Submission 402 — Down Syndrome Australia Consortium — NDIS Future Generations Bill | External submission

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

Committee Secretary Community Affairs Legislation Committee Submission via portal/email

1 June 2026

Dear Committee Secretary, Re: Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

The Down Syndrome Australia (DSA) Consortium thanks the Committee for the opportunity to provide feedback and concerns on the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026, henceforth referred to as the NDIS Amendment Bill.

The Down Syndrome Australia Consortium supports reasonable reform to the NDIS but does not support this legislation in its current form. We recommend that the NDIS Amendment Bill not proceed.

EXECUTIVE SUMMARY

People with Down syndrome and intellectual disability caused by chromosomal variation are within the cohort that the NDIS was designed to support. For many, the NDIS is a lifeline that allows them to live inclusive, connected lives.

We support reasonable reform to the NDIS however many of the proposed changes contained in the NDIS Amendment Bill prioritise “financial sustainability”, which is not defined, above the safety and wellbeing of people with disability. We have heard from our community that these changes will create risk of harm and isolation for them. We have serious concerns these changes are inconsistent with the recommendations of the Disability Royal Commission (DRC) and have not been given sufficient time for review and consultation.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

The DSA Consortium’s key concerns include:

• Inappropriate use of Ministerial powers in the legislation, including to arbitrarily reduce or cap funded supports across entire support categories, at levels below what has been deemed ‘reasonable and necessary’ in the name of scheme sustainability. There are insufficient safeguards and no review rights to these decisions. Such changes, some of which are compounding, could directly cause harm and risk to life and safety of people with disability. • Significant proposed reductions to social, economic and community participation funding, which will remove supports that allow people to live inclusive lives in their community, including participation in the workforce, and will directly cause isolation, segregation and harm. • Changes to reasonable and necessary criteria, in particular those that put increased responsibility on parents and informal supports. Many parents and informal supports are already operating beyond sustainable capacity which these changes will only exacerbate. • New requirement to access “all available treatment” in order to be eligible for the NDIS. This amendment does not take into consideration the breadth and complexity of disability, particularly diagnosed disabilities such as the cohort we represent with chromosomal variations, and is likely to cause significant confusion and inconsistent decision making from the Agency. • Only funding supports that arise directly from impairments for which the participant meets eligibility – this reverses the “whole of person” considerations in the NDIS Act and fails to recognise the interplay between disability, health conditions, symptoms and other personal and environmental circumstances that impact a persons support needs. • The reduction or removal of supports that require a person to rely on other support systems, many of which are either already at capacity such as informal supports, not in existence such as Foundational Supports, or not inclusive of people with disabilities such as many mainstream services.

Further the DSA Consortium is concerned for the direction that this legislation signals that the NDIS is being taken. The NDIS Amendment Bill contains a significant change to the funding model away from an individualised reasonable and necessary approach towards a more generalised scaling or banded approach dictated by the Minster of the day aimed purely at the financial sustainability of the NDIS. While the details of the budget process for New Framework Plans is still to be finalised, we hold significant concern for the precedent this legislation sets.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

The DSA Consortium want to emphasise that support needs do not disappear when they cease to be funded – they are transferred elsewhere. In the case of this legislation, we would expect to see people in our community shifting their support needs to health and mental health systems, child and adult protection systems, crisis services and to the supports which will ultimately be provided by family, carers and kin. This cost shifting often occurs at times of crisis and at a higher cost than would be otherwise avoided with supports through the NDIS. None of these costs have been considered in the financial sustainability argument which has been presented in the NDIS Amendment Bill.

IMPACT ON HUMAN RIGHTS

Harm, abuse and neglect of people with disability The DSA Consortium would like to highlight our deep concern, and the genuine risks of harm, abuse and neglect to people with disability which will occur directly as a result of these proposed legislative changes. These changes are inconsistent with the findings of the DRC and appear to have placed the financial sustainability of the Scheme above the safety and safeguarding of people with disability.

Though the NDIS does not support every person with a disability, for people with intellectual disability and/or high and complex supports needs, it provides significant supports. Any reductions in funding or increased barriers to access will deeply impact this group. There is a significant risk that reduced supports will force participants and families into crisis situations, including unplanned group home placements, carer burnout, loss of employment, and increased reliance on other government systems including health and income support.

Much has been said in recent years about the erosion of many forms of disability support outside of the NDIS. Australia’s Disability Strategy 2021-2031 (ADS) reporting demonstrates the failure of multiple Governments to deliver disability policies and inclusive practices outside of the NDIS system and the failure of the States to provide sufficient supports through health, education and other systems. In the case of Thriving Kids and other foundational supports, including General Foundational Supports, these systems are far from being fully operational and there are few details on how they will work.

