National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2423
Submission regarding proposed NDIS reforms
I am a sole parent of a young person with disability. I am writing this submission because recent public discussion about children and young people accessing the NDIS has focused on claims of overdiagnosis, poor parenting or children receiving supports they do not need. Much of this commentary suggests parents should simply do more themselves or asks what families did before the NDIS – this media-based narrative has been hard to read following my own experience.
My daughter was raised in a stable home with a parent who actively sought support, used public services, completed parenting programs and exhausted mainstream options before accessing the NDIS. Despite these advantages, her functioning continued to decline, and the NDIS provided supports that changed her trajectory.
My daughter would likely be described as having “low to moderate support needs”. She is academically capable and social, but these strengths masked significant functional impairments.
As she entered childcare and school, concerns emerged about emotional regulation, behaviour, safety, social relationships and participation in learning. Although flagged as academically advanced, educational goals shifted from learning to behaviour management. Over time she showed escalating aggression, absconding, unsafe risk-taking, social boundary difficulties, self-injury and ongoing incontinence. She was falling behind socially, receiving no invitations from peers and struggling to build healthy relationships.
As a sole parent working full-time, I pursued public health services, parenting programs, educational supports and private providers. I exhausted all options. Even with education, resources and capacity to navigate systems, I could not access the level of support she required.
The impact on our family was substantial. I experienced severe burnout, reduced my workforce participation and took six months of long service leave at half pay. During this time, I relied on Centrelink and community assistance, including food pantries, and deferred university study. This period also coincided with the emergence of epilepsy, increasing the complexity of her care.
She was diagnosed with ADHD. Medication improved hyperactivity and impulsivity, but social communication difficulties, emotional regulation issues, sensory-related behaviours and boundary difficulties became more apparent. At this point I learned her delayed head control, delayed speech and delayed toileting were consistently found in autistic children. Further assessment resulted in a diagnosis of Autism Spectrum Disorder Level 2.
After one year of NDIS-funded therapy alongside medical treatment, I have seen significant improvements in emotional regulation, social participation, safety and overall functioning. She still requires support, but intervention prevented further deterioration, improved school participation and relationships, and reduced behaviours that placed her and others at risk.
I share this because it shows where the NDIS can be necessary and the outcomes that follow timely intervention. Although she appeared to have relatively low support needs, her functional impairments were escalating and affecting every part of her life. Without intervention, I have no doubt she would face increasing barriers in adolescence and adulthood, limiting participation in education, relationships, community life and employment. I would be unemployed.
However, I do acknowledge that a well-funded foundational supports system may meet many of her current needs, as long as it exists before the removal of her current therapies, and therefore my concern is not my own child. My personal experience, as well as my professional experience,
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2423
raises questions about what these reforms mean for young people facing far greater barriers and what will happen to those facing much harsher realities.
The World Health Organisation’s International Classification of Functioning, Disability and Health recognises that disability is shaped not only by health conditions but also by environment (WHO, 2022). Trauma, family stability, housing, poverty, education and access to support all influence functioning and participation.
Carey et al. (2017) describe Australia’s previous disability system as fragmented, inequitable and often unable to respond to individual circumstances. Support was delivered through commissioned services and short-term funding, with access never determined by need. This created inequitable variation and left many unable to obtain required support. The NDIS was designed to address this through individualised funding that recognised differing needs, goals and circumstances. Carey et al. (2017) further note that standardised approaches often produce unequal outcomes because they fail to account for differences in social and economic resources and people’s capacity to benefit from services.
Carey’s description of the previous system sounds eerily similar to processes proposed in the new Bill. Reforms place greater emphasis on standardised assessments and funding while giving insufficient consideration to the interaction between disability and environmental disadvantage. I am also concerned about a shift away from an individualised understanding of disability and the Minister limiting safeguards as well as the power to do sweeping reductions for “sustainability”. How many lives will this cost?
A more standardised assessment process risks reducing people to scores, categories or assumptions about what someone with a particular diagnosis should require. Two people with similar diagnoses often need very different levels of support. Disability combined with social and economic disadvantage can produce significantly poorer outcomes than either factor alone. For many young people, functional capacity is shaped not only by diagnosis but by the environment in which they are growing up. This “double disadvantage” can significantly worsen outcomes; young people with disability are more likely to experience poverty, family instability, child protection involvement, educational disadvantage and poorer health (Gatwiri, 2024; Yu, 2010). Socio- economic factors, alongside access to services, and community supports all influence participation and development. Conversely, research has consistently shown that intervention throughout childhood and adolescence improves education, social participation, independence, employment and long-term wellbeing.
I am also concerned about increasing expectations on families to provide disability-specific intervention before any formal services will be available. My experience shows how quickly families can reach breaking point. I entered this period with education, employment, housing stability and advocacy skills. Despite this, caring for a young person with escalating “low-moderate” needs resulted in burnout, long-term leave, and financial hardship. Families facing greater disadvantage will experience even greater strain. Families differ greatly in capacity, resources and understanding of disability. Some parents may be managing disability themselves, have very high caring responsibilities, or be facing poverty, housing insecurity, family violence, mental illness or social isolation.
Young people and families experiencing significant disadvantage are often least able to understand complex systems, identify supports, gather evidence or challenge inaccurate decisions. Without adequate support, those with the greatest needs may be least able to access appropriate assistance. These reforms will not reduce need. Instead, pressure and costs will shift to mental health services, hospitals, child protection, homelessness services, the justice system and income support. These changes will affect young people and families who already face significant
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 2423
disadvantage through absolutely no fault of their own. Reduced access to support risks limiting opportunities for education, employment, independence, community participation and quality of life.
I urge the Committee to:
• Reconsider standardised assessment processes that do not account for environmental circumstances and individual needs.
• Retain a genuinely individualised approach to planning and funding.
• Reconsider reforms that increase expectations on families without recognising differences in capacity and vulnerability.
• Ensure funding decisions remain based on functional need and individual circumstances, not assumptions about diagnosis or categories.
• Maintain accessible pathways for review, escalation and appeal for participants facing barriers to self-advocacy.
• Ensure participants have support to understand decisions, navigate systems and connect with services.
• Recognise the value of timely intervention throughout childhood and adolescence.
The NDIS made a meaningful difference to my daughter’s life. It provided supports unavailable through mainstream systems and helped prevent further deterioration. The disability support system must continue to be designed around the needs of the most vulnerable participants, not the most capable. I implore the Committee to keep those Australians at the centre of its decision-making.
World Health Organization. (2022). International Classification of Functioning, Disability and Health (ICF). Geneva: World Health Organization.
Carey, G., Malbon, E., Reeders, D., Kavanagh, A., & Llewellyn, G. (2017). Redressing or entrenching social and health inequities through policy implementation? Examining personalised budgets through the Australian National Disability Insurance Scheme. International Journal for Equity in Health, 16(192).
Gatwiri, K., McPherson, L., & James, A. (2024). Research examining disability, child welfare involvement and unmet support needs among children and young people with disability in out-of- home care. Health & Social Care in the Community.
Yu, P. (2010). Research examining the compounding effects of disability and socioeconomic disadvantage on educafonal and social outcomes for young people. Australian Journal Of Labour Economics, 13 (3), pp 265 – 286.