National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2436
Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 The False Economy of Under-Valuing Informal Care I am the mother of a 23-year-old man with Level 3 autism, severe intellectual disability, epilepsy and complex behavioural support needs. I have provided and coordinated substantial support throughout his life and continue to do so under an NDIS-funded SDA arrangement.
This submission relates to the Committee’s consideration of measures intended to improve the long-term sustainability of the National Disability Insurance Scheme and ensure value for public expenditure.
Summary
• Informal carers provide substantial support that reduces reliance on funded NDIS services. • Current policy settings may unintentionally discourage informal care by creating significant financial disadvantage. • Financial stress contributes to carer burnout and may increase future demand for funded supports. • A balanced approach that combines formal and informal supports can improve outcomes while reducing costs. • The Government should examine whether increasing and de-means-testing the Carer Payment could improve outcomes while reducing overall costs.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2436
Current policy settings place considerable emphasis on increasing workforce participation among family carers. While workforce participation is an important objective, I believe this approach may overlook a fundamental economic reality.
Many family members would willingly provide a greater proportion of support to their loved ones if doing so did not result in significant financial disadvantage.
The sustainability of informal care often depends on financial resources that exist outside the disability support system. Families without those resources may have little choice but to rely more heavily on funded supports, even where they would prefer to remain actively involved in caring.
A False Economy
When a family member reduces their caring role because of financial pressures, the support does not disappear. It is often replaced by funded support delivered through the NDIS.
These supports can cost significantly more than the financial assistance that may have enabled the family member to continue providing care. In effect, the system may be discouraging one of the lowest-cost forms of support while increasing reliance on one of the most expensive.
A Family-Led Example
My son was approved for Supported Independent Living (SIL) as well as Specialist Disability Accommodation (SDA). However, our family believed there was a more effective model that would better meet his needs while making greater use of ongoing informal support.
We initiated a review of the funding arrangement and successfully advocated for a restructure from an SDA and SIL model to an SDA arrangement supported under Appendix H.
This family-led restructure reduced the cost of my son’s NDIS plan while still meeting his substantial support needs. Importantly, the reduction in plan cost was not a result of reduced support needs. It was achieved by making better use of ongoing informal support alongside formal supports.
SDA also delivered important benefits beyond accommodation. It provided a more appropriate environment for my son and reduced the impact of his complex behavioural support needs on other family members, who no longer needed to live alongside those behaviours on a daily basis.
Under the Appendix H arrangement, I continue to play a substantial role in my son’s support and reside with him as part of that model. The arrangement combines formal and informal supports, allowing ongoing family involvement while also providing periods of respite when formal supports are present. This shared-care approach was both more effective for our family and less costly to the Scheme than the original SDA and SIL model.
The Value of Continuity
Families accumulate knowledge over many years about communication, routines, behavioural triggers, health concerns and support strategies. This knowledge improves outcomes and reduces risk.
For participants with complex behavioural support needs, consistency and familiarity are often critical to stability. When experienced informal supports are lost, increased reliance on unfamiliar workers can sometimes lead to poorer outcomes and higher support costs.
Financial stress should also be recognised as a contributor to carer burnout. When caring responsibilities are combined with ongoing financial insecurity, the risk of burnout increases. When carers can no longer continue in their role, the cost to the NDIS may increase as additional formal supports are required.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2436
Recommendation
The Committee should recommend an independent economic review comparing:
• the cost of increasing and de-means-testing the Carer Payment for carers supporting people with permanent and significant disabilities; and • the cost of providing equivalent supports through funded NDIS services.
If the review demonstrates net savings to the Scheme, the Government should consider reforming carer payments accordingly.
Conclusion
Informal carers provide skilled, flexible and highly cost-effective support. A balanced approach that combines formal and informal supports should be recognised as part of the solution to long-term NDIS sustainability.
Increasing and de-means-testing the Carer Payment deserves serious consideration as a practical measure that may reduce overall NDIS costs while strengthening outcomes for participants and families.