Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 | External submission

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1713

Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submitted by:

Mother and sole Primary Informal Carer of

Introduction - I welcome the opportunity to make a submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (“the Bill”).

I write as the mother and sole primary informal carer of my 36-year-old daughter, who lives with severe intellectual and complex disability and requires 24-hour support.

I strongly oppose the proposed legislation and urge the Senate to reject the Bill in its current - form.

My concerns relate particularly to the proposed tightening of what constitutes “reasonable and necessary” supports, reductions to community participation and capacity-building supports, the commissioning and reduction of Support Coordination, and policy directions that appear to favour larger provider-led and congregate models of care over genuine self- direction, individualised supports, and community inclusion.

In my view, these changes risk undermining the core principles upon which the NDIS was established: choice and control, social and economic participation, individual dignity, human rights, the principles of the UN CRPD on which the NDIS was begun and which Australia has ratified, and the right of people with disability to live ordinary lives within their communities.

Due to my own exhaustion and burn out and the lack of time given to properly digest and respond to this complex legislation, I will not be addressing every aspect of this bill, all of which I consider to be backwards steps and deeply harmful to the principles originally intended for the NDIS of choice and control, reasonable and necessary supports, human rights and individualised supports and deeply harmful to people with disability and their families.

Concerns Regarding the Proposed Legislative Changes

I am deeply concerned that the proposed changes to NDIS funding and support categories will result in reduced access to:

 community participation supports;

 capacity-building supports;

 allied health and therapeutic supports;

 support coordination;

 self-directed and self-managed arrangements.

 Violate the principles of choice and control and reasonable and necessary

I am particularly concerned that the practical effect of the Bill will be to pressure participants into more restrictive, provider-controlled, and congregate models of support, including group homes and centre-based day programs.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1713

My daughter does not want to live in a group home with people she has not chosen to live with, in a home or location she has not chosen, nor should she be forced into segregated settings because of policy changes or funding reductions. - The proposed reforms appear inconsistent with Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), including the rights relating to:

 independent living, choosing where and with whom to live;

 community inclusion;

 Meaningful and paid work;

 autonomy and self-determination;

 freedom from segregation and institutionalisation;

 Supported decision making

Choice and control, the original intention of the NDIS, are not abstract concepts for our family. They are the rightful foundation of my daughter’s safety, emotional wellbeing, regulation, and achieving her vision for her good life and have an amazing quality of life. It is the means by which she has autonomy over her life decisions, where her trained team support her with decision making around her choices. Both big and small life choices.

The Importance of Self-Directed Supports

My daughter currently lives in her own rented home with her dog, chooks, bee hives and a thriving vegetable garden and is supported by a small team of Mentors/Support workers whom we have personally recruited, directly employed and trained intensively and thoroughly in-the personalised supports requires to live an inclusive, connected and full life in her community. This has been informed by contemporary practices of person centred disability support, inclusion, human rights and the input of her allied health professionals on keeping her regulated, -attentive, safe and having support for communication, movement, growing independence skills and the things wants to do and achieve in her life.

We self-direct supports because this model has enabled her to live safely, - meaningfully, and successfully engaged within her community. It allows one to one support arrangements to be tailored to her communication style, sensory needs, routines, emotional regulation, and-personal goals and vision.

has agency during our recruitment process through interviewing and choosing, using supported decision making processes, the person she would like to support her. With the assistance of her skilled support team participates in activities of her choosing,-including dance, circus skills, bushwalks, gardening and choir. She volunteers at a local food co-operative, operates a small microbusiness making and selling sweet treats through local shops, holds market stalls for community-events and walks dogs for older people in the community. She is well known, seen and valued in her community.

This represents a full and meaningful life that has chosen and is well and skilfully supported to achieve. These activities and are not “extras” or luxuries. They are essential components of a good life - of social and community inclusion, dignity, wellbeing, skill maintenance, identity, emotional regulation, fulfilment,- connection and safety.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1713

Importantly, it is friendships gained through community connections in regular community places, like her volunteering and microbusiness, that helps keep vulnerable people like safe. is known within her local community through her regular participation in activities and volunteering. If she is absent, people notice and check in. This informal network of social recognition and belonging is protective and cannot be replicated through-segregated service- models, the kind being proposed in the current legislation.

