legislation now requires.
The WHO Report’s recommended action eight calls explicitly for accountability mechanisms to be integrated into health sector decision-making for people with disabilities. A reassessment threshold that presupposes a participant can self- advocate at a clinical and legal standard is not an accountability mechanism. It is a barrier.
- Engaging in assessments. The Bill introduces automated decision-making as the primary planning mechanism, with the details of how that system works left entirely to ministerial instruments that Parliament cannot disallow or scrutinise. A process will assess participants they cannot see, producing decisions they cannot understand, through instruments that have not been devised. For my son, whose communication disability means he shuts down when not understood. Whose CPTSD means unfamiliar assessment processes cause acute distress. Whose intellectual disability means he cannot navigate complex administrative systems without support, this is not a neutral procedural change – this is discriminatory. It is the removal of the human engagement that makes the process navigable at all.
The assessment tool underpinning this automated system, known as I-CAN v6, is not a finalised, independently validated instrument. It is being used as a basis for the actual support needs assessment, which is still being developed. The Government has allocated $3.3 million to establish a Technical Advisory Group to design the assessment tools. That group has not yet reported. The tools have not been finalised. For participants under 16, there is no assessment tool. Parliament is being asked to legislate a framework built around instruments that do not yet exist, assessed against a budget method that has not been published, processed by an algorithm that NDIA’s own internal staff have formally warned is at critical risk. This is not a new planning system. It is a legislative commitment to a system that nobody has yet designed.
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The WHO Report is explicit that digital technologies and administrative systems must be accessible to people with disabilities. An algorithm that produces a funding decision without visible reasoning or human contact is not accessible. It is invisible.
Beyond automation, participants seeking reassessment must engage with a contact process that the Bill leaves undefined. What constitutes reasonable attempts to contact a participant is not specified. There is no requirement to provide adequate notice, to allow time to obtain clinical reports, or to provide accessible formats before a decision is made. My son’s experience of the original assessment illustrates what happens when the system makes demands without providing the infrastructure to meet them. The Bill makes those demands more stringent while doing nothing to address that infrastructure.
- Challenging decisions. The current pathway of internal review followed by the Administrative Review Tribunal remains formally available. But the Bill narrows what can be challenged and makes the pathway harder to access. Ministerial funding determinations cutting entire support categories are not individually reviewable at the Tribunal. Automated decisions with no disclosed reasoning cannot be meaningfully challenged because there is nothing concrete to appeal against. The reassessment threshold means many wrong plans will never reach the internal review stage at all.
This matters because the NDIA’s own data confirms that the decisions being challenged are overwhelmingly wrong. Ninety-eight per cent of cases that reach the Administrative Review Tribunal settle or overturn before a hearing. That is not evidence of participants gaming the system. It is evidence that the planning system consistently produces incorrect decisions and that participants are using the only available mechanisms to correct them. CRPD Article 13 requires that persons with disabilities have effective access to justice on an equal basis with others. A system that produces wrong decisions at scale and then restricts the mechanisms for correcting them does not meet that standard. It inverts it.
3.5 Codification of Parental Responsibility
Schedule 1, Part 6 codifies parental responsibility as a factor the NDIA must consider before approving funded supports. It requires that the NDIA must not approve supports whose primary purpose is to reduce parental burden below what is reasonably expected.
I am my son’s primary carer. I have a permanent disability. I have three hours of upright time per day. I am a survivor of domestic abuse who remains dependent on her abuser to fill gaps in formal support. Any “support” from this person does not come without consequence. The formal support my son receives is not supplementing my care. It is replacing care that I am no longer physically able to provide.
The Bill’s assumption that informal support networks exist to supplement formal care does not reflect the reality of many families living with profound disability. My son and I have no relatives available to assist us. My mother is eighty years old and estranged. My brother lives interstate. They are the only relatives I have in Australia. We have no friends. This is not an unusual failing on our part. It is what disability does to a family over time. Decades of intensive caring, with needs too complex and too constant for the social world to accommodate, produce exactly this outcome. People stop being invited. People stop calling. Eventually, people stop existing in your life, not out of malice but because the weight of what you are carrying makes ordinary friendship structurally impossible. When my son was a child, I was socially isolated by the demands of his care. When he became an adult, that isolation had become permanent. When I became disabled myself, it became total.
The provision contains no carve-out for carers with disabilities. It contains no recognition of domestic violence as a factor that limits what a carer can reasonably be expected to provide. It assumes a carer who is present, well, and available. In applying a standard of what is
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‘reasonably expected’ without defining what circumstances affect that expectation, the provision will be applied inconsistently, arbitrarily, and, most likely, against the most vulnerable families.
