Submission to the Senate Community Affairs Legislation Committee
Re: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill
2026
My name is , and I am writing as the mother of three young children, including two
sons, and , who are participants in the National Disability Insurance Scheme (NDIS).
My husband and I are raising , aged 10, and , aged 6, both of whom have, an ultra-rare genetic condition associated with profound physical and intellectual disability and significant functional impairment. We are also raising our youngest child, who is 3 years old.
I am writing to express my concerns regarding the proposed changes contained within the National
Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026,
particularly the increasing emphasis on “parental responsibility” in determining what supports should appropriately be funded through the NDIS.
Like many families, we manage the ordinary responsibilities of parenting young children every day. However, our family also carries the additional and extraordinary responsibilities associated with raising two profoundly disabled children who require extensive support across all aspects of daily living.
I fully acknowledge that parents have a responsibility to care for and support their children. However, I am concerned that the proposed changes risk failing to distinguish between ordinary parenting responsibilities and the level of disability-related care required by children with profound and permanent disabilities.
The supports our sons require are not simply additional parenting tasks. They arise directly because of their disabilities, and are in no way similar to the parenting tasks of other children their age.
Our 10-year-old son requires support with toileting, dressing, feeding, mobility, communication, medication administration and ongoing supervision throughout the day. He requires physical assistance to transfer safely, walk while holding hands, eat meals, complete personal care tasks and participate safely in everyday routines and therapy activities.
His day begins at approximately 5:00am and requires continuous support until bedtime at 8:00pm. He cannot safely complete basic daily tasks independently and requires one-to-one assistance and supervision for much of the day.
Our younger son also requires extensive disability-related support and constant supervision throughout daily life.
While is more physically mobile, he has no understanding of danger or risk and cannot safely function independently. His mobility does not reduce his support needs, in fact in many ways it increases the level of supervision required because he is physically capable of accessing unsafe situations without understanding the consequences.
He requires continuous oversight and support to maintain his safety, participate in everyday activities and complete basic daily routines. He cannot be left unsupervised in the way a typically
developing 6-year-old could. He can reach for the stove, grab knives off the bench or climb onto tables if he’s not supervised. And he doesn’t understand the word no.
This distinction is important because physical mobility should not be mistaken for independence or reduced disability support needs.
A major concern for our family is the assumption that parents should simply absorb increasing levels of supervision and care responsibilities if disability support is reduced or reclassified as parental responsibilities.
Importantly, both my husband and I work full time. This is only possible because disability supports help meet our children’s extensive care needs. And we don’t work full-time to avoid our children. We work full-time because we need to, to support our family, pay for our mortgage, pay for schooling and provide our children with the best life possible.
The reality is that there are no ordinary or mainstream care options available for our children.
Our sons cannot attend standard after-school care programs or be supervised in the way typically developing children their age can. They cannot safely self-manage in the afternoons, play independently, or be left unsupervised while we work, cook dinner, care for siblings or complete ordinary household tasks.
The level of supervision they require is specialised, constant, one-to-one and disability-related.
As parents of profoundly disabled children, we are effectively providing continuous risk assessment, behavioural supervision, personal care, communication support and physical assistance throughout the day.
This goes far beyond what would ordinarily be expected of parents of children aged 6 and 10.
The proposed emphasis on parental responsibility concerns me because it risks redefining disability related support as ordinary parenting responsibility.
The issue is not that my husband and I are unwilling to fulfil our responsibilities as parents. We already provide an extraordinary amount of unpaid care every single day. The issue is that there is a practical and human limit to how much disability-related support families can absorb without significant consequences.
The NDIS has not replaced our role as parents. Rather, it has enabled us to continue fulfilling that role while remaining active participants in the workforce and broader community.
Like many families raising children with profound disabilities, our lives are heavily structured around therapies, medical appointments, communication support, mobility assistance, feeding, behavioural regulation, supervision and advocacy for our children, while also continuing to meet the everyday needs of our youngest child.
If supports currently funded through the NDIS are reduced or reclassified as parental responsibilities, the practical consequence will not be that our children suddenly require less support. Their disabilities and support needs will remain the same.
Instead, those responsibilities will simply transfer onto my husband and me. For our family, that would likely mean one or both of us would need to reduce our working hours or leave employment altogether to provide the level of care and supervision our children require.
This would have significant financial consequences for our family, but it would also have broader economic impacts.
The NDIS currently enables families like ours to remain engaged in the workforce, contribute to the economy, pay taxes and maintain financial independence while raising children with significant disabilities.
Reducing supports under an expanded interpretation of parental responsibility risks forcing parents, particularly mothers, out of paid employment to compensate for gaps left by no longer available services.
I am concerned that the proposed legislation underestimates the extent to which NDIS support currently enables workforce participation for families caring for children with profound and lifelong disabilities.
I also believe it is important that the legislation recognises the cumulative impact on families raising multiple children with significant disabilities.
Raising one child with profound disability requires an extraordinary level of care, coordination and support. Raising two children with the same rare genetic condition compounds those responsibilities significantly.
The care requirements within our household are constant and intensive. The assumption that families can continue absorbing increasing levels of unpaid disability support without serious consequences to employment, wellbeing and financial stability is unrealistic.
I urge the Committee to ensure that any interpretation of parental responsibility clearly distinguishes between ordinary parenting responsibilities and the extraordinary level of disability related care required by children with profound and permanent disabilities.
The NDIS was established to support Australians with disability to participate in society and live ordinary lives. For children, that participation cannot be separated from the sustainability and wellbeing of their families.
Policies that shift disability-related care away from the NDIS and onto families without recognising the practical realities of profound disability risk undermining both family wellbeing and workforce participation.
I ask the Committee to carefully consider the impact these proposed changes may have on families like ours and to ensure that disability-related supports are not reclassified as parental responsibilities in a way that places unsustainable burdens on families already providing extraordinary levels of unpaid care.
Thank you for considering my submission.