Submission 689
Submission – National Disability Insurance Scheme Amendment (Securing
the NDIS for Future Generations) Bill 2026 26th May 2026
Dear Committee Secretary,
Please accept this submission regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I request that my name be withheld.
I am writing as a sole parent and full-time carer of a child diagnosed with level 3 Autism Spectrum Disorder, Severe Intellectual Disability, and additional co-occurring disorders, including Anxiety, OCD and Sensory processing disorder along with significant behaviours of concern. My son requires daily support to remain safe and to participate meaningfully in ANY family and community life. The NDIS has transformed my son’s life in so many ways including his increasing ability to use AAC to communicate, his ability to participate in everyday childhood experiences and to ensure we remain together as a family along with building my capacity to better understand and support him to name a few.
Support for Reform and Sustainability I support reasonable reform to ensure the long-term sustainability of the NDIS. I support strong fraud prevention measures, workforce quality improvements, and safeguards that ensure funding is used appropriately and effectively.
However, sustainability cannot come at the expense of the safety, dignity, wellbeing, and human rights of people with disability and the families who care for them.
Lived Experience: My son has been a participant on the scheme from its inception. We have had to request an internal review for every single plan but one. Reports have been ignored, communication devises that are essential initially denied, regulation tools essential to minimise behaviours placed back as parental responsibility only to be reinstated at review, lost paperwork, ministerial intervention and more. I can’t fathom the dollars that are wasted internally across the agency not to mention the impact of dealing with the agency has had on my mental health over the years.
- Individualised Supports must remain central The proposed reforms create significant concern that participants may increasingly be grouped according to diagnosis, impairment category, or broad functional classifications rather than assessed as whole people with unique support profiles and intersecting needs.
Submission 689
My son’s disabilities do not present consistently from day to day, environment to environment, or person to person. Capacity fluctuates. Distress fluctuates. Communication fluctuates. Risk fluctuates.
I am deeply concerned that repeated reassessment processes and evidentiary demands will increasingly place myself and others in cycles of re-traumatisation where I/they are repeatedly forced to prove permanence, severity, dysfunction, and suffering to retain supports.
This is especially concerning given many planners and decision-makers do not have specialist expertise in autism, intellectual disability, psychosocial disability, fluctuating capacity, trauma, communication disability, or complex behavioural presentation.
Lived experience: My son’s support needs are highly complex and fluctuate depending on the environmental, communication barriers, sensory overwhelm, how he is feeling and who is supporting him. Supports that work for another autistic child/person may not work for him at all. Progress has only occurred because we have had the flexibility to tailor supports to his specific needs and gradually build tolerance and participation.
- Parental Responsibility and Informal Supports The NDIS Act recognises that parents are expected to provide ordinary parenting supports, but it also recognises that families should not be expected to absorb disability-related care requirements beyond what would reasonably be expected for a child of a similar age.
I am deeply concerned that this bill risks shifting further disability support responsibilities onto unpaid carers and families under the assumption that families will simply continue to cope. It will also place siblings under more pressure and in our case at more risk of injury.
The proposed legislative framework significantly increases concern that disability-related supports will increasingly be reframed as informal or “natural support” responsibilities, shifting the burden of care onto unpaid families, particularly women and mothers, despite part of the original intent of the NDIS being to reduce precisely this inequity.
The labour does not disappear when funded supports are removed. It transfers and adds additional stressors to families/carers who are just holding on.
Lived experience: My caring role extends far beyond ordinary parenting my son is 11 and can’t be left for a moment during waking hours, he requires intensive behaviour support, all personal care including nappy changes, feeding supervision, dressing, tooth brushing, bathing, emotional regulation support, therapy implementation, constant advocacy, going out to a community activity/event requires intense pre planning, risk assessments, emails to the venue prior and more, I am also often in crisis management. Our family has also experienced significant informal carer loss with the passing of my partner/the boys Dad and my parents in a very short period of time, I haven’t even had time to grieve. I am my sons only informal support and that is so hard. I couldn’t even be with my mum the day she passed due to my caring role. There are also
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significant safety risks for my younger son and myself, this year I had to present at emergency with an injury due to behaviours of concern. Without funded supports, our family could not continue safely.
