Submission on the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
I am the parent and primary carer of a child with lifelong disability called a Developmental and Epileptic Encephalopathy (DEE), which is caused by a genetic mutation. DEEs are a group of rare disorders that typically begin in infancy and are associated with severe and complex disability.
I support reforms that enhance sustainability, such as eliminating the rollover mechanism for unspent funds. However, I am concerned that parts of the Bill could disadvantage and undermine the health, safety, and development of participants and carers.
It took 12.5 years for my daughter to receive a diagnosis for her rare disorder, which explains her differences across all areas of development. These include an inability to speak, complex movement issues like ataxia and dyspraxia, and significant challenges in intellectual, sensory, behavioural, and refractory epilepsy, as well as visual processing, continence, and eating. This is important because, without a comprehensive diagnosis, the NDIA forced us to go to tribunal several times to get the support she needed. They focused only on whether the support was reasonable and necessary for her autism diagnosis, ignoring her other co-occurring challenges — the whole person. Even more concerning, the information documents include internal statements such as, ‘who does this mother think she is, asking for …’
I challenge you to reflect on this - the DEE diagnosis hasn’t altered the reports and recommendations from allied health and other experts for my daughter’s NDIS supports. Our service providers have consistently applied their expertise in a person-centred manner. The real barrier and trauma related to the NDIS have always stemmed from assumptions made about support needs for individuals diagnosed with autism (the diagnosis they chose as her primary disability), along with the refusal to read, understand, and utilise assessments and recommendations by professionals. For example, we have repeatedly requested physiotherapy, but it was consistently refused because it wasn’t classified as an autism support. I urge you to consider families like ours, who request a broad range of supports as those who need tailored, person-centred intervention and assistance, rather than being demonised, blamed for cost blowouts, removed from the system, or funnelled into generic, unsuitable Thriving Kids programs. I also want to draw your attention to the rising costs of functional capacity assessments and ask if you are aware that FCAs and other assessments, such as speech and OT, have become lengthy and costly because therapists and families expect that their support requests will be declined and will end up in tribunal. There should be no need to squander vital support funds on reports produced with such complexity and high quality that they are scrutinised by top legal counsel, especially when we know that regular progress reports and recommendations are often ignored. Additionally, consider the implications of the proposed legislative changes – the removal of human oversight, restricting supports and access to the primary disability, eliminating review and tribunal safety nets, and transferring early intervention to generic programs during a critical stage of child development. At the very least, I urge you to ensure that automated systems are designed to identify and flag children like my daughter, who have complex, undiagnosed disabilities, and to support them rather than dismiss, discredit, or exclude them.
I am concerned about the negative rhetoric surrounding the costs and rights of autistic people, as well as the sweeping assumptions and priorities aimed at reducing the number of individuals with autism on the scheme. It’s important to exclude politically motivated and divisive views, and instead involve humane and open-minded individuals in the process.
Relying on algorithms to decide reasonable and necessary supports risks people being removed from the scheme or only receiving basic, general supports when they urgently need targeted intervention. Many rare genetic conditions are hard to diagnose. Families often spend years searching for answers. During this time, children might have the same support needs as others with a recognised diagnosis but face extra hurdles to accessing funding and services.
There is also a significant risk in allowing access to supports, or decisions about what supports are “reasonable and necessary”, to depend on assumptions that all available medical interventions have been exhausted. This is particularly concerning for people with epilepsy and developmental and epileptic encephalopathies (DEEs), where there is often no clear consensus regarding treatment pathways and where evidence continues to evolve rapidly.
The current Parliamentary Inquiry into Epilepsy has gathered substantial evidence highlighting significant gaps in epilepsy care, unequal access to specialist services, delays in diagnosis, workforce shortages, and the lack of consistent treatment pathways across Australia. Many submissions describe families facing highly complex decisions in circumstances where even experts may disagree about the best course of treatment.
For rare epilepsies and DEEs, there may be no formal protocol that specifies when all reasonable medical options have been attempted. New therapies, off-label treatments, dietary changes, genetic discoveries, clinical trials, and innovative approaches might be discussed in research contexts years before they are adopted into routine clinical practice. Access to these options is often restricted by location, cost, availability of specialists, eligibility requirements, or simply because the evidence is still incomplete.
