Submission 2133

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

To the Senate Community Affairs Legislation Committee,

I am writing as Lucien’s mother and as part of the family who advocates for him every day. Lucien is our 19-year-old son and an NDIS participant. We are deeply concerned about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 and the potential impact it may have on Lucien, our family, and many other people with complex, lifelong disabilities.

This submission is about advocating for Lucien’s right to live safely, with dignity, support, inclusion and purpose. We are not simply concerned about funding in isolation. We are advocating for the supports that allow our son to participate in life, continue learning, stay connected to his community, and be supported by people who understand his complex needs.

Lucien has an intellectual disability, Autism Spectrum Disorder Level 3, ADHD, OCD, generalised anxiety, Tourette syndrome, sensory processing disorder and epilepsy. The combined impact of these disabilities affects almost every part of his daily life, including communication, emotional regulation, flexibility, personal care, decision-making, sensory tolerance, social understanding, independence and safety in the community.

Lucien’s needs cannot be understood by looking at one diagnosis in isolation. His disabilities interact with each other every day. He is not a person with one simple impairment or one simple support need. He is a young adult with complex, overlapping and lifelong disability-related needs. Any reform that assesses people too narrowly, or links funding too tightly to a single impairment or a simplified view of functional capacity, risks leaving people like Lucien unsafe, under-supported and excluded.

Lucien finished school last year. This has been a major life transition. When a young person with disability leaves school, their need for support does not reduce. In many ways, it increases. School previously provided structure, routine, supervision, social connection, predictable expectations and a supported environment five days a week. Now that he is an adult, those needs have moved into the community.

Lucien now requires more support, not less, to help him build an adult life. He attends activities daily and volunteering with the assistance of support workers. These are not luxuries. They are essential supports that prevent isolation, maintain routine, support his mental health, and allow him to continue developing skills in a safe and meaningful way.

Submission 2133

Lucien’s support workers help him understand what he needs to do throughout the day. They help him work through social interactions that may seem very basic to others, but which he does not naturally understand. They explain expectations, support communication, help him interpret what is happening around him, and guide him through situations that would otherwise be confusing, overwhelming or unsafe.

His support workers help him remain regulated and manage the world around him. In many ways, they are a bridge between Lucien and the wider community. Everything is more challenging when you do not fully understand the world around you, and when the world does not naturally accommodate your needs.

Lucien requires guidance with every part of his routine, from the moment he wakes up to the moment he goes to sleep. He needs prompting, supervision and support to move through daily tasks. He needs support to know what is happening next, what is expected of him, and how to manage changes or unexpected situations.

He cannot shower independently. He cannot prepare meals independently. He needs reminders to drink water, when to eat, what to eat to stay healthy, and when to take his medication. He needs support to understand choices and the possible consequences of decisions. This does not mean Lucien cannot make decisions. It means he needs supported decision-making so that he can understand information in a way that is meaningful and safe for him.

Lucien also needs support to remain safe if he has a seizure and to be supported through recovery afterwards. This cannot be left to chance or handled by unfamiliar people who do not know him well. His support workers need to understand his epilepsy, his presentation, his communication and how to respond appropriately.

His support needs also include personal care. Personal care is not simply a task. It is connected to dignity, hygiene, health, safety and wellbeing. Any reduction in funding could directly affect his ability to receive the personal care support he needs, maintain hygiene, attend activities, volunteer safely and continue building independence as a young adult.

Lucien is still learning many skills and needs ongoing therapy and consistent support. He is an adult with a severe developmental delay, but this does not mean he cannot learn. It means he learns at his own pace, with repetition, trust, regulation, respect and the right support around him.

Without regulation, support and trusted people who know him well, Lucien cannot learn safely or consistently. He cannot simply be placed in situations and expected to cope. He needs familiar support workers who understand his communication, anxiety, sensory needs, triggers, interests, routines, personal care needs and safety risks.

Submission 2133

Social and community participation is particularly important for Lucien. Without support, his would not be able to access the community safely or consistently. His intellectual disability, Autism Spectrum Disorder Level 3, anxiety, OCD, Tourette syndrome, ADHD, sensory processing difficulties and epilepsy all affect his ability to cope with change, manage unexpected situations, communicate his needs, regulate emotions and remain safe in busy or unfamiliar environments.

Volunteering and community activities give Lucien purpose, structure and connection. They allow him to contribute, not just receive care. They also help him practise communication, independence, flexibility and everyday living skills. Removing or reducing these supports would not make his needs disappear. It would simply leave him at home, increase his isolation, reduce his opportunities to learn, and place much greater pressure on our family.

We are deeply concerned about any changes that may reduce funding for social and community participation supports. For Lucien, these supports are directly linked to his wellbeing, development, independence and safety. They are part of how he learns to be a young adult in the community. They also help prevent regression, distress and crisis.

As parents, we provide significant unpaid care, supervision, emotional support and coordination every day. However, we also need to work. We cannot afford not to work, and it is not reasonable or sustainable to expect families to absorb the impact of reduced NDIS funding. If Lucien’s supports are cut, the responsibility does not disappear. It is shifted back onto parents and families, often at the cost of employment, financial security, mental health and long-term carer wellbeing.

