NDIA Accountability Project

Addressing the impact of NDIS reforms on individuals with SATB2 Associated Syndrome

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Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

SATB2 CONNECT

SATB2 Gene Foundation Australia Limited ACNC Registered Charity | Volunteer-run | Est. 2021

COMMUNITY SUBMISSION

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Senate Community Affairs Legislation Committee Inquiry

Submitted by: Dalal Dawood Baumgartner, Founding Director SATB2 Gene Foundation Australia Limited (operating as SATB2 Connect) in conjunction with Genetic Alliance Australia May 2026

Executive Summary

This submission is made on behalf of SATB2 Connect (SATB2 Gene Foundation Australia Limited) and the Australian community of families living with SATB2 Associated Syndrome. It is submitted in response to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026, introduced to Parliament on 14 May 2026. This submission was prepared by Dalal Dawood Baumgartner with the assistance of Kate Alexander, Senior Lawyer. Both Dalal and Kate are parents of children with SATB2Associated Syndrome.

Note on timeframe

This submission was prepared in under two weeks following the Bill’s introduction. Our community is entirely volunteer-run, spread across Australia, New Zealand, Asia, and the Middle East. We have young children with high support needs, limited capacity for rapid policy response, and no funded advocacy staff. The timeframe given for community consultation on legislation of this significance is inadequate. We make this submission despite that, because our families cannot afford not to be heard.

Our position is direct. The proposed reforms are built around assumptions that do not hold for SATB2 Associated Syndrome, a rare genetic condition characterised by severe and permanent intellectual disability, absent or severely limited speech, significant behavioural complexity, and the complete absence of functional safety awareness. These are high-needs families. The people we represent are among the most complex presentations in the NDIS. Several provisions of the Bill will harm them; not because the reform’s goals are wrong, but because the mechanisms chosen are incompatible with the clinical and social reality of what SATB2 Associated Syndrome actually looks like.

Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

We are not asking the Committee to reject sustainability objectives. We are asking it to ensure the mechanisms chosen are fit for purpose when applied to a community that does not look like the disability the Bill was designed for.

Our specific concerns are:

  • An ‘appropriate treatment’ test that cannot function where no treatment exists, as is the case for the intellectual disability and communication impairment that are universal in SATB2 Associated Syndrome.
  • A ‘directly arising’ causation test that will generate disputes for a multisystem syndrome where every support need traces back through a complex, mediated pathway from a single genetic change.
  • A standardised eligibility assessment framework that does not calibrate assessment depth to the degree of clinical uncertainty — subjecting a child with a confirmed permanent genetic condition to the same full assessment process as a new applicant whose disability is in dispute. For conditions like SATB2 Associated Syndrome, confirmed by whole genome sequencing, the clinical uncertainty is zero. A proportionate, nested assessment model with explicit clinical override capacity is needed.
  • Standardised functional capacity assessments that will misread a condition where warmth and social engagement coexist with profound intellectual disability and no safety awareness.
  • Ministerial powers to cap community participation funding, which, for a person with no safety awareness, is not a lifestyle support. It is the only mechanism through which they can safely be in the world.
  • Caps on therapy intensity that would eliminate intensive block therapy programs; the approach that evidence supports as most effective for children with complex communication impairment.
  • Parental responsibility provisions that, without explicit benchmarking against what is ordinarily required for a child without disability, will reclassify disability support as parenting.
  • The loss of approved capital funding at plan renewal, which disproportionately harms families managing complex, time-sensitive assistive technology needs.

We make eight recommendations. We ask the Committee to act on them.

Who We Are

SATB2 Connect is an ACNC-registered charity established in 2021 by parents of children with SATB2 Associated Syndrome. We support families across Australia, New Zealand, Asia, and the Middle East. We are entirely volunteer-run. We have no paid staff, no policy team, and no funded advocacy capacity. This submission was prepared by a co-founder who is also a parent, a carer, and a researcher, working in the hours available after caring for her own child.

We have active research partnerships with university and hospital networks across Australia.

We contribute our community’s voice to research, policy, and system design, because no one else will.

This submission is made in conjunction with Genetic Alliance Australia, the national umbrella organisation for rare and genetic conditions. Genetic Alliance Australia has been a genuine ally to families like ours. Their work in the rare genetic space — bridging the gap between

Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

community experience and policy, supporting families to navigate systems that were not designed for rare conditions, and amplifying voices that would otherwise go unheard — is not only valued by our community. It is necessary. For a condition as rare and as poorly understood at a systems level as SATB2 Associated Syndrome, having an organisation with Genetic Alliance Australia’s reach and credibility advocate alongside us makes a material difference to whether our community is seen at all.

The families we represent are not at the mild end of the disability spectrum. Every person with SATB2 Associated Syndrome has intellectual disability, most commonly moderate to profound. Every person has speech delay or absent speech. Most are entirely nonverbal into adulthood. The behavioural and safety profile is significant and permanent. These are not families navigating a complex system for a manageable disability. They are families carrying one of the heaviest support loads in the country, often invisibly, and often alone.

2. SATB2 Associated Syndrome: What the Evidence Establishes

SATB2 Associated Syndrome was formally named as a clinical condition in 2014. It is caused by a de novo (new, not inherited) pathogenic variant in the SATB2 gene. It cannot be treated at source. There is no medication, surgical intervention, or program of treatment that reverses or alleviates the intellectual disability, communication impairment, or behavioural profile that define the condition.

Population studies place the incidence at 3.5–4.9 per 100,000 births. More than 500 individuals have been confirmed globally as of 2024; a figure that almost certainly undercounts the true population, given the complexity and recency of the diagnostic pathway.

The high-needs profile: what the research documents

  • Intellectual disability: universal and most commonly severe. All known individuals with SATB2 Associated Syndrome have intellectual disability. It ranges from mild to profound, but is most commonly moderate to profound. This is documented across every published cohort and clinical registry.

Zarate, Y. A., & Fish, J. L. (2017). SATB2-associated syndrome: Mechanisms, phenotype, and practical recommendations. American Journal of Medical Genetics Part A, 173(2), 327–337. https://doi.org/10.1002/ajmg.a.38022 | Zarate, Y. A., Bosanko, K., & Fish, J. (2024). SATB2-associated syndrome. In M. P. Adam et al. (Eds.), GeneReviews® [NBK458647]. University of Washington. https://www.ncbi.nlm.nih.gov/books/NBK458647/

  • Speech: absent or severely impaired in 100% of individuals. Speech delay or absent speech is documented in every person with SATB2 Associated Syndrome. A detailed clinical study of 23 individuals found all had severe receptive language delays. Among those with loss-of-function variants (the most common class): 62.5% were primarily nonverbal. Childhood apraxia of speech is the most prevalent speech condition. Communication function scores are consistently the lowest of all adaptive domains.

