Submission 2395
Submission to National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026.
May 29, 2026
Attention: Committee Secretary Senate Standing Committee on Community Affairs
Dear Senate Committee,
I welcome the opportunity to provide my opinion on the proposed National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. I support the concept of a sustainable and ongoing NDIS scheme but The Bill in its current form is harmful to vulnerable people and does not address the key causes of future sustainability. I have struggled to read and understand the implications of what seem to be major structural changes which go against the original principles of the 2013 NDIS ACT and which have been rushed through with too short a time frame for people to respond fully in depth. This means there are likely to be unintended consequences and given the nature of the people this applies to – adverse outcomes and possibly death. I believe this Bill needs further scrutiny and amendment before it proceeds.
Recommendation Provide a longer time frame for meaningful consultation with the community – at least two months.
Who I am
I am the single-parent of an 18 year-old NDIS participant diagnosed with Autism (Level 2), ADHD,
Sensory Integration Disorder, Sleep Initiation Disorder, Executive Function Disorder, Developmental
Coordination Disorder(DCD) and Pathological Demand Avoidance. He was originally diagnosed before the age of 4 after causing injury to other children at his day-care centre while sensory seeking and we began working with allied health – psychologist, OT and speech pathologist learning to understand our child and try to support him. His behaviours not only impacted my relationship with his father but also family friends who feared for their own children’s safety. Ultimately my son’s father left as he could not cope with the lack of sleep and stress and became seriously ill himself. My son attended a mainstream primary and secondary school and experienced multiple bullying incidents for his difference. Ultimately by year 9 he was depressed, lonely, self-hating and threatening suicide. I had to leave a professional career I was passionate about so I could be at home to deal with the school fall out. Dysregulated and frustrated my son lashed out physically and our home was full of shouting and violence as we both struggled to manage the challenges and situation we were in and we had many days of school refusal. NDIS support literally kept my son alive. We now have an excellent, well established team including 2 support workers and allied health which has made a noticeable difference to our lives but this took several years to access and develop. We are living safely without domestic violence and my son has completed high school. His self-esteem has improved and, with his support worker, is learning how to participate in the community and starting to gain some independence. There are still many goals for him to reach but with the NDIS funding support helping him learn about his disabilities, how to manage them and increasingly how to undertake tasks of daily life it has been possible to imagine a future where he can hold down a job, live independently and contribute to the community. I have been able to return to full-time work (albeit lower status) which has kept the mortgage paid and a roof over our heads.
Simultaneously I am a sister to brother (42) who was diagnosed with autism, depression and anxiety much later in life after my son. Whilst accepted as an NDIS recipient he has been unable to leave the house to attend any planning meetings for over 5 years and has no funding. He was unable to find
Submission 2395
employment despite having a degree in IT and has never worked. His experience with the special disability job seeking support given by Centrelink was so traumatic he became burnt out and withdrew from the outside world. His anxiety is such that he cannot leave the house except for medical appointments and my 83-year-old mother who has diabetes, auto-immune disease, asthma as well as the usual issues for someone her age is his sole carer. My mother also cared for my father who died during COVID from complications from Parkinson’s. She has not had a break for more than 10 years, has no social interactions other than medical appointments, supermarket delivery driver or collecting medications from the chemist. My brother cannot attend appointments without her, he cannot care for himself adequately, is unable to cook, wash, budget or do the regular life maintenance required to exist in society. He has no friends, no external life and has been effectively housebound for 15 years. I have grave fears for what happens to him when my mother passes away and I have no capacity left to help them.
This juxtaposition of the two disabled people I have direct experience with in my life leaves me terrified for the future for my son. I have direct evidence of what life can look like without supports being available and I mourn the wasted opportunities my brother could have had and his never realised potential.
