NDIS funding supports social participation and reduces anxiety (Family or carer experience)

Submission 498

Senate Standing Committee on Community Affairs

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for

Future Generations) Bill 2026

Submission from a Carer and Mother of an NDIS Participant

Senate Submission: NDIS Amendment Bill

Submitted: May 2026

1. About Me I am a mother, primary carer, and home educator living on the Sunshine Coast in Queensland. I am writing this submission on behalf of my five-year-old daughter, who is an NDIS participant diagnosed with AuDHD — autism and ADHD. She also experiences significant anxiety and school-related distress, meaning that mainstream schooling is not currently a safe or viable option for her.

I am also neurodivergent. After my daughter was born, I experienced postnatal depression, and caring for a child who experiences the world as intensely as she does has required everything I have. We are fortunate to live in a multigenerational household with her grandparents, which provides some additional support — but even with this, the demands of being her primary carer, working from home, and homeschooling her are at the very limits of what is sustainable for me.

My husband is also neurodivergent. We have actively sought professional support to navigate the pressures of our family circumstances, including the very real risk of relationship breakdown under the weight of our caring responsibilities.

I first sought NDIS support for my daughter in September 2024 through an early intervention facilitator. We provided a privately funded formal diagnosis in July 2025. My daughter was finally approved for NDIS funding in January 2026 — a process that took over sixteen months from first contact. The relief of that approval was profound. For the first time, I felt we were not alone.

I am writing because the proposed amendments to the NDIS threaten to undo that sense of safety — and I am deeply concerned about what that would mean for my daughter, for our family, and for the thousands of families like ours across Australia.

2. What NDIS Funding Has Made Possible My daughter is currently seeing an occupational therapist fortnightly. One of the most significant outcomes of this support has been the gradual expansion of her “circle of safe people” — the small number of trusted adults she feels secure with. For a child whose world is governed by anxiety, this is not a small thing. It is foundational.

She now engages in one-on-one sessions with her OT — something that would have been unthinkable twelve months ago. We are about to add play therapy, with the

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goal of helping her process her big feelings, address perfectionism and rejection sensitive dysphoria (RSD), and develop skills that allow her to tolerate and even embrace new challenges.

We are also working — under her OT’s guidance — toward introducing a support worker to attend her weekly gymnastics class with us. Gymnastics is currently the newest and most challenging activity in her routine. The goal of a support worker in that setting is not simply to keep her safe; it is to give me space to breathe, to regulate my own nervous system, and to trust that she is held by someone experienced — while she stretches to the outer edge of her comfort zone.

These are not luxury supports. They are carefully sequenced, clinically informed, and directly building my daughter’s capacity for a more independent life.

3. My Concerns About the Proposed Amendments

3a. Social and Community Participation Supports

Proposed reductions to social and community participation funding would be devastating for children like my daughter. Leaving the house, entering a new environment, attempting a new skill — these are not recreational activities. For a child with AuDHD and anxiety, each of these is a therapeutic act. Community participation, with the right support, is how she learns to function in the world.

Without supported community participation, my daughter will not build the skills, confidence or resilience she needs to eventually live more independently. She will not simply plateau — she may regress, becoming more withdrawn, more anxious, and more reliant on family support indefinitely. The cost of reducing her supports now will be paid many times over, in human and financial terms, across the decades of her life.

3b. ‘Reasonable and Necessary’ — Who Decides? I am deeply concerned about the vagueness of proposed changes to what constitutes a “reasonable and necessary” support. These decisions are already inconsistent and opaque. Adding further ambiguity, or shifting decision-making power away from participants and their treating professionals, will result in families like mine losing supports that are clinically justified and carefully planned.

Decisions about what supports are reasonable and necessary must remain grounded in clinical evidence, the participant’s individual circumstances, and the expertise of the allied health professionals working with them — not in generalised policy guidelines that cannot account for how differently disability presents across individuals.

3c. ‘Try All Appropriate Treatments First’

I am alarmed by the requirement that participants exhaust other treatments before accessing NDIS support. My immediate question is: appropriate according to whom? For neurodivergent children, the landscape of “treatments” is contested and often

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harmful. Applied Behaviour Analysis (ABA), for example, remains in widespread use despite significant evidence of psychological harm to autistic individuals. If “appropriate treatments” are not clearly and carefully defined — with input from the disability community — this clause could delay or deny support to children who need it now, while exposing them to interventions that cause harm.

Capacity building does not wait. My daughter is five. The neurodevelopmental window in early childhood is not one we can revisit once it has passed.

3d. NDIS as a Last Resort Positioning the NDIS as a “last resort” — only accessible after other government schemes have been exhausted — assumes that other schemes are adequate. They are not. Medicare’s Better Access mental health care plan provides ten rebated sessions per year. For a child with the level of need my daughter has, ten sessions is barely a beginning. For a family managing multiple neurodivergent members, often with one parent unable to work full-time due to caring responsibilities, the out-of pocket costs of private therapy are prohibitive.