The response cannot be to remove access to the NDIS for some and implement heavy restrictions to funding and supports for the remaining participants in the hope that other systems fill the gap. This punishes people with disability for the policy and practical failures of Governments around Australia. These changes will cause harm to people with disability.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

Human rights and the UNCRPD “The introduction of the NDIS represented a significant investment in Australia meeting its obligations under the UNCRPD” (NDIS Review).

The NDIS was a response to UN Convention on the Rights of Persons with Disabilities (UNCRPD) principles, especially that people with disability should have choice and control over their own lives, participate fully in the community and receive supports that increase independence and inclusion.

Under the UNCRPD, the Government must provide a Statement of Compatibility with Human Rights for any legislation that will impact people with disability. The DSA Consortium believes that the application of UNCRPD principles in the Statement for the NDIS Amendment Bill is deeply problematic and does not reflect the actual transgression of human rights which are built into the legislation.

In particular, the Statement seems to deliberately misinterpret the concept of “progressive realisation”, or the recognition that all rights under the UNCRPD might not be achievable immediately but that they should be reached by incremental steps (United Nations, N.D.). This explicitly does not permit retrogressive actions, and so human rights should not be diminished over time.

Furthermore, the reasoning provided in the Statement of Compatibility with Human Rights to justify changes which are not compatible with the UNCRPD are generally about sustainability of the Scheme. Sustainability is not a human right, and it is not a consideration for the application of human rights for an individual. This is in direct contradiction to progressive realisation.

The DSA Consortium posits that this is precisely what is being legislated in the proposed NDIS Amendment Bill and that particular aspects such as changes to support determination and underfunding reasonable and necessary supports are egregious and in flagrant disregard of these rights.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

“My daughter currently receives NDIS funding, which plays a vital role in helping her maintain independence, dignity, confidence, and social connection. These supports are not luxuries — they are essential to her everyday life and wellbeing. People living with disabilities already face many challenges in life. Removing or reducing support does not encourage independence — it risks loneliness, isolation, declining mental health, and increased vulnerability. No parent wants to imagine their child sitting alone within four walls, disconnected from their community and the life they deserve. The government must recognise that ongoing NDIS support provides families with reassurance that their loved ones will continue to live safely, with dignity, inclusion, purpose, and support long into the future.”

Kim, parent of an adult with Down syndrome

Overall, these legislative changes are a breach of human rights and, as a minimum, will undermine the following principles:

• Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; • Full and effective participation and inclusion in society; • Equality of opportunity; and • Accessibility.

The DSA Consortium cannot support any measures which have a retrogressive impact on the human rights of people with a disability.

OVERARCHING CONCERNS

Legislative process and consultation The DSA Consortium has serious concerns about the breadth and depth of legislative change included in the NDIS Amendment Bill and the incredibly short timeframe provided to the community, including Disability Representative Organisations (DROs) to review and respond to these changes.

Once again, the DSA Consortium is also obliged to draw attention to the accessibility of information provided by the Government. Easy Read information about the legislation was only released one week before the close of submissions to the Inquiry and therefore people

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

who require information in this format have had a limited opportunity to read, understand and respond. Further, the Easy Read documents include neither information that accurately describes the proposed legislative changes, nor a description of the impact.

Involvement of people with disability While there are many ways that legislation may be introduced into the Australian Parliament, there has previously been, and should be an effort to include people with disability and their representative organisations in the preparation or early stages of development. We understand the NDIS Amendment Bill represents the biggest cut to any social service in Australia’s history and was not prepared by or with people with disability. There must be a level of engagement, interest in, and recognition of the specialist knowledge that the community brings to these conversations.

Overall this has been an inadequate process which should not have occurred and should not be repeated. The harm that this process is causing cannot be easily quantified but is significant and is entrenching the power imbalance between decision-makers and members of the disability community.

Centralisation of power in responsible Ministers The DSA Consortium is extremely concerned about Ministerial powers contained in the NDIS Amendment Bill. The Ministerial determination powers have insufficient safeguards, consultation processes or parliamentary oversight proportionate to the significant impact they could have on participants. These changes represent a shift towards a centralisation of power with the Minister, and away from due process and oversight provided by the State and Territories, the NDIA or government departments, DROs and broader consideration of lived experience.

The delegation of powers to a Minister in the way in which is contemplated in many of the changes in this legislation is an inappropriate use of legislative instruments in that they limit parliamentary oversight and subvert the appropriate relationship between Parliament and the executive. Such significant changes should be restricted to legislative change, or Class A Rules where there are more appropriate oversights, safeguards and consultation processes.

