Submission 911
Submission to the Senate Community Affairs Legislation Committee
National Disability Insurance Scheme Amendment (Securing the NDIS
for Future Generations) Bill 2026
Introduction
I am a former tax lawyer and current full-time carer for my 12-year old son, who has severe autism and severe intellectual disability. I am writing to express serious concerns regarding the National
Disability Insurance Scheme Amendment (Securing the NDIS for Future
Generations) Bill 2026 and the broader direction of proposed NDIS reforms.
This submission focuses particularly on the distinction between ordinary parenting and disability-related care, the importance of practical supports such as support workers and respite, the risks associated with narrowing access to supports, and the extent to which unpaid carers already function as an invisible workforce within Australia’s disability support system.
I understand that governments must consider the long-term sustainability of the NDIS and ensure public money is spent appropriately. I support efforts to reduce fraud, improve transparency and ensure funding reaches people who genuinely require support. However, I am deeply concerned that aspects of the current reform process risk undermining the original purpose of the scheme and shifting unsustainable caring responsibilities back onto families, particularly mothers, ageing grandparents and unpaid carers.
I am particularly concerned by provisions and policy language relating to eligibility clarification, the interpretation of “reasonable and necessary” supports, consideration of informal family supports, and reforms that may narrow access to practical supports for participants with high supervision needs
Background and Family Circumstances
Before becoming a full-time carer, I completed commerce and law degrees at the University of Sydney and worked as a tax lawyer. After getting married and having my first child, I fully intended to return to my professional career following maternity leave. Instead, my husband and I found ourselves raising a child with severe nonverbal autism and intellectual disabilities who requires constant supervision and support. I have stayed at home with him since then.
My son is now 12 years old and remains in nappies. I currently home school him because our local public school could not safely or adequately manage his needs. We are attempting to secure placement in a special public school and are simply hoping he will eventually be able to remain there for more than an hour a day. My husband and I also have two younger daughters, aged 5 and 8, who fortunately do
Submission 911
not have disabilities but still require the ordinary care and attention that young children need.
Despite the level of disability involved, we receive approximately $16,000 per year in capacity building supports through the NDIS and no core funding at all. In reality, since our son was two years old, we have spent well over $100,000 annually on therapists, support workers and disability-related supports, while I personally provide the majority of the caring, supervision, advocacy, coordination and training required to maintain his care arrangements. His funding rolls over automatically each year. I went through an internal review process when he was five and received more funding for one year, after which it went right down again. I am once more in the process of gathering reports to apply for more support - this process in itself takes at least 45 minutes a day not counting the admin load of managing future schools, speaking to therapists and being self-managed as his ABA supervisor is not a registered provider.
The Reality of Intensive Disability Care
The practical reality of caring for a child with severe disabilities is difficult to fully explain in policy discussions. My son engages in constant sensory-seeking and unsafe behaviours that require continuous monitoring. He regularly attempts to chew or eat non-food items (today he tried to eat a pencil and my yoga mat) and cannot safely be left unsupervised even briefly. Silence in our house is often not relaxing but a warning sign that something unsafe may be occurring.
I also need to constantly supervise interactions between my son and his younger sisters because he does not understand when he is hurting them. Ordinary daily tasks such as cooking dinner, picking up my daughters from school, helping them with homework or even taking a shower frequently depend on another functioning adult being available to supervise him safely.
Much of our daily life revolves around trying to prevent meltdowns, manage behavioural escalation and maintain safety within the household. My son constantly seeks drives in the car as a form of regulation. We may return home from a long drive only for him to immediately insist on going out again, and if we refuse the situation can escalate rapidly into distress that affects the entire family. These are not occasional incidents but ongoing realities that shape every aspect of our daily functioning.
Ordinary Parenting Versus Disability-Related Care
These experiences highlight what I believe is one of the central problems within the current reform discussion: the increasing expansion of what is considered “ordinary parental responsibility.” There is a profound difference between the ordinary parenting responsibilities involved in raising a typical 12-year-old and the
Submission 911
level of supervision, intervention and regulation required when caring for a child with severe disabilities.
