National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1311
Submission to the Senate Inquiry into the NDIS Amendment Bill / NDIS (Getting the NDIS Back on Track No. 1) Bill 2024
Submitted by:
I am writing as the parent and full-time carer of a 10-year-old child with autism and Down syndrome who has been an NDIS participant since the age of three.
My child has significant support needs, including severe anxiety, low muscle tone, motor and sensory challenges, cognitive and interoceptive difficulties, and an eating disorder linked to disability-related sensory needs. They require supervision at all times. I also care for three other children, including another child with significant disability-related challenges.
Like many families, I understand the importance of ensuring the NDIS is sustainable and protected from fraud and misuse. However, I am deeply concerned that aspects of the proposed reforms risk reducing access to essential supports without adequate alternative systems being in place.
For families like mine, NDIS supports are not optional extras. They are what make daily life possible.
NDIS funding has significantly helped my child’s gross and fine motor development, which remains well below age expectations. It has also enabled me, as a parent and carer, to learn strategies and approaches that help my child feel safe enough to participate, regulate, and learn.
In 2023, when my child transitioned from early intervention into the main NDIS scheme and also began their first year of school, our Capacity Building supports were reduced by approximately 66%. We were left with funding that would only cover around 12 weeks of therapy for the entire year.
The justification given was that school itself would provide sufficient therapeutic benefit, and that we should instead use therapy assistants. In practice, this did not reflect the reality of our situation.
My child was not receiving the level of accommodation or support needed at school, and their mental health deteriorated significantly during this period. Over time, this led to severe anxiety, increasing sensory intolerances, and physical symptoms including stomach pain, reflux, food refusal, and sleep difficulties. It also had a profound impact on my child’s mental health and sense of self-worth.
At the same time, it was extremely difficult to find therapy assistants with appropriate experience working with children with complex disability needs. The assumption that lower-cost alternatives are readily available and interchangeable with qualified therapeutic support is not accurate for many families.
We were ultimately forced to pursue an AAT review in order to advocate for appropriate supports. This process created significant stress and anxiety at a time when our family was already under immense pressure.
We ultimately made the difficult decision to home educate in order to protect my child’s mental and physical health. While this has reduced some distress, it has also placed enormous pressure on our family. Because of my child’s anxiety, we rarely leave the house and remain extremely isolated.
Home education for a child with complex disability is not simply supervising schoolwork. It involves being constantly “switched on” all day while trying to incorporate educational activities, therapy recommendations, emotional regulation support, and daily living support into everyday life. I am unable to work because my child requires ongoing supervision and support throughout the day.
The ongoing advocacy required to secure appropriate supports - including years of trying to have my child’s needs recognised and accommodated - has also contributed significantly to my own burnout. I rarely see
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1311
friends, have little connection to the community, and am unable to contribute financially to my family despite wanting to.
Support workers funded through the NDIS have become some of the only consistent relationships outside our immediate family. They help my child practise daily living skills, fine and gross motor skills, and safely participate in the community. They also provide practical support when I need to take my other children to appointments or meet the needs of the rest of the family.
Without these supports, the likely outcome would be increased isolation, worsening mental health, carer burnout, increased risk of family breakdown, and further disconnection from the community.
I am also deeply concerned about proposed changes relating to functional assessments and tighter eligibility criteria.
A standardised assessment tool cannot adequately capture the complexity of disability, particularly for autistic children and people with less visible disabilities. My child’s functioning varies greatly depending on environment, anxiety levels, sensory load, and whether they feel safe. A short assessment with someone unfamiliar with their disability cannot fully reflect the reality of our daily life.
I am especially concerned about reports that assessors may not be required to have significant expertise in disability, allied health, child development, or autism. Families are being asked to trust life-changing decisions to people who may only have minimal training and no understanding of the long-term consequences of underestimating support needs.
I am also concerned about increasing expectations on unpaid carers and assumptions that families can absorb unmet support needs. Families like mine are already providing enormous amounts of unpaid care every day. Reducing supports does not remove the need - it simply transfers the burden onto families who are already struggling to cope.
I respectfully ask the Committee to consider the real-world consequences these reforms may have for children with disability and their families.
I ask that the Committee recommend:
• That no participant lose access to essential supports until fully funded and accessible alternative systems are in place
• That functional assessments not be used as the sole basis for determining eligibility or support needs
• That assessors have appropriate qualifications, disability expertise, and understanding of child development and autism
• That community participation and support worker funding remain recognised as essential supports, not optional extras
• That reforms recognise the limits of unpaid family care and the risk of carer burnout
• That children and early intervention supports be protected
The success of the NDIS should not be measured only by cost reduction. It should also be measured by whether children with disability are safe, supported, connected to their communities, and able to live with dignity.
Thank you for the opportunity to provide this submission.