Submission 1397

Date: 28th May 2026

Submission to the Senate Inquiry – NDIS Amendment (Securing the NDIS for Future Generations) Bill

to the Committee,

My name is , and I am a sole parent and primary carer of four children, including two children with disabilities who are NDS participants. I am also a bachelor-trained early childhood teacher currently studying a Master’s degree in childhood disability and special education. Alongside my lived experience as a parent and carer, I also have professional knowledge of child development, disability, inclusion and early intervention.

My youngest daughter is three years old and lives with Spinocerebellar Ataxia Type 5 (SCA5) and cerebral palsy. She cannot walk or talk, uses a wheelchair for mobility and has very high support needs and requires significant care and supervision throughout the day and night. My older daughter, is eight years old and has Autism Spectrum Disorder and significant speech and communication difficulties.

I am writing this submission because I am deeply concerned about the proposed changes within the NDIS Amendment (Securing the NDIS for Future Generations) Bill, particularly changes relating to:

• “reasonable and necessary” supports

• increased reliance on unpaid carers and family supports

• plan reassessments and plan end dates

• restrictions around changes of circumstances

• stricter permanence and treatment requirements

• automated decision-making

• tighter controls around support categories such as community participation and capacity-building supports.

I understand the importance of ensuring the long-term sustainability of the NDS. However, sustainability must not be achieved by shifting greater care burdens onto families already experiencing exhaustion, financial hardship and isolation.

I believe many of the proposed changes fail to reflect the reality of caring for children with complex disabilities, especially for low-income families like mine.

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Concerns About Changes to “Reasonable and Necessary” Supports and Increased Reliance on Unpaid Carers

I am extremely concerned about proposed changes that may reduce support categories, tighten access to supports, or increase expectations on unpaid carers.

Families like mine are already doing everything we can. There is a limit to what one person can physically and emotionally sustain.

The care required for my three-year-old goes far beyond normal parenting. She requires constant supervision and support for her safety, daily functioning and development. As her sole parent and primary carer, I already carry enormous physical, emotional and financial pressure while also supporting my other children’s needs. The NDIS has not “replaced parenting.” It has helped make survival possible.

The support worker hours funded through my three-yearold’s NDIS plan have allowed her to access the community, build developmental skills and participate in life outside the home. Those supports also provide essential assistance in my caring role in the home and reduce the risk of severe burnout.

Without those supports, I would be doing almost all care entirely alone.

Reducing support worker hours or narrowing what is considered “reasonable and necessary” will not remove disability or reduce care needs. It will simply shift more pressure onto exhausted families, particularly mothers and sole parents.

If supports are reduced:

• my physical and emotional exhaustion will increase significantly
• my children’s safety may be compromised
• my financial situation will worsen because my ability to work is already heavily limited
• myself and my children will become more isolated
• my eightyear old will fall further behind in speech and communication development -my three year old will fall further behind in all areas of development
• our family’s mental health and wellbeing will deteriorate

These are not hypothetical concerns. This is the reality families already face.

Concerns About Plan Reassessments, Plan End Dates and Restrictions on Changes of Circumstances

I am also concerned about proposed changes relating to reassessments, plan end dates, and restrictions around changes of circumstances. Children’s needs change

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rapidly, especially in early childhood. Disability does not remain static. Development, therapies, equipment needs, health complications and family circumstances can all change quickly.

Families should not be trapped in rigid systems that fail to respond to genuine changes in need. The uncertainty of reassessments already creates enormous stress for families. Living with the constant fear that essential supports may be reduced or removed has a serious impact on mental health and stability.

I am also concerned that stricter reassessment systems may make it harder for families to respond when support needs increase unexpectedly. Concerns About Permanency Criteria and Requirements to Exhaust Treatment Options I am deeply concerned about any requirement that families must prove they have tried “all appropriate treatments” before receiving support.

Families of children with disabilities already spend huge amounts of time attending therapies, specialist appointments and assessments. Adding further barriers risks delaying vital support during critical developmental years. Not every disability can be “fixed” or significantly improved through treatment. Children should not have to prove they are disabled enough or exhausted enough before receiving support. Similarly, steeper permanence criteria fail to reflect the complexity of childhood disability. Early intervention matters precisely because children are still developing.

Concerns About Automated Decision-Making

I strongly oppose increased automated decision-making within the NDIS. Families derve to be assessed by real people who understand the complexity of disability and individual circumstances. Disability cannot be reduced to a checklist or algorithm. Automated decisions risk causing serious harm, particularly for vulnerable families already struggling to navigate a complex system.

Existing Difficulties Accessing Supports

Even under the current system, accessing supports has already been difficult. I initially had appropriate support worker hours rejected despite my daughter’s high support needs. Her wheelchair was also initially rejected before eventually being approved through the appeals process. These experiences were exhausting and stressful at a time when my energy needed to be focused on caring for my children. This demonstrates that families are already fighting hard for necessary supports. Further restrictions, reassessments and compliance measures will only make this harder.

What I Want the Committee to Understand

I do not believe many policymakers truly understand what life is like for low-income families caring for children with complex disabilities. The NDIS is not funding luxuries. It funds safety, care, development, communication, inclusion and basic quality of life.

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These supports are the difference between:

• participation and isolation
• safety and risk
• sustainability and burnout
• development and regression

When governments reduce supports, families absorb the consequences physically, effectively and financially. Children with disabilities should not pay the price for attempts to reduce costs.

Recommendations: I urge the Committee to:

1. Protect funding for support worker hours, community participation and early intervention supports.
2. Ensure unpaid carers are not expected to replace funded disability supports.
3. Maintain flexible access to supports when circumstances change.
4. Reject overreliance on automated decision-making.
5. Ensure “reasonable and necessary” definitions do not unfairly restrict essential supports.
6. Avoid creating additional barriers through excessive permanency or treatment requirements.
7. Protect access to therapies and communication supports for children with developmental disabilities.
8. Ensure reassessment processes do not destabilise vulnerable families.
9. Ensure low-income sole parent carers are meaningfully considered in all future NDIS reforms.

Conclusion

I support the long-term sustainability of the NDIS, but sustainability cannot come at the expense of the safety, wellbeing and dignity of children with disabilities and their families. As a sole parent, I already carry enormous caring responsibilities every day. The NDIS has provided support that allows my children to participate in life and allows

Submission 1397

me to continue caring for them safely. I ask the Committee to carefully consider the real-world consequences these proposed changes may have on families like mine.

Thank you for considering my submission.