Snijders Blok, L., Goosen, Y. M., van Haaften, L., van Hulst, K., Fisher, S. E., Brunner, H. G., Egger, J. I. M., & Kleefstra, T. (2021). Speech-language profiles in the context of cognitive and adaptive functioning in SATB2-associated syndrome. Genes, Brain and Behavior, 20(7), e12761. https://doi.org/10.1111/gbb.12761

Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

Behaviours that challenge: high frequency, documented in published research.

  77%    42%     49%      48%
    aggression Shelley et al.,     self-injury Shelley et al.,     property destruction Shelley     hyperactivity Zarate et al.,
            2024                   2024                                  al., 2024                     2019

Shelly, L., Waite, J., Tarver, J., Oliver, C., Crawford, H., Richards, C., & Bissell, S. (2024). Behaviours that challenge in SATB2-associated syndrome: Correlates of self-injury, aggression and property destruction. Journal of Autism and Developmental Disorders, 54(11), 4179–4194. https://doi.org/10.1007/s10803-023-06123-2

Safety awareness:

permanently absent. A defining and clinically documented feature of SATB2 Associated Syndrome is the permanent absence of functional safety awareness. Individuals cannot reliably recognise danger near roads, water, heights, or in any unsupervised setting. This does not improve to a safe level with age or intervention. It is lifelong, and it determines everything about what safe community participation requires.

Dental and skeletal involvement: extensive.

Dental malformations are documented in up to 90% of individuals. Orofacial anomalies (cleft palate, high-arched palate, Robin sequence spectrum) affect approximately 50% and are associated with more severe language and feeding difficulties. Skeletal abnormalities, including decreased bone density and scoliosis, affect over 90%, with approximately one-third reporting fractures.

Kuo, B., Bolster, M. B., & Fan, W. (2025). The skeletal abnormalities and their clinical challenges in SATB2-associated syndrome. JBMR Plus, 9(4), ziaf023. https://doi.org/10.1093/jbmrpl/ziaf023 | Pullano, V., et al. (2025). Expanding clinical and genetic landscape of SATB2-associated syndrome. Genes, 16(10), 1229. https://doi.org/10.3390/genes16101229

Not progressive, but never simple.

sATB2 Associated Syndrome is not a degenerative condition. Individuals do not lose skills in the way some other rare genetic conditions involve. But the disability is permanent, complex, and high-needs from the beginning. What changes with sustained, intensive support is capacity: communication, safety, community engagement. That progress is real and hard-won. It requires years of appropriate, well- funded intervention to achieve.

Seizures affect a minority and are not the primary challenge.

Approximately 20% of individuals with SATB2 Associated Syndrome have clinically recognisable seizures. For our community, seizures are a feature for some, but they are not the defining challenge. The primary disability burden is carried by the intellectual disability, communication impairment, behavioural complexity, and permanent safety awareness deficit.

Zarate, Y. A., Bosanko, K., & Fish, J. (2024). SATB2-associated syndrome. In M. P. Adam et al. (Eds.), GeneReviews® [NBK458647]. University of Washington. https://www.ncbi.nlm.nih.gov/books/NBK458647/

The Australian picture:

evidence from our own community. The first Australian study of families living with SATB2 Associated Syndrome was published in 2025, co-designed with SATB2 Connect (Munro et al., 2025). Of 14 responding Australian families across five states and territories (rural and metropolitan): 100% reported challenges with communication and reasoning, 93% reported dental care challenges, and 86% reported behavioural challenges. Key therapy barriers included availability (64%), lack of access to multidisciplinary services (57%), and cost (43%). Educational barriers included lack of multidisciplinary services (60%)

Submission 1726

NDIS Amendment Bill 2026: Community Submission

and educators’ unfamiliarity with SATB2 Associated Syndrome (40%). Families reported unmet needs across therapy access, specialist practitioner availability, and social support. These findings are not abstract. They describe the specific barriers that the families in this submission navigate every day, and that the Bill’s reforms risk compounding. SATB2 Associated Syndrome is listed on the RARE Portal, Australia’s national rare disease information resource, which confirms there are no Australian clinical care guidelines for the condition, that diagnosis requires genetic testing and frequently involves chromosomal microarray followed by exome or genome sequencing, and that the multidisciplinary care team required spans general practice, paediatrics, genetics, neurology, cardiology, orthopaedics, dentistry, speech therapy, occupational therapy, physiotherapy, psychology and behavioural therapy, across a lifetime. The absence of clinical guidelines is itself a system failure. It means every clinician our families encounter is starting from scratch, and every family must become their own expert simply to access appropriate care. SATB2 Connect’s community-led research partnerships, documented through the Rare Voices Australia RArEST Project, demonstrate that small volunteer organisations working in the rare genetic space can and do produce meaningful evidence where none previously existed. That work should not have to be done by unpaid parents. But until the system invests in this community, it will be.

Munro, N., Abouharb, M., Dawood Baumgartner, D., Wilkes-Gillan, S., Parsons, D., Parsons, L., Strnadová, I., Palmer, E. E., & Chen, R. (2025). Exploring the health, education and social support needs of individuals diagnosed with SATB2 Associated Syndrome and their families living in Australia. Rare, 3, 1–14. https://doi.org/10.1016/j.rare.2025.100094 | Rare Voices Australia. (2024). Case study 4: SATB2 Connect. In Taking action together toolkit. https://rarevoices.org.au/taking-action-together-toolkit/section-2-case-studies/case-study-4-satb2-connect/ | Rare Voices Australia. (2025). SATB2 associated syndrome. RARE Portal. https://www.rareportal.org.au/rare-disease/satb2-associated-syndrome/

What this means for the Bill

There is no treatment for the primary impairments of SATB2 Associated Syndrome. The condition was named in 2014. Diagnosis frequently requires whole genome sequencing — often only accessible through a research program, not the standard clinical pathway; families may spend years under an incorrect or incomplete diagnosis. The evidence base is less than a decade deep. These facts are not incidental to the Bill’s provisions. They are the reason several provisions will not work as written when applied to this community.

3. The Current Challenges and How the Bill Makes Them Worse

Our families already navigate a system that does not understand SATB2 Associated Syndrome. Planners do not know the condition. Assessors have not seen it. The diagnostic complexity means some families spend years establishing eligibility. The high-needs profile means every plan cycle is a battle to maintain what should be obvious. The Bill, as drafted, does not fix those problems. It embeds new ones. This section names each relevant provision, identifies the current challenge our families face, and explains the specific risk the reform creates.

3.1 Appropriate treatment requirements (section 25A)

The Bill introduces a requirement that a person must have undertaken all ‘appropriate treatment’ (evidence-based treatment that could improve, reverse, or alleviate the impairment) before that impairment can be found permanent.