When the Bill requires the NDIA to consider what informal supports can reasonably be expected to provide, the answer in our case is this: one person, who is a danger to us, because there is no one else. Cutting formal support does not activate a reserve. It activates the abuser.
This is not a hypothetical concern. The Royal Commission documented extensively that the informal carer burden is already at breaking point. Legislating a formal expectation that carers will fill the gaps in formal support, with no corresponding investment in the services those carers depend on, is not a saving. It is a transfer of cost from a visible budget line to the invisible economy of carer labour and carer breakdown.
3.6 Plan Suspension and Revocation for Non-Contact
Schedule 1, Part 7 allows plan suspension when a participant is not contactable after ‘reasonable attempts’. After 90 days of suspension, participant status may be revoked entirely. ‘Reasonable attempts’ is not defined. The number, channel, or frequency of contact attempts is not specified.
My son cannot reliably manage his own communications. He is dependent on me, or on support workers, to mediate contact with the NDIA. If I am hospitalised, as I was in 2022, or in a period of acute illness, there may be no one managing his correspondence. Under this provision, the absence of response could result in the loss of his NDIS status.
The provision will fall hardest on the people it most endangers, including people with communication disabilities, people in acute mental health episodes, people in hospital, and people whose carers are unavailable. These are the people for whom the NDIS was created.
The WHO Report is explicit that health emergencies compound existing disability-related health inequities. A provision that punishes non-response to administrative contact during a health crisis is not a safeguard. It is abandonment codified in law.
3.7 Choice and Control Over Support Arrangements
A founding principle of the NDIS Act 2013 is to “enable people with disability to exercise choice and control in the pursuit of their goals and the planning and delivery of their supports.” It was the mechanism by which the scheme was supposed to be different from every prior model of disability service delivery.
From 1 October 2027, plan management moves to a government-commissioned panel model. Participants will no longer choose their plan manager from the open market. From 1 July 2028, support coordination will no longer be funded individually in participant plans. The government will directly appoint providers to deliver a new support coordination and connection service. In both cases, the person who is supposed to work for the participant will instead be appointed by the government.
Studies examining NDIS planning outcomes for people with intellectual disability consistently find that the quality of the planning relationship directly determines the quality of the plan. Good planning outcomes depend on having a credible, consistent, and disability-aware planner with whom the participant has developed a trusting relationship. Participants who developed these relationships used planning to increase independence and social participation. Conversely, participants whose planners did not know them, lacked knowledge of their disability, and were not accountable to them received plans that failed to reflect their actual needs, thereby producing reduced independence, reduced social participation, and, in many cases significant underspending of funding that existed but could
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not be accessed because the plan had been built without genuine understanding of the person it was supposed to serve.
CRPD Article 3 enshrines individual autonomy and freedom of choice as a foundational principle. CRPD Article 19 requires that persons with disabilities have access to support services of their own choosing. A system in which the government chooses who advocates for a disabled person within that system is not consistent with either. It is a reversion to the model the NDIS was created to replace.
The Committee should recommend that participant choice over plan management and support coordination be preserved as a non-negotiable element of any reform, and that any commissioned model include a genuine right for participants to select their preferred provider rather than be assigned one.
3.8 The Cumulative Impact on the Health and Well-being of People with Disabilities in Australia
The provisions analysed in this submission do not operate in isolation. They operate on a population that the WHO Global Report on Health Equity for Persons with Disabilities documents as already experiencing profound and largely preventable health inequity. Inequity that is not explained by the underlying disability itself, but by the structural, social, and systemic conditions in which people with disabilities live.
The WHO Report is explicit. Persons with disabilities die earlier, have poorer health outcomes, and are more affected by health emergencies than the general population. In high-income countries, the mortality gap for people with psychosocial disabilities is 20 years for men and 15 years for women. The annual death rate for people with intellectual disabilities in comparable nations is double that of the general population. Children with intellectual disabilities are eight times more likely to die before the age of 17. A six-fold discrepancy exists between deaths amenable to quality health care in people with intellectual disabilities and those without. These are not outcomes produced by disability. They are outcomes produced by systems that fail to treat people with disabilities as full rights holders.
The WHO Report identifies four categories of contributing factors to these inequities: structural factors, including ableism, stigmatisation, and discrimination embedded in institutions and systems; social determinants of health, including poverty, poor living conditions, social isolation, and violence; risk factors, including the exclusion of people with disabilities from mainstream public health interventions; and health system barriers, including inaccessible services, inadequate workforce training, and discriminatory attitudes by health and care professionals. Critically, these four categories are not independent. They reinforce each other, creating vicious cycles of poverty, exclusion, and poor health.