The practical reality is starker still. Without NDIS funding, the Medicare-rebated alternative for occupational therapy is just up to five sessions per calendar year — and even with the rebate, the out-of-pocket gap remains significant. Five sessions is not a treatment plan. It is not enough to build the kind of consistent, trusting therapeutic relationship my daughter needs to make progress. And for a family already stretched across multiple members with support needs, five sessions means making an impossible choice: which family member gets help this year?

Parents are already sacrificing their own mental health care to prioritise their children’s. Making NDIS support conditional on first navigating a maze of other underfunded systems will not save money. It will push families to crisis point before help arrives.

3e. Functional Capacity Assessments

I am profoundly concerned about the use of functional capacity assessments as a gatekeeper for eligibility. For a child like my daughter, functional capacity is not a fixed state. It fluctuates — sometimes hour to hour.

Her capacity on any given day is shaped by:

• Whether she slept well the night before

• Whether she has recently added a new activity to her routine

• Whether she experienced a highly stimulating event — positive or negative — in the preceding days

• Whether I have been stressed, and therefore less able to provide the co- regulation she depends on during the 167 hours per week that fall outside her one-hour therapy session

A single snapshot assessment cannot capture this reality. A child who presents as calm and capable on the day of an assessment may be in crisis the following week. A child who masks successfully in a clinical setting may be dysregulated for days afterward from the effort of doing so. Basing eligibility on such assessments will

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exclude children whose need is real but whose presentation is inconsistent — and these are often the very children whose families are already stretched to breaking point.

3f. Greater Expectations on Families and Unpaid Carers A national survey of 10,000 Australian parents, reported by the ABC in May 2026, found that almost 60% are currently experiencing psychological distress. This is the baseline from which the government is proposing to ask families to do more. It is not a sustainable baseline. It is a crisis.

For carers of neurodivergent children specifically, the picture is even more acute. Curtin University-led research published in the Journal of Autism and Developmental Disorders (Milbourn et al., 2023) found that almost 80% of caregivers of neurodivergent children experienced poor wellbeing, high levels of stress and poor mental health. More than 22% experienced stigma from their local community, deepening social isolation. The study also found that caregivers faced significant obstacles to career progression and were frequently required to make personal sacrifices that affected their sense of identity. These are not abstract findings. They are my life, described in a research paper.

I want to be honest with this committee about what my life looks like — not for sympathy, but because I think it is important that decision-makers understand what they are asking when they expect families to absorb more.

I work from home while homeschooling my daughter, because school is not safe for her. I manage her sensory environment, her schedule, her transitions, her meltdowns, and her emotional world. I do this while being neurodivergent myself, with a history of postnatal depression, in a household that is loving and supported — and yet I am still, regularly, at the outer limit of what I can sustain.

Someone once described parenting a highly sensitive, neurodivergent child as growing an orchid. When every element of the environment is right — the light, the temperature, the water, the soil — they bloom. Brilliantly, beautifully. But if one element is off, you see it immediately. My entire life is organised around creating those conditions for my daughter. That is an extraordinary amount of invisible labour.

Without the NDIS supports we currently have in place, I do not know how I would continue without returning to depression. The support worker at gymnastics is not a luxury. It is the difference between me having one hour per fortnight to breathe — and not having that. The professional guidance of our OT is not supplementary. It is the framework that gives me confidence I am doing this right.

Carer burnout has consequences for the whole family. If I burn out, my daughter loses her primary carer, her home educator, and her co-regulator. The cost of my collapse — in crisis services, family breakdown, and long-term mental health support — would far exceed the cost of the supports we are asking for now.

3g. Home Educated Families and the ‘Thriving Kids’ Framework I understand there is a proposal to redirect certain supports into the school system under the Thriving Kids framework. For families like mine, this is not feasible. My daughter is home educated because school — as it is currently structured — is not a

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safe environment for her. School-based support is not an option we can access. If supports are moved into school settings, we will simply be excluded from them.

Home educating families with neurodivergent children are not edge cases. The data tells a clear and urgent story. Nationally, home education registrations are estimated to be around 92% higher in 2024 compared with 2020 — and Queensland, where we live, has seen the largest increase of any state, with registrations rising 163% since

2020. As of August 2025, 11,800 students were registered for home education in Queensland alone.

These families are not making a lifestyle choice. Research and community reporting consistently identify school refusal, neurodivergence, and disability as primary drivers. A 2022 Queensland home education insight report found that 61% of children in home education were identified as having a disability, with 46% of that group identified as neurodivergent. The Home Education Association has noted that anecdotally, disabled and neurodivergent students make up a sizeable and growing proportion of the home education community — yet data collection remains inadequate and government support almost non-existent.

