Submission 4247 — Ms Kate Alexander — NDIS Future Generations Bill

National Disability Insurance Scheme Amendment (Securing the NDIS

for Future Generations) Bill 2026

Personal submission to the Senate Community Affairs Legislation Committee

Submitted by: Kate Alexander

Senior Lawyer and parent of a child with SATB2 Associated Syndrome 1 June 2026

1. About this submission I am a lawyer. I am also the mother of , a five-year-old boy with SATB2 Associated Syndrome, a rare genetic condition causing severe intellectual disability, absent speech, and complex support needs. I make this submission in a personal capacity, as a parent who has navigated the NDIS, the out-of-school hours care system, the In Home Care scheme, and the Inclusion Support Program on behalf of my son.

This submission focuses on two specific concerns arising from the Bill: the ministerial expenditure lever in proposed section 34A, and the parental responsibility provisions in sections 34(1G) and 34(1H). Both have direct and foreseeable consequences for families like mine.

is five years old. He started school this year at a School for Special Purposes (SSP) in Newcastle, NSW. He has SATB2 Associated Syndrome, diagnosed just weeks before his fourth birthday, following a diagnostic journey that included chromosomal microarray analysis, karyotype analysis, specific testing for Angelman Syndrome, and ultimately whole genome sequencing through a research program. Before his confirmed diagnosis, he had a global developmental delay diagnosis.

is non-verbal. He communicates primarily through showing people objects, gestures, and a small number of rudimentary Key Word Signs. He has minimal receptive language and no safety awareness. He will run toward roads, water and unfenced areas without hesitation. He is not toilet trained. He requires full assistance with personal care and constant supervision in all environments outside the home.

is also social, affectionate and engaged. His smile lights up a room. He runs toward other children, not away from them. He loves drawing, action figures, music, and being around people. His disability does not diminish his desire to be part of the world, but it does mean he needs support to participate safely.

We live in a close-knit community. spent his early years in mainstream long day care and preschool. The children in our neighbourhood know him. About ten children get off the school bus near our house each afternoon. If is home, he loves to run with them while

they play tip and red rover cross over. They understand him and they make space for him. These relationships are also being built at the local public school, where his support worker takes him to play with the children who are at Out of School Hours Care (OOSH). The children’s understanding of who is was built over years of ordinary daily contact, and it is genuinely rare.

When transitioned to his SSP this year, his school day became separated from mainstream peers. That was the right decision for his learning and communication needs. But it meant that the hours after school, and the school holidays, became the only time he has contact with the children who know him. The support worker funding he now has to access the community did not change his life, it held open a door that was about to close. Without it, would have been cut off from his community at exactly the moment when school had already begun to separate him from it.

3. The out-of-school hours care gap Australian primary school children have approximately 12 weeks of school holidays and additional pupil free days each year. After school care ends at a fixed time that does not align with standard working hours. For a parent whose child cannot access OOSH or vacation care, maintaining employment in most jobs is not sustainable. The gap is not marginal. It is structural.

I work four days per week to support my family. My daughter attends OOSH and vacation care, as well as other mainstream camps and extra-curricular activities, which allows me to work. can’t access those services, despite the social and developmental benefits he would have from attending.

I have contacted multiple OOSH services seeking to enrol . I engaged the NSW/ACT Inclusion Agency, which provides inclusion support to early childhood education and care services. I proposed solutions including additional funded staff, equipment loans, training, and a phased inclusion approach. Despite these efforts, every service declined to enrol . The reasons were consistent: they could not safely manage his absconding behaviour and personal care needs within their existing staffing model, even with Inclusion Agency support.

The correspondence declining ’s enrolment from OOSH Newcastle Group is attached to this submission. It confirms in writing that the barriers are his safety needs and toileting requirements, not a lack of goodwill. The letter of 22 May 2025 states that with only two educators on site, the service is not equipped to safely manage the level of supervision requires.

This is not a failure of individual services. It is a systemic gap, identified in the Government’s own commissioned research. A 2021 literature review commissioned by the NSW Department of Education, conducted by Associate Professor Jennifer Cartmel and Dr Bruce Hurst of Griffith University, found that children with high support needs face unique barriers to OOSH access and recommended a review of inclusion supports, qualification requirements, and provision of OOSH at specialist schools. That review was published in 2021. Four years later, none of these recommendations have been implemented in NSW.

The University of Sydney’s Sydney Policy Lab published research in April 2025 finding that subsidised holiday care places are available for only 17.9 per cent of Australian primary school students nationally. For children with disability who cannot access mainstream OOSH, the shortage is more acute and the alternatives are inadequate.