In this context, it is inappropriate and potentially harmful for a minister, NDIA decision-maker, reviewer, or legal representative without specific expertise in the relevant condition to decide that a family has not pursued sufficient medical treatment before disability supports are provided. Such decisions risk substituting administrative opinion for specialist clinical judgement.
Families should not be placed in a position where they constantly have to prove they have explored every potential intervention discovered through internet searches, legal submissions, or retrospective expert opinions. Such a requirement sets an impossible standard, especially when there is no medical consensus and treatment decisions involve weighing uncertain benefits against significant risks, side effects, financial costs, and impacts on quality of life.
For many people with DEEs, disability support needs exist regardless of whether future medical advances might eventually improve outcomes. Delaying or restricting supports while families pursue speculative or emerging treatments can cause more harm, increase pressure on carers, and limit opportunities for participation, communication, education, and community involvement.
NDIS decision-making should therefore acknowledge the limits of administrative expertise and defer to appropriately qualified treating specialists when dealing with complex medical conditions. Disability supports should not be withheld because a bureaucratic decision-maker thinks that additional medical options might exist somewhere in the literature or in emerging research.
Our family experienced this firsthand. It took years of advocacy and multiple traumatic and challenging Administrative Appeals Tribunal (AAT) disputes before our daughter received the supports she needed. Despite significant functional impairment, she did not fit neatly within existing diagnostic categories. We were repeatedly required to argue for supports based on separate diagnoses and functional difficulties rather than having her needs viewed holistically.
A major issue was that systems often relied on standardised assessments and administrative interpretations that did not accurately reflect her complexity. One example involved the PEDI CAT assessment. We answered that our daughter drank from a cup because, from a very young age, we had offered drinks that way and she appeared able to drink. We later learned that this item carried significant weight within the assessment score. Only after concerns were raised about eating difficulties and swallowing safety did a specialist speech pathologist identify that she was not achieving an effective seal when drinking from a cup and that there were real functional and safety concerns. Following expert assessment, we returned to using a straw, which remains her preferred method and has improved her fluid intake.
This experience highlighted a key issue: parents, administrators, and automated systems are not a substitute for properly qualified clinical experts. Families do not always have the skills to recognise subtle risks and challenges that affect function, behaviour, communication, nutrition, hydration, or safety. Adequate hydration is particularly crucial for our daughter because of its role in seizure management, bladder health, pain-related behaviours, and toileting difficulties.
Policies should not incentivise pursuing additional medications just to meet administrative expectations. Medication can increase support needs and system costs. A lot causes a cascade of expenses, such as setting up behaviour support and risk management plans related to restorative practices involving medication. This leads to extra costs for behaviour support practitioners, support workers, administrative burdens, more complex plans, and further restrictions on PWD rights, choice, and control.
The reforms should acknowledge that restrictive practice frameworks can lead to considerable costs and administrative burdens.
There is also inconsistency in the way medication-related restrictions are taken into account.
Proposed reforms that require participants to demonstrate that medical interventions have been exhausted before accessing or maintaining disability supports might unintentionally raise costs
instead of lowering them. Such a strategy risks incentivising greater use of medication, including cases where families feel pressured to pursue extra prescriptions or medication trials to meet administrative requirements rather than clinical needs.
This has implications that go beyond the core principles of choice and control. Many medications, especially those used to manage behaviour, anxiety, sleep, or distress, can also be regarded as restrictive practices or may activate oversight requirements for restrictive practices. Greater dependence on medication can therefore lead to additional costs and increased complexity within the disability support system.
Medication use often requires increased monitoring, documentation, and coordination among families, support providers, and health professionals. It can lead to a greater need for behaviour support assessments, behaviour support plans, implementation assistance, staff training, and ongoing review processes. Instead of simplifying supports, it may result in more complex plans with extra safeguards, reporting requirements, and specialist involvement.
There are also workforce implications. Administering, storing, managing and monitoring medications creates additional work health and safety responsibilities for providers and workers. It may limit the pool of available staff, increase training requirements, and raise insurance costs. compliance costs, and require more experienced workers to safely support participants with complex medication regimes.
For many people with disability, medications can also pose risks of side effects that may increase support needs rather than lessen them. Sedation, fatigue, behavioural shifts, cognitive effects, mobility issues, swallowing problems, and other adverse effects may require extra supervision, personal care, communication assistance, or clinical supervision.