Further their use in this way does not meet many of the scrutiny principles of the Senate Standing Committee for the Scrutiny of Delegated Legislation including:

• it makes rights, liberties, obligations or interests unduly dependent on insufficiently defined administrative powers; • those likely to be affected by the instrument were adequately consulted in relation to it;

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

• its drafting is defective or unclear; • the accompanying explanatory material provides sufficient information to gain a clear understanding of the instrument; • it trespasses unduly on personal rights and liberties; • it unduly excludes, limits or fails to provide for independent review of decisions affecting rights, liberties, obligations or interests; • it contains matters more appropriate for parliamentary enactment; • in the case of an instrument exempt from sunsetting, it is appropriate for the instrument to be exempt from sunsetting; • in the case of an instrument that amends or modifies the operation of primary legislation, or exempts persons or entities from the operation of primary legislation, the instrument is in force only for as long as is strictly necessary.

It must be acknowledged that once this power exists, it can be utilised by the Minister of the government of the day, which means there are few limitations on their application and a risk of unintended consequences in the future.

Curtailing of oversight and review The DSA Consortium would like to raise serious concerns about the changes that reduce and refuse reviews of decision-making, especially as it applies to eligibility and planning processes. When combined with a lack of appropriate safeguarding mechanisms, and permitting automation in decision-making, this could have serious implications for participants, their families and the community more broadly.

The legislation materials state that the following will not be reviewable decisions: support determinations to reduce a class of supports by a percentage (section 34A), automatic plan renewals (section 50A), maximums or caps on classes of support (section 45C) and transitioning to a new framework plan.

For many people with disability, and especially for people with complex and high support needs, when decisions are made which fail to take into account their personal circumstances, there is a threshold below which the support becomes ineffective, and mechanisms need to exist to ensure unintended consequences and the risk of neglect and harm are able to be addressed. This is an issue which has been increasing in the DSA Consortium community over the past 12 months, where plan reviews have applied ‘average’ or ‘minimum’ supports rather than taking into account individual needs. For example, there are many individuals in the DSA Consortium community who require 1:1 or 2:1 supports most of the time however, the Agency has been applying other support ratios without justification or appropriate consideration of needs or risks created. Situations like

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

this make participants, and the remaining support workers, unsafe. As a result, participants are at risk of having their full range of support from a provider revoked. Requests for intervention in these circumstances has had little effect despite the devastating impact of these decisions, and we are concerned that we will only see an escalation of this if the legislation passes in its current form.

Thank you for the opportunity to respond to this Inquiry. Please find information about the Down Syndrome Australia Consortium at the end of this submission.

Prepared by Down Syndrome Australia for the Down Syndrome Australia Consortium.

Darryl Steff, CEO

Erin Papps, Advocacy and Policy Manager

Jessie Spence, Advocacy and Policy Officer

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

COMMENTARY ON INDIVIDUAL MEASURES

Support determinations

The NDIS Amendment Bill proposes that the Minister can, by legislative instrument, reduce a set of supports by a percentage for all participants, regardless of how those funds are used (section 34A).

These determinations are “for the purposes of ensuring the financial sustainability of the scheme” yet there are no guardrails for how this will be determined, thus allowing for arbitrary determinations.

A blanket percentage reduction has no regard to the reasonableness of the budget in the first place. That a participant can receive less funding than the reasonable and necessary amount undermines the goal of the NDIS. This reduction will remove essential supports and breaches the UNCRPD (Article 19 and 30).

The mechanism for these cuts – applying immediately from a specified date – are also untenable for many people in our community. Any change to supports, routines and daily life must be carefully planned and gradual. There is nothing in the NDIS Amendment Bill which considers circumstances like these for this group of participants.

Further, the ability for these Support Determinations to compound the reduction to supports resulting from any caps to supports determined by the Minister under section 33(2E) is of significant concern. A support need could be reduced below reasonable and necessary by a dollar, ratio or intensity cap under s.33(2E), and then further reduced by a percentage under this section 34A.

The NDIS Amendment Bill includes that the Minister must consider “safety of the participant”, but it is unclear how this will occur. This is not an individualised approach and does not allow for an appeal or review process. There is a high risk that participants will be put in harmful or risky situations from these cuts but will not have any mechanism by which to highlight safeguarding issues or have their funding changed.

