Submission 982
Submission to the Senate Community Affairs Legisla6on Commi7ee – Alison
Philippe
“Submission from grandmother and advocate of a child with profound disabilities”
Na#onal Disability Insurance Scheme Amendment (Securing the NDIS for Future
Genera#ons) Bill 2026
I am writing this submission as the grandmother and advocate of a child with significant disabilities who relies upon the National Disability Insurance Scheme (NDIS) to access communication support, behavioural support, community participation, emotional regulation support, and educational participation. My grandson is diagnosed with Autism Spectrum Disorder (ASD) Level 3, Attention Deficit Hyperactivity Disorder (ADHD), Intellectual Disability, and is predominantly non-speaking. He requires substantial daily support across communication, regulation, learning, safety, and social participation. The supports he receives through the NDIS are not optional extras or lifestyle benefits. They are fundamental supports that allow him to participate in education, communicate with others, regulate his emotions, engage safely within the community, and develop skills that support long-term independence and quality of life. I wish to express serious concerns regarding the proposed National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 and its potential implications for the human rights of people with disabilities, particularly children and participants with complex support needs. Australia is a signatory to the Convention on the Rights of Persons with Disabilities (CRPD) and the Convention on the Rights of the Child (CRC). These conventions impose obligations upon Australia to ensure that people with disabilities are able to participate fully and equally within society and that children with disabilities receive the support necessary to develop to their fullest potential. From a human rights perspective, disability support should not be viewed merely as a budgetary or economic issue. Access to appropriate supports is directly connected to dignity, equality, participation, education, communication, safety, autonomy, and protection from exclusion. One of the most concerning aspects of the proposed reforms is the apparent tightening of eligibility requirements and the proposed redefinition of “permanence.” Public information suggests that participants may increasingly be expected to pursue all “available treatments” before being considered eligible for ongoing support. This raises significant ethical and human rights concerns. For many people with disabilities, treatments may technically exist but remain practically inaccessible due to financial cost, long waiting lists, geographical limitations, lack of local specialists, or because the treatment itself may not meaningfully alter the disability. Requiring disabled people to continually pursue treatment in order to justify support risks shifting disability policy back towards a medicalised framework where individuals must prove they are sufficiently impaired or insufficiently “fixable” before receiving assistance. This appears inconsistent with the social model of disability underpinning the CRPD. Disability does not arise solely from impairment itself. Disability also arises from barriers within environments, systems, institutions, communication structures, education systems, and broader society.
Submission 982
For children with profound or complex disabilities, disability supports cannot be separated from educational participation. In my grandson’s case, his ability to attend school safely, transition between activities, regulate emotions, communicate needs, and participate in learning depends heavily upon structured supports, communication systems, behavioural strategies, sensory regulation supports, and consistent adult assistance. When those supports are inconsistent or inadequate, the consequences are immediate and severe. School records demonstrate difficulties with dysregulation, reduced participation, behavioural escalation, shortened school attendance, and challenges accessing structured learning. Article 24 of the Convention on the Rights of Persons with Disabilities (CRPD) protects the right of disabled people to access education on an equal basis with others. However, for many children with significant disabilities, educational access is inseparable from disability supports funded outside the education system itself. If communication supports, behavioural supports, social participation supports, therapy supports, or capacity-building supports are reduced, many children will not simply receive “less assistance.” They may lose meaningful access to education, social development, communication opportunities, and safe community participation altogether. I am also concerned that the proposed reforms increasingly frame disabled people as economic liabilities whose support must be constrained primarily for fiscal reasons. While governments are entitled to consider financial sustainability, disability support should not be approached primarily through a deficit or budgetary lens. At the same time, it is entirely reasonable for governments to expect accountability, transparency, and appropriate use of public funding. Stronger regulation of unethical or exploitative NDIS providers, improved auditing processes, and earlier intervention regarding fraudulent or inappropriate claims would likely recover substantial public funds without reducing essential supports for genuinely disabled participants. There is also a legitimate public concern that many large corporations and mining companies are often able to minimise tax obligations through legal and financial mechanisms while governments simultaneously seek savings from disability supports relied upon by some of the most vulnerable members of society. This creates a perception that fiscal restraint is being disproportionately imposed upon disabled people and their families rather than being shared equitably across society. Appropriate oversight of participant funding is also important. Where participants, carers, or families receive specialist advice and funded supports, there should be reasonable expectations that evidence-based strategies and therapeutic recommendations are being meaningfully implemented where practicable. Accountability and human rights are not mutually exclusive. Proper oversight helps protect the long-term integrity and sustainability of the NDIS while ensuring that participants with genuine and significant disabilities continue to receive the supports necessary for dignity, participation, safety, and equality. I am also concerned that the proposed reforms may place greater pressure upon already under resourced state systems, schools, carers, and families. In practice, this may simply shift costs and responsibilities between systems while leaving disabled people without adequate support. In my grandson’s case, the interaction between education and disability support is already fragile and highly dependent upon co-ordination between family, school, therapists, support workers, and medical professionals. School records already identify ongoing concerns regarding communication, transitions, regulation, behaviour, safety, and educational participation. I am particularly concerned about how these reforms may affect participants who are non-speaking, intellectually disabled, cognitively impaired, or otherwise unable to advocate effectively for
Submission 982