National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2817
Senate Inquiry:
National Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026
I am the mother of two beautiful sons who are autistic and have been diagnosed with Developmental Coordination Disorder (DCD). My sons have benefitted from the NDIS initially under the early intervention pathway, before continuing to be NDIS participants at age 12 and 14.
My youngest son had delayed speech, and was diagnosed with Childhood Apraxia of Speech by the time he started prep. With the collaboration of his speech therapist and occupational therapist, he started school with support already in place and the process of applying for PSD (school) funding already begun. He received funding for Severe Language Disorder with Critical Educational Needs allowing him aide support until the end of grade 2, when his speech had improved so much through early intervention therapy he no longer qualified for funding. But with
that support, he was able to enjoy friendships at school, keep up with his classmatesacademically, and feel confident enough to stand in front of his class and work through maths problems on the board. This small investment in a number of years of therapy has allowed him to attend school and learn alongside his classmates.
I hate to think of what would have happened to him without that early intervention. But developing collaborative relationships with therapists who my son trusted were the key to his progress. Being autistic, relational safety is important, and “thriving kids” style block intervention or group sessions would not have been effective for him. Individualised support where the family has choice and control over who the therapist is, and can engage in partnership are essential. The support he needed is not available without the NDIS, and a new state-based system would have to be built from the ground up. This takes time, and the current bill feels too rushed. And in the end, it doesn’t save money, as the need doesn’t disappear, the states are expected to fund services instead.
Failure to provide it would mean an increase in children with unmet needs in an already struggling education system, with poorer educational outcomes, and most likely swarming an already struggling mental health system, public health system, even juvenile justice, the courts, and the prisons. Investing in early intervention is exactly how the “insurance” aspect of the NDIS is supposed to work - preventing worse problems down the track when they are more complex and expensive.
My children, as participants, are not the ones rorting the system, but they are the ones who would have their quality of life affected if the support is taken away. If this is about preventing fraud, then take action against those who are committing the fraud.
I am also concerned that the proposed functional assessments have not been decided upon or validated, so the members of parliament are effectively writing a “‘blank cheque”’. Why rush the
legislation when no-one knows how it will be implemented? RoboNDIS functional capacityNational Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2817
assessments (Schedule 3, Part 2) cannot adequately assess an individual’s needs, especially when that person may not be able to communicate well, or has fluctuating needs, or complex
needs that interact. Qualified professionals should be the only people entrusted withdecision-making that can be life or death, with no opportunity to appeal it. How many people will die by suicide or neglect without adequate support? Effective consultation with DRO (disability representative organisations) and co-design is essential here.
As a parent with my own health needs, I can say even with support from the NDIS, our family life is hard. Constantly advocating for my children, filling in forms, getting reports, arranging therapy appointments, taking my kids to therapy appointments, nervous system co-regulation, etc make it hard for me to take care of my own needs. I couldn’t get to a dentist for 7 years, my iron levels got to 0 before I had the capacity to get to appointments. This is an ongoing problem for me, in addition to the usual parenting overwhelm of house-cleaning, shopping, cooking, and the usual responsibilities. But I am so grateful to have that therapy support available for my children, that I make the most of it and would always put my kids’ needs before my own. But that is not sustainable long-term, and taking away their NDIS budgets would break us.
Already my partner and I tag-team, rather than spending time investing in our relationship. He works 60 hour weeks, I work two days a week but it is a juggle. My job is important to me as I accrue superannuation, I earn money (and pay tax), and it helps me balance my life, rather than being a full-time carer. Increasing ‘parental responsibility’ (part of the legislation) is not possible for me without having to quit my job, have a lower income, lower superannuation, and push me beyond my coping limits. Every parent / carer I know is in a similar situation - holding on by a thread. And we are educated people in decent jobs, those without our privilege will fare even worse.
Schedule 2, part 5 changes mean that if I have not put in my claim for reimbursement of therapy costs within 90 days, I cannot get that reimbursement. As a busy Mum, I tend to put in my claims when I have time, which may be more than 90 days afterwards at times. Meaning we will be out of pocket, even if there is money left in their budgets.
Knowing that hundreds of thousands of participants are going to lose access to the NDIS, or have their budgets decreased without individual needs taken into account is terrifying. People with disabilities deserve to have a life, to socialise, and work towards their goals just as much as non-disabled people do. This is a human rights issue, and as signatories to the CRPD these rights must be upheld. Budget savings should be made without targetting the most vulnerable individuals. I don’t object to reform, but I do object to reform that punishes participants rather than those committing fraud or inflating prices.