People with disabilities in Australia already live inside those cycles. They are disproportionately represented among those experiencing poverty, unemployment, housing insecurity, and social isolation. They have higher rates of comorbid physical and mental health conditions, not because of their primary diagnoses, but because the systems that are supposed to support them have consistently failed to do so. The WHO Report documents that ableist belief systems that devalue and limit the potential of persons with disabilities underlie negative attitudes, stigmatisation, and discrimination in health settings and that stigmatisation directly contributes to delayed health-seeking, hindered access to services, increased suicidality among people with psychosocial disabilities, and ultimately to higher mortality and morbidity.
My son lives at the intersection of multiple layers of this inequity. He has cerebral palsy, an intellectual disability, autism, CPTSD, progressive scoliosis, complex swallowing and bladder needs, and a communication disability that causes him to be routinely perceived as having no voice. He has experienced sexual abuse within a funded care setting. He lives with a
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carer who is herself disabled, socially isolated, and dependent on a perpetrator of domestic abuse because the formal support system has been insufficient. He is, in the WHO Report’s terms, among those most left behind - a man for whom the compounding of structural disadvantage, social determinants, and systemic failure has produced health outcomes that are neither inevitable nor acceptable.
This Bill will make each of those contributing factors worse. It will reduce the social participation that is documented as protective against isolation, abuse, and mental health deterioration. It will increase the burden on informal carers who are already at breaking point, driving further carer breakdown and the consequent withdrawal of support. It will restrict access to therapeutic supports that manage the progression of conditions that, without intervention, will produce preventable decline. It will make it harder to correct incorrect plans, harder to challenge automated decisions, and harder for people whose disabilities make administrative navigation impossible without support to access the system at all.
The WHO Report’s overarching conclusion is that health inequity for persons with disabilities is not inevitable. It is the product of policy choices. This Bill is a policy choice. The Committee should consider it in that light, not as a fiscally necessary adjustment to an unsustainable scheme, but as a choice about whether Australia will advance or entrench the health inequities that the WHO, the CRPD, and Australia’s own Disability Strategy have committed to eliminating.
3.9 The Discriminatory Consultation Process
The Committee should note that the consultation process for this Bill is itself discriminatory. The Bill was introduced on 14 May 2026. Submissions to this inquiry closed on 29 May 2026, providing only a 15-day window.
The Australian Government’s own Good Practice Guidelines for Engaging with People with Disability, developed under Australia’s Disability Strategy 2021–2031, require that consultation with people with disability be accessible, allow adequate preparation time, and provide materials in accessible formats, including Easy Read and Auslan. The Government’s own fact sheet for this Bill acknowledged that Easy Read and Auslan versions would be available “in coming weeks,” meaning they were not available during the submission period.
The people most affected by this Bill, people with intellectual disabilities, complex communication needs, and high support needs, and their carers, were structurally excluded from meaningful participation by a process that the government’s own guidelines prohibit. CRPD Committee General Comment No. 7 (2018) is explicit that participation of persons with disabilities in decisions affecting them must be genuine and accessible, not procedural. A fifteen-day window, with no accessible materials, for a 113-page Bill affecting 760,000 Australians fails to meet that standard. The Committee should recommend that the inquiry period be extended to a minimum of twelve weeks, that Easy Read and Auslan materials be produced before any further consultation closes, and that funded support be provided to disability organisations and individuals with disabilities to participate meaningfully.
Part 4: The Fiscal Argument Is Incomplete
The Government projects savings of $37.8 billion over four years from this Bill. This figure represents savings from the NDIS budget line. It does not represent overall savings in government expenditure.
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The Productivity Commission’s original modelling for the NDIS, the modelling that justified the scheme’s creation, was built on whole-of-government cost accounting. The argument was not that the NDIS was affordable in isolation. The argument was that investing in formal disability support would reduce the downstream costs borne by Centrelink, Medicare, state mental health services, hospitals, housing services, and the justice system. The return on that investment was calculated to exceed its cost.
This Bill reverses the logic without reversing the accounting. When parental responsibility becomes the legal default and community participation support is cut by half, the predictable consequences include:
• Carers leaving the workforce: Centrelink bears the cost of carer payments and reduced income tax revenue; • Carer mental health deterioration: Medicare and state mental health services bear the cost; • Participant health decline: hospitals and emergency departments bear the cost; • Increased rates of abuse and exploitation: the justice system, legal aid services, and trauma services bear the cost; • Housing instability: state housing services bear the cost. None of these costs appears in the NDIS budget line. Taxpayers bear all of them. The $37.8 billion is not a saving. It is a redistribution, from a visible, disability-specific program with accountability to the diffuse, invisible budgets of services that were already under pressure before the NDIS existed.
