Significant concerns about narrowing access to the NDIS (Individual advocacy) | External submission

Submission 655

Senate Inquiry into the NDIS Amendment

(Securing the NDIS for Future Generations) Bill

Family Advocacy

Date of Submission: 29 May 2026

Submission 655

Contents

About Family Advocacy ………………………………………………………………………………………………… 3

Contact details ……………………………………………………………………………………………………………. 3

Summary of Recommendations …………………………………………………………………………………….. 4

Introduction ………………………………………………………………………………………………………………… 5

Fundamental problems with Functional Capacity Based eligibility proposal ………………………….. 7

The “appropriate treatment” requirement is unfair …………………………………………………………….. 7

Greater onus placed on parental responsibility …………………………………………………………………. 8

Reasonable and necessary support changes undermine the original intent of the NDIS Act ……. 9

Support determinations give the Minister too much power and need significant amendments ….. 9

Automated assessments and decision making ignore individuality and complexity ………………. 10

Reassessments are too restrictive and expose people with disability to crisis ……………………… 10

Safeguard Self-management ………………………………………………………………………………………. 11

Conclusion ……………………………………………………………………………………………………………….. 12

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 2

Submission 655

About Family Advocacy

We are a not for profit disability advocacy organisation that works across New South Wales (NSW) to advance and protect the rights and interests of people with developmental disability. We have been providing individual and systemic advocacy for 35 years. We regularly field advocacy enquiries from families for, and alongside, their loved ones with disability in a broad range of areas that cover the whole of life.

Nationally, Family Advocacy is part of a number of alliances including the:

National Alliance of Capacity Building Organisations (NACBO), an alliance of not-for profit, values-based, capacity building organisations that span across Australia with a combined experience of 100 years.
Australian Coalition on Inclusive Education (ACIE), a national coalition of 25 organisations working together to advance inclusive education with a combined membership of over 1.2 million Australians.

We hold the vision and belief that all people with disability are valued citizens and should be supported to contribute to society through all facets of valued social and economic participation, similar to the overall objectives of the NDIS.

Contact details

Family Advocacy welcomes the chance to speak further about this matter at an in-person hearing.

To arrange this, or for more information about this submission, please contact:

Leanne Varga

Systemic Advocacy and Campaigns Manager

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 3

Submission 655

Summary of Recommendations

Recommendation 1:

This Bill urgently needs amendments to:

provide the necessary safeguards to avoid preventable harm to people with disability,
preserve the original intent of the scheme,
include a link between need and funded support,
ensure fair access and permanence rules, and
ensure limits on Ministerial and delegated powers. These amendments will take time and require proper consultation with the community.

Recommendation 2: Any assessment of functional capacity must reflect real-world conditions, including the role of family and informal supports.

Recommendation 3.1: Children with clearly permanent impairments and lifelong support needs should not be required to exhaust all “appropriate treatment” before meeting the disability requirements for the NDIS.

Recommendation 3.2: The assessment of permanence must also factor in a family’s individual circumstances, including financial, geographic and practical barriers to accessing treatment.

Recommendation 4.1: Ensure the NDIS does not place unreasonable reliance on families and informal supports, and maintains adequate funded supports to prevent family burnout and crisis.

Recommendation 4.2: Provide a definition and assessment of parental responsibility that accounts for the significant variation in level and complexity of support needs

Recommendation 5: Ensure “reasonable and necessary” supports remain individualised, rather than driven primarily by cost containment or reliance on informal supports.

Recommendation 6: Reject measures that broadly reduce, or enable the reduction of, social and community participation supports regardless of individual need

Recommendation 7: Reject standardised and automated assessments and decision making.

Recommendation 8: Ensure reassessment processes remain timely, flexible and responsive to changes in circumstances, including through an emergency reassessment pathway to prevent crisis, family breakdown and avoidable harm.

