National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1445
Submission to the Senate Inquiry into NDIS reform legislation
I am the mother of 3 children, 2 of whom are on the NDIS. I have a 17-year-old daughter (not an NDIS participant) who has several chronic health conditions, is currently completing Year 12 and dreams of moving from our home in Tasmania to Queensland next year to go to Uni. I have a 14-year-old son who has Down syndrome, is Deaf, has anxiety and complex trauma. He is medically complex – he survived cancer as a 1-year-old, had open heart surgery, Type 1 diabetes and suffers from chronic ear infections and associated pain. His complex trauma has resulted from his medical history and means that he requires a general anaesthetic for even straight forward procedures. He also has many appointments throughout the year for both acute conditions and as part of care for his ongoing chronic health conditions. He is non-verbal, still toilet training and requires one-on-one care 24/7 due to the complexity of safely managing his diabetes and need for constant supervision to protect him from potentially life-threatening situations (running off, hot surfaces, knives, pica/eating non-food items etc). I also have an 11-year-old daughter who is on the NDIS diagnosed with autism level 2, ADHD, severe anxiety, dyslexia and dysgraphia. She is a clever and engaging child but requires routine, explicit repeat instruction to learn new skills and strategies to help manage her anxiety. This support is an everyday, all day need – not served by an hour of therapy a fortnight so much as constant reinforcement of concepts and strategies throughout daily life at home and in the community. I am a single mother having left a situation of family violence and have 100% custody of my children. We have no other family locally and my son’s complex and high level of support needs means that he must always be cared by someone with a high level of skill. His history of trauma means that having trusting relationships with his caregivers is essential, requiring consistency in his support team. He can never go to a friend’s house or a sleep over. He is always with me, one of his incredible support workers or his aides at school. I work part-time running my own consulting business, which allows me to earn a good income to support myself and my children.
My concerns with the legislation
I have numerous concerns with regards to the NDIS legislation currently being considered.
The ability for the Minister to make blanket reductions in funding across groups of participants and categories of funding
These types of naïve cuts, based on often erroneous assumptions about how participants use funding and which take no account of the needs and circumstances of individual participants will cause significant harm and will put many participants in situations of extreme risk. The already expressed intention to use this power to cut social and community participation funding across all participant plans will impact participants ability to:
Attend medical appointments. Work in both paid and volunteer roles. Learn skills like catching public transport and driving that increase their independence. Exercise and socialize, reducing social isolation and improving long term mental and physical health. Go grocery shopping and attend to the many other living tasks that require us all to leave the house. Attend and participate in events including for entertainment, training or community building.
The current social and community participation funding in participants’ plans is used flexibly within the core funding allocation. This means that this funding has been used interchangeably with funding for daily living and for consumables where these haven’t been funded adequately. In the case of my son his social and community participation funding has been covering the cost of a significant shortfall in funding for continence aides (these were funded at $5000 per annum less than the costs I could demonstrate with receipts from previous plans). His support work shifts are generally also a mix of ‘daily living’ and social and community participation. For example his support worker may shower and
1
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1445
dress him, get him breakfast, give him insulin and pack lunches and bags to go out for the day. While they’re out she’ll continue to feed him, toilet him and monitor and manage his blood sugar levels while also engaging in activities he enjoys. He needs the same level and type of daily living support regardless of whether he stays at home or goes out in the community so slashing his social and community participation funding will quite simply lead to a direct cut to the number of hours a week for which he is supported. The work of caring for him doesn’t disappear just because the funding is removed. So either his funding for daily living needs to increase to cover the hours he needs support or more likely the expectation is that I take over the additional care he needs by not working, not addressing the needs of either of his sisters and not doing anything at all to look after my own health to ensure I can continue to provide care for all three of my children.
The broad nature of the way in which these powers is described in the legislation means that further arbitrary and harmful cuts to funding could happen in the future. The uncertainty this creates causes enormous stress and makes planning for the future very difficult. In my situation my son is rapidly growing up and much of my focus is now on what adulthood looks like for him – where will he live, what will he do all day, who will coordinate the many medical and disability related supports he needs to survive when I no longer can. This power within the legislation means that even with strong evidence that the arrangements we end up with are cost effective and best address his needs, an arbitrary cut in a single category of his funding could suddenly be made, putting his life style in jeopardy and putting him at immediate risk of harm. As an aging parent trying her best to plan for a good life for their child this possibility is terrifying.