Submission 1726

NDIS Amendment Bill 2026: Community Submission

The current challenge. Families already face difficulty demonstrating permanence for a condition named in 2014 with a limited published evidence base. Planners and assessors unfamiliar with SATB2 Associated Syndrome sometimes question whether the intellectual disability or communication impairment is truly permanent, or whether more intervention might change the picture.

The Bill makes it worse. There is no treatment that reverses, alleviates, or materially improves the intellectual disability or communication impairment at the core of SATB2 Associated Syndrome. The framework’s premise, that permanence should be assessed against what treatment could achieve, assumes the existence of a treatment landscape that do not exist for this condition. What does exist is intensive early intervention to support development. But intervention to support a person with a permanent genetic disability is not the same as treatment that could alleviate that disability. Conflating the two will require families to demonstrate they have exhausted treatments that do not exist.

This is further compounded by the diagnostic complexity of SATB2 Associated Syndrome. Confirmed diagnosis frequently requires whole genome sequencing, often only accessible through a research program rather than the standard clinical pathway. A family whose child spent years under a global developmental delay or autism diagnosis before receiving a confirmed genetic result cannot produce the clean treatment-history the framework assumes.

The Bill also explicitly excludes financial and geographical access as relevant considerations. This directly disadvantages families in regional and rural areas, and those who could not access specialist genetic services within a reasonable timeframe, in ways inconsistent with the CRPD’s non-discrimination principle.

The reform:

The current challenge. Families already face difficulty demonstrating permanence for a condition named in 2014 with a limited published evidence base. Planners and assessors unfamiliar with SATB2 Associated Syndrome sometimes question whether the intellectual disability or communication impairment is truly permanent, or whether more intervention might change the picture.

Section 25A requires demonstration that all appropriate treatment has been tried before permanence is confirmed.

Risk for families living with SATB2 Associated Syndrome: Families living with SATB2 Associated Syndrome will be required to demonstrate they have attempted treatments that do not exist for the primary impairments of a condition first named in 2014. Diagnostic complexity means many families cannot produce the evidentiary trail the framework assumes. The framework will produce wrongful denials.

3.2 The ‘directly arising’ causation test (section 34(1)(aa))

The Bill narrows fundable supports to those where the eligible impairment is the ‘direct and immediate source, cause or origin’ of the support need.

The current challenge. Families already fight for individual supports that planners question (dental support, feeding therapy, sensory regulation, sleep intervention) because the connection between these needs and the core genetic condition is not intuitively obvious to someone who doesn’t know the condition.

The Bill makes it worse. SATB2 Associated Syndrome is a multisystem condition. A single genetic change produces intellectual disability, communication impairment, behavioural complexity, feeding difficulties, dental and palate anomalies, skeletal fragility, sleep dysregulation, and sensory differences. Each of these arises from the same source, but through complex, mediated pathways, not a single direct and immediate causal step. Zarate et al.’s 2023 quantitative morbidity analysis documents this across 15 distinct clinical domains.

Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

Under the ‘directly arising’ test, the Agency may challenge whether each of these downstream needs individually meets the direct causation threshold. Does dental support arise directly from the SATB2 variant, or from the palate anomaly the variant caused? Does feeding therapy arise directly, or through the oral motor impairment that flows from the genetic change? Each of these questions is a potential denial. For families stretched thin managing a complex system, this is not an administrative uncertainty. It is a mechanism for systematic exclusion.

Zarate, Y. A., et al. (2023). Quantitative phenotype morbidity description of SATB2-associated syndrome. BioMed Research International, 2023, Article 8200176. https://doi.org/10.1155/2023/8200176

The reform: Section 34(1)(aa) requires the eligible impairment to be the direct and immediate source of the support need.

Risk for families living with SATB2 Associated Syndrome: SATB2 Associated Syndrome produces a cascade of support needs through complex multisystem pathways. The ‘direct and immediate’ test is structurally incompatible with a syndrome defined by multisystem complexity. It will generate disputes about every downstream need — dental, feeding, sensory, skeletal, sleep; and produce denials based on interpretive technicality rather than clinical reality.

3.3 Functional capacity assessment

The Bill provides for new eligibility processes based on standardised assessment of functional capacity, informed by a Technical Advisory Group. That raises two related concerns for people with confirmed, permanent genetic conditions such as SATB2Associated Syndrome. First, as drafted, nothing in the Bill requires the depth of assessment to be calibrated to the degree of clinical uncertainty. Second, standardised tools may misread conditions whose observable presentation does not straightforwardly reflect the depth of underlying impairment.

The current challenge. Families already struggle when assessors unfamiliar with SATB2Associated Syndrome meet a child who is warm, socially engaged and visibly responsive, and then underestimate the depth of the intellectual disability, the permanence of the safety deficit, and the severity of the behavioural profile in other contexts. At the same time, families dealing with confirmed de novo genetic diagnoses face assessment processes that do not distinguish between cases where disability is clinically certain and cases where it is unclear or disputed. The result is a system that can both over-assess and mis-assess this community.

The Bill makes it worse. For a person with SATB2 Associated Syndrome, confirmed by genetic testing and documented in the published clinical literature as involving permanent moderate to profound intellectual disability, there is often no genuine clinical uncertainty about eligibility. A full standardised functional capacity assessment adds little to that evidentiary picture, but adds burden, distress and cost for families. The framework should instead adopt a nested approach (as occurs in aged care through the Integrated Assessment Tool), where diagnosis and permanence are already established, a shorter pathway should be available, with full assessment reserved for cases of real uncertainty.

Any such model must also preserve explicit clinical override capacity, allowing a suitably qualified clinician to attest to permanent eligibility where the participant’s presentation is clear but not readily captured by a standardised tool.

At the same time, standardised assessment instruments measure observable function at a point in time. They are not designed to capture the specific paradox of SATB2Associated Syndrome: individuals who present as warm and socially engaged, and who simultaneously

Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

have no safety awareness, severe to profound intellectual disability, and high-frequency aggression and self-injury. GeneReviews (2024) documents the characteristic jovial or friendly personality as a clinical feature of the condition. An assessor who is not familiar with SATB2 Associated Syndrome is likely to weigh that presentation heavily and underestimate everything underneath it. The same risk applies in reverse for communication. A child who uses an AAC device or eye gaze system is not a non-communicating child. But a standardised instrument not designed to capture AAC-mediated communication will not record their capacity accurately, and a plan built on that assessment will be inadequate from day one.

The reform:

Standardised functional capacity assessment will be used to determine support needs and NDIS eligibility.

Risk for families living with SATB2 Associated Syndrome:

Without mandatory clinical expertise in SATB2 Associated Syndrome, standardised assessments will systematically misread the condition in both directions: underestimating impairment due to the condition’s characteristic social warmth, and underestimating communicative capacity for nonverbal individuals who use AAC. Both errors produce inadequate plans.

