Autistic son's communication, regulation, and eating needs require specialist disability support (Family or carer experience)

Submission 927

Submission to the Inquiry: National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

This submission is made by a parent and carer with lived experience of the NDIS, autism, complex childhood support needs and the practical impact of unpaid caring. Identifying details have been withheld to protect the privacy of my child and family.

Executive Summary

I am the parent and carer of my 6 year-old son, who has been an NDIS participant since 2023. He has Autism Spectrum Disorder Level 2 with a PDA profile, anxiety, ARFID, expressive language disorder / selective mutism. His disability-related needs significantly affect communication, emotional regulation, eating, community participation and education.

I support a sustainable NDIS. However, sustainability must not be achieved by moving children out of the Scheme before appropriate supports exist elsewhere, narrowing reasonable and necessary supports, or placing greater expectations on families already providing extensive unpaid care.

NDIS capacity building and core funding has helped our family access therapy and practical support. This has assisted my son to communicate, regulate emotions, attend schooling, support eating, reduce crisis and participate in the community. It has also helped reduce family burnout by providing support worker assistance.

My concern is that the Bill could leave children like my son, and families like mine, with less support at the point when early, practical and individualised help is most needed. This submission asks the Committee to recommend strong safeguards so that children are not worse off, families are not expected to absorb further unpaid care, and decisions are based on real functional need.

1. Introduction I make this submission as the parent and carer of my son. He is six years old, has complex disability related needs, and has been an NDIS participant since 2023. His education has been significantly impacted by his disability-related needs.

I have seen firsthand the difference that appropriate NDIS support can make. I have also experienced the stress caused when families must constantly advocate across systems that do not always understand or respond to complex childhood disability.

For my son, disability affects daily life in practical ways. It affects communication, regulation, eating, anxiety, participation in the community and education. These issues are interconnected and affect the wellbeing of the whole family.

This submission focuses on five key issues:

• the proposed Thriving Kids arrangements and the risk of children falling through gaps;

• increased expectations on families and unpaid carers;

• changes to reasonable and necessary supports;

• the importance of core and capacity building supports, including therapy, support workers and social and community participation;

• assessment and reassessment processes that may not reflect the reality of autistic children and their families.

2. Thriving Kids and the risk of children falling through gaps I am deeply concerned about any proposal that could result in children being moved away from the NDIS before an alternative system is fully designed, tested, funded, staffed and legally accountable.

Children with autism, anxiety, communication difficulties, emotional regulation needs and eating challenges do not fit neatly into one service system. Their needs are not only health needs, education needs or community needs. They affect the whole child and the whole family.

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In our family, NDIS funding has supported therapy, communication and regulation strategies, eating related support, crisis prevention and supported community participation. It has also helped reduce family burnout through support worker assistance. These supports are not extras. They are part of what keeps family life safer, more stable and more functional.

Mainstream services are already stretched. Schools, health services and community programs often have waiting lists, limited disability expertise and limited capacity to provide individualised support. If children are redirected from the NDIS into services that are not ready, families will be left to absorb the gap.

For my family, that would mean increased stress, increased crisis, reduced community access, greater educational impact, more pressure on parents and greater risk of carer burnout.

3. Families and unpaid carers are already doing the heavy lifting I am concerned about any reforms that assume families can simply do more. Families like mine already provide extensive unpaid support every day. We coordinate appointments, manage routines, support regulation, advocate across systems, fill gaps in education and health, and try to prevent crisis before it becomes visible to others. I have had to remove myself from the workforce to homeschool my child.

The NDIS has not replaced parental responsibility in my family. It has helped us carry responsibilities that would otherwise become unmanageable. A support worker gives my son supported access to the community and gives our family some breathing space. Therapy helps us better understand and support his communication, regulation, eating and day-to-day functioning.

If support was reduced, there would likely be increased meltdowns or shutdowns, further educational disengagement, greater isolation, reduced community participation, increased mental health impacts, greater pressure on parents, reduced ability to work and increased risk of family burnout.

It is not fair or realistic to assume that because parents love their children, they can absorb more unpaid care. Love does not replace specialist disability support. Parenting a disabled child with complex needs is not the same as ordinary parental responsibility.