The NDIS is currently what allows Lucien to have a life beyond our family home. It also allows us, as his parents, to remain in paid work while knowing that he is supported by people who understand him. If funding is reduced, we would be forced to fill the gaps ourselves. That would place our family under enormous strain and would reduce Lucien’s independence, confidence and opportunity to participate in adult life.

We are particularly concerned about any approach that focuses mainly on scheme sustainability or reducing costs without fully considering the real-life impact on participants with complex disabilities. Lucien’s disabilities are permanent. His support needs are significant and ongoing. Reducing his plan would not reduce his disability- elated needs; it would simply remove the supports that help him live safely, with dignity and connection.

We are also concerned about functional capacity assessments if they are applied too narrowly or without a deep understanding of complex disability. Lucien’s capacity changes depending on the environment, sensory demands, anxiety, routine changes,

Submission 2133

communication difficulties, epilepsy-related risks, the complexity of the task and the familiarity of the people supporting him. He may appear more capable when he is calm, regulated and supported by people he trusts. This does not mean he can function safely without that support.

Functional capacity must not be assessed as a snapshot. It must consider the person’s whole life, including personal care, emotional regulation, communication, safety, therapy needs, social participation, sensory needs, informal supports and the risk of regression if supports are reduced. It must also consider the impact on families and carers. A young adult should not be assessed as needing less support simply because parents and trusted workers are doing significant invisible work behind the scenes.

I am also concerned about any changes that may make it harder to keep stable support workers. Lucien’s current support workers know him well. They understand how to support him through anxiety, sensory overload, transitions, personal care, epilepsy- safety needs, communication challenges and community access. This trust and familiarity cannot be replaced easily.

For people with Autism Spectrum Disorder Level 3, intellectual disability, anxiety and complex support needs, change can be extremely distressing. Losing familiar workers or having services disrupted because of new administrative or provider requirements could have a serious impact. Any provider registration or compliance changes must be risk-proportionate and must not unintentionally remove safe, experienced and trusted workers from a participant’s life.

We support safeguards, quality services and action against fraud. However, these aims should not come at the expense of participants who are already vulnerable and who rely on stable, individualised supports. The system should target misuse and poor practice without punishing participants and families who are using funding appropriately to meet genuine disability-related needs.

I am also concerned about automated decision-making or decisions made without proper human understanding of the individual. Lucien’s needs cannot be understood through data alone. His disability is complex, and the interaction between his diagnoses affects his functioning every day. Decisions about his supports must involve human review, clear reasons, proper evidence and meaningful rights to appeal.

We are advocating for Lucien because he cannot fully advocate for himself in the way others may be able to. He has views, preferences and rights, but he needs support to understand information, communicate his needs, make decisions and remain safe in the world around him.

Submission 2133

As his family, we see the reality of his disability every day. We also see his potential. With the right support, Lucien can continue to learn, participate, volunteer, build skills and have a meaningful adult life. Without that support, he is at risk of isolation, distress, regression and reduced safety.

Our family asks that the Bill be amended or implemented in a way that protects participants with complex, lifelong disabilities. In particular, I ask that:

• Social and community participation supports are not reduced through blanket or broad funding cuts.

• Young adults leaving school are recognised as needing strong transitional support into adult life.

• Volunteering, community access and meaningful activities are recognised as essential disability supports, not optional extras.

• Personal care needs are fully recognised when assessing funding and functional capacity.

• Supported decision-making is recognised as an essential support for participants who can make choices but need help to understand information, consequences and risks.

• Epilepsy-related safety, seizure response, recovery support and health-related supervision are considered when assessing daily living and community access needs.

• Families are not expected to replace funded supports with unpaid care.

• Functional capacity assessments are individualised, transparent and conducted by appropriately qualified professionals who understand complex disability.

• The impact on families, carers and the participant’s daily life is considered before any funding reduction.

• Stable support worker relationships are protected, especially for participants with Autism Spectrum Disorder Level 3, intellectual disability, anxiety, epilepsy and complex support needs.

• Provider registration and compliance changes are risk-proportionate and do not disrupt safe and trusted support arrangements.

-Automated decision-making is not used to make significant decisions about access, planning, funding or support reductions without human review and clear appeal rights.

Submission 2133

Foundational or mainstream supports are not treated as replacements for individualised NDIS supports unless they actually exist, are accessible, safe,

appropriately skilled, and able to meet the participant’s needs.

Lucien is now an adult, but he is not independent in the way other 19-year-olds may be. His disabilities significantly affect his daily life, his personal care, his safety, his ability to manage change, his understanding of the world around him and his capacity to participate in the community. The NDIS gives him the support he needs to live with dignity and purpose.

We are not asking for luxury. We are asking for the supports that allow Lucien to be safe, clean, regulated, engaged, included and supported as a young adult. We are asking for a system that recognises that complex disability does not disappear when a young person leaves school or turns 18.

The NDIS should be sustainable, but sustainability must not be achieved by cutting essential supports from people with lifelong and complex disabilities. If supports are reduced, The cost will not disappear. It will be shifted onto families, carers, hospitals, crisis services and the wider community.

Please ensure that this Bill does not take away the supports that allow people like Lucien to live safely, participate meaningfully, continue learning, and have a future beyond the family home. This is not only about scheme sustainability. It is about dignity, inclusion, safety, and the rights of people with complex disabilities to be properly supported.

Yours sincerely,

Rebecca Monetti Lucien’s mother and advocate Parent of Lucien, a 19-year-old NDIS participant