Recommendation Amendments to the section outlined in Part 1 of the explanatory memorandum should be removed from the Bill.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

1.1 Assistance with social, economic and community participation supports The Minister has stated that they intend to first use Support Determinations to reduce Assistance with Social, Economic and Community Participation (Core) by 50%, which includes the following subcategories:

• Assistance to Access Community, Social and Recreational Activities • Group and Centre Based Activities • Supports in Employment

People with Down syndrome receive higher social economic and community participation funding than the average NDIS plan, which was identified in the Bill’s Impact Analysis but we are concerned that there was very little investigation into the actual impacts of this change.

Importantly, NDIS data from Q2 FY25/26 tells us that people with Down syndrome spend on average 92% of their social, economic and community participation funding. Therefore, a blunt 50% cut in the budgeted amount in this category of funding is an average real cut of 46% for participants with Down syndrome. This demonstrates how important this funding is for people with Down syndrome and other similar chromosomal variations to live inclusive lives. People in our community told us they use the funding to build independence and life skills, socialise, attend day programs and volunteer, exercise and work in open or supported employment, among many other examples.

Day programs and Supported Independent Living A person with Down syndrome or intellectual disability caused by chromosomal variation requires daily support and assistance in any setting. Many people in our community attend day programs which are funded through social, economic and community participation. If this funding is cut, many day programs will not be able to continue to operate, and instead people will stay in their Supported Independent Living (SIL) home. But many SIL homes are not staffed during the day, so participants will require more SIL funding to ensure their safety during the day. For this reason these cuts are unlikely to reach the savings the Government has budgeted and result in an enormous personal cost to individuals.

The Impact Analysis states that “… the decision to reduce this budget was preferred over others because it does not impact the health and safety of participants” (p231). This is unfounded. Social and community supports can serve to prevent loneliness, segregation and dependence which otherwise would result in serious and expensive health and psychological impacts on the person. As discussed in the findings of the DRC and NDIS

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

Review, a lack of community access and social connection leads to harm, abuse, exploitation and violence.

The Impact Analysis further argues that “participants may shift from 1:1 supports to lower cost group activities”. Some people with Down syndrome and chromosomal variations cannot “choose” to safely shift away from 1:1 (or more intensive) supports to group activities due to the complexity of their disability and its impacts. Some NDIS participants have also already made these changes as far as possible based on funding cuts which have already been implemented by the Agency.

Furthermore, funding within “Core” categories of supports are allowed to be used flexibly between categories and therefore participants may also legitimately be using this budget for essential supports such as supports with daily living and household tasks. It is important to note that people in non-metro regions do not have access to general community groups or services such as public transport that may be able to support participation for some. In regional and rural areas, NDIS is a lifeline that enables people to access the community and be included.

“My funding helps me live independently as my support workers help me prepare meals and help me to keep my unit clean and safe. My support helps me access activities in the community which help me both mentally and physically such as attending gym weekly and swimming. My funding also helps me attend day programs which help me socially, mentally and physically. My funding is very important to help me live a happy independent life.

Please let me continue to enjoy life.”

Michelle, person with Down syndrome

1.2 Capacity Building Supports

The Minister has also signalled intent to use Support Determinations to reduce Capacity Building (Improved Daily Living Skills) funding by 10%, which includes Early Intervention Supports (younger than 9), Therapy Supports (9 or older), Community Engagement Assistance and Delivery of Disability Related Health Supports by a Nurse, among others.

These supports are essential for safety, emotional regulation, communication, skill maintenance, inclusion, and quality of life for many people with intellectual disability.

Additionally, members of the DSA Consortium have reported that over the past 12 months especially, the NDIA has already undertaken significant cuts in participant plans, sometimes

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

a very high percentage cut across an entire category like Assistance with Social, Economic and Community Participation (Core). The legislation and the Government must recognise cuts which have already occurred for this vulnerable cohort and must not use these recent, lower amounts as a baseline for any other reductions in funding.

“Parents have fought so hard for their kids/adults to be active and respected members of their communities. We can’t go backwards now.”

Parent of an adult with Down syndrome

Reasonable and necessary supports

Reasonable and necessary supports are the cornerstone of the NDIS as an individualised scheme. Every person with disability has individual needs based on their disability, age, location, goals and interests, and the concept of reasonable and necessary supports recognises this diversity. These changes in the NDIS Amendment Bill will undermine the individualised nature of the scheme and reasonable and necessary by limiting what people can access based not on their true support needs but on arbitrary limits and by overburdening informal supports.

2.1 Ministerial power to determine maximums for funding, intensity and ratios for any support or class of support

This amendment proposed in section 33(2E) will allow a Ministerial determination to specify a maximum amount of funding, a maximum intensity or a maximum ratio of worker to participant for provision of the support or supports in the class of supports. This is not a reviewable decision.