3.4 Ministerial powers to cap community participation funding (section 34A) The Bill would allow the Minister to reduce funding for specified groups of supports across participant plans, without individual reassessment of need.

The current challenge.

Community participation funding is already inadequate for many families living with SATB2 Associated Syndrome. The absence of functional safety awareness means individuals cannot participate in community settings without one-to-one support. Many families report being unable to access mainstream community activities such as out-of-school hours care, recreational programs or sporting clubs, because services decline to include a non-verbal child with no safety awareness and high-frequency challenging behaviour, without funded support. The Bill makes it worse. Community participation funding is not a lifestyle extra for individuals with SATB2 Associated Syndrome. It is a direct safety requirement. A person with no safety awareness cannot be in a community setting (a park, a birthday party, a family gathering, a shopping centre) without one-to-one support by someone who understands their profile. This is not a preference. It is the clinical consequence of a permanent, documented cognitive deficit. The research also documents the paradox at the heart of community access for this group: individuals with SATB2 Associated Syndrome often have a strong social drive and genuine pleasure in community settings. The condition simultaneously creates the desire for inclusion and removes the capacity for safe independent participation. Ministerially capping the funding that resolves that paradox, without individual assessment, clinical evidence or merits review, will reduce or eliminate community access for families who cannot self-fund the gap.

The reform:

Section 34A allows the Minister to reduce community participation funding across groups of participants without reassessment.

Risk for families living with SATB2 Associated Syndrome:

For individuals with SATB2 Associated Syndrome, community participation funding is not a quality-of-life extra. It is a safety requirement driven by the permanent absence of functional safety awareness, a clinically documented feature of

Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

the condition. A ministerial cap without individual assessment is not a sustainability measure. It is the elimination of the mechanism through which these individuals can safely be part of the world.

3.5 Ministerial powers to cap therapy intensity (section 33(2EA))

The Bill would allow the Minister to determine maximum funding levels for specified supports, including therapy intensity.

The current challenge. Families living with SATB2 Associated Syndrome already fight to access intensive block therapy programs, such as NAPA (Neurological and Physical Abilitation) that deliver three to four weeks of concentrated, multidisciplinary therapy at a frequency that weekly sessions cannot replicate. These programs are where the developmental gains that change a child’s trajectory happen. Accessing NDIS funding for them requires sustained advocacy and is regularly challenged.

The Bill makes it worse. The research on intensive block therapy for children with complex communication and neurodevelopmental profiles demonstrates that concentrated, high-frequency, multi-disciplinary intervention produces gains that weekly sessions spread across a year cannot reliably replicate. For nonverbal children, speech and language gains in particular depend on sustained, intensive input. Snijders Blok et al. (2021) emphasise that intervention intensity must match the severity and type of the communication impairment. A ministerial determination capping therapy at a fixed annual hours threshold would eliminate the intensive block model entirely. This is not a reduction in service. For a child whose most significant developmental progress comes through a three-week intensive program, it is the elimination of the approach that works.

Snijders Blok, L., Goosen, Y. M., van Haaften, L., van Hulst, K., Fisher, S. E., Brunner, H. G., Egger, J. I. M., & Kleefstra, T. (2021). Speech-language profiles in the context of cognitive and adaptive functioning in SATB2-associated syndrome. Genes, Brain and Behavior, 20(7), e12761. https://doi.org/10.1111/gbb.12761

The reform: Section 33(2EA) allows the Minister to cap funding levels for specified supports including therapy.

Risk for families living with SATB2 Associated Syndrome: An hours-based cap on therapy intensity would eliminate the intensive block therapy model — the evidence-based approach for children with complex communication impairment. For families living with SATB2 Associated Syndrome, this is not a cost reduction. It is the removal of the intervention that produces developmental progress.

3.6 Parental responsibility provisions (sections 34(1G) and 34(1H))

Sections 34(1G) and 34(1H) do not define parental responsibilit establish a presumption that parents are responsible for providing “substantial care and support”, including supervision, personal care, transport, emotional support, behavioural support, and other assistance with activities of daily living that would reasonably be expected of a parent of a child of the same age without disability. The CEO must not approve a support if its primary purpose is to reduce parental burden below what is reasonably expected.

The current challenge. Families already navigate planning processes where the intensity of their caring role is minimised or misunderstood. What is described as ‘parenting’ in a plan review is, for a family living with SATB2 Associated Syndrome, something qualitatively and quantitatively different from any ordinary parenting experience.

Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

The Bill makes it worse. The benchmark of ‘a child of the same age without disability’ sounds fair. But the risk is that it is applied at the level of category, not intensity. Every category the Bill lists — supervision, personal care, transport, emotional support, behavioural support, activities of daily living — describes something that all children need in some form. Applied at the category level, the benchmark would treat all of these as parental responsibility for children with SATB2 Associated Syndrome, because typical children also require them. That reading ignores entirely what these categories actually require in practice for a child with this profile. Consider each category in turn, with reference to the allied health and support worker framework that underpins each. Speech pathology sits beneath all of them: for a nonverbal child, every support category requires communication strategies developed by a speech pathologist and implemented consistently by a trained support worker. This is not incidental. It is the clinical architecture through which all other supports function. Supervision. All primary school children need supervision. But supervising a child with SATB2 Associated Syndrome who has no safety awareness requires continuous active physical interception by someone with specific knowledge of that child’s profile, movement patterns, speed, and triggers. Taking a child with SATB2 to a park, a beach, or anywhere near a road or water is like being a goalkeeper: the support worker must position themselves between the child and every safety hazard, continuously, without a break. This is not supervision. It is skilled, knowledgeable support work, following a safety plan developed by behavior support practitioner or an occupational therapist, implemented by a trained support worker. A parent alone cannot do this safely and simultaneously supervise another child or attend to anything else. Furthermore, the majority of mainstream care services that provide supervision for children – out of school hours care (OOSH and vacation care), camps, and extracurricular activities are either unsuitable for children with SATB2 Associated Syndrome, or the risk is too high for services to accept their enrolment. Support in the community in these circumstances is not a parental preference for funded support. It is not improved household efficiency. It is not reducing parental burden below what any parent could reasonably be expected to bear. It is the only mechanism by which this child can access the community along with other children of their age. It is also, for many, the only available option for the parent to continue working during the 12 weeks of school holidays and outside of school hours. Funding this support is not a substitute for parental care — it is what inclusion looks like for a child with no safety awareness in a mainstream setting. Personal care. All young children need personal care. But personal care for a child with SATB2 Associated Syndrome involves occupational therapy assessment of positioning, technique and equipment, speech pathology input on how to communicate each step of the process to a nonverbal child to reduce distress, and consistent implementation by a trained support worker who follows that plan. Toilet training — a core personal care goal — requires OT and speech pathology input, patience, repetition, and the cognitive and emotional space to stay calm through setbacks over years. For a family without support, there is no capacity to begin. For a child with SATB2, this is not a milestone that passes. As the child grows, personal care becomes physically more demanding: two adults are required for many tasks, and physical injury to carers is documented. This is not parenting as ordinarily understood for a child of the same age without disability. It is clinical care planning and coordinated implementation. Transport. A child with SATB2 Associated Syndrome can travel in a car. What they cannot do is use public transport independently, catch a school bus, or travel without a second person managing safety and behaviour. As an adult, this remains true. The transport need is not a temporary parenting responsibility that diminishes as the child grows toward

Submission 1726

SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

Independence. It is a permanent funded support need. Categorising it as parental responsibility because all children need transport does not reflect this reality.