The extensive powers of the Minister to make unilateral decisions without oversight
These powers embed and reinforce the harm of poor decisions. They allow all future governments to make decisions which breach human rights and which systematically target specific groups within the disability community. For many of the participants with the highest support needs, poor decisions enabled by this legislation that cannot be appealed will lead to deaths, supporting a form of state sanctioned eugenics. Legislation that enables this in the future is incredibly dangerous regardless of the intentions of those currently able to exercise these powers.
Changes in the definition of parental responsibility
Changes in the definition of parental responsibility put an ever-increasing load and expectation on parents of both children and adults with disability. The burden of these changes will fall largely on women, who form the majority of carers and who already experience significant life-long financial disadvantage. In my own case increasing the expectations of what is ‘parental responsibility’ will limit my ability to work and support my family, will create long-term financial insecurity with my decreased superannuation contributions and savings, and will further damage my health long-term. I am 50 years old. My life is exhausting and stressful. I rarely sleep through the night. I have very limited time to exercise or develop friendships. I am already socially isolated and have been assessed at severe risk of carer burnout. I’m at an age where I will become physically and mentally less capable of the level of care my son requires while his already substantial needs continue to increase as he transitions to adulthood. Blanket cuts in my children’s NDIS plans or an expectation that I take on more of the load than I currently carry are very likely to break me – financially, emotionally and physically.
With appropriate support my son can live a good life and be supported at home well into adulthood. I can continue to work and provide for my family now and my retirement in the future. My eldest daughter will be able to go to Uni, follow her career goals and contribute to the economy and society more generally. I can give my youngest daughter the support she needs to thrive and grow into an independent adult.
Without this support my son is very likely to end up in congregate care – an option that is both more expensive and comes with a significantly poor quality of life, safety concerns given his need for
2
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1445
consistent and constant 1:1 care, social isolation, and high risk of abuse and neglect. Without this support my eldest daughter is likely to lose her dreams of education and career and be pushed into a caring role that she doesn’t want and that she shouldn’t have to shoulder. Without support for my youngest daughter and her brother, my youngest child is less likely to develop the skills and resilience to work, study and live independently.
Automated decision making and AI generated plans
People with disabilities are unique individuals. The range of needs and diversity of circumstances of people with disability mean that without human oversight and contribution, plans will fail to provide the types of support required for that person to live a life of safety and dignity.
Limiting supports to those directly related to the participant’s ‘eligible disabilities’
People with disabilities don’t fall easily into homogenous single disability categories, and conditions that would otherwise require very limited support often become exponentially more difficult to manage when overlaid with the persons other disabilities, medical conditions and personal circumstances. For example, in the case of my son – a typically developing 14-year-old with Type 1 diabetes is generally able to manage their own diabetes day to day with caregivers providing oversight. By adulthood these people go on to fully, independently manage the condition. For my son his intellectual disability means constant monitoring of his blood glucose level, restricting access to food so he can’t access carbohydrates without these being accounted for in his insulin dosing, administering insulin doses, recognizing and treating incidents of low blood glucose and implementing strategies (many unsuccessful) to minimise him pulling his continuous glucose monitoring sensors required to safely manage his sugar levels off. It is hard to describe the level of hypervigilance required 24 hours a day to manage this condition in a child with his level of disability with the knowledge that death is a very real possible outcome from one moment of inattention or poor decision. In his case Type 1 diabetes is not an eligible disability but has completely changed his support needs meaning he will need 1:1 care 24/7 for the rest of his life.
Opening up the scheme to co-payments
The legislation opens the door for co-payments, the perverse outcomes of which are extraordinarily high. For example, given my current income I would expect I would be required to pay a co-payment for my children’s supports. Given the level of need my children have and the already much higher living expenses associated with their disabilities and medical conditions, this cost would almost definitely mean I would not be able to afford the level of supports required to work. This mean I would move to being reliant on income support payments that I am not currently entitled to. It would make my eldest daughter eligible for a range of income support (eg. Austudy) and other payments she is currently not entitled to due to my income. The significant contribution I make though the income tax I pay will be lost. The contribution my work makes to society more generally is lost. My health would decline as I become increasingly burnt out and the burden I place on the health system would increase. My son is likely to end up needing full time out of home care. As my income decreases the expected co-payment would presumably decrease providing a powerful disincentive to work. At a personal level these changes would be devastating for myself and our family. At a societal level even accounting purely the financial costs through tax and income support this would end up being incredibly costly. Co- payments would cause harm to both participants and the broader economy. Experiences emerging from My Aged Care where this co-payment model has been adopted already highlight the significant impacts such requirements on basic health and safety of participants (many participants are giving up basic services such as showering as they can’t afford the co-payment).