It is very important that we can continue to self direct supports, recruiting and training them in specific and individual support needs including her individual needs around communication, practical support in the household and community, personal care, emotional regulation and safety and to support her-in her activities, volunteering and microbusinesses.-This model cannot be replicated in a group setting under a provider. would lose her community connections, her microbusiness and the dignity, choice and lifestyle she has chosen and we have built over many, many years.

The Impact of the Proposed 30-50% Reduction to Community Participation Funding- I am extremely concerned by proposals to reduce funding for community participation supports by up to 50%, and the devastating impact this would have on my daughter and other people with disability.

It is disingenuous how this was spoken of by the minister on budget night. That support - workers scrolling on phones was the reason for the cuts. Poor support worker practices and poor training and oversight by providers should be addressed, and urgently. Their job is to support people to make community connections and friends, not be a substitute friend or a rude companion. This is not the fault of people with disability. Train the support workers, do not punish the people with disability by removing crucial community participation funding. This is terrible messaging and decision making on the part of the government.

Community participation supports are not optional extras or recreational frivolities. For this funding forms a significant part of her package of essential supports that enable her to form friendships and community connections, support for her microbusinesses, safety, emotional regulation, communication, wellbeing, inclusion, independence, and protection-from isolation and harm. When she is connected, she is known and safe. It enables her with support to see her doctor, buy her groceries, pay her bills, attend therapy, get exercise, and do life admin, as well as visit friends, get a haircut and yes, meet up with her boyfriend for a coffee, like everyone else. She needs support to do these things.

ability to participate in ordinary community life depends entirely on the skilled support provided by her support team. Without adequate support, she cannot safely access her community at all, maintain relationships, participate in volunteering, continue her-microbusiness activities or attend the activities that support connection, friendships and her wellbeing, like dance and choir.

The proposed reduction would have profound consequences for including:

 increased social isolation and loneliness; -  loss of community connection and belonging;

 deterioration in emotional regulation and mental wellbeing;

 increased vulnerability and safety risks;

 loss of communication and functional skills;

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1713

 loss of confidence and independence;

 increased behavioural distress due to disconnection from friends and community places, disruption of routines;

 I would need to step in and support again for much of her daytime supports further exhausting me;

 increased reliance on crisis supports - For , community participation is the foundation of her quality of life and emotional stability, supported by her skilled team who understand her communication style, sensory and emotional regulation needs, and support requirements. These supports allow to contribute- fully and meaningfully in her community and be a respected, valued and known community member with valued roles. - The suggestion that people with profound disability should have their community participation reduced because it is considered non-essential reflects a deeply harmful misunderstanding of disability support and human rights.

For people with disability, participation in community life is not a privilege. It is a fundamental human right recognised under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), including the right to community inclusion, social participation, autonomy, and equal citizenship. takes part in civic life as a full citizen - and she votes.

The likely outcome of these reductions is not sustainability. It is the gradual removal of - people with disability from visible community life and a return to segregation, loneliness, and exclusion and increased cost in other systems.

I strongly urge the Senate to reject any proposal that arbitrarily reduces funding for community participation supports. It will result in significant harm to many, including and their informal carers.

Concerns Regarding Automated Assessment Tools and Reduced Human Oversight - I am also deeply concerned by reports of the proposed increased reliance on automated assessment tools, standardised budgeting systems, or algorithm-based decision-making processes within the NDIS.

All people with disability, including those with severe intellectual disability like and highly individual and complex support needs cannot be accurately assessed through rigid automated systems, standardised functional scoring, or computer-generated funding models alone. -

My daughter’s support needs, safety, wellbeing, communication, emotional regulation, and ability to participate in community life are deeply personal and highly contextual. They cannot be properly understood through data points, limited short assessments, or inflexible automated processes and without a human being with their oversight who has received extensive training and has insight into the support needs and lived experiences of individuals with intellectual disability. And who also listens to the knowledge and experiences of those who know and love them.

I am particularly concerned that poorly designed automated systems will result in participants receiving inadequate supports that fail to reflect the reality and complexity of

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1713

their daily lives. This could have a very serious impact for many people, including my daughter.