Emotional support. All children need emotional support from parents. But for a child with SATB2 Associated Syndrome, emotional regulation requires strategies developed by a speech pathologist and occupational therapist — because emotional regulation and communication are inseparable for a nonverbal child, and children with SATB2 often have significant sensory profiles. What looks like emotional support is the consistent application of a clinically developed regulation framework. Parental warmth and love, however genuine, cannot substitute for this.

Behavioural support. This is the most dangerous category. The Bill explicitly lists behavioural support as a parental responsibility category. For a child with SATB2 Associated Syndrome, behaviour support often involves a registered NDIS behaviour support practitioner developing a formal behaviour support plan, restrictive practice authorisation, and trained support workers implementing that plan consistently. There are layers of assessing and ensuring sensory input, and helping the child communicate their needs. Reclassifying it as parental responsibility does not reduce the behaviour support need. It removes the funded clinical framework through which that need is safely managed, leaving families to absorb a care load the evidence base shows cannot be safely managed without professional input. The research documents aggression in 77% of individuals, self-injury in 42%, and property destruction in 49% (Shelley et al., 2024). These are not behaviours that parental love and attention resolve.

The growing child. The parental responsibility framework must also account for the trajectory of a growing child with SATB2 Associated Syndrome. The gap between ordinary parental responsibility and disability-related support need does not close as the child ages. It widens. A nonverbal five-year-old requires intensive support. A nonverbal fifteen-year-old who is faster, stronger and physically larger, with the same absence of safety awareness and the same behavioural profile, requires more intensive support and causes documented physical injury to carers providing it without assistance.

The capacity argument. Funded support does not replace parental responsibility. It creates the conditions in which parental responsibility can be exercised more effectively. When a family has adequate support worker hours, they have the cognitive and emotional space to pursue developmental goals that require years of sustained effort — toilet training being the clearest example — that simply cannot be attempted when every moment of capacity is consumed by immediate care demands. This is not a theoretical point. It is the lived experience of families in this community. Adequate funded support today reduces the intensity of care needs 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 broader consequence. When funded supports are reduced and families absorb the gap, the trajectory is predictable. Carer burden increases. Physical injury follows. Research using nationally representative data finds that being a main carer reduces the probability of employment by around 12 percentage points, and that full-time carers are significantly less likely to have household incomes above $70,000 (PMC, 2014). When carers leave the workforce because supports are cut, the economic consequences extend beyond the family: tax revenue is lost, carer payments and other welfare payments increase, and health system demand grows. The NDIS was explicitly designed to enable carers to remain in the workforce. Cutting supports through the parental responsibility provisions reverses those gains and relocates the cost to other systems, often at higher total expense.

Submission 1726

NDIS Amendment Bill 2026: Community Submission

The reform:

Sections 34(1G) and 34(1H) establish a presumption of parental responsibility for substantial care and support of children across six named categories.

Risk for families living with SATB2 Associated Syndrome:

The six categories use ordinary language that describes things all children need in some form. Applied at the category level rather than the level of intensity, skill requirement, and clinical complexity, the benchmark will reclassify disability-specific support as ordinary parenting. Supervision, personal care, transport, emotional support, behavioural support and activities of daily living for a child with SATB2 Associated Syndrome are not what those words mean for a child without disability. Each requires a clinical framework developed by allied health professionals - occupational therapists, speech pathologists, behaviour support practitioners and implemented consistently by trained support workers. That is not parenting. It is coordinated, multi-disciplinary clinical plan implementation. The benchmark must operate at the level of intensity and clinical complexity, not category label.

3.7 Restriction of reassessments and loss of capital funding at plan renewal

The Bill narrows the circumstances for unscheduled reassessment and removes rollover of unspent capital funding at plan renewal.

The current challenge.

Families living with SATB2 Associated Syndrome regularly need to request mid-cycle reassessments as their child’s needs evolve: new communication needs, new behaviours, equipment needs identified through therapy. Accessing reassessment is already difficult. Capital funding for assistive technology, particularly AAC devices (central to the communication of nonverbal individuals), is already subject to long procurement lead times. The Bill makes it worse. Restricting reassessment access will trap families in plans that no longer reflect their child’s needs. Removing capital funding rollover will mean that families whose AAC device or other assistive technology is approved but not yet delivered at plan renewal, due to supply chain delays, assessment waiting periods or provider availability, will lose that funding and be required to start the process again. For a nonverbal child, the loss of an approved communication device is not an inconvenience. It is a direct reduction in their capacity to communicate.

The reform:

Reassessment criteria are narrowed; capital funding does not roll over at plan renewal.

Risk for families living with SATB2 Associated Syndrome:

Families living with SATB2 Associated Syndrome will be trapped in plans that no longer reflect their child’s needs. AAC and other assistive technology funding approved but not yet expended, due to factors outside families’ control, will be lost at plan renewal. The child pays the cost.

4. Our Community’s Voice

The following accounts are drawn from families living with SATB2 Associated Syndrome in Australia. They are not edge cases. They are the experience of our community, stated in the ordinary language of people who get up every day, navigate a system not built for them, and do not stop.

Charlie — aged 5, New South Wales Charlie started school this year. He has SATB2 Associated Syndrome, confirmed just before his fourth birthday, after a diagnostic journey included required chromosomal microarray,

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karyotype analysis, condition-specific testing, and ultimately whole genome sequencing through a research program. Before that confirmation, he had a global developmental delay diagnosis.

Charlie is nonverbal. He has no safety awareness. He requires one-to-one support in every community setting. He attends a School for Special Purposes. He cannot be enrolled in out-of-school hours care; multiple services have declined his inclusion because of the risks associated with absconding and his personal care needs. His support worker takes him to the space where after-school care happens, so he can run alongside his seven-year-old sister and her friends.

His community participation funding (received only since November 2025) means he can maintain friendships built at preschool. It means he can attend family gatherings, go to parks and birthday parties, be part of the community he lives in. It means his mother, who is a single parent and a lawyer, can work.