For many parents, caring for a 12-year-old may involve reminding them to complete homework, limiting screen time or driving them to weekend sport. In my own household, parenting involves constant supervision around toileting behaviours, emotional regulation, absconding risks, behavioural escalation, communication difficulties and physical safety. If left alone for even a second my son will run into the bathroom and splash water out of the toilet or eat his own nappy. When out and about my son will not leave the car and his behavior escalates quickly with any demands. I am effectively trapped in the living room of my house or in my car all of his awake hours unless I pay a support worker $70 an hour as my husband is at work until late evening.
I regularly spend hours coordinating therapists, behaviour support practitioners, adjust his medication with his pediatricians, and speak with schools and support workers while simultaneously managing the practical realities of day-to-day care. I will have to cook his meals with thirty interruptions to sprint after him into the bathroom in case he splashes water out or needs help with toileting. I have to strip his bed and wash many layers of water proof sheeting as he refuses to wear a nappy at night. I have to do this while running back to make sure he has not destroyed the house or himself while I am gone. My husband or I have to take turns remaining with him for all family events as he cannot go to any restaurant or most houses. He needs drives for about 5 hours a day, every day. He is now my size so I advertise for support workers that are tall, active and then train them for months. Using grandparents with a tall and active toddler who is going through puberty is mostly out of the question. Even if my husband and I want to do an ordinary activity like watch our daughters play netball on a Sunday morning or go to my mother-in-laws birthday this involves paying a support worker about $150 an hour.
The Importance of Practical Supports
I am also concerned by policy language suggesting these pressures can largely be solved through “building parental capacity.” Education and strategies can certainly help families. However, for many carers the issue is not a lack of parenting knowledge. The issue is that the caring responsibilities themselves have expanded to consume nearly every available hour of the day.
I am particularly concerned by proposals that appear to prioritise therapy-based “capacity building” supports while reducing access to practical supports such as support workers and community participation. Families often require both.
An analogy that may help explain this distinction is caring for a demanding newborn baby who cries constantly. Parents may benefit from advice about feeding or settling techniques, but no amount of education changes the reality that caring for a newborn is
Submission 911
exhausting. Sometimes what a parent truly needs is another trusted adult to hold the baby for an hour while they shower, sleep or recover. For many disability families, support workers and respite serve a similar function. In my case, I have effectively had a demanding toddler for twelve years and will continue to for life.
The Broader Support Systems Most Families Rely Upon
I would also ask policymakers to reflect on the systems that currently allow many Australians to participate fully in society and employment. Working parents often rely on childcare, schools, after school care, grandparents and informal family support to make ordinary life manageable.
Yet many disability families cannot access those same supports because their children’s needs are far more intensive and complex. My son cannot simply attend mainstream childcare, remain safely at school all day or be casually supervised by relatives in the way many other children can. The ordinary support structures that sustain most families are often unavailable to us while the caring demands we face are substantially greater.
Concerns Regarding the Current Reform Process
I am further concerned by the speed and scale of the proposed reforms and the limited consultation period. Changes of this magnitude affect hundreds of thousands of Australians and should not proceed without substantial engagement with participants, carers, clinicians and disability organisations.
The NDIS is not perfect and reform is necessary, particularly regarding administrative complexity, inconsistent planning decisions, workforce quality and fraud prevention. However, reform should focus on improving the effectiveness and fairness of the scheme rather than primarily reducing supports or shifting greater burdens onto unpaid carers.
Recommendations
I respectfully urge the Committee to preserve access to practical supports including support workers, respite and community participation supports for participants with substantial supervision and behavioural needs.
I urge the Committee to ensure that “ordinary parental responsibility” is clearly and narrowly defined so that intensive disability-related supervision is not inappropriately shifted onto unpaid family members.
I recommend that the economic and social contribution of unpaid carers be formally recognised when assessing the impact of proposed reforms, including the extent to which carers reduce reliance on more expensive crisis and institutional systems.
Submission 911
I urge the Committee to avoid reforms that disproportionately prioritise therapy-based “capacity building” supports while reducing practical in-home and community supports that allow families to function sustainably.
Finally, I recommend broader and more meaningful consultation with participants, carers, clinicians and disability organisations before major structural reforms are implemented.
Conclusion
Effective reform should recognise both the needs of participants and the sustainability of the families who provide the majority of day to-day care. Families already contribute enormous unpaid labour to Australia’s disability support system. Policies that further increase this burden without adequate practical support risk pushing many carers beyond breaking point while ultimately creating greater long-term social and economic costs.
Thank you for considering my submission.
Yours sincerely,