4. Reasonable and necessary supports must reflect real life I am concerned that changes to reasonable and necessary supports could narrow access to the supports that make daily life possible. For my son, NDIS supports have helped with communication, emotional regulation, eating, reducing crisis and participation in the community. These supports affect whether a child can leave the house, attend appointments, engage with others, cope with transitions, participate in education and maintain emotional stability.

Capacity building and core supports work together. Therapy can provide strategies, but families also need practical support to implement those strategies in real life. A child may build skills in therapy, but they need supported opportunities to practise those skills at home, in the community and in ordinary daily routines.

Social and community participation should not be treated as optional or recreational for children like my son. My child cannot attend school, so community participation is crucial for isolated children. For autistic children with anxiety and communication needs, supported community participation can be part of building capacity, reducing isolation, maintaining regulation, developing confidence and protecting family wellbeing.

5. Assessment and reassessment must reflect autistic children’s real lives I am concerned about eligibility processes, functional capacity assessments, reassessments and plan end dates. Autistic children can present very differently across settings. Some mask. Some shut down. Some cannot communicate their needs in unfamiliar environments. Some appear calm in one setting but experience major distress later at home.

A short assessment or point-in-time observation may not capture the full picture. Parents, carers, treating professionals and educators often hold essential evidence about a child’s actual functional needs and the cumulative impact on the family. Page 2

Submission 927

Families also experience significant stress from the system itself. In our experience, this includes fear of supports being reduced, pressure on parents to constantly prove need, gaps between systems, waiting lists and the ongoing advocacy burden. The process can feel like families are repeatedly required to justify needs that are already well documented and ongoing.

Assessments should be neurodiversity affirming, child centred and trauma informed. They should include multiple sources of evidence and should not rely on one-off observations or automated processes. Reassessments should be proportionate and should not create unnecessary instability for families whose disability-related needs are ongoing.

6. What the Committee needs to understand Families are already the safety net. The NDIS should not assume that parents can absorb more unpaid care simply because they are parents. People who do not live this experience may not realise how much work happens behind the scenes: preparing a child for transitions, supporting communication, managing distress, coordinating appointments, advocating with services, adapting routines, monitoring eating, preventing escalation and trying to keep family life stable.

Support is not about convenience. For children like my son, it is about dignity, safety, development, education, health, family functioning, community participation and hope.

Mainstream systems are not yet ready to replace the NDIS for children with complex developmental disability. If the Bill moves children away from the NDIS without strong safeguards, the consequences will be serious. Families will burn out. Children will disengage. Risks will increase. Crisis will become more likely.

7. Recommendations I respectfully ask the Committee to recommend that:

• children are not moved from the NDIS into Thriving Kids or any alternative system unless that system is fully operational, properly funded, disability specific, accessible and legally accountable;

• a clear no worse off safeguard is included for children and families during any transition;

• eligibility and support decisions are based on individual functional need, not diagnosis alone, age alone or assumptions about what families should provide;

• unpaid family care is not used as a reason to reduce funded support where support is necessary for safety, development, regulation, dignity, education, participation or family functioning;

• capacity building and core supports remain available, including therapy, support workers and social and community participation where these supports are needed in real life;

• assessments are neurodiversity affirming, trauma informed and child centred, and include evidence from parents, carers, treating professionals and educators;

• automated decision making is not used to determine eligibility, funding or reassessment decisions without strong human review, transparency and appeal rights;

• reassessments are proportionate, respectful and not unnecessarily repeated where disability and support needs are ongoing;

• reform is guided by lived experience, including the voices of parents and carers of children with complex developmental disability.

8. Conclusion I support the goal of a sustainable NDIS. But sustainability must not come at the expense of children with disability and their families. I ask the Committee to ensure that any changes protect children like my son, recognise real functional need and do not shift further responsibility onto families who are already doing everything they can.

The NDIS should remain a system that supports early and meaningful intervention, recognises the real world impact of disability and helps children and families live with dignity, safety and hope.

Thank you for considering this submission. Page 3