Kate, Charlie’s mother “A ministerial determination cutting community participation funding would not be a policy adjustment for Charlie. It would end the only pathway through which he can be part of his community. He is very social and loves to play alongside other kids. The repercussions of cutting his community participation supports are far reaching for our family.”

Under the Bill as drafted, Charlie’s family faces: the appropriate treatment test applied to a condition with no treatable primary impairment; the directly arising test applied to a cascade multisystem syndrome; standardised assessment that may record his warmth without capturing his safety deficit; potential caps on intensive therapy programs; potential reductions to community participation funding; and the loss of approved AT funding if supply delays push delivery past plan renewal. Charlie’s story has been shared with his mother’s consent.

Naomi — aged 12, New South Wales Naomi is 12 years old. She has SATB2 Associated Syndrome, caused by a de novo 4.37 chromosomal deletion on chromosome 2q33.1 encompassing the SATB2 gene and 102 other genes. She is nonverbal and communicates through AUSLAN, key word signing and a communication app on her iPad. She attends St Lucy’s School for students with intellectual disability in Wahroonga. She has an infectious laugh. She loves frogs, the colour yellow, music, dancing, and scanning items at the supermarket. She is, by every account of everyone who knows her, a little bit bossy, and entirely herself.

Naomi’s diagnoses extend well beyond the genetic condition at their source: moderate intellectual disability, Autism Spectrum Disorder (Level 3), ADHD, anxiety, cerebral palsy (GMFCS II-III), dyspraxia, eosinophilic oesophagitis, cleft palate (repaired), silent aspiration, complex dental disease, hearing loss, urinary and faecal incontinence, sleep onset and maintenance difficulties, scoliosis, low bone density, unexplained joint pain, and recurrent respiratory infections. She is under the care of more than fifteen specialist clinicians. She takes seven medications daily.

Naomi requires one-to-one support for every aspect of her daily life. She cannot be left unsupervised. She requires full personal care: showering, dressing, toileting and feeding. She is at risk of choking and silent aspiration at every meal, and requires focused supervision at all times when eating. She absconds without warning and has no road safety

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awareness. Her adaptive stroller is a safety device; when it broke and awaited repair, the family could not leave the house.

Naomi is 12. She is growing. Her body is changing. Her care needs, already significant, are intensifying in ways that track her physical development, not her disability profile alone; her parents are now managing the personal care of a young adolescent whose strength, size, and physical presence increases year on year, while her support requirements remain. This is not what caring for a typically developing 12-year-old looks like. It requires two adults for many tasks. It has caused repetitive physical injury; her mother has sustained a locked neck, shoulder injury and chronic back pain. Her father reports the same.

A formal behaviour support assessment completed by a registered psychologist in August 2024, using standardised instruments including the Developmental Behaviour Checklist, the Achenbach Child Behaviour Checklist, the Adaptive Behaviour Assessment System and the Caregiver Burden Scale, found Naomi’s behavioural functioning in the Serious Concern range across every subscale at home and at school. Her adaptive functioning was rated Extremely Low across every domain. Her mother’s caregiver burden was assessed at Severe. Her father’s at Moderate to Severe. Both parents reported chronic physical injury, mental health deterioration, social isolation, and fear that they would not be able to continue to provide care. The practitioner identified relinquishment of care as a real and foreseeable isk.

That report was written to support an urgent mid-cycle NDIS review, because the funding in Naomi’s plan was inadequate for her actual support needs. Under the Bill’s proposed restrictions on participant-requested reassessments, accessing that review would have been harder, not easier.

The review resulted in modestly improved support worker hours. That improvement, while still far from adequate, has made a concrete and measurable difference. With two hours of support worker time on a small number of days each week, Naomi has begun independently communicating her needs and wants through AUSLAN and her communication device. This is not a minor milestone. For a nonverbal young person who has spent years being spoken for rather than heard, the ability to initiate communication is transformative. It is also entirely conditional on the supports being in place. Remove or reduce those hours, and that progress stalls. This is precisely the investment in early, intensive, sustained support that the Bill’s proposed caps and ministerial powers would put at risk.

Naomi’s communication device is currently undergoing its third round of NDIA review. Despite extensive evidence provided by multiple practitioners across speech pathology, ocupational therapy and her specialist medical team, the NDIA has not approved the device. Three rounds of review. Multiple clinicians. Hundreds of pages of supporting evidence. And still no outcome. The NDIA, in practical effect, has taken away Naomi’s voice.

For the Committee’s consideration: this is what the current system does to a family with the knowledge, capacity and resources to mount a sustained clinical case. For families without those resources, the outcome is simply silence.

The same pattern played out with Naomi’s wheelchair. It took approximately two years from initial request to approval. During that time, Naomi was without appropriate mobility support. She fell repeatedly, sustaining injuries. Her mobility regressed. The family was severely restricted in their ability to go out together; outings that would have been manageable with appropriate equipment became unsafe and were abandoned. The physical toll on both parents, who were supporting Naomi’s mobility without aids, worsened the injuries already documented in the behaviour support report. The psychological toll of watching their daughter’s function decline while fighting an administrative process is not something that appears in any cost-benefit analysis, but it is real, and it has lasting consequences.

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Naomi also has a younger sister, Esther, who is herself on the NDIS and has her own diagnosed support needs. The family is navigating two complex NDS plans simultaneously, with no funded coordination support proportionate to that complexity. When Naomi’s needs escalate, Esther’s needs go unmet. When Naomi’s plan review requires attention, Esther’s therapies get deprioritised. This is not a family management issue. It is the foreseeable consequence of designing a system that assesses individuals in isolation and does not account for the cumulative reality of families where more than one person has complex disability support needs.

Dalal, Naomi’s mother and SATB2 Connect Founding Director “Every year, the NDIS process asks us to sit down and catalogue everything Naomi cannot do. Every deficit. Every limitation. Everything the system needs to see to justify continued funding. I want the Committee to understand what that costs — not just in time and paperwork, but in what it does to a family to be required, year after year, to see their child only through the lens of what she cannot do yet. Naomi is not a list of inabilities. She is a person. She has things to offer when she is given the right support to access them. The system we are fighting to protect should be built on that understanding — not on annual rehearsals of incapacity.” “We are not just parents. We are running an organisation, bridging the gap between the health system, the disability system, and the families who fall through both. That work is unpaid and unrecognised. We do it alongside managing our own health. I have my own health conditions and carry them alongside Naomi’s. The assumption that we can simply be asked to do more, or that parental responsibility covers what we are already doing, does not reflect the reality of our lives.”

Naomi’s account is not a worst case. It is the documented, clinically assessed, formally reported reality of SATB2 Associated Syndrome at age 12, when it is being supported, imperfectly but actively. It is also what it will look like at 22 and at 42. Planning for Naomi’s supported living as an adult is not a distant concern for her family; it is a present one, because the trajectory of a growing body and a permanent, complex disability makes it a question they cannot defer. Naomi’s story is shared with the consent of her parents, Dalal and Ivan Baumgartner.