The DSA Consortium is deeply concerned that this change is not only highly likely to cause harm to participants and those who support them, but is discriminatory towards people with high and complex support needs, many of whom are in our Consortium community.

People with high and complex support needs are likely to have higher overall plan values and therefore are more likely to reach the maximum amount set by the Minister. As an example, a cap of 20 hours on occupational therapy might provide fewer than half the recommended annual hours of support for a person with high and complex support needs. Conversely, those with lower support needs are more likely to receive all the funding they need. This power builds discrimination into the system. People with high and complex supports needs

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

cannot simply tolerate a lower ratio of support than they are determined to need. This poses a significant health, safety and wellbeing risk.

Furthermore, it enables the funding of supports at a level below what has been deemed a ‘reasonable and necessary’ support for a participant. This introduces inequity in people having to pay for any gap in funding for supports which relies on people having the means to do so, with no recognition that most people in the DSA Consortium community receive Disability Support Pension. It also introduces the ability to have a ‘co-payment’ approach.

These changes, combined with the Support Determinations have the potential to reduce supports for people with disability to dangerously low levels, with no safeguards.

Recommendation This amendment must be entirely removed from the proposed legislation.

2.2 Definition of informal supports is far too narrow, particularly as it relates to parental responsibility

The NDIS Amendment Bill applies a much broader definition of parental responsibility than the current NDIS Act (section 34(1)). A particularly risky aspect is legislating the expectation that parents will provide ‘substantial care and support’ (section 34(1G)) and removing the standard that parents of a child with disability should be expected to provide the same level of informal care and support as a parent of a child without disability. There is also no exception to applying parental responsibilities to adult participants in the NDIS Amendment Bill.

It is reasonable to interpret that under the NDIS Amendment Bill, many supports that are currently funded supports will be deemed “parental responsibility”. We have already observed a trend towards this over recent months and years, and fear that this will only increase if the legislation passes as it is currently drafted. This is a significant change from the previous definition which included a comparison to what reasonable parental support for a child without a disability would look like.

Parents, families and carers must not be regarded as an inexhaustible source of labour to replace formal support and programs for people with disability. People with disability deserve experiences and relationships outside their home, and families have the right to be a parent or sibling without significant carer responsibilities which blur these roles.

More broadly, this change has the potential to actually result in an increased cost overall to Governments – with fewer parents and carers able to maintain the same level of work, there will be fewer people working and paying income tax, and more people on income support.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

This is a dangerous precedent that does not acknowledge the need and right of family and caregivers to work to support their family, to care for other children or family members or to avoid burn out.

Recommendation The DSA Consortium would like to see retention of the existing principle that the NDIS should recognise an increased support needs compared to non-disabled peers, but any assessment of parental responsibility must be based on an individual assessment of the participants and their circumstances.

“While parental responsibility is incredibly important, the NDIS must recognise that the ultimate goal for a young adult with a disability is to learn how to live, socialise, and navigate the world without their parents.

As a mother, I provide immense informal support, but I cannot be my son’s sole link to society. Relying entirely on a parent for community access does not build long-term independence; it creates severe vulnerability for the future. Using funding for peer-aged support workers is not shifting parental responsibility—it is an investment in my son’s future, ensuring he builds the skills and confidence to exist in the community independently as he grows older.”

Shirley, parent of young adult with Down syndrome

2.3 The role of community

This Bill includes several references to “the community” as playing a role in supporting participants individual goals and needs, in addition to families and carers (for example, in section 17). While we agree the community must be a part of a participant’s life in an appropriate way, it is not a replacement for individualised, paid support that can be relied upon. Many people value their inclusion in community life but supports may still be required to access the community safely and confidently.

While we agree the community must be a part of a participant’s life, many of these “community” supports do not exist, particularly as they relate to yet to be defined foundational supports, or inclusive mainstream supports.

Recommendation The DSA Consortium would like to see references to “the community” better define what services these relate to and consideration of whether it is appropriate to expect these services to provide the supports anticipated.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

2.4 Value for money and effective and beneficial definitions are very narrow

The proposed section 34(1F) allows supports to be rejected purely because there is “limited or no published peer-reviewed research,” even where experienced clinicians support the intervention, participants have demonstrated clear benefit, families and support teams provide consistent evidence and the support has prevented decline, crisis, or institutionalisation. This disadvantages highly individualised supports and supports for people with rare conditions and/or complex support needs.