Lived experience: I was forced to leave my 30-year career nine years ago because the level of care required was incompatible with employment. Only recently, due to appropriate NDIS supports, I have been able to slowly return to part-time work. If supports are reduced, I will be forced out of the workforce again.
- Risk of Carer Burnout and Family Breakdown Families and unpaid carers are already carrying enormous pressure. When supports are reduced or become inaccessible, the burden does not disappear — it transfers directly onto families.
The bill does not adequately address the consequences of carer burnout, family breakdown, mental health deterioration, financial hardship, or in our situation the possible relinquishment of care as I can’t meet my sons needs without support.
Lived experience: My greatest fear is that I may eventually be unable to safely care for my son at home due to insufficient support. Families should never be placed in a position where hospitals, crisis accommodation, residential care, or child protection systems become the only option because they have been left unsupported. Children who through no fault of their own but due the need for high support and the inability to access what they need should not be removed from their families who love them.
Lived experience a siblings experience: My younger son feels the weight of his brothers disability daily, he is physically hurt most days, he must go wherever his brother needs to go, he cannot have friends at our home to play or for sleep overs, he must fit into his brother’s schedule, I often can’t take him or pick him up from school, I cannot watch him at sport often and at times he must play the role of carer. He is 9! With supports in place I have been able to take him to his first concert, watch some of his community sports and up until this bill was announced I was hopeful I could even arrange a play date at home. These things are vital for siblings already carrying so much, they are always forgotten, and I am most fearful of enormous psychological damage and increased resentment as he gets older -this bill will add to his load.
- Community Access and Social Participation blanket reduction and the minister’s power to cut funding without risk management, consultation and at any time.
Social and community participation are not optional luxuries. They are fundamental to quality of life, skill development, emotional wellbeing, inclusion, and reducing isolation for both participants and families.
Submission 689
The proposed legislative changes create significant concern that community access and social participation support may increasingly be restricted, reduced, or excluded through Rules, funding frameworks, or future Ministerial decision-making powers without adequate transparency, consultation, safeguarding analysis, or Parliamentary scrutiny.
This creates enormous uncertainty for participants and families because supports that are currently recognised as essential to safety, regulation, communication development, emotional wellbeing, skill development and inclusion may in future be redefined as “non-essential”, “recreational”, or outside the scope of funded supports.
For people like my son with complex support needs, community access is not optional leisure. It is often the primary way skills are developed, emotional regulation is maintained, distress is reduced, communication is strengthened, and inclusion in society becomes possible.
The proposed reforms risk creating a system where disabled people, particularly those with intellectual disability, autism, psychosocial disability, complex behaviours of concern and or high support needs, become increasingly isolated within homes, segregated settings, or crisis-driven systems due to loss of individualised support.
This is particularly concerning given the Bill’s expanded capacity to alter all supports through delegated legislation and Rules rather than primary legislation. Disabled people and families cannot safely plan for the future when access to essential supports may become increasingly subject to shifting political priorities or economic narratives around “sustainability”.
The reduction of community participation supports will not reduce disability. It will simply reduce inclusion.
Without adequate support, many people will be unable to safely access parks, shops, appointments, family outings, holidays, sporting activities, social participation, or ordinary community life. This does not create independence. It creates confinement, exhaustion, social isolation, deteriorating mental health, increased behavioural escalation, family breakdown and increased long-term crisis costs.
The proposed reforms risk reversing decades of progress away from segregation and institutionalisation by making ordinary community participation increasingly inaccessible for people with high support needs.
This is fundamentally inconsistent with the purpose of the NDIS and Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities, particularly Article 19, which recognises the right of disabled people to live in and participate in the community with choices equal to others.