The Committee should request whole-of-government fiscal modelling before this Bill is passed. The Productivity Commission built the case for the NDIS on that modelling. The Committee should require the same standard before dismantling it.
Part 5: Recommendations
Based on the above, I respectfully submit the following recommendations to the Committee:
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The Bill should not proceed in its current form. The Committee should recommend that the Bill be returned for substantial revision, with a minimum 12-month consultation period that genuinely includes people with disabilities, their carers, and their representative organisations.
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The Government should be required to demonstrate how this Bill is consistent with Australia’s Disability Strategy 2021–2031, signed by all First Ministers in January
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Where the Bill conflicts with the Strategy’s commitments on community participation, safety from abuse, personal support and health outcomes, those conflicts must be resolved before the Bill proceeds.
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The proposed change from ‘arising from’ to ‘arising directly from’ an impairment (Schedule 1, Part 3) should be removed from the Bill until a clinical definition of ‘directly’ has been developed in consultation with disability health specialists. An impact assessment on secondary conditions, including mental health conditions caused by trauma within the NDIS system, has been published.
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The ministerial power to issue funding determinations cutting support categories by percentage (Schedule 1, Part 4) must be subject to: (a) sunsetting provisions requiring parliamentary renewal; (b) mandatory individual impact assessment for
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participants whose plans would be materially affected; and (c) an independent appeals mechanism. The announced 50 per cent reduction in social, civic, and community participation funding should not be implemented while this Bill is under inquiry. 5. The treatment-first requirement for permanence (Schedule 1, Part 8) must include explicit carve-outs for: (a) conditions for which no curative treatment exists; (b) participants in geographic locations where relevant treatment is not reasonably accessible; (c) participants for whom financial barriers prevent access to treatment; and (d) participants whose primary conditions interact to produce secondary disabilities that are themselves permanent. 6. The codification of parental responsibility (Schedule 1, Part 6) must include explicit recognition that: (a) carers who themselves have disabilities cannot be expected to provide care beyond their functional capacity; (b) carers in domestic violence situations cannot be expected to provide care that creates dependency on perpetrators; and (c) the ‘reasonably expected’ standard must be assessed against the individual carer’s circumstances, not a notional average. 7. The plan suspension and revocation provisions (Schedule 1, Part 7) must specify: (a) a minimum number and variety of contact attempts before suspension is triggered; (b) a mandatory requirement to contact known providers and support workers before suspension; (c) suspension is not triggered when a participant is hospitalised or in an acute health event; and (d) revocation cannot occur without a formal administrative review that includes an independent advocate. 8. Automatic plan renewal (Schedule 1, Part 5) must be accompanied by a mandatory notification to participants and their nominated carers or advocates. It must not proceed without a documented confirmation that the participant’s circumstances have not materially changed since the plan was last assessed. 9. Participant choice over plan management and support coordination must be preserved. 10. The Government should publish whole-of-government fiscal modelling, including projected costs to Centrelink, Medicare, state mental health services, emergency departments, housing services, and the justice system, before the Bill proceeds. The $37.8 billion savings projection from the NDIS budget line alone does not constitute adequate fiscal justification. 11. The Committee should request an independent CRPD compliance assessment of the Bill from the Australian Human Rights Commission before reporting, in accordance with Australia’s obligations under the Optional Protocol to the CRPD. 12. The inquiry timeframe should be extended to a minimum of three months. The current approximately one-month window is insufficient for a Bill of 113 pages with major implications for 760,000 Australians, thousands of whom are excluded from this process owing to their disabilities and require additional time and support to participate meaningfully in any consultation process.
Conclusion
My son did not choose his disabilities. He did not choose to be placed in a care setting that exposed him to abuse. He did not choose that the system would fail to protect him, or that the consequence of that failure would be a trauma disorder that would shape the rest of his life. He did not choose that his mother would be injured by a medical procedure and left with a
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permanent disability. He did not choose any of the circumstances that have made his life and mine as difficult as they have been.
What he has chosen, insofar as his disabilities and his trauma allow him to express preferences, is to go out into the world. To be in his community. To have social connections. To live a life that is visible and human and connected. The social participation supports this Bill proposes to cut are the supports that make that choice possible.
The WHO Report states plainly that persons with disabilities have an equal right to the highest attainable standard of health. That right is not contingent on the scheme’s financial sustainability. It is not conditional on what their parents can be expected to provide. It is not conditional on whether they answered a phone call. It is a right. It is inalienable. And it is guaranteed by the international law that this country ratified eighteen years ago.
I ask the Committee to protect it.
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