SUBMISSION TO THE SENATE COMMUNITY AFFAIRS
LEGISLATION COMMITTEE
National Disability Insurance Scheme Amendment
(Securing the NDIS for Future Generations) Bill 2026
Submitted by:
Capacity: Aunt and family advocate
To the Committee,
I am writing as the aunt of a child with Level 3 autism who requires very substantial support with his everyday life, development, safety and participation in the community.
I am deeply concerned that the proposed changes contained in the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 could make it even more difficult for children such as my nephew to access the level of support they genuinely require.
Our family’s experience My nephew’s disability has a significant impact on his daily functioning and he requires a much higher level of care and supervision than a child of the same age without disability. His mother, my sister, provides most of this care herself.
Despite the severity of his disability, his current NDIS funding does not provide enough support to meet his needs. There is insufficient funding for the services, appointments, therapies, support workers and respite that would help him develop his skills, participate safely in the community and receive consistent care.
My sister cannot personally pay for all the services that are not covered by his plan. She is also unable to participate properly in paid employment because she must care for him full-time. Without adequate support-worker and respite funding, she has very limited opportunities to work, attend appointments, complete everyday responsibilities or rest from her caring role.
This situation creates an ongoing cycle. Because there is not enough funded care, my sister cannot work. Because she cannot work, she cannot afford to privately pay for the supports missing from her son’s NDIS plan. She must then remain reliant on government carer payments, even though she would like the opportunity to work and become more financially independent.
Concerns about the proposed Bill I am particularly concerned about changes that could make NDIS eligibility and support decisions more restrictive or place greater emphasis on reducing costs rather than assessing each person’s actual functional needs.
A diagnostic label does not, by itself, describe every support a person needs. However, where there is clear evidence that a child has severe and permanent functional impairments, the legislation must not create additional barriers to receiving reasonable and necessary support.
My nephew already receives less assistance than he requires. Further restrictions, reductions or uncertainty would place even greater pressure on him and his family. It could result in him receiving
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fewer therapy services, less community access, less assistance to develop communication and daily living skills, and less care from appropriately trained support workers.
I am also concerned about any expectation that families will be able to obtain services through mainstream or foundational support systems when those services may not exist, may have lengthy waiting lists, may not be affordable or may not be suitable for children with complex and high support needs.
No child should lose NDIS eligibility or have essential funding reduced on the assumption that another service will assist them unless an appropriate, accessible and adequately funded alternative is actually available.
Respite and family sustainability Respite is not a luxury. It is an essential support that helps families continue caring for children with significant disabilities safely and sustainably.
My sister needs reliable respite and support-worker assistance so she can maintain her own wellbeing, spend time meeting other family responsibilities and have a genuine opportunity to return to employment. Without this assistance, there is a serious risk of exhaustion and carer burnout.
Providing sufficient care and respite funding could also reduce my sister’s reliance on government income support by allowing her to re-enter the workforce. Adequate disability support should therefore be recognised as an investment in both the participant and the economic participation of their family.
Restricting NDIS funding does not remove the need for care. It simply transfers the financial, physical and emotional burden to families who may already be providing care every hour of every day.
What I ask the Committee to recommend
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The Bill not proceed in its current form where its provisions may reduce access to the NDIS or essential supports for people with permanent and substantial functional impairments.
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NDIS eligibility and funding decisions continue to be individualised and based on the person’s actual functional needs, circumstances and support requirements.
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Children with severe disabilities are not moved out of the NDIS or have their funding reduced unless appropriate and equivalent alternative services are fully established, accessible and adequately funded.
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Respite, support-worker care, therapy, capacity-building assistance and community-access supports remain available where they are reasonable and necessary.
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The effect of a participant’s disability on their parent or primary carer is properly considered when determining the appropriate level and type of support.
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Families are given transparent decisions, procedural fairness and meaningful rights to challenge decisions affecting eligibility or funding.
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Any future NDIS reforms are genuinely co-designed with people with disability, families, carers and disability advocates.
Conclusion
My nephew deserves the opportunity to develop, participate in his community and receive care that reflects the severity of his disability. My sister deserves the opportunity to be his mother, rather than being required to act as his full-time and largely unsupported carer every day.
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The answer to concerns about the future cost of the NDIS should not be to deny or reduce essential supports for children and families who are already struggling. Providing adequate support now can improve a child’s development, support family stability, enable carers to participate in employment and reduce the likelihood of more costly crises in the future.
I respectfully ask the Committee to consider the real-life consequences that this Bill may have for children with severe disabilities and the families who care for them.
Thank you for considering my submission.
Yours sincerely,
Aunt and family advocate
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