Submission 2651
Submission to the National Disability
Insurance Scheme Amendment Bill
(Securing the NDIS for Future Generations) Bill 2026
Introduction
I am a parent of a 16-year-old girl with CLN3 Batten disease, rare genetic neurodegenerative and life-limiting condition. This condition progressively results in severe disability including complete blindness, progressive cognitive decline, childhood dementia resulting in complex and significant behavioural changes, complex and declining communication, difficult-to-control seizures and physical decline.
I am not worried that my daughter will be removed from the NDIS because she clearly meets the criteria for permanent and significant disability. But I am concerned that the proposed legislation will have unintended consequences for severe, rare and progressive conditions like CLN3 Batten disease which are fundamentally different to other disabilities and are complex.
The legislation should not be passed without significant amendment. Changes to the NDIS need to be made thoughtfully, carefully and in consultation/co-design with people with disability including those with complex rare diseases who are typically underrepresented. Appropriate scrutiny and safeguards that underpin democratic systems need to be in place. The need for sustainability and fraud reduction must not override the original intent of the NDIS which originally had a focus not only on cost but also on human rights, inclusion and participation, continuity of care, supports that are reasonable and necessary for individuals with disability and allow for choice and control.
A generic and automated one-size-fits-all system without human oversight is not the solution to the problems. There are better ways to fix the system and disability organisations are willing to work with government to help design better solutions. Complex progressive conditions like Batten disease are fundamentally different to static conditions and should have their own stream that is purposefully designed.
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- Increased ministerial powers without sufficient detail and safeguards Proposed changes: The proposed Bill is extensive and expands the use of delegated legislation and future rule-making in relation to key aspects of the NDIS without sufficient safeguards in place. Many of the changes have not been designed yet.
Concern: Significant aspects of the NDIS may be determined through delegated legislation rather than clearly set out in the Bill. Significant changes will not be subject to appropriate parliamentary scrutiny and transparency and participants and their representatives will not be able to suggest amendments for proposed changes.
Suggested amendment: the Bill should require meaningful consultation with participants, carers and disability organisations, including those with rare conditions, before significant changes are made through delegated legislation. Appropriate parliamentary oversight is needed.
- Automated decision-making Proposal: The Bill proposes expanded use of automated decision-making in the NDIS. The proposed system will not allow for humans or the judicial system to override the algorithms.
Concern: Automated process in the past such as Robodebt and the current automated processes in the Aged Care system highlight the dangers of such systems, especially where humans and the judicial systems are unable to override inappropriate automated decisions. Automation and standardisation may not adequately account for individual circumstances involving complex, rare and degenerative conditions. It may not take clinical and expert experience into account. Automated systems will not have the necessary experience and knowledge to adequately understand and interpret needs appropriately.
Personal experience and suggested amendment: Humans with adequate training and knowledge should make decisions concerning complex disabilities and progressive neurodegenerative conditions. A few months ago we entered into a special pathway and now have a specialised and dedicated planner who knows us and has additional knowledge of progressive conditions. We haven’t been in this stream for long and
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haven’t had a plan reassessment yet, but so far I have found that having a dedicated planner has made a difference. It means that if we have a question or problem, we have one accountable person who knows the condition that we can ask. Where we have had problems with claims (such as the renewal for the screen reader software for blind people that had gone through a full assistive technology process) she has been able to determine that it is a reasonable support for my daughter and have the matter resolved quickly. She checks in with us and knows my daughter’s circumstances, needs and NDIS plan. This is much better than calling an anonymous person at the call centre. Having different streams and dedicated, knowledgeable and accountable planners could potentially save a lot of unnecessary wastage in the system reduce errors (which we have encountered). A more personalised and accountable system would be much better than an even less accountable and even more faceless automatic system.
- Standardised functional capacity assessments and lack of consideration for how multiple impairments interact (eligibility and assessment) Proposal: The Bill proposes a standardised functional capacity framework for determining eligibility and support needs. Impairment will be considered individually (if each impairment meets the assessment criteria) rather than holistically.
Concern: The proposed functional capacity framework may disadvantage people with complex, multi-disability conditions that are non-standard and which fluctuate or are progressive such as Batten Disease. While functional capacity assessments are an important information-gathering tool, they should not be the only tool, for example, specialist evidence should be taken into account. International experts in Batten disease recommend proactive supports which take longitudinal trajectories into account. If a proactive approach is not taken, supports will be delayed and unnecessary disability is likely to occur. I am also concerned that complex interactions such as blindness, cognitive decline and behavioural changes and mobility issues will not be considered.