Reliance on ‘State services’ that don’t exist now and didn’t work well when they did
The reform enabled by this legislation focuses heavily on setting targets to remove people from the scheme by pushing them into ‘State services’ that don’t actually exist and, which when they did exist,
3
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1445
performed so poorly and caused so much harm the NDIS was formed. In reality people are being pushed off a ledge with no support. This will have devastating impacts on many people who require NDIS to be able to work and live independently as adults.
Lack of co-design and input from the disability community
There was no co-design of the legislation at all with people with disability or their carers. The lack of any lived experience to inform the legislation is more than evident in its incredibly poor and naïve design. People with disabilities and their families are well aware of the types of reforms that would strengthen the NDIS and reduce costs without harming the people the NDIS is there to support. Designing legislation and reform without their input makes no sense.
Compulsory provider registration
If implemented poorly, compulsory provider registration will reduce participant choice, remove small independent providers from the market and lead to consolidation of services through large service providers. These changes will impact most on access to care in rural and remote areas and for those with complex support needs. Our family is supported by two support workers who work for a small independent support provider. The quality of care my children receive and the reassurance of knowing that we are supported by the same highly trained staff who know our family well means I can confidently rely on their support. A large provider could never provide the high level of individualized, flexible support we currently enjoy. I would not feel safe leaving my son in their care. Without sufficient safeguards and having no detail on what this type of registration would look like I have grave doubts that the outcome will be anything but mass movement of small independent providers out of the market with no actual benefit in terms of reduced fraud or increased participant safety.
The impact of poorly designed and implemented reform
This legislation is so poorly constructed and so certain to cause harm that it needs to be scrapped and replaced by a considered, well-thought out piece of legislation that addresses the very real needs to reform the NDIS.
The current legislation embeds and further exacerbates the already high levels of abuse and neglect experienced by people with disability which were uncovered by the Disability Royal Commission. For example the DRC found that people with intellectual disabilities have some of the poorest health outcomes of anyone in our society due to abuse, medical neglect, social isolation and a lack of access to preventative healthcare. Changes enabled by this legislation will impact on even basic access to medical care and preventative health measures such as attending medical appointments and exercising. They increase social isolation and create the environment in which abuse and neglect thrive. This will make the already poor health outcomes of this group even worse, undermining all the gains being achieved through implementation of the Roadmap to Improve the Health of People with Intellectual Disabilities. The Government’s own analysis shows people with Down syndrome and those with visual impairments are the two groups likely to be most negatively impacted by blanket reductions in funding for social and community participation. Inadequate support also traps both people with disabilities and carers in situations of family violence, with people in abusive situations left with no choice but to stay with their abusers to be able to access the basic supports they require to live. In my own case I would not have been able to leave my ex-husband and provide financial security for my children without the support NDIS provides.
A better way forward
In order to ensure the long-term sustainability of the scheme and the welfare of people with disability and their families and carers any legislation must:
Be co-designed by people with disability and their carers.
4
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1445
Ensure human rights are protected. Consider the participant as an individual and consider the context in which their supports are required. Ensure oversight and accountability, providing sensible and timely appeals processes. Remove any ability of the Minister or any other person to make arbitrary across the board changes to plans and funding. Recognize the very real contributions the NDIS makes to the economy, for example through enabling people with disabilities and their carers to work, pay tax and minimise their reliance on income support payments or by reducing the load on already overburdened health and criminal justice systems – two key areas where inadequate supports are likely to create substantial shifting of costs and responsibilities. Include approaches to ensure the risk to individual participants of any changes is identified and minimised. Includes simpler processes for planning and less frequent unnecessary plan reviews that are both costly and stressful.
Concluding words
In its current form the legislation will lead to significant suffering by people with disability and their families. It will cause substantial harm to the community and is likely to lead to the deaths of many people with disabilities. It will also impact negatively on our economy. It puts the most vulnerable people in our community at high risk on the false promise of economic benefit and budget savings.
5