Many effective disability supports do not yet have extensive published peer-reviewed evidence because disability research is underfunded. The hierarchy also puts the participant experience last.

The DSA Consortium considers that there is significant risk in how value for money provisions will be applied, specifically “whether comparable supports are available at a lower cost”, will be applied (section 34(1A)). For many people in the DSA Consortium community, many of whom have specialised support needs, there are no comparable supports provided by generalised services. Many participants in the DSA Consortium community require an allied health professional or support person who understand their needs and is trained on evidence-based practice.

This change is open to an interpretation which would cause harm to participants.

Recommendation These amendments should be removed from the Bill, as the current Supports Rules provide an appropriate structure for ‘effective and beneficial’ and ‘value for money’ considerations.

Permanence and requirement for treatment

The NDIS Amendment Bill will introduce treatment requirements in order to meet eligibility for permanent disability. We are concerned about the definition of “all appropriate treatment”(section 24(5)) in the context of an established lifelong disability. The text of the NDIS Amendment Bill says the treatment “can reliably be expected to materially improve, reverse, or alleviate the impact of, the impairment or impairments” (section 25A(1)). This implies that a treatment that improves a person’s functional capacity may impact their access to the Scheme.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

We do not know yet how this provision would apply to a person with a chromosomal variation like Down syndrome. People with Down syndrome and intellectual disability caused by chromosomal variation are likely to need support for their lifetime, even if those needs will change depending on their age, the settings they are in and co-occurring health or disability needs. Chromosomal variations like Down syndrome will usually impact all body systems, and individuals might have impairments in multiple impairment categories, including intellectual, physical and sensory disability, as well as disability-related health concerns. These must be understood to be part of the chromosomal variation and not co- occurring, and not subject to individual treatment processes, or not meeting thresholds in eligibility.

This amendment does not take into consideration the breadth and complexity of disability. This amendment is likely to cause significant confusion and inconsistent decision making from the agency. It also does not take into account that there has not been significant research undertaken to develop an evidence-base for treatments, or even supports and therapies.

The circumstances and diagnosis in which this provision applies, and how it applies must be specified.

There also must be safeguards around what kind of treatment is included in this amendment. It is unclear what evidence threshold there will be for treatments, and how the lived experience of participants will be taken into consideration. It is vital that these guardrails exist before any changes are made so participants are not forced into treatments that are inappropriate, not reasonably accessible or not their choice.

These changes to the eligibility criteria for the Scheme are in breach of the UNCRPD and particularly equality and non-discrimination (Article 5) and Accessibility (Article 9).

Recommendation The DSA Consortium believes that this section cannot proceed in its current form and should be entirely removed from the legislation.

Defining functional capacity

The NDIS Amendment Bill introduces a definition for functional capacity which assesses a person’s ability to undertake activities excluding human or technological assistance and excluding their environmental and personal circumstances. This is inconsistent with the

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

World Health Organisation’s International Classification of Functioning, Disability and Health, which explicitly includes a person’s circumstances and their environment.

This definition will inform a new tool, which will be utilised to determine eligibility for the Scheme. The DSA Consortium has many concerns about whether this is an appropriate method for determining eligibility, and who will be administering the tool. Standardised tools do not adequately capture the functional capacity of people with high and complex support needs, particularly complex communication supports or health related disability supports. This tool also must be able to appropriately capture fluctuating support needs.

The DSA Consortium is also concerned about the impact of applying this definition to the s.25 Early Intervention access. There must be safeguards in place to ensure someone with a permanent disability like Down syndrome or other chromosomal variation is not prevented from accessing individual supports from birth or diagnosis. A person with a diagnosis which provides detail about future functional capacity should not be required to experience a functional capacity delay from their peers to access supports. That is the whole purpose of early intervention.

Recommendation Functional capacity definition and assessments must consider the whole person and the interaction of impairments as well as a person’s environmental and personal circumstances. Early Intervention access to the Scheme must not be impacted by this change in definition.

The relationship between an impairment and provision of support

The NDIS Amendment Bill changes the way supports are determined by requiring the NDIS to only fund supports that arise directly from impairments for which the participant meets eligibility (section 34(1)(aa). In their explainer of the proposed legislation, the Justice and Equity Centre (JEC) describe the Bill as reversing the ‘whole of person’ approach to funding supports. These were secured in the 2024 amendments to the NDIS Act by the disability community and acknowledge that a support need may arise from the interaction of multiple impairments and/or a participant’s other circumstances (Justice and Equity Centre, 2026).