For people like with severe disability, inadequate funding can result in:

 loss of essential supports leading to loss of skills; -  increased loneliness and isolation and the safety risks resulting from that;

 Increase in stress and dysregulation;

 breakdown of participation in community activities and events leading to disconnection from community members, loneliness and greater risk and lack of safety of not being missed;

 loss of well trained, personally chosen and recruited and trusted workers and as well as the longstanding relationship with therapists who have known and worked with her for years;

 deterioration in mental and physical health;

 family crisis and increased carer burnout as I would be forced to pick up the gaps in her supports at 66 years of age and already exhausted and burnt out;

 increased risk of neglect, exposure to abuse, possibility of having to change her living arrangement and the immense disruption and distress that would cause, and long-term harm.

and all participants and families, must have access to suitably qualified human decision-makers, who have had excellent training into the impact and lived experiences of people with severe intellectual disability (in case) and who understand each-person’s individual circumstances, communication needs, support and emotional regulation needs, the risks, and personal goals and vision for their life. - Equally important, and people with disability and their families must have accessible, timely, and independent avenues to challenge or correct decisions that are inaccurate, inappropriate, or harmful. - It is deeply disturbing to know that in the proposed legislation there is no recourse to questioning and correcting funding decisions made on a person‘s plan that result in harmful and inadequate funding to maintain skills and connection and be safe and regulated. This will lead to harm. Some people with disability could die when inadequate supports are given in an automatic process.

The ART process is horrendously expensive, punitive, litigious and deeply unfair with highly paid NDIS lawyers opposing people with disability and their families, many of whom cannot afford representation. The vast majority of these cases are won by the participants- over70%

however the human and emotional and physical cost is enormous. This needs to be done better.

Respectfully co designing a plan with the people with disability and their families and allies would result in the best result for all, through equal and respectful dialogue. Respectfully co- designing the NDIS and its processes would also result in better outcomes and less harm for all.

I know from our experience that and I, and many people with disability and their unpaid carers, already experience significant stress, exhaustion, and difficulty navigating the - 5

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1713

complex administrative systems and rules. Introducing opaque or automated decision- making without adequate safeguards risks creating further distress, confusion, and disempowerment.

No automated system should replace the importance of skilled human judgement, the trusted relationships with allied health professionals and trained team members, the lived experience of the person, and the deeply personal and individual understanding of decisions that profoundly affect the safety, regulation, functioning, dignity, housing, wellbeing, and ability to participate fully in community life for the person.

The NDIS was intended to support individual human beings with diverse lives and aspirations — not reduce people to standardised formulas, cost-containment measures, or administrative categories.

The Importance of Trusted Support Coordination

I am also deeply concerned about the proposed commissioning of Support Coordination and the likely loss of independent, known, trusted, knowledgeable support coordinators who have developed long-standing relationships with people with disability.

Our support coordinator has worked alongside our family for many years and has been instrumental in helping us build and sustain the life my daughter now enjoys. She deeply understands communication style, support needs, risks, strengths, goals, and values. She also understands our family’s commitment to a human rights-based approach centred on person centred principles, inclusion, autonomy, and self-determination. - This trusted relationship cannot simply be replaced without unwanted consequence. The potential loss of chosen independent highly experienced and effective support coordinator would represent a significant loss of her knowledge and expertise and genuine choice and control over who we engage to assist us. - For people with complex disability, continuity, trust, and deep knowledge are essential safeguards and the removal of a known and trusted support co ordinator risks instability, stress, and poorer outcomes for as well as increased stress and workload for me as her unpaid carer and manager of her affairs.

Capacity Building Supports Are Essential - I am also deeply concerned about proposed reductions to capacity-building supports.

For people like with severe intellectual disability, capacity-building supports are essential for maintaining communication, functional skills, emotional regulation, friendships, full participation in community life, and independence skills. - Without ongoing therapeutic and developmental supports, people with disability can experience significant regression and long-term loss of functioning. Reduced supports will not increase independence or capacity; they will reduce it. Requiring greater cost and support in the long term.

has worked hard over many years to build and maintain skills with the support of trusted therapists and support professionals who know her well and work in alignment with our family’s human rights-based values of inclusion and self-determination.- Disrupting these trusted relationships or removing capacity building supports risks causing loss of capacity in communication and wellbeing, isolation, increased emotional

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1713

dysregulation, distress, increased anxiety, deterioration in functioning and independence skills and potentially serious harm.