50% Reduction in Social and Community Participation and 10% Reduction in Capacity Building
I am extremely concerned that the proposed reduction in NDIS support and especially Social and Community participation will trap disabled people at home suffering in isolation. Not only will cuts to this category affect disabled people’s ability to attend medical appointments and the like but also to see how the world functions and learn how to navigate within it. Being able to practice skills gained at Allied Health sessions and scaffolded by support helps reinforce positive behaviours which can open doors to mainstream society. The increased stress on carers (assuming a participant even has any) and participants alike is likely to see an increase in depression and frustration and It is likely to result in unsafe living situations and poor health and mental outcomes which will likely cost more in the long run and result in early deaths as people arrive at breaking point. These measures punish disabled people for requiring support to access to an ablest society which has not been designed or adapted for them.
It is particularly important for young adults to be supported with interacting with the public appropriately if they are to be able to take on meaningful employment and contribute to society including through taxes. All people should have the right to discover the person they can be and live safely with self-respect and independence - not feel they are a burden or don’t deserve to exist. It is also important for society as a whole to see disabled people participating fully within the community developing empathy, understanding and a cohesive society where shared understanding can create new opportunities and new ideas. Imagine our world if Steven Hawking had not been allowed to participate in the community.
Recommendation No blunt, arbitrary cuts to Community or Capacity Building supports. Establish Foundational Supports which are demonstrably proven effective for people as a safety net for people who are rejected for NDIS funding. Recognize that Access to Community Participation also has positive economic benefits as it allows people with disabilities to do paid work and volunteer. Clean up the systemic inefficiencies and duplication.
Informal supports first (s 34 1k)
I would also like to address the role of informal supports. Perhaps one of the reasons for the increased costs is the illumination of the unseen, unpaid work predominantly undertaken by
Submission 2395
women. I am exhausted, injured and working non-stop to keep a roof over our head and pay the bills. I have not had a full night’s sleep since my son was born, I do not see friends or interact with anyone outside work except for people working with my son or the supermarket delivery driver. My work is my emotional support network. The informal supports originally listed on our plan no longer exist. Family friends have drifted away as their children have grown and are doing the usual activities of teenagers – working part time jobs, having relationships, going to parties. They have moved into their next phase of life and no longer want to deal with a young adult who has the emotional maturity of a 13-year-old. I cannot call on friends as I have not had the time or energy to nurture those relationships. My family are already overburdened or have died. It is not possible for me to add any more work now and my capacity is decreasing each year as burn out cumulates and I age.
Recommendation Carers have finite energy and health. There needs to be recognition of declining ability as they age and what is realistic support and the point when a child is considered an independent adult. An 83-year-old should not be expected to be able to keep providing 24/7 care to a t 42-year-old! There needs to be recognition of the sustainability of the caring role as an informal support, taking into account carer health, carer employment and carer’s capacity over time. There also needs to be capacity built in for emergency situations which need an immediate change in support
Functional Capacity test (s 9B)
Schedule 1, Part 1 of the Bill proposes a definition of “functional capacity” under proposed section 9B. The proposed definition assesses a person’s ability to undertake activities:
- “without assistance from other people, assistive technology or modifications”; and
- excluding, “as far as possible,” environmental and personal circumstances. Many disabled people have fluctuating capacity and this is often impacted by the intersection of co morbidities as well as the environment or context they are operating in. In our situation my son can vary from seemingly neurotypical in a safe supported environment with low cognitive demand to having a complete autism shutdown in a shopping centre- unable to speak or move and needing extra help to be physically removed from the sensory environment or to a heightened state where he is self-harming or destroying furniture and lashing out at others. Noise, Sudden changes of expectation, illness, levels of demand, forgetting to take medication all have an impact along with general medical needs such as asthma and skin issues which can affect his functional capability and ability to self-regulate significantly. To assess capability properly requires considering the person as a whole. It is simply not possible to divide the person into separate sections.
Recommendation Assessments should consider the whole person. The functional capacity test should not be implemented until it has been found fit for purpose – designed and published in a draft for feedback, consulted on with the disability community, trialled on different cohorts including cultural backgrounds as well as varying disability categorizations, made subject to disallowable scrutiny by parliament of the rules creating the tool to avoid another ‘robodebt’. There needs to be consideration given to the formal testaments of treating practitioners.
