1st June 2026
Dear Minister,
My name is . I am the parent and primary carer of my 16-year-old son, who is an NDIS participant.
My son has a chromosome deletion causing major developmental delay and lifelong disability. Although he is 16 years old, his functional capacity across most areas is approximately that of a four-year-old child. He cannot read or write, has no concept of money or time, and cannot safely navigate the community without significant support.
He attends a specialised school and requires ongoing therapy, disability-related consumables, and support worker assistance to participate safely in the community, maintain his physical health, build independence, and prepare for adult life.
I am making this submission because I am deeply concerned about the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I support genuine measures to protect the integrity and sustainability of the NDIS. I do not support reforms that reduce individualised decision-making, create uncertainty for participants and families, restrict essential supports, or give broad powers to the Minister to make decisions that profoundly affect the lives of people with disability without adequate safeguards, transparency, or parliamentary oversight.
The NDIS is essential to my son’s safety, development and future
For my son, NDIS supports are not optional extras. They are essential.
He cannot safely access the community independently. He cannot read signs, understand written information, manage money, assess many everyday risks, or communicate and problem-solve in the way other 16-year-olds can.
Support workers enable him to participate in ordinary community life safely and securely. They take him to the gym and swimming pool to complete an exercise program designed by his physiotherapist. They support him to build social relationships outside our family. They encourage independence, help him practise skills in real-life settings, and work with him to replicate and achieve goals outside family relationships.
This is incredibly important.
Teenagers need relationships, confidence, routine, physical activity, and opportunities to develop independence. My son needs these things too. The fact that he has significant
disability does not make these goals less important; it makes the supports that help him achieve them more important.
Without NDIS-funded support workers, his world would become smaller, less safe, and more dependent on family alone.
Therapy must include maintaining function, not only achieving improvement
My son requires therapy to maintain his physical ability to function and move.
His physiotherapist has designed an exercise plan that is carried out through activities such as gym and swimming, with support worker assistance. This helps maintain his strength, mobility, coordination, physical health and overall wellbeing.
For participants with lifelong disability, therapy is not always about “fixing” a condition or producing short-term improvement. Sometimes the most important purpose of therapy is to maintain function, prevent decline, reduce future health complications, and preserve quality of life.
Any reform that narrows access to therapy or treats maintenance supports as less important would be harmful and short-sighted. If my son loses function, the cost to him, our family, the health system, and the NDIS will be far greater in the long term.
Community access supports are not recreational luxuries
I am concerned that some discussions about NDIS reform risk treating community access as non-essential.
For my son, community access is directly connected to safety, health, learning, independence, and social inclusion.
When support workers take him to the gym or swimming pool, they are not simply providing recreation. They are helping him implement a physiotherapy program, maintain physical function, practise community participation, develop confidence, and build relationships outside his immediate family.
These supports also help him learn to take instructions from people other than family members, follow routines, engage with the broader community, and work towards goals in real-world environments.
That is exactly the kind of developmental support a young person with significant disability needs as he moves towards adulthood.
Employment pathways must be protected
In the coming years, my son will finish school, and we hope he will be able to undertake meaningful employment in some capacity.
Employment will not be straightforward for him. He will require significant individual support. However, I strongly believe employment is crucial to his development as a young adult.
Meaningful employment can provide purpose, structure, belonging, social connection, self worth and accomplishment. These outcomes are just as important for people with significant disability as they are for anyone else.
The NDIS should support young people with disability to move from school into adult life with ambition and dignity. It should not limit their future because they require more support than others.
Any reforms to the NDIS must protect school-to-work transition supports, employment preparation, individualised assistance, and community participation supports that help young people like my son build the skills and confidence needed for adult life.
Broad ministerial powers are unacceptable without strong safeguards
One of my strongest concerns about the Bill is the extent to which significant matters may be determined by rules, delegated instruments, or ministerial decision-making.
The NDIS is not a minor administrative program. It determines whether people with disability can access therapy, support workers, equipment, community participation, employment supports, and the assistance they need to live safely and with dignity.
Decisions of this magnitude should not be left to broad ministerial discretion.
I do not agree with extraordinary powers being given to Minister Mark Butler, or to any Minister, to make decisions that could affect the supports available to participants without proper parliamentary scrutiny, transparent evidence, meaningful consultation, and strong review rights.
Families like mine need certainty. We plan years ahead for schooling, therapy, physical health, employment, community participation and future care. If the rules can be changed too easily by the Minister of the day, participants and families are left in a state of constant uncertainty.
The Committee should not support legislation that gives government broad powers to reshape essential supports without adequate checks and balances.
Reform must be co-designed with people with disability and families
The NDIS was created to support people with permanent and significant disability. It must not be redesigned in a way that removes the voices of the very people it exists to serve.
Participants, families, carers, advocates and disability organisations understand the practical impact of policy decisions. Reforms developed without genuine co-design risk causing serious unintended harm.
My son cannot make a submission to this inquiry himself. He cannot read the Bill, write to the Committee, or explain the consequences of losing support. That is why families and carers must be listened to.
People with disability must not be treated as budget items. They are citizens with rights, goals, relationships, potential and futures.
Recommendations
I respectfully ask the Committee to make the following recommendations.
Recommendation 1: The Bill should not be passed in its current form.
The Bill should not proceed unless substantial amendments are made to protect participant rights, preserve individualised supports, and limit broad ministerial powers.
Recommendation 2: Individualised funding and participant choice must be protected.
The NDIS must continue to recognise the individual needs, goals and circumstances of each participant, rather than relying on rigid or standardised approaches.
Recommendation 3: Therapy supports must remain available to maintain function and prevent deterioration.
Therapy should be funded where it is necessary to maintain mobility, health, communication, functioning, independence and quality of life, not only where short-term improvement can be demonstrated.
Recommendation 4: Support worker assistance for community access must be protected.
Support workers play a critical role in safety, social inclusion, skill development, independence, health maintenance and community participation. These supports must not be treated as optional or non-essential.
Recommendation 5: Employment and transition-to-adulthood supports must be preserved.
Young people with significant disability must be supported to move from school into meaningful adult lives, including employment where possible. This requires individualised, long-term support.
Recommendation 6: Ministerial powers must be limited.
Any major changes to participant supports, funding arrangements, eligibility, assessment processes or review rights should be subject to parliamentary scrutiny, transparent evidence, and meaningful consultation.
Recommendation 7: Reform must involve genuine co-design.
People with disability, families, carers, advocates and representative organisations must be directly involved in the design and implementation of any NDIS reforms.
Conclusion
My son is a 16-year-old young person with significant lifelong disability. He has the functional capacity of approximately a four-year-old child. He cannot read or write, has no concept of money, and cannot safely access the community without support.
Despite these challenges, he is learning, growing, developing relationships, maintaining his physical health, and preparing for adulthood because of the supports he receives through the NDIS.
Those supports give him safety, dignity, connection and opportunity.
The NDIS should not be weakened for participants like my son. It should be strengthened, protected and improved in ways that uphold the rights and futures of people with disability.
I respectfully ask the Committee to recommend that the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 not be passed in its current form.
If reform is to proceed, it must only do so with substantial amendments that protect individualised supports, limit ministerial discretion, preserve therapy and community access supports, safeguard employment pathways, and require genuine co-design with people with disability and their families.
The future of the NDIS should be shaped with people with disability, not imposed upon them.
Thank you for considering my submission.
Kind regards,