Personal experience and suggested amendment: Children with CLN3 Batten disease do not usually show symptoms until they are around school age. Our daughter started showing symptoms at age 4 but it took 3 years to diagnose the condition due the rareness of the condition and little expertise at that time in Australia (this is changing). When our daughter was 6 years old she lost her central vision within one year – at the beginning of the year we didn’t know she has a vision impairment and one year later she
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was legally blind. While we had multiple vision assessments in that year, assessments always came too late and resulted in her going without appropriate supports during this year. This was prior to the NDIS. International professionals recommend providing proactive support for this reason. Since then, our daughter has undertaken multiple functional capacity assessments and other assessments that have been selected by appropriately trained professionals. While these are important tools, they are generally not designed for someone with a condition like hers where there is a complex and dynamic interaction including complete blindness, which is not common. They also take a lot of time to complete if you have complex and progressive condition and may not take important details into account eg due to her complete blindness, our daughter requires a lot more support in an unfamiliar environment than she does at home. There are a wide range of factors that can have a significant effect on her functional capacity in the moment such as background noise, familiarity of place, activity, person, adaptions and mood. An over-reliance on simplified assessments and criteria may not adequately capture the realities of these conditions and may end up excluding essential supports. While functional assessments have a role, they should not outweigh diagnostic evidence and specialist opinion. Assessment outcomes should also remain reviewable. Progressive conditions need to be assessed differently and take a proactive and holistic approach to support.
- Artificial separation of supports Proposal: A clearer distinction between disability supports and other supports such as health, education and transport.
Concern: For people with complex condition, it is difficult to neatly separate disability, health, education and travel. They require support throughout the day for all activities and in all environments. And artificial separation of supports may lead to people falling through gaps in the system.
Personal experience and recommendation: Ensure reforms do not artificially create barriers between disability, health, education and transport systems that will allow participants with complex needs to fall through gaps in services.
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- Reliance on research published in peer-reviewed journals
Proposal: Greater reliance on research from published peer-reviewed journals.
Concern: Large-scale studies often do not exist for rare conditions due to the small number of people affected. If there are unrealistic requirements for evidence, participants with rare conditions may be disadvantaged and may not be able to access necessary and beneficial or new supports due to a lack of research published in peer reviewed journals.
Personal experience and suggested amendment: The system must not disadvantage participants with rare conditions because there is a lack of large-scale peer-reviewed evidence. Requirements for evidence must take the type of condition into account.
- Cuts to supports applied without consideration of individual needs
Proposal: The legislation proposed to cut social and community support funding to all participants by 50% in October 2026 and capacity building funding by 30%. Further reductions to or caps on other supports may be made in the future by the Minister. The government intends to provide some funding to community organisations in order to replace individual funding with community funding for organisations.
Concern: These types of cuts to all plans do not take individual circumstances and needs into account will affect some participants even more than others. Some participants will not be able to benefit from generic and group-based supports and will still require highly individualised, highly adapted, familiar and consistent supports for everything they do. This type of cost cutting that does not look at the need and consequences is not in line with the original intent of the scheme which recognised the need for individualised reasonable and necessary supports.
Personal experience and suggested amendment: My daughter requires 1:1 and sometimes 2:1 support for all activities in all environments and appropriate adaptions
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and assistive technology. There should not be generic cuts to budgets just to save money. Safeguards should be put in place so that supports are not taken away or capped where there is good evidence for their need. The legislation should not allow the Minister to reduce funding without consideration of the impact it will have on the individual participants affected.
- Choice and control Proposal: Mandatory registration of most providers.
Concern: Taking away choice and control is not safeguarding. Some participants require highly individualised, highly trained and consistent supports. If registration is made too difficult or too expensive, there will only be large providers left. This will reduce choice and control for participants who have unique needs and rely on small, unregistered providers. Some participants and their families also choose to directly employ support workers because they have complex needs. These participants and their families ensure the quality of the supports. If mandatory registration is too complex and expensive, then these sorts of support arrangements that are working well for participants will be affected.
Personal experience and recommendation: My daughter needs very specialised supports. This applies to therapists, support workers and community organisations. While we sometimes use registered providers, we have found that they usually do not provide the best support. A couple my daughters’ therapists are sole traders. They have the unique skills and experience that other therapists don’t have. One of them has a PhD. They have provided consistent and high-quality support, and we have only ever had good experiences with them. As they are not local more travel is required for them to visit our home. Clinic-based therapy is not appropriate for my daughter.
We also value the choice and control of selecting and training support workers rather than having a large organisation decide who comes, what qualifications they have and what training they receive. I have created extensive training materials and personally train support workers. We don’t have casual supports. I have found it very beneficial to be able to access peer supports (provided by other people with disability and their carers). This has helped me to be better able to manage support workers and create systems that ensure quality care. One example is that we have a documented mobile phone policy. In one of the speeches from the government, there was a mention of the need for registration because support workers are on their phones rather than looking
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after participants. I have found that just because a support worker comes from a registered provider does not ensure they will not use their phone. That is why we have introduced a mobile phone policy. Participants and their carers should continue to be able to access peer training. There needs to be a way of safeguarding and ensuring that providers are doing the right thing while still enabling participants to have choice and control.
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