Lived experience: My son’s greatest joy is accessing the community safely. However, he requires significant support to attend ANY park, beaches, shop, medical appointments, and holidays (I accept responsibility for all costs of a holiday however NDIS fund his support workers) without
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support workers, our family cannot safely participate in any community activities together and my son does not get the opportunity like other 11yr old’s to experience the world. The idea that he will no longer be able to do what he loves is heartbreaking.
Lived experience: These experiences are not simply recreational. They are how my son develops tolerance, communication, confidence, regulation skills, and connection to the world around him. My son does attend a disability specific school holiday program but can only do so two days a week at most as there is always a documented increase of behaviours, they simply do not meet his needs. Due to having NDIS supports via engaging a support worker he trusts he has had the opportunity to go to the snow, go on rides at a theme park, travel on a plane and even swim with a dolphin. My capacity to safely support him increase’s every time we try something new, but I could not do any of this without a support worker who knows him and who he trusts present.
- Registration Does Not Automatically Equal Quality I am concerned about proposals that may limit participant choice and flexibility under the assumption that registered providers automatically deliver higher quality care.
The proposed reforms create concern that participants may increasingly lose the flexibility to engage trusted independent workers under assumptions that registered providers automatically deliver safer or higher-quality care. Consistency and relational trust are often critical safeguarding mechanisms and in my experience both are often overlooked when engaging providers.
Removing flexibility can destabilise carefully built support relationships and significantly increase distress, behavioural escalation, dysregulation, trauma, and risk.
Lived experience: Some of the most effective supports my son has received have been from carefully selected independent workers who understand his communication style, behaviour triggers and safety requirements. Conversely, I have experienced poor-quality care from registered providers, including serious supervision failures, inconsistent and ill-suited supports (as providers have a tendency to place supports due to availability versus suitability). We’ve even experienced not one but two behaviour support practitioners who produced plans that did not accurately reflect my son’s needs at all ,in fact they only met him once for 40mins, these plans were not functional in any way and cost thousands of dollars which were reported but not actioned. The bill must include the option when it is safe to do so the ability for self directed supports losing my sons team would be so detrimental to him.
- Access to Therapy and Appropriate “treatments” The bill must not create unrealistic expectations that families must endlessly pursue treatments or therapies that may not be appropriate, tolerated, or effective for the individual.
Submission 689
The proposed reforms create concern that participants may increasingly be expected to pursue therapies, interventions, treatments, or behavioural approaches in order to demonstrate eligibility or justify ongoing support needs.
This is deeply concerning for disabled people with trauma histories, communication disabilities, fluctuating capacity, intellectual disability, sensory distress, psychosocial disability, or conditions where traditional intervention models may not be tolerated, appropriate, accessible, or effective.
Lived experience: When my son was younger, traditional clinic-based therapy environments caused significant distress and self-injury. Progress only became possible once supports were adapted into home and community settings at his pace. Flexibility and individualisation were critical to his development. Whilst we can now enter a clinic, much of his therapy continues to look different this is also the case at his SSP school for learning.
My son has a condition called pediatric food disorder which limits what he will and won’t eat and drink significantly. I am unable to give him any medication even pain relief when he is sick so although I am willing to try recommended “treatments” this can’t be physically forced upon him. The bill opens the opportunity to force participants to accept treatments that may cause trauma and harm in order to access support.
- Reassessment, Reviews and External Appeals The proposed reforms create significant concern regarding increasing reassessment powers, repeated evidentiary demands, and reduced practical access to meaningful review and appeal mechanisms.
Families are already exhausted navigating highly adversarial review systems where extensive professional evidence is frequently ignored, delayed, lost, or dismissed.
The prospect of increasingly frequent reassessment creates ongoing instability and fear, particularly for participants with permanent and lifelong disabilities where support needs are unlikely to fundamentally change.