Mandatory Registration
After having worked with many OTs, Speech pathologist and psychologists since my son’s diagnosis, the ones who make the most impact for my son towards meeting his goals are smaller providers, often self-employed with lived experience of disability themselves. His support workers also have direct experience of disability themselves with one having Autism (Level 1) or have family members
Submission 2395
with psychosocial disability. These workers are more flexible and creative in problem solving and are able to understand better how to support my son with lived experience. As a generalisation they work with a smaller number of people and really take the time to know my son fully and work directly with his allied health workers to ensure consistency as well as identify any issues that may come up and go above and beyond. This contrasts strongly with my experience of larger run registered bodies who have worker churn and tend to scrape a substantial amount from the payment before paying workers. The current registration costs are prohibitive to self-employed smaller workers and also don’t encourage the options of making use of existing experience within the broader community. Examples of excellent support workers who come with a higher than usual skill set include teachers, training allied health specialists and retired nurses who could all provide excellent skills as support workers but are not interested in working full time and the costs become prohibitive.
Recommendation Set up a less costly system that allows for part time/ disabled/retired/ extra work allied health and support workers to register as NDIS providers. Utilise systems already in place e.g. VIT registration for teachers which already includes police checks, use the already existing Allied Health Organisations to reduce double handling and free up resources. Place safety of participants as paramount. Audit the process to ensure NDIS providers have Working with children and police checks but allow participants to continue to have choice and work with people they already have a built trust and a relationship with.
Unreviewable ministerial power to cut funding across all support categories
Accessing our treating practitioners in the first place involved long waiting times (over 3 years). As for many other participants, the funding we were allocated on our plan was not the amount that was demonstrated to be necessary so we have to stretch the amount over the year and make decisions about what supports we cannot have. Together we plan meticulously to ensure Capacity building supports are consistently delivered as routine and predictability are key to managing my son’s progress. I have meticulously scrutinised all billing, organised and planned our supports to ensure our funds are not wasted and will work appropriately. When we cannot commit to a sustainable workload for a provider we lose that position (and all the rapport and shared experience). The ability of a Minister to cut funding without warning and without review will directly impact my son’s therapeutic outcomes. An unintentional consequence of this fear of losing funding encourages user behaviour to front load fund usage as there is the implied likelihood that funding will just be removed arbitrarily at some point with no warning. This punishes fiscally responsible participants who are likely to be penalised more than one who is not. The predictability of funds allows us to enter into service agreements with providers and as a result potentially achieve greater bargaining power (e.g. Our psychologist charges the NDIS amount rather than the higher public rate). It is not sustainable for a business to guarantee a set session time – say weekly/fortnightly monthly to then have no income when a sudden change is made by the Minister. It is realistic to expect providers will need to charge higher fees to mitigate potential future losses or to cease taking on NDIS clients altogether This becomes a lose-lose for everyone.
Recommendation There should not be blunt, unexpected cuts to plans which have been agreed to in writing and take no real account of the impact to the participant therapeutic outcomes. The ability for a Minister with no direct understanding of implications for individual disabled persons to make an unreviewable decision should not be allowed to proceed.
In Summary
Submission 2395
I support the importance of keeping the NDIS as a sustainable long-term proposition it has made such positive change for so many disabled people and their families. I am concerned that significant structural changes to the NDIS are outlined which have not been developed with proper community consultation or co-design potentially resulting in unintended harmful consequences. I am deeply concerned at the power given to one politician being enshrined and which removes options for participants to appeal. wrong decisions and unintended harm caused by a robodebt style one size fits all approach (made worse by the attempt to remove parliamentary scrutiny by allowing decisions made under the EM to pass through). This is particularly worrisome when considering actions of future governments which may not support the original intentions of the NDIS Act. I also despair at the politicisation of people’s lives with the ‘spin’ reinforcing negative stereotypes, blaming disabled people and fanning community derision and ignorance of living a disabled life instead of raising the discourse to one of access and equality for all. Removing people from the scheme does not mean the need for support is not there, instead it forces people into being unsafe and unwell states and moves the costs sideways to the education, mental health, hospital sectors, first responders and penal sectors which are already over-burdened.
This response is the best I could do with the time and I am disappointed I was unable to address many other issues of concern. Please listen to the vulnerable members of our community they are people who have rights and not objects to be ‘bean-counted