Rachael — Aged 38, New South Wales

Rachael is a 38-year-old woman with SATB2 Associated Syndrome living in supported accommodation in Albury, NSW. She grew up on a family farm 110km west of Albury and has two younger sisters who now live in Melbourne. She has severe intellectual disability and is non-verbal, communicating through Key Word Signs, gestures, and an AAC device. She lives in a group home with four housemates and 24-hour support, attending day activities five days a week as well as sporting and social activities on weekends.

Rachael’s story illustrates what the NDIS was designed to deliver — and what is now at risk. Since the NDS rolled out in her region, her parents and guardians have been able to plan activities she enjoys and have meaningful input into her living arrangements. “This is so much better than when we were told ‘this is where you can now live and with whom’” when services were run by the State.

As Rachael has aged, her informal support network has steadily contracted. Her grandparents have passed away. Her sisters moved to Melbourne for education and work. Aunts, uncles and family friends have drifted away or are managing their own health challenges. Rachael now relies almost entirely on paid support staff for the life she deserves.

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Therapy remains essential. Speech pathology extends her use of Key Word Signs and her AAC device, and supports the constant stream of new staff to communicate with her effectively. Physiotherapy keeps her mobile. Occupational therapy builds her daily living skills. But finding therapists who will work in regional NSW is an ongoing struggle. On one occasion, Rachael went more than 12 months without accessing her allocated therapy hours due to provider unavailability, and then had those hours cut from her plan without any consultation, despite the need remaining. This is exactly the consequence the Bill’s plan renewal provisions will entrench: funding approved for a genuine need, lost because supply chain and workforce constraints made it impossible to use in time.

If community participation hours were cut, Rachael would lose the activities she loves and the friendships she has built. She would spend more time at home, in a household where her housemates are significantly older and some are developing dementia. Her world would narrow. Her parents are clear about what would follow: increased frustration and escalating behavioural issues. For Rachael, community participation is not supplementary. It is what gives her life meaning and structure.

Kathryn, Rachael’s mum “Policy makers need to consider the personal story and not just assess people based on a formula from diagnosis or IQ level. There must always be an opportunity to discuss the person’s needs and how these can best be met. Remember the people using the NDIS are people, not pieces of machinery.”\n Rachael’s story has been shared with her mother’s consent.

Henry — Aged 13, New South Wales

Henry is 13 years old and lives in Randwick, Sydney with his mother Jo and three siblings. He attends a school for students with disability, and his weekly supports include occupational therapy, speech pathology, music therapy and gym training. On Saturdays he goes out with his carer, and he attends camps during school holidays. Henry loves basketball, skiing, surfing and school sports.

Jo is a single mother with four children and full financial responsibility for her family. She describes the experience of managing inadequate supports while parenting four children as exhausting. “What we don’t get support with, I am having to make up for myself. Spreading yourself across four is exhausting ensuring they are all treated the same.”

The NDIS has already begun to narrow Henry’s life. Overnight camps have been cut, limiting his opportunity to develop independence and community connection outside the home. Surfing has been denied, not as a recreational activity, but as a deliberate therapeutic choice to develop situational awareness in the water, a safety skill of particular importance for a young person with SATB2 Associated Syndrome. Speech pathology and occupational therapy have been capped. Jo fought hard to have speech reinstated.

Henry is turning 14. His social needs are increasing as he moves into adolescence, and Jo is beginning to plan his pathway toward employment. The support he receives now is not just about his current wellbeing, it is building the skills and community connections that will shape his adult life. Capping therapy and cutting community participation at this stage does not save money. It removes the developmental scaffolding at the moment it is most needed.

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Jo, Henry’s mum “Policies are never suited to a group. They need to be individualised. It is awful to keep being told no when we have supporting genetic documents to explain what our children’s capabilities are.” “Parents and carers looking after our children live in a constant state of grief which changes with each situation.”

“Just because our children are disabled doesn’t mean they always have to hang out with other disabled people. This requires a strong sense of empathy from the community.”

Henry’s story has been shared with his mother’s consent.

These are not extraordinary stories. They are the ordinary lives of families in our community. The Bill, as drafted, threatens each of them; not through malice, but through design choices that did not account for what SATB2 Associated Syndrome actually requires.

5. Sustainability Requires Looking at the Full Ledger

This Bill is presented as a sustainability measure. The Committee should be satisfied that the mechanisms chosen will actually produce sustainable outcomes, not simply shift costs from the NDIS onto families, healthcare systems, and crisis services. We are not satisfied. And we want to explain why, in plain terms.

5.1 Children grow. Their needs do not diminish.

Naomi is 12. Charlie is 5. The children in our community are not static. They grow physically in size, strength and complexity of their personal care, while their disability profile remains. The supports that a family can manage when a child is five become physically impossible without funded assistance by the time that child is a teenager. This is not a failure of parenting. It is the biology of a growing body meeting the permanence of a complex genetic disability. The parental responsibility provisions in the Bill do not account for this trajectory. A framework that benchmarks parental responsibility against what is ordinarily expected for a child of the same age without disability must also grapple with the fact that, as children with SATB2 Associated Syndrome grow, the gap between ordinary parental responsibility and disability-related care need widens; it does not close. Reducing supports for a growing child with complex needs does not reduce the care load. It transfers it entirely onto parents whose bodies are already bearing the physical cost. Planning for supported living arrangements for adults with SATB2 Associated Syndrome is not a distant concern for our families. It is a present one. The NDIS, at its best, is the system that plans for that transition, investing early so that the crisis of an adult with unmet complex needs, and aging parents who can no longer provide physical care, does not overwhelm every system at once. Cutting current funding does not delay that need. It accelerates the crisis that makes emergency intervention unavoidable.

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SATB2 Connect | NDIS Amendment Bill 2026: Community Submission

Every year, families living with SATB2 Associated Syndrome are required to document everything their child cannot do. Every functional limitation. Every deficit. Every inability the system needs to see in order to justify continued funding. This is how the NDIS currently works, and the Bill, in its current form, intensifies rather than reforms that dynamic.

Language matters. The difference between ‘cannot cross the road safely’ and ‘has not yet developed road safety awareness with the supports currently available’ is not a cosmetic one. It is the difference between a planning framework that sees a person’s trajectory and one that catalogues their incapacity. The annual rehearsal of deficit, repeated across every plan cycle and every supporting report, accumulates. It shapes how families see their children. It shapes how professionals see them. It shapes, over time, how people with disability come to see themselves.

We are asking the Committee to consider whether a genuinely reformed NDS planning framework could be built on strengths-based, person-first language, not as a surface change but as a structural one. The goal of the scheme is to fund the supports that allow people with disability to live good lives and contribute to their communities. The language and design of the framework should reflect that goal, not undermine it.