There is also significant concern regarding the concentration of decision-making power through Rules and delegated legislation while practical avenues for external challenge become increasingly inaccessible, complex, financially draining, and retraumatising.
Rights should not depend on future ministerial discretion.
Disabled people should not have to repeatedly fight to prove their humanity, safety needs, communication needs, or right to participate in society.
Submission 689
Internal NDIA Wastage and Administrative Failure
Public narratives around NDIS “unsustainability” often focus heavily on participant spending while far less scrutiny is directed toward extensive internal administrative inefficiency, repeated review processes, duplicated assessments, delayed decision making, contractor expenditure, legal costs, and systemic administrative failure within the agency itself.
Families are repeatedly blamed for rising costs while simultaneously being forced into exhausting review systems simply to access supports that should never have been denied in the first place.
That cost burden must also be honestly examined as part of any genuine discussion regarding sustainability.
Human Rights and the Purpose of the NDIS The NDIS was designed to support people with disability to live safely, participate in the community, exercise choice and control, and live ordinary lives. These principles are also reflected in the United Nations Convention on the Rights of Persons with Disabilities, including the right to live independently, and be included in the community.
The proposed reforms raise significant concern regarding Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities, including:
Article 7: Rights of children with disability
Article 19: Living independently and being included in the community
Article 23: Respect for home and family
Article 26: Habilitation and rehabilitation
Article 28: Adequate standard of living and social protection
The reduction or restriction of individualised supports risks increasing segregation, institutionalisation, isolation, family breakdown, and exclusion from ordinary community life.
Reforms must strengthen these protections rather than weaken them.
This proposed bill has taken my hope. Throughout every hard, every challenge on this journey, I’ve always carried hope that with the right supports in place there would be no limits as to what my son could achieve, this bill has taken that, its apparent he’s seen as a cost burden who shouldn’t have the right to participate in society versus recognising and supporting the unique and most awe-inspiring human being he is and that’s not ok.
Submission 689
Recommendations
The bill should not proceed in its current form. Participants should be protected from automatic or blanket funding cuts. Planning and assessment processes must remain individualised and based on functional impact which encapsulates the whole person. The impact on unpaid carers and family sustainability must be considered in all decisions. Community participation supports should not be treated as optional luxuries. The NDIS must continue recognising the limits of ordinary parental responsibility. Families and unpaid carers should not be expected to replace funded disability supports. People with disability, Participants and Carers must be meaningfully consulted before major reforms are implemented. Funding decisions must consider the risk of carer burnout, family breakdown, and institutionalisation. The agency must undergo an independent audit to identity the extensive internal wastage that currently occurs and current cost blow outs in house. Expanded Ministerial powers should be significantly limited and subject to stronger Parliamentary oversight. Participants must retain meaningful access to external review and appeal rights. Flexible self-directed supports and independent workers must remain available where safe and appropriate. Participants should not be forced into therapies or treatments as a condition of support access or continuation. Funding decisions must consider fluctuating capacity, intersecting disability, and safeguarding risks. Disability supports should not become politically variable through delegated legislation and Rules. Disabled people should not lose essential supports through future rule changes without full Parliamentary scrutiny and genuine consultation.
Conclusion
The proposed reforms create significant concern that disabled people will increasingly face reduced supports, increased reassessment, greater instability, increased reliance on unpaid care, and greater exclusion from ordinary community life.
These reforms risk shifting Australia backwards toward greater segregation, institutionalisation, crisis-driven systems, and family collapse.
The NDIS is not simply a budget measure. It is the reason many disabled Australians can live safely, access education and healthcare, participate in their communities, maintain relationships, and experience dignity and choice.
It is also when done well what allows many families and unpaid carers to continue caring safely and sustainably without reaching breaking point.
Submission 689
I urge the Committee to carefully consider the real-world impact these proposed reforms may have on those with disabilities including those with complex disabilities, their siblings, and the families who care for them every day.
Thankyou for considering this submission