National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2609
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations)
Bill 2026
I am the parent of a five-year-old child with multiple permanent and complex disabilities, including deafblindness with low vision, major medical needs, airway issues, and developmental delays. Our child is unable to talk, eat, drink and walk unassisted and requires 1:1 care at all times for safety.
The NDIS has been life-changing for our family, we are incredibly grateful for the support we’ve received. The supports funded have absolutely improved our child’s quality of life and helping him kick goals.
Without the NDIS, our family would not have been able to access many of the therapies, equipment, and assistance that have made such a difference. The support has also helped our family continue functioning under extremely difficult circumstances.
I am very concerned about aspects of the proposed reforms.
I’m worried about potential tightening around what is considered “parental responsibility.” While parents naturally care for their children, there must be recognition that some children have needs far beyond what would reasonably be expected of a family without disability.
Our child continues to have extremely high support needs now, however during the early years we were also managing major airway issues, surgeries, medical instability, chronic sleep deprivation and round the clock nursing-level care with very limited support. Despite how complex the situation was, we were provided only minimal support worker hours. We are appropriately funded now.
Families with medically complex young children should not be disadvantaged simply because their child is young. Early support is critical and can prevent family burnout, crisis, and worsening outcomes for both the child and family.
I’m also extremely concerned about any reforms that could reduce choice and control over who provides supports.
Independent support workers have been invaluable. Inviting someone into your home and into your child’s life is a very personal thing. It takes a long time to train someone, build trust, and find people who are capable of helping care for your child’s complex needs. Families must retain the ability to choose workers.
In our experience, independent support workers have provided more flexibility, consistency, and personal connection than larger provider companies. Restricting access to independent workers would significantly impact our family and many others. Choice and control must remain a central principle of the NDIS.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2609
Another major issue is the administrative burden involved in accessing and maintaining supports. Families already under immense pressure are often required to repeatedly gather extensive lengthy reports, medical evidence, therapist documentation, and assessments simply to prove ongoing permanent disability and justify supports that are clearly still required.
This process is financially costly, emotionally exhausting, and time-consuming. Families should not have to continually “re-prove” lifelong disability every year in order to access necessary supports.
I would also like to raise concerns about some of the responses families can receive when requesting help to learn sign language. We were questioned about the need for ongoing sign language support because our child was not signing a lot back himself and we already had one round of training, however children with deafblindness and complex communication needs can develop expressive communication slowly while still learning and understanding language. My son understands when we sign which is huge for us. Sign language is a complete language that takes time for both the child and family to learn, and ongoing support is incredibly important.
Reducing delays relating to AT equipment is also important for early intervention.
I support efforts to improve the long-term sustainability of the NDIS and reduce misuse of funds. However, reforms must not unintentionally make it harder for genuinely high-needs children and families to access appropriate support.
I ask the Committee to ensure that:
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medically complex children are not disadvantaged by broad interpretations of “parental responsibility”;
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participant choice and control, including the use of independent support workers, is protected;
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administrative and reassessment burdens on families are reduced;
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permanent disabilities do not require repeated excessive proof;
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greater recognition is given to the impact on siblings and families;
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communication supports such as sign language learning remain appropriately funded;
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and timely access to essential supports and equipment is maintained. Thank you for considering my submission and the lived experiences of families like ours.
Yours sincerely