The change to “directly arising from” will be very difficult to implement. Understanding the interplay between disability, health conditions, symptoms and other personal and environmental circumstances is complex, even for health and disability experts. Rarely is

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

there a clear delineation between what symptoms or support needs are caused by different disabilities or other personal and environmental circumstances. The application of measure in practice will likely be extremely uneven and unfair for participants, particularly for the diverse but generally higher support needs members of the DSA Consortium community.

The information provided by the Government to date has provided no clarity on how this change will relate to the Support Needs Assessment, impairment categories and impairment notice processes. To date, most existing NDIS participants do not have a notice of impairment so they do not know what categories of impairment they have been determined to meet, nor which types of supports might be funded for those impairments.

Recommendation This amendment must be entirely removed from the proposed legislation as it is unworkable in its current form.

Automated decision making

The DSA Consortium is concerned about the lack of safeguards and potential for harm in automated decision-making (ADM) in the NDIS, in particular for people with high communication or decision support needs and people without informal supports.

We are concerned that ADM compounds existing barriers in relation to fairness, accessibility and the potential for errors in decision-making. These changes can reduce accountability of the NDIA and decision-makers on the impact of their decisions on individuals and make it impossible for participants to provide alternative inputs over the pre-determined ADM input information. This creates a significant risk of inappropriate budget values, which could cause risks to the health and safety of participants, and increase the likelihood of crisis.

Recommendation As a minimum, any increased use of ADM must include robust safeguards to prevent harm to people with intellectual disability, including protecting the right to appeal and automatic triggers for human intervention in ADM. Any ADM systems must build in accessibility from the beginning, for example by providing alternative formats such as plain language and untimed processes. This work must be done through co-design with people with intellectual disability and the people who support them.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

Limits to plan reassessment

The provision to limit plan reassessment under the NDIS Amendment Bill (s.48) is a significant risk to NDIS participants. Plan reassessments will be limited to changes in the functional capacity related to an impairment for which the participant already meets eligibility criteria; and related to unanticipated, significant and ongoing change. These criteria are very limiting and ambiguous, and the DSA Consortium would like to raise concerns about several of these issues.

The DSA Consortium can foresee that these criteria will be difficult to implement based on interpretation, and would create a situation where a participant or their plan nominee is required to “prove” that a change of situation was “unanticipated”, or that a change in functional capacity is related to an impairment for which the participant already meets the eligibility criteria. Both of these are difficult to prove even for those with expertise in disability and in the Scheme.

NDIS Plans will sometimes fail to appropriately take into account anticipated changes such as the expected ending of formalised education, or the degeneration of a degenerating condition. Further, the definition does not allow for the cumulative effect of “anticipated” changes such as those that might occur during the ageing and changing needs of a child but which might mean that assumptions made in a planning process are incorrect.

Additionally, there are factors such as the closure of a service provider that could have a significant impact on a participant, particularly where there is a thin market, but do not meet the definition for a plan reassessment.

The plan reassessment changes only make sense when plan reviews, support needs assessment and budget processes work perfectly, and when people with disability lead lives that are predictable and well supported. This is not reality.

The DSA Consortium is concerned that the NDIA and Department of Health, Disability and Ageing haven’t investigated the actual cause of plan reassessments, which are cited as a significant cause of cost inflation in the Scheme. Punishing participants for receiving plans which are insufficient, didn’t consider the evidence provided for support needs, the application of arbitrary funding limits, or any other reason that a plan might not be meeting the minimum support needs for a participant, will cause harm.

Recommendation These amendments cannot proceed in their current form, they are written in broad terms which means they are likely to be applied unevenly and inappropriately. In particular the use of the word “unanticipated” must be removed from the criteria. These must be reviewable

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

decisions and there must be safeguards in place to ensure participants, parents, families and carers safety, wellbeing and a family’s specific circumstance is considered in decision making. 8. Plan renewals

Proposed subsection 50A(2) provides that one-off funding does not roll over into a renewed plan. This does not appear to consider the circumstances when a plan contains one off funding that has not been spent by the end of a plan (through no fault of the participant, and remains a reasonable and necessary support) – there is no mechanism by which this funding can continue in a new plan.

The DSA Consortium is also concerned that the Minister has the power (s.50A(3)) to make additional “alterations” to a new plan by Ministerial determination. Whilst the notes outline that the intention of this is for items such as indexation for plans, again there are insufficient safeguards, consultation processes or parliamentary oversight to such a broad power.

Recommendation The powers conveyed in s.50A(3) should be removed from the legislation or more narrowly defined to set circumstances. Section 50A(2) should be amended to allow for CEO to roll- over one-off funding if unspent and still needed as a reasonable and necessary support. 9. Other available support systems

Proposed section 25B allows for rules to be made that prescribe a group of participants or impairments that are deemed to have “alternative supports” available. The DSA Consortium is concerned with how these wide-ranging powers could be used.