These broader system impacts should be considered when evaluating the costs and benefits of reforms that emphasise exhausting medical interventions before providing disability supports.
It’s important to realise that support needs fluctuate over time, as does a family’s capacity to maintain supports for complex disabilities. Additionally, the availability and priorities for support and intervention are dynamic and change throughout the year.
I’d also like to highlight that when my daughter needs a break after community activities, such as sport, she enjoys having a hot chocolate and relaxing for a bit, just like many others in the community do on their devices. My support workers are required to use this downtime to write shift notes and meet their workplace obligations regarding documenting behaviour support. It is concerning that parliamentarians justify decisions to cut community access funding based on assumptions they make when they see people use their phones. Do they expect us to increase the hours we support students and pay our staff to write notes in private? In the past, we have requested support hours for collaboration, administration, and similar tasks and been denied.
Unused funding does not mean support is unnecessary. Workforce shortages, illness, service availability, and family circumstances can all impact utilisation. Funding reviews should take these realities into account. For example, speech pathology is critically important for our daughter, yet suitable providers are hard to find. Low utilisation reflects access barriers, not a lack
of need. It is very unfair that we live in fear that our current underutilisation could lead to the funding being considered unnecessary, especially when the Bill threatens to remove all avenues of review.
Cutting community access supports across the board – did you know that many plans may have what looks at first glance like a disproportionate amount of funds in community access because of the way planners put together the plan, and that in reality, broad cuts to funding categories may have unintentional consequences of cutting other essential needs for support. e.g., After our last tribunal experience, the planner insisted on grouping all the different types of support my daughter required under capacity building. They refused to spread it correctly across improved daily living, therapy assistants, community access, respite and behaviour support. Supports were often placed into categories chosen by planners. Future decisions should not rely solely on historical spending patterns. This also shows the need for human oversight and conversations that support participants and their needs rather than demotivate them. Person-centred decision making.
Families supporting individuals with complex disabilities may miss calls while managing medical appointments, crises, hospitalisations, or caring responsibilities. Supports should not be suspended merely because contact was missed. We have Deaf friends whom the NDIA insists on calling by phone, even though the documentation clearly states they are Deaf and need to be contacted in writing or with interpreters and given proper opportunities to organise interpreters. I strongly oppose the proposed legislative change that would give the NDIS the right to terminate or suspend plans based on the participant’s ability to answer the phone when it is not a ‘safe’, ‘fair’, or appropriate method of communication, often with little notice and no opportunity for witnesses.
Our family privately bought a wheelchair despite having an AT budget because we were worried it would be used as an excuse to review and cut our plan. We also needed the wheelchair immediately, not after years, and we were coming to terms with our daughter’s need to use a wheelchair. Buying the wheelchair online was quick, affordable (a few hundred dollars rather than costly reports, admin, and overly expensive products), offered a trial and plenty of information for doctors, us, and therapists about the wheelchair’s value (cheap trial). However, we were told we couldn’t claim it at all. The approval process felt risky, costly, and burdensome. Low-cost trials and practical solutions should be encouraged.
It would be helpful and respectful to assume that most families act in good faith. Many compliance issues stem from complexity, changing rules, and misunderstandings rather than dishonesty. The system should emphasise partnership, education, and problem-solving. I believe it would be more cost-effective to establish person-centred support focused on collaborative problem-solving with individuals who made incorrect claims or ‘misused’ their funds, rather than implementing the current and proposed fraud processes.
It is very important for our family and more cost-effective for the scheme to use unregistered, sole-trader NDIS support workers. They give us the flexibility to reduce staff numbers over longer shifts, the chance to travel with us and stay overnight during therapy and medical appointments, and to provide consistent care and payment for responsibilities such as medication,
continence, and epilepsy management, which are not available through agencies and are specified in our NDIS plan. It also helps us negotiate better rates for weekend work that isn’t covered in the plan.
We have had serious safety breaches when we have used agencies to provide care.
Support should focus on the whole person, maintaining flexibility, choice, and control; avoid viewing underspending as a lack of need for supports to save costs for the scheme without risking people’s access to supports; simplify assistive technology; differentiate disability support from regular parenting; and build trust-based relationships with participants and their families.
The NDIS should stay focused on safety, participation, communication, dignity, and quality of life. Reforms should enhance safeguards without losing flexibility, inclusion, and individualised support.