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 4

Submission 655

Introduction

Family Advocacy welcomes the opportunity to provide a submission to the Senate Community Affairs Committee (the Committee). The NDIS has, on the whole, been a positive gamechanger for many people with developmental disability, and their families, to be able to access community and live full meaningful lives. We accept that reforms are required to ensure the sustainability of the scheme as well as to strengthen planning, safeguarding and regulatory oversight.

We are committed to working with our Parliamentarians to ensure it is fit for purpose and does not leave people with developmental disability, and their families, worse off. To achieve this, legislative reform must adopt all of the NDIS Review recommendations as a whole. Unfortunately, the current Bill cherry picks from these recommendations.

We are also deeply concerned at the very narrow window that the community has been granted to make submissions with regard to this Bill. The two-week submission window has denied the disability community the chance to provide comprehensive feedback. We have had insufficient time to connect with the community we represent, to hear their concerns and be able to workshop solutions.

This Bill is too broad and consequential to be rushed.

If passed, the proposed reforms will fundamentally change the operating model of the NDIS. This will have been done without adequate consultation, co-design or testing with people with disability, families, advocates, states and territories, or affected service systems.

In its present state, the Bill also leaves key policy settings unresolved.

For a genuine consultation process, we recommend the Committee take the time to get it right. The Committee must genuinely engage people with lived experience of disability, including families of people with disability, to share the foreseeable negative consequences of this Bill.

Recommendation 1:

This Bill urgently needs amendments to:

provide the necessary safeguards to avoid preventable harm to people with disability,
preserve the original intent of the scheme,
include a link between need and funded support,
ensure fair access and permanence rules, and
ensure limits on Ministerial and delegated powers. These amendments will take time and require proper consultation with the community.

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 5

Submission 655

We strongly urge the Committee to press pause on this Bill

The above image illustrates the process of social devaluation experienced by many people with disability and the cumulative harm that can result over time. Each “brick” placed upon the individual represents a social attitude, system failure, or structural barrier that weighs the person down. It begins with experiences such as rejection, segregation, stereotypes, separation from family and friends, low expectations, and being viewed as having less social worth. These forms of devaluation compound into deeper harms including poverty, loss of control over one’s life, reduced opportunities for meaningful social roles, and not being treated as an individual. Over time, the accumulation of these experiences leads to weakened confidence, poorer health and wellbeing, vulnerability to abuse and neglect, reduced rights, and exclusion from ordinary community life.

The image demonstrates that harm does not usually occur through one single act, but through the ongoing accumulation of social exclusion, lowered expectations, and systemic barriers that progressively diminish a person’s opportunities, autonomy, safety and sense of belonging. It reflects how devaluation can become self-reinforcing across a person’s life unless intentional inclusion, valued roles, strong relationships, and appropriate supports are present.

We sincerely request that another “brick” not be added by passing this Bill too quickly and piling more harm on people with disability and their families. We explain some of our concerns below and note that we did not have time to comment on all of the Bill due to the time constraints and instead focussed on the concerns that relate to the cohort that we represent, people with developmental disability and their families.

Note: Image © Community Resource Unit www.cru.org.au. We thank CRU for granting us permission to use this image.

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 6

Submission 655

Fundamental problems with Functional Capacity Based eligibility proposal

Family Advocacy is deeply concerned by the proposed definition of “functional capacity” in the Bill. This definition seeks to assess a person’s ability in isolation from the supports, relationships and environments that enable their participation in everyday life.

Functional capacity cannot be meaningfully understood outside the real-world contexts in which people live. For many people with developmental disability, capacity is shaped by environmental factors, support relationships, assistive technology, communication supports, sensory environments, routine, and the sustained role of family members who provide significant lifelong advocacy, coordination and unpaid support.

For children and young people with developmental disability, their functional capacity cannot be understood without the context of their family. This is especially true in cases where there is more than one child with disability.

Excluding these factors from assessment creates a distorted and inaccurate picture of a person’s actual support needs. Furthermore, it risks unfairly excluding people whose disabilities are fluctuating, episodic, complex or highly context-dependent. It also ignores the reality that families are often the foundation that enables participation, inclusion and stability, frequently filling gaps where formal supports are absent or inadequate.