Lack of Meaningful Consultation with the Disability Community

I am also deeply concerned by the manner in which these proposed reforms have been developed and imposed on the disability community without respectful discussion or meaningful co-design.

People with disability and their families should not simply be consulted after decisions have already been made. They must be genuinely involved in the design, development, and evaluation of the systems and supports that directly affect their lives. Disabled people are the experts in their own lives, support needs, and lived experiences.

Policies developed without meaningful input and valuable insight and knowledge from the disability community risk causing unintended harm (as it has done already) and creating systems that are disconnected from the realities of the everyday life of people with various disabilities.

Respectful, equal, and collaborative consultation with people with disability, families, carers, and trusted professionals would lead to a better designed, stronger, fairer, and more sustainable NDIS system. It is time.

The current process has left many families feeling profoundly distressed, fearful, unheard, and excluded from decisions that will profoundly affect their futures. and I have certainly experienced this.

Concerns Regarding Expanded Ministerial Powers and Lack of Independent Oversight - I am greatly concerned by provisions within the proposed legislation that grant the Minister increased powers to redefine, restrict, or arbitrarily remove funding from categories of NDIS supports through rules and administrative decisions without adequate parliamentary scrutiny, independent oversight, or meaningful consultation with people with disability.

The concentration of such significant decision-making power in the hands of a Minister creates serious risks for people with disability and their families.

These powers could allow future governments to arbitrarily reduce or remove funding for entire categories of supports — including community participation, capacity building, therapies, support coordination, transport, or self-directed supports — without transparent processes, independent review, or proper co-design with the disability community.

This creates fear, profound uncertainty and insecurity for people with disability and their families whose actual lives, housing stability, safety, health, and wellbeing depend upon continuity and reliability of support.

For people like my daughter even relatively small reductions in support can have serious and cumulative consequences. The removal of supports should not be an abstract administrative decision. It would have serious impacts on her safety, regulation, communication, emotional wellbeing,- independence, community connection, and long-term functioning.

No Minister or government department should have the power to substantially alter the lives of people with disability without robust independent oversight, transparent evidence-based processes, safeguards and meaningful consultation with the disability community.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1713

The proposed expansion of ministerial powers also risks further undermining our trust in the NDIS and the principles on which it was built. People with disability and families need certainty, transparency and confidence that essential supports cannot be removed arbitrarily through changing political priorities and whims. The rapid changes over the last couple of years have left us in fear and distress, overwhelm and uncertainty. It is hard to make a support arrangement knowing that with an arbitrary government decision that could all be taken away. It leaves us always juggling the unknown – will we be able to maintain this carefully made support arrangement in a year’s time? It also opens the door for future governments to make changes at will.

I strongly urge the Senate to ensure that any significant changes to categories of supports, funding frameworks, or participant entitlements remain subject to proper parliamentary scrutiny, independent oversight, transparent consultation, and co-design with people with disability and their families.

The Impact on Ageing Carers

I ask the Inquiry to carefully consider the likely impact of these reforms on parents and unpaid carers, particularly aging and already exhausted parents, many of whom are also single, as am I, with no one to share the responsibility or caring role with.

I am a single mother approaching 66 years of age. After decades of caring, I already experience chronic exhaustion, carer burnout, financial stress, poverty, declining health and social isolation. I have three degrees and many other qualifications but have not been able to work for many years due to my caring role, and the increasing burden of managing and administration of the NDIS funding. I am not able to use my skills in the world and be recognised financially for that, or return taxes to our economy. There is no other family support involved in my daughter’s life. That represents a loss to me and to my community to whom I am unable to contribute.

If supports are reduced under the proposed reforms, the care needs do not disappear. They are simply transferred back onto unpaid family carers. And if I buckle care needs just get transferred to other systems; the hospital system, the mental health system. The costs for support don’t just disappear.

Funding reductions, and arbitrary ones that are unplanned for especially, place additional pressure on already exhausted families and will further compromise carers’ physical health, mental health, financial security, and ability to continue providing support safely. It is well documented that unpaid carers have the lowest wellbeing scores in Australia.

In many cases, this will increase the likelihood of family breakdown, crisis accommodation, hospitalisation, institutionalisation, and long-term system costs.