4. The In Home Care scheme is not an adequate alternative The Government’s designated alternative for families who cannot access mainstream OOSH is the In Home Care (IHC) scheme. It is not adequate for , or for many children with his level of support need, for the following reasons.

4.1 Scarcity There are only 3,200 IHC places nationally. This is the entire scheme, for all of Australia. It is not available on request.

4.2 Workforce mismatch IHC educators are required to hold, or be working towards, a Certificate III in Early Childhood Education and Care. This qualification has no disability-specific content. IHC educators are trained to deliver educational programs for young children. They are not trained in disability support, behaviour management, restrictive practices, or complex communication needs. is five. His sister is eight. Neither is in early childhood. As grows older, the IHC framework becomes more, not less, inappropriate. The support he will need at ten, fifteen, and twenty is not contemplated by an early childhood care framework.

4.3 The isolation outcome IHC care is delivered in the home. For a child with ’s safety needs, one educator cannot safely take him into community settings alongside other children. In practice, IHC means staying home. That is not inclusion. It is the segregation the Disability Royal Commission found to cause profound harm.

4.4 The cost gap

IHC costs between $35 and $55 per hour. The Child Care Subsidy caps reimbursement at $30 per hour, meaning families pay the full gap above that rate.

At $45 per hour (a typical rate for IHC services) a family pays $15 per hour out of pocket, plus any additional gap that remains after the Child Care Subsidy is applied. For a parent requiring full coverage across after-school hours and school holidays, the gap fee becomes punitive.

4.5 Victoria’s High Intensity OSHC Initiative

Victoria has recognised this gap and funded a High Intensity Outside School Hours Care Initiative at Victorian government specialist schools. This is a meaningful improvement on the status quo and demonstrates that governments can act when they choose to. NSW has no equivalent program. attends an SSP, where there is no OOSH operating.

However, a specialist OOSH program at a specialist school is still a segregated setting. It would not give access to the children playing at the local public school oval, or the children who get off the bus near our house. It would not preserve the community relationships that were built in mainstream daycare and preschool. What needs, and what the CRPD requires, is not a better specialist program. It is funded support to participate in the ordinary community settings he already belongs to. Those are different things.

5. What community participation funding actually preserves

’s support worker funding means he can continue to build relationships with the kids in our community. His support worker takes him to the school grounds near our home after school and during holidays, where the local children play attending OOSH play on the basketball court and oval. runs with them while they play soccer and tip. They understand him, which means when they see him at the shops they say hello, rather than gawking at a child who cant talk and has some strange quirks.

This is not a program. It is not a service. It is a child playing after school with other children from his neighbourhood, which is what five and six year olds do, and what has every right to do. The support worker makes it safe. Without the funding, is not at the basketball court. He is at home, separated from the only mainstream peer community he has.

The Disability Royal Commission found that the systematic exclusion of people with disability from ordinary community life causes profound harm, and that Australia must actively invest in community inclusion rather than withdraw from it. Article 19 of the United Nations Convention on the Rights of Persons with Disabilities guarantees the right to live in and be included in the community. That right belongs to now, at five. The community participation funding is what makes it a reality.

A ministerial determination reducing community participation funding is not a budget adjustment. For , it is the loss of his community. For the children who know him, it is the beginning of his disappearance from their lives. That understanding, built over years of ordinary contact, does not come back easily once it is gone.

There is also a broader developmental argument. Social skills, including sharing, turn-taking, reading social cues, and understanding physical boundaries, are not learned in isolation. They are learned through practice with peers in real environments. Safety awareness develops through supported community participation. A child who spends his childhood separated from mainstream community life will not develop these capacities. The investment in community participation now is an investment in reduced support needs over the course of ’s life. Cut it now and you cut that pathway.

6. The ministerial lever and the procedural fairness gap Proposed section 34A gives the Minister power to reduce funding across entire support categories by legislative instrument. The Explanatory Memorandum gives as an example a 25 per cent reduction in community participation funding. Implementation data indicates that budget allocations for social, civic and community participation supports are already scheduled to be reduced from 1 October 2026.i

The ministerial lever as currently designed provides no mechanism for a family to challenge the outcome on the basis of their individual circumstances. There is no exemption pathway, no merits review, no individual appeal. A determination applies universally, regardless of what it means for a specific child or family. Where that cut creates a safeguarding risk or eliminates the only viable care arrangement available to a family, the absence of any appeal pathway is not merely a legal concern. It is a human rights one.