Recommendation The DSA Consortium believes that this section cannot proceed in its current form and recommends that such requirements, if deemed necessary, are included in legislation, not in Rules to strengthen the governance and oversight of such changes. 10. Plan suspensions

The NDIS Amendment Bill allows for the suspension of plans where “reasonable attempts” have been made to contact the participant and the participant has not responded within 90 days.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

Though plan suspensions are sometimes necessary, there must be consideration that a suspension and revoking access to NDIS funding is a high risk to a person’s health, safety and life if done bluntly.

The only safeguarding provided in the NDIS Amendment Bill is a requirement for the NDIA to attempt “reasonable contact” with the participant. The DSA Consortium believes that this is insufficient. For example, there must be consideration of people with intellectual disability who are under guardianship or public trustee arrangements, people with intellectual disability who have a proxy that could reasonably be unable to be contacted for periods due to health concerns, or people with intellectual disability who may be experiencing neglect or abuse and may not be able to contact the NDIA.

There must be a robust and trauma informed process to ensure harm does not occur as a result of a plan suspension.

Recommendation The DSA Consortium believes that “reasonable contact” must be more clearly defined, including the number of contacts, the use of multiple methods (letter, phone call, email) as well as a consideration to the participant’s personal circumstances. 11. Fraud and integrity measures 11.1 Registration of NDIS providers

The DSA Consortium supports the Taskforce recommendations of a risk proportionate registration model and is supportive of the legislative changes to implement increased registration.

Recommendation Further consultation on these measures is required. It is critical that future registration requirements do not impact the ability for participants to have individualised supports.

11.2 Civic Penalties and regulatory powers, Information gathering powers, Retention of records and Reducing claim times

There are some amendments in the NDIS Amendment Bill that the DSA Consortium supports in principle but would like to see better safeguards for participants including:

• Amending the definition of NDIS provider. • New compliance and enforcement powers for the NDIA. • New NDIA powers to investigate criminal activity, including amended information gathering powers.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

• Requirement that providers, nominees and participants retain records relating to the provision of supports and/or claiming for specified periods of time. • A civil penalty for providers who do not comply with retention of records requirement. • Requirement that claims for NDIS amounts are made within 90 days of support being provided.

Recommendation These powers must be in line with other similar systems and include protections to ensure participants have ongoing supports and are not penalised if their funds are misused. It is important to acknowledge that people with disability are overwhelmingly the victims or fraud and other poor provider behaviour and are not the responsible party.

11.3 Registered plan management providers

The DSA Consortium considers that more stringent controls on plan management is generally a positive change.

Recommendation We are concerned that in the implementation of this measure it would be important to consider the number of, and access to providers to ensure there is minimal impact on choice and control. It is also important to be clear about the role of a Plan manager in terms of being purely administrative rather than an arm of the Agency implementing policy.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402

About the Down Syndrome Australia Consortium

Down Syndrome Australia (DSA) was established in 2011 as the national peak body for people with Down syndrome and their families in Australia. Our vision is that people living with Down syndrome are valued and have full access to social and economic inclusion to reach their full potential. Down Syndrome Australia is one of twelve National Disability Representative Organisations (DRO) and leads a consortium of organisations to represent people with intellectual disability and their families and supporters, with a focus on intellectual disability caused by chromosomal variations (DSA Consortium).

People with these chromosomal variations experience intellectual disability varying from mild to severe, often accompanied by degrees of physical disabilities, higher rate of co-occurring neurodevelopmental conditions, communication disabilities and health issues.

It is important that the views of people with chromosomal variations and their families and supporters are represented in the development of policies and services that affect their lives. Families and supporters play a significant role in advocacy, skill development and providing supports and care. They are a critical part of the lives of a person with intellectual disability and form an important part of our advocacy work.

All our work is within the human rights model of disability and informed by the Convention on the Rights of Persons with Disabilities (UNCRPD).

Our consortium members are:

• Down Syndrome Australia and its’ member organisations - ACT Down Syndrome and Intellectual Disability, Down Syndrome and Intellectual Disability Queensland, Down Syndrome Victoria and Down Syndrome Western Australia

• Angelman Syndrome Association Australia

• Australian X and Y Spectrum Support

• Cri du Chat Support Group

• Fragile X Association of Australia

• Prader-Willi Syndrome Australia

• Smith-Magenis Syndrome Australia

• Turner Syndrome Association of Australia

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 402