Recommendation 2: Any assessment of functional capacity must reflect real-world conditions, including the role of family and informal supports.

The “appropriate treatment” requirement is unfair

Family Advocacy is strongly opposed to the proposed “appropriate treatment” and permanence requirements within this Bill. These requirements risk creating unfair and unrealistic barriers to NDIS access for people with developmental disability and their families.

The Bill would require people to undertake “all appropriate treatment” before an impairment is considered permanent, even where the permanence of the disability is lifelong from an early age or where treatment is financially inaccessible, unavailable locally, subject to long waiting lists, or otherwise practically unattainable.

This approach fails to reflect the lived reality of families who already spend years navigating fragmented systems, paying privately for therapies, travelling long distances, and attempting to access services that often do not exist in practice.

For many children, permanent and lifelong disability is evident from an early age, yet the proposed changes risk delaying support until functional capacity declines further or families can prove they have exhausted every possible intervention. The NDIS must not become a barrier to supports and a hindrance to families looking to help their loved ones with disability.

Furthermore, this requirement will disproportionately impact rural and regional families, low-income households, and those without strong informal supports.

Family Advocacy is concerned these provisions shift the burden of systemic service failures onto families themselves, entrenching inequity and delaying access to the early and ongoing supports that enable people with developmental disability to participate fully in community, social and economic life.

Recommendation 3.2: The assessment of permanence must also factor in a family’s individual circumstances, including financial, geographic and practical barriers to accessing treatment.

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 7

Submission 655

Greater onus placed on parental responsibility

Family Advocacy is concerned that the proposed amendments place increasing reliance on families, carers and informal supports without adequately recognising the cumulative pressures many families already experience.

The Bill places greater emphasis on parental responsibility in determining funded supports for children with disability, creating concerns about subjective and inconsistent decision-making. Families must be able to demonstrate when the level of care, supervision and support they provide goes well beyond ordinary parenting expectations for a child of a similar age without disability.

The strengthened assumptions around parental responsibility, particularly for children with disability, risk shifting greater responsibility onto families while limiting access to funded supports.

Families of people with developmental disability already experience significant financial strain, workforce impacts, exhaustion and reduced wellbeing as they provide lifelong advocacy, supervision, emotional support and care.

“My fourteen-year-old has developmental disabilities. The school day ends at 3pm, but he cannot walk home himself, so when we have no support worker, I have to take time out of my full-time job to pick him up. Doing so adds extra time onto the end of my work day.

A few days ago, I came out to find that my son had opened every single ring-pull can in the pantry while I was finishing my work in the home office. There was sardine juice and beans everywhere. This isn’t an isolated incident. Another time recently, I came out to find that he had tried to start cooking and had cracked a dozen raw eggs into the bottom of an appliance. The eggs had dripped down into the wiring, and we had to throw the whole thing out.

These are not the regular behaviours of a rebellious teen. My son needs the supports that the NDIS provides, and so does the rest of the family. If we don’t have sufficient NDIS supports for our son, I will have to quit my job. Then I can’t pay the mortgage. Then my entire family is homeless. I don’t believe the Government wants more women out of work. Please don’t rush this Bill through.” – Family Advocacy parent

The NDIS must not operate on the assumption that families can provide unlimited unpaid care. Doing so risks family burnout, reduced workforce participation for women, financial and psychosocial crises, and reduced long-term sustainability for both the person with disability and those who support them.

The expectation that families can continue to absorb increasing caring responsibilities indefinitely is unrealistic and fails to reflect the vastly different circumstances between households, including differences in financial security, health, housing stability, available support networks and caring capacity. Based on the added stress within their family, this will no doubt have a negative ripple effect on the person with disability.

The majority of our enquiries at Family Advocacy are from parents who are already physically and emotionally stressed, exhausted, and facing financial strain from the barriers they face through the school system, including gatekeeping, forced partial enrolments, suspensions, lack of reasonable adjustments or an independent complaints system, to name a few.