5.3 The families running these organisations are also people — and the costs are system-wide

SATB2 Connect is run entirely by volunteers, most of them parents of children with SATB2 Associated Syndrome. We bridge the gap between the health system, the disability system, the research community, and the families who fall between all of them. We prepare submissions like this one in the hours between caring for our children, managing specialist appointments, navigating plan reviews, and sustaining our own health as best we can.

Many of us live with our own health conditions: invisible disabilities, chronic illness and the cumulative physical consequences of years of high-intensity caring. We are not simply carers. We are people managing complex lives, often without the recognition that would allow us to do so sustainably. When the government speaks of reducing the burden on families, the burden being reduced is rarely the one we are actually carrying.

The economic cost of inadequate disability support is not invisible, even when it is unmeasured. Research consistently demonstrates that people with disability, given appropriate support, make meaningful contributions to the workforce, the economy and their communities. Investment in disability support produces economic returns through workforce participation by both the person with disability and of the family members who can work when care is funded, and through reduced demand on health, housing, and crisis services.

When a primary carer cannot work because NDIS funding is inadequate, that is a workforce loss. When a parent sustains chronic physical injury from caring without support and requires ongoing medical treatment, that is a health system cost. When a family reaches the point, documented formally by a registered practitioner, where relinquishment of care is a real and foreseeable risk, the cost of the crisis that follows is borne by every system simultaneously.

Reducing NDIS expenditure through the mechanisms in this Bill does not eliminate these costs. It relocates them to families, hospitals, crisis accommodation and emergency services, and it compounds them. We ask the Committee to require that the Bill’s long-term impact on total system costs, not just forward NDIS estimates, be assessed before it proceeds. We also ask that the people who run organisations like ours, who hold the community together in the gaps between systems, be recognised not just as advocates but as people whose sustainability also matters to the scheme’s long-term success.

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SATB2 Connect | NDS Amendment Bill 2026: Community Submission

6. Recommendations

SATB2 Connect makes the following recommendations to the Senate Community Affairs Legislation Committee:

  • Recommendation 1: Amend section 25A to provide that where a suitably qualified clinician attests that no evidence-based treatment exists to reverse or alleviate the primary impairment of a permanent disability, no further demonstration of attempted treatment be required.

This is particularly relevant for rare and recently named genetic conditions where the evidence base is still developing, and where the diagnostic pathway frequently involves whole genome sequencing rather than standard clinical testing.

  • Recommendation 1A: The Bill, or the NDIS rules made under proposed section 9B, explicitly provide for a proportionate, light-touch confirmation pathway for participants whose disability is severe, permanent and beyond reasonable clinical dispute. SATB2 Connect recommends the nested assessment model in section 62-5 of the Aged Care Rules 2025 (the Integrated Assessment Tool) as the legislative template for this approach. Assessment depth should be calibrated to the degree of genuine clinical uncertainty: where a confirmed permanent genetic condition places continued eligibility beyond reasonable clinical dispute, a suitably qualified clinician should be able to attest to this without the participant undergoing a full standardized functional capacity assessment.

Any nested model must explicitly preserve clinical override capacity, allowing a qualified clinician to override an algorithmically generated outcome where it does not reflect the participant’s actual presentation. This is essential for rare and recently named conditions where the algorithmic rules may not yet be designed to recognize the specific clinical profile.

  • Recommendation 2: Reinstate financial and geographical access to specialist genetic services as relevant considerations within the ‘appropriate treatment’ framework, consistent with the CRPD principle of non-discrimination.

  • Recommendation 3: Amend the ‘directly arising’ test in section 34(1)(aa) to clarify that downstream support needs arising from the multisystem clinical presentation of a genetic syndrome are not excluded from NDIS funding, and that holistic clinical assessment (not linear causation tracing) is the basis for support determination for conditions with multisystem profiles.

  • Recommendation 4: Require that the Technical Advisory Group overseeing standardised functional capacity assessment include clinical expertise in rare and recently named genetic conditions, conditions with multisystem profiles, and conditions where social presentation may systematically mask the depth of underlying impairment. Assessment instruments must be validated across the full range of conditions they will be applied to, not only the most common presentations in the Scheme.

  • Recommendation 5: That the Bill include an individual exemption mechanism allowing a participant to apply to the NDIA for an exemption from any categorical cap under section 34A or

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section 33(2EA) 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.

Any determination reducing funding must have regard to Australia’s obligations under Article 19 of the CRPD and to individual safety profiles before taking effect.

Recommendation 6: Before any ministerial determination takes effect under Section 34A or Section 33(2EA), the reasoning and clinical evidence underpinning it should be publicly available, and the determination should be subject to meaningful Parliamentary scrutiny.

[Families and participants cannot assess whether a determination is justified, or challenge it, if the basis for it is not visible. For a community like ours, where every support category is essential and none is discretionary, transparency is not a procedural nicety. It is the minimum condition for trust in the system.]

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We recognise that the NDIS faces real sustainability challenges and that reform is necessary. We are not asking the Committee to abandon that project. We are asking it to ensure that the mechanisms chosen are fit for purpose when applied to a community whose disability does not look like the disability the Bill was designed for.

SATB2 Associated Syndrome was formally named eleven years ago. Our families have been building an evidence base, a community, and an advocacy voice in the time since. We have prepared this submission in under two weeks, in the gaps between caring for our children. We do so alongside Genetic Alliance Australia, whose support and partnership in the rare genetic space means that submissions like this one reach the right people at the right time. We are asking the Committee to hear it.

Sincerely,

Dalal Dawood Baumgartner Founding Director SATB2 Connect May 2026

SATB2 Gene Foundation Australia Limited | May 2026 SATB2 Connect, May 2026

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NDIS Amendment Bill 2026: Community Submission

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  • Zarate, Y. A., Bosanko, K., & Fish, J. (2024). SATB2-associated syndrome. in M. P. Adam, G. M. Mirzaa, R. A. Pagon, S. E. Wallace, L. J. H. Bean, k W. Gripp, & A. Amemiya (Eds.), GeneReviews® [NBK458647]. University of Washington. https://www.ncbi.nlm.nih.gov/books/NBK458647/

  • Zarate, Y. A., & Fish, J. L. (2017). SATB2-associated syndrome: Mechanisms, phenotype, and practical recommendations. American Journal of Medical Genetics Part A, 173(2), 327–337. https://doi.org/10.1002/ajmg.a.38022

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  • Zarate, Y. A., Yeargan, B., & Bosanko, K. (2023). Quantitative phenotype morbidity description of SATB2- asociated syndrome. BioMed Research International, 2023, Article 8200176. https://doi.org/10.1155/2023/8200176