7. Parental responsibility and the capacity to parent The Bill’s provisions on parental responsibility in sections 34(1G) and 34(1H) raise a specific concern I wish to put on the record as a parent who has been through the NDIS evidence process.

Before received support worker funding, I was required to establish that I had met all parental responsibilities for his community access. I wrote formal letters to OOSH services. I contacted the Inclusion Agency. I proposed solutions. I documented everything. I am a lawyer. I knew what was required. The cruel irony is that what I was demonstrating was the failure of the mainstream system, not my own. If I could simply enrol in OOSH alongside his sister, as any responsible parent would prefer, I would not need NDIS funding at all.

Many families never receive community participation funding, not because their child does not need it, but because they cannot produce the documentation the NDIA requires. They may not know to contact the Inclusion Agency. They may not have kept records. The system rewards sophisticated advocacy, not genuine need. The proposed expansion of parental responsibility in sections 34(1G) and 34(1H) risks making this harder, not easier, for families who are already carrying more than they can sustain.

Support worker funding does not replace parental responsibility. It creates the conditions in which parental responsibility can be exercised more effectively. When a family has adequate funded support, there is cognitive and emotional space to pursue longer-term developmental goals that require sustained effort over years. Goals that simply cannot be attempted when every moment of capacity is consumed by immediate care demands. Adequate funded support today builds toward greater independence over the course of a lifetime. The parental responsibility framework must account for this, rather than treating funded support and parental responsibility as alternatives rather than complements

The benchmark for parental responsibility in sections 34(1G) and 34(1H) must be explicitly set against what a parent of a child of the same age without disability would be expected to provide — applied at the level of intensity, skill requirement and duration, not merely category. A support need does not fall within ordinary parental responsibility merely because it shares a label with something typically developing children also require. For community access, that benchmark must acknowledge that the mainstream system has failed children like , that this failure is documented and systemic, and that seeking NDIS funding is the consequence of meeting parental responsibility, not an alternative to it. This is not a preference for paid care over family care. It is not a matter of household efficiency. It is the only mechanism through which a child with no safety awareness can access the community he belongs to.

8. Recommendation I make the following recommendations, from my position as a parent who has lived these systems simultaneously:

• That the Bill include an individual exemption mechanism allowing a participant or their family to apply to the NDIA for an exemption from any categorical reduction under section 34A where their individual needs assessment establishes they require supports above the cap level, with the NDIA’s decision subject to review by the Administrative Review Tribunal.

• That any ministerial determination under section 34A be subject to meaningful Parliamentary scrutiny before taking effect, and that the reasoning and evidence underpinning it be publicly available so that families and participants can understand and where necessary challenge the basis for it.

• That the parental responsibility benchmark in sections 34(1G) and 34(1H) be explicitly applied:

a) at the level of intensity, skill requirement and duration, not merely category; and

b) measured against what a parent of a child of the same age without disability would ordinarily be expected to provide. A support need does not fall within ordinary parental responsibility merely because it shares a label with something typically developing children also require. Mainstream care systems have failed many children with disability, and seeking NDIS funding is often the consequence of meeting parental responsibility, not an alternative to it. This is not a preference for paid care. It is not a matter of household efficiency. It is the only mechanism through which children with high support needs can access the community they belong to.

 The Government, in collaboration with State Governments, consider the recommendations of the 2021 Cartmel and Hurst literature review on equitable access to OOSH for children with high support needs, including reviewing inclusion supports, qualification requirements, and provision of OOSH at Schools for Special Purposes.

Kate Alexander

Senior Lawyer and parent 1 June 2026

Attachments: OOSH Newcastle Group correspondence (May-June 2025); Cartmel, J. & Hurst, B. (2021). More than just convenient care: A policy literature review of outside school hours care. Griffith University, commissioned by the NSW Department of Education; Harrison Brennan, K. & Hickie, I. (2025). Beyond the bell: Transforming Australia’s outside-school-hours landscape. Sydney Policy Lab and Brain and Mind Centre, University of Sydney.

i The Department of Health, Disability and Ageing has confirmed that budget allocations for social, civic and community participation supports will be reduced by 50 per cent from 1 October 2026 (Department of Health, Disability and Ageing, About the changes to the NDIS, https://www.health.gov.au/our work/ndis-legislation-changes/amendments/ndis-amendment-securing-the-ndis-for-future generations-bill-2026/about-the-changes-to-the-ndis).