Removal of access to NDIS, and reductions of funding without rights for review will place a huge toll on our families and lead to crisis.

Recommendation 4.1: Ensure the NDIS does not place unreasonable reliance on families and informal supports, and maintains adequate funded supports to prevent family burnout and crisis.

Recommendation 4.2: Provide a definition and assessment of parental responsibility that accounts for the significant variation in level and complexity of support needs.

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 8

Submission 655

Reasonable and necessary support changes undermine the original intent of the NDIS Act

Family Advocacy is greatly concerned that the proposed changes to the “reasonable and necessary” framework shift the NDIS away from its rights-based foundations and toward a model increasingly driven by cost containment and Scheme sustainability. While sustainability is important, it must not come at the expense of the rights, inclusion and participation of people with developmental disability.

The proposed changes risk separating recognition of a person’s genuine support needs from the funding of those needs, while placing growing reliance on families and informal supports without adequate safeguards or resourcing. Families already provide significant lifelong advocacy, supervision, emotional support and coordination, often filling gaps left by formal systems, and these supports should not be treated as an unlimited substitute for funded disability supports.

Family Advocacy is concerned that the increasing focus on “value for money,” and shared (congregated) supports may undermine choice, control and individualised support, weakening the capacity of people with developmental disability to participate fully in social, community and economic life. Without adequate safeguards, the proposed amendments risk shifting responsibility from government onto families, particularly mothers and ageing carers, increasing exhaustion, financial strain and long-term safeguarding risks.

Recommendation 5: Ensure “reasonable and necessary” supports remain individualised rather than driven primarily by cost containment or reliance on informal supports.

Support determinations give the Minister too much power and need significant amendments

Family Advocacy is seriously concerned by the proposed powers allowing broad reductions to support categories, particularly Social, Community and Civic Participation (SCCP) supports, in the name of Scheme sustainability.

These supports are not optional extras. They are critical safeguards that enable people with developmental disability to build relationships, participate in community life, develop independence, reduce isolation and maintain long-term stability.

The proposed provisions would allow supports already assessed as reasonable and necessary to be reduced through broad Ministerial determinations with limited oversight or review rights, creating serious concerns regarding transparency, accountability and human rights.

We are particularly concerned that funding reductions may push people toward shared or congregated support models out of necessity rather than genuine choice, despite the findings of the Disability Royal Commission regarding the risks of segregation, exclusion and social isolation.

The impacts will also extend to families, who already provide substantial unpaid advocacy, supervision and support, often preventing crisis and filling gaps left by formal systems. Reductions to participation supports risk increasing pressure on families, particularly women and ageing carers, while undermining the social and economic participation of people with developmental disability as valued members of the community.

Recommendation 6: Reject measures that broadly reduce, or enable the reduction of, social and community participation supports regardless of individual need.

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 9

Submission 655

Automated assessments and decision making ignore individuality and complexity

Family Advocacy is concerned by the proposed expansion of automated decision-making within the NDIS, particularly given the complexity and highly individualised nature of disability support needs. Participants have the right to understand how decisions affecting their lives are made, what information has been relied upon, and how conclusions have been reached. Increased reliance on automated administrative processes risks reducing transparency, procedural fairness and meaningful human engagement within an already complex system.

This is especially concerning for people with developmental disability, psychosocial disability, fluctuating conditions, communication barriers, trauma backgrounds, and culturally diverse participants whose circumstances may not be accurately reflected through standardised scoring systems or algorithmic models.

Many participants and families may struggle to understand, challenge or navigate automated decisions, increasing the risk of disengagement, distress and unfair outcomes. Family Advocacy believes that any use of automation within the Scheme must include strong human oversight, transparent reasoning, accessible review pathways and safeguards that recognise the nuanced and deeply personal realities of disability and support needs.

Recommendation 7: Reject standardised and automated assessments and decision making.

Reassessments are too restrictive and expose people with disability to crisis

The proposed reassessment framework creates significant barriers to participants accessing timely adjustments to supports when circumstances change.