This impact needs to seriously be taken into account as a result of this proposed legislation. It is long past time that unpaid carers, mostly mothers, are recognised, not exploited, and paid a reasonable living for the very complex role we take on of complex supports as well as managing complex systems and funding, plus continual advocating for our family members. Carers need to be considered in these changes and also supported respectfully when they are exhausted and burnt out. Honestly, 6 counselling sessions through Carer Gateway does nothing to support carers who never get a break. Increased supports of our family members put onto unpaid carers is not sustainable without consequences to the carer or the loved one they support.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1713

Concerns Regarding the Inquiry Process

I appreciate that a Senate Inquiry is being conducted into these proposed changes. However, I am concerned that the timeframe provided for public submissions is far too short given the scale and significance of the proposed reforms.

We people with disability, carers, and families are being asked to respond to highly complex legislative and policy changes within an inadequate consultation period, despite the profound impact these changes may have on our daily lives, future supports, housing stability, safety, and future wellbeing. The speed, stress and unknown of these many recent legislative changes are putting many of us in increasing stress and overwhelm. The uncertainty of not knowing if we can continue to support in the way we have set up her individualised arrangement is unacceptable. The process is hurried and disrespectful when the foreseen outcome could be so damaging to so many people, including us. - Meaningful consultation requires adequate time, accessible information, and genuine engagement with the disability community. Please consult with us, a better system will result when engaging with people with lived experience of disability and their individual support requirements.

Sustainability Must Not Come at the Expense of Human Rights

I acknowledge the importance of ensuring the long-term sustainability of the NDIS and addressing fraud, exploitation, and poor provider practices. I deplore that people with disability have been vilified in the media as those ‘rorting the system’, when the majority is poor provider practices and overcharging, which has not been addressed by appropriate governance. The public perception of people with disability has been damaged, it seems to have been done to destroy the NDIS social licence to bring in these changes. What the NDIS has done is make it harder for people with disability to be valued, respected and included in our communities and make it harder for community members to step forward and be friends with people with disability. The public perception of people with disability should not be damaged in this way. It is already hard enough to fight the long held perception of people with disability as not worthy, less deserving, too expensive, a burden, should be shut away with their own kind, excluded and institutionalised. It is beyond time to change the language, see PWD as worthy individuals with strengths, gifts and talents who deserve individualised supports to live their good life with respect, inclusion and dignity.

Financial sustainability must not be pursued at the expense of the human rights, dignity, safety, and wellbeing of people with profound disability and the families who support them.

The focus of reform should be on eliminating waste, overcharging, exploitation, and ineffective service delivery — not reducing the supports that enable people with disability to live connected, meaningful lives in the community.

Recommendations

I respectfully recommend that the Senate:

Reject the Bill in its current form.
Protect participants’ rights to self-direction, self-management, and genuine choice and control.
Preserve funding for community participation and capacity-building supports.
Protect access to independent and ongoing Support Coordination.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1713

Ensure reforms align with Australia’s obligations under the UNCRPD.
Prevent policy changes that increase segregation, institutionalisation, or reliance on congregate care settings.
Recognise and address the impacts of reforms on ageing carers and families.
Commit to genuine co-design and meaningful consultation with people with disability and families before implementing major reforms.
Extend consultation and inquiry timeframes to allow meaningful community participation.
Keep skilled humans in the assessment process.
Assess the overall economic cost of these changes; including the small allied health, support organisations and support co-ordination businesses going out of business, the support workers out of work, the increased number of carers who can’t work because their PWD is not adequately supported.

Conclusion

The NDIS was established to support people with disability to live ordinary, included good lives within their communities and also to reduce the overwhelming support load carried by families.

The proposed changes risk moving and people with disability backwards toward 1970’s segregation, institutionalisation, isolation, plus family collapse in exhaustion and burn out. It reduces choice and control, reasonable and necessary and excludes people with disability from decision making regarding- their own lives.

I urge the Senate to protect the rights, dignity, safety, and inclusion of people with disability by rejecting this legislation in its current form, addressing cost concerns by addressing the over charging and other issues with providers, not removing the essential reasonable and necessary supports from people with disability and by co designing reform with people with disability and their families.

Yours sincerely,