The school refusal crisis driving many of these families out of the mainstream system is itself disproportionately a neurodivergent crisis. A peer-reviewed study by Connolly et al. (2023), titled “School distress and the school attendance crisis: a story dominated by neurodivergence and unmet need”, found that 92.1% of children experiencing school distress were neurodivergent, and 83.4% were autistic. The odds ratio of an autistic child experiencing school distress was 46.61 — a figure that should give this Committee pause. Clinically significant anxiety was present in 92.5% of cases, and in 94.3% of cases, school attendance problems were underpinned by significant emotional distress. These are not children choosing not to attend. These are children for whom school is a place of genuine suffering.

Critically, the same study found that despite these striking levels of distress and disability, parents reported a dearth of meaningful support for their children at school. This is the context in which the government is proposing to move NDIS supports into school settings. For families like mine, school has already failed. The support was not there when we needed it most — which is precisely why we are no longer in the system.

My daughter was four years old when she began crying in the night about not wanting to go back to school. Four. The distress was not occasional and it was not mild. It was a child whose nervous system was telling her, clearly and consistently, that the environment was not safe for her. During this time, she received no school based support. We were on the NDIS waitlist. The only professional help available to her was from the occupational therapist we sought out and funded ourselves — the same therapist who is now part of her NDIS-funded plan. The system that is now proposed as the alternative to NDIS funding had already failed her before that funding existed. The idea that supports could simply be redirected into a school setting she is no longer able to attend is not a solution. It is an erasure.

Any support framework that is conditional on school attendance, or delivered only through school settings, will exclude some of the most vulnerable and underserved families in Australia. These families are already outside the mainstream system because the mainstream system could not meet their children’s needs. Removing

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their access to NDIS supports will not bring these children back into schools. It will simply leave them — and their carers — without any support at all.

4. What I Want the Committee to Understand People who have not lived this life do not know what it sounds like when a child has a meltdown — not a tantrum, but a full neurological storm — in public, while strangers stare and judge, while you hold yourself steady because your own nervous system is flooding, because you know that your regulation is the only thing keeping her safe in that moment.

They do not know what it is to live on high alert — scanning constantly for mood shifts, preemptively managing every transition, preparing for every possible scenario, and doing all of this while also being a wife, a daughter, a sister, an employee, and a friend.

They do not know that when we received the call confirming our daughter’s NDIS approval, I cried — not because we had won something, but because for the first time I felt that I did not have to figure it all out alone. That the path we were on was validated and supported. That I could let go of some of the fear that I was failing her.

The NDIS, at its best, is not just a funding mechanism. It is a signal to families that their child’s life matters. That the community stands behind them. That they are not invisible.

These amendments risk withdrawing that signal — and doing so at exactly the moment when the cost-of-living crisis, rising rates of neurodivergent diagnoses, and chronic underfunding of school and mental health systems are placing Australian families under record pressure.

5. Recommendations I respectfully ask the Committee to:

• Reject any amendments that reduce or restrict social and community participation supports, which are central to building the long-term capacity of neurodivergent children.

• Ensure that “reasonable and necessary” determinations remain grounded in individual clinical assessment, made in partnership with treating allied health professionals — not determined by broad policy guidelines that cannot account for the complexity of individual presentations.

• Require that any “try all appropriate treatments first” provisions explicitly exclude harmful or discredited interventions, and that “appropriate” be defined in consultation with the disability community, not imposed by government.

• Reject the positioning of NDIS as a last resort until other government schemes — particularly mental health care plans — are genuinely adequately

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funded. Ten subsidised therapy sessions per year is not adequate for a child with complex needs.

• Ensure that functional capacity assessments account for the fluctuating nature of disability, particularly for neurodivergent individuals. A single-point-in-time assessment is not fit for purpose.

• Explicitly protect home educating families and those unable to access school- based settings. Any support framework that is embedded within school attendance will exclude some of the most vulnerable families in Australia.

• Recognise unpaid carers as a critical part of the NDIS ecosystem — and understand that when carer wellbeing is undermined by reducing participant supports, the entire system pays a greater cost downstream.

• Commit to a genuine no one size fits all approach. Disability is not uniform. Support needs are not uniform. Policy that treats them as such will fail the people it is designed to serve.

6. Conclusion I am not a policy expert. I am a mother doing her best for a child who experiences the world with extraordinary intensity — and who, with the right support, has the potential to flourish.

The NDIS, as it currently stands for our family, is working. It is early days, but the progress is real and measurable. My daughter is expanding her world, one small, supported step at a time. The proposed amendments risk halting that progress — not just for her, but for every family navigating a system that is already hard to access, hard to understand, and hard to fight.

I urge the Committee to listen carefully to the lived experience of participants, families, and carers before proceeding with these changes. We are not abstract line items in a budget. We are people — doing the hardest work of our lives — and we are asking to be seen.

Submitted in good faith by a Queensland mother and primary carer of an NDIS participant.

May 2026