These proposed changes, including requiring changes to be “significant” and “ongoing”, extending decision timeframes from 21 to 90 days, and removing important safeguards, fail to reflect the lived reality of many people with developmental disability and their families.

Disability support needs can change rapidly as a result of:

behavioural escalation,
mental health deterioration,
housing instability,
breakdown of informal supports,
family and carer exhaustion. Families are often the primary coordinators of support and crisis prevention, yet the proposed framework risks leaving them without timely assistance during periods of acute stress and instability.

The absence of an emergency reassessment pathway is particularly concerning.

Delays in responding to urgent changes in circumstances may increase the risk of crisis, neglect, unsafe living situations, family breakdown, and avoidable hospitalisation.

Reassessment processes must remain flexible, timely and responsive to real-world circumstances, with safeguards that prioritise participant wellbeing, family sustainability and early intervention over administrative delay.

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 10

Submission 655

Safeguard Self-management

Family Advocacy is concerned that self-management will be jeopardised due to all of the above concerns which includes a greater pressure to move to congregated support settings, which is what the NDIS was moving away from. We need to ensure people are not forced into Agency or provider models that do not suit their lives or needs.

Self-management is hugely beneficial and cost effective to the families we know who support their loved one. Self-management allows for:

genuine choice and control over direct employment of supports,
highly individualised supports,
consistency of the support worker. This leads to a safer and more stable arrangement for the person with disability.

“We have been self-managing our child’s plan from the start. Doing so has allowed us to identify and engage with the supports that suit our child.

Self-managing affords us the agility to add reasonable and necessary supports when things get hard, and to easily change support workers and/or providers, if necessary.

This system doesn’t suit every participant and their family, but it suits us fine. Self-management is a much more financially efficient way for the scheme to run. The idea that we might have to go through a ‘middle man’ or additional bureaucratic systems to navigate these same processes is mind-boggling.”

– Family Advocacy parent

Recommendation 9: Safeguard self-management within the NDIS by ensuring participants and families retain genuine choice and control over how supports are delivered, and are not pressured into provider-controlled or congregated models of support.

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 11

Submission 655

Conclusion

Family Advocacy acknowledges the importance of ensuring the long-term sustainability of the NDIS, and supports reforms that strengthen safeguards, planning and accountability. However, sustainability cannot be achieved by narrowing access, reducing individualised supports, increasing reliance on unpaid family care, or introducing new and rigid administrative processes that fail to reflect the lived realities of people with developmental disability and their families.

Throughout this submission, we have highlighted significant concerns that the proposed amendments risk shifting the Scheme away from its original rights-based intent and toward a framework increasingly driven by cost containment, standardisation and reduced oversight.

People with developmental disability are valued members of the community with the right to participate fully in social, economic and community life. Families play a critical and often lifelong role in making this participation possible, frequently filling gaps left by under-resourced systems while already experiencing significant emotional, physical and financial strain. The cumulative effect of the proposed changes risks increasing family burnout, crisis, exclusion and long-term harm.

We urge the Committee to pause and take the necessary time to genuinely consult with people with disability, families and representative organisations to ensure the legislation is safe, and fit for purpose. Reform must strengthen the capacity of people with disability to live ordinary and inclusive lives in the community, not add further barriers, burdens and uncertainty to those already carrying so much.

Family Advocacy would normally provide more family case studies to support the concerns we raise. However, due to narrow submissions window, we have not been able to do so in this submission, instead encouraging families to make their own submissions to the Committee.

We welcome an invitation to the hearing or the opportunity to provide any case studies should the Committee so desire.

Yours sincerely,

Cecile Sullivan Elder Leanne Varga

Executive Officer Systemic Advocacy and Campaigns Manager

Family Advocacy is registered with the Australian Charities and Not-for-profits Commission

ABN 82 855 711 421

Inquiry into the NDIS Amendment (Securing the NDIS for Future Generations) Bill Page 12