Speech therapy supports vital for child with Childhood Apraxia of Speech (Family or carer experience)

Submission 456

Submission: Opposition to the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

My name is Sarah Moran. I am a certified practising Speech Pathologist, Union Leader, and small business owner. I am also a carer to my sister who has Down Syndrome. She has been a participant of the NDIS since it rolled out in Newcastle in 2013. For Karley and my family, the NDIS has been lifechanging. Her life is significantly better and her opportunities so different, compared to her life before the NDIS. I am scared. My family is scared. The promise of the NDIS has been broken with the Bill and I am urging the Labor Government to withdraw this Bill.

I am writing to formally express my strong opposition to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. While ensuring the financial sustainability of the scheme is an acknowledged goal, the mechanisms introduced by this legislation, namely the rigid definitions of functional capacity, the restriction of plan reassessments, and the siloed approach to comorbidities. These present severe risks to children and individuals. This submission outlines key clinical concerns and provides examples to support the Committee and Governments understanding of the real-life impact of this legislation.

1. Rigid Definitions of “Functional Capacity” and “Permanence” (Schedule 1, Parts 1 & 8) The Bill introduces Section 9B, which defines “functional capacity” as a person’s ability to undertake an activity in a context that explicitly excludes the impact of their “environmental and personal circumstances”.

This definition fundamentally contradicts the social model of disability enshrined in the UN Convention on the Rights of Persons with Disabilities (UNCRPD). The UNCRPD explicitly recognizes that disability results from the interaction between an individual’s impairment and environmental or attitudinal barriers (Hendriks, 2007). Evaluating a person’s capacity in a vacuum ignores the reality of their daily functioning. Furthermore, the requirement in Part 8 to exhaust “all appropriate treatment” to prove an impairment is permanent is punitive. There are well-documented, systemic waitlists for therapy and rehabilitation services across Australia (Harding et al., 2022), especially for children who need diagnostic assessments and therapy. Forcing families to wait out public health backlogs before granting NDIS access will catastrophically delay crucial early intervention.

• Clinical Example A: I see a participant on the NDIS who is autistic and is high masking. This means that they hide their challenges, symptoms, and impacts through ‘acting and avoidance’. This often results in emotional outbursts, challenging behaviours, and severe dysregulation when they get home from school, being out in the community, or when they are in a safe environment. Their challenges and support needs are easily hidden from strangers and in environments where they don’t feel safe. Without time to build rapport, establish safety, and a therapeutic relationship, this child would be assessed as having very low support needs by an untrained assessor. That would mean they lose access to supports, and must now have their supports self-funded by their family (Medicare only pays $62/appointment) or go on a public waitlist for services which in my area can be up to 12 months long. In the meantime, this child will disengage from school, become socially withdrawn, and experience significant psychological

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distress. The impact on their family will also be high. The family will struggle to support their child at home, struggle to manage behaviours, and will have significant challenges imposed on the entire family unit. When I have observed this happen before, parents have had to reduce work hours, take on more behaviour support, and are left isolated. Parent mental health deteriorates; this increases the likelihood that child protection referrals will be made and shifts costs onto other parts of the system. Whilst the family struggles to support their child to cope, there will likely be flow-on effects to the school environment too, which will increase pressure on their classroom teacher and the schooling system to fill in the gaps.

• Clinical Example B: I presently see a child who has Childhood Apraxia of Speech (CAS). This is a lifelong neurodevelopmental disorder that makes verbally speaking extremely difficult. Children who have CAS are very difficult to understand and require many years of intensive therapy to improve their speech. There are documented treatments for CAS that do work to reduce symptoms. However, under this Bill, a family would be required to exhaust all treatment options, for a lifelong communication disability, costing thousands of dollars per year, and fail, before they could access early intervention support under the NDIS. Programs like Thriving Kids are wildly insufficient to deliver the level of therapy required to treat CAS, which will result in only wealthy families, who can afford long-term therapy, accessing this support. For all children whose families cannot afford treatment, the child’s long-term outcomes for schooling, for gaining work, and for attending higher education will all be impacted. Before the NDIS, this is exactly what happened to children with this disorder.

2. Dangerous Limits on Unscheduled Plan Reassessments (Schedule 1, Part 2) The Bill introduces Section 48A, which restricts participant-requested plan reassessments to situations involving a “significant and ongoing” alteration in functional capacity or living circumstances.

Paediatric development is inherently non-linear. Children frequently experience rapid developmental shifts, transition phases (e.g., entering schooling), or sudden regressions that require immediate clinical intervention. Denying reassessments until a crisis is deemed “ongoing” prevents allied health professionals from providing agile, responsive care, such as upgrading Augmentative and Alternative Communication (AAC) systems.

• Clinical.Example.A¿I see a child with a rare genetic disorder who has difficulty talking, walking, playing, and living their everyday life. They need help for all elements of their life. Because their disorder is so rare, very little is known about their long-term outcomes, life expectancy, and support needs. One documented element of their disorder is early regression, and childhood dementia-like symptoms. This means that at any time, they can begin to experience severe regression of skills, which only increased therapeutic supports can halt and improve. They also need assistive technology to help them move, communicate, and live their life. Without access to unscheduled plan re assessments, this participant will be left with no flexibility to adjust their supports at times of increased need or seek approval for assistive technology (AT). This could leave them waiting up to 12 months (or longer if they have a 2–5-year plan) to make a request

Submission 456

for a speech generating device, mobility aid, or in-home supports to help their family manage their care. In this Bill, it is also proposed that the participant’s environment be excluded. This would mean that an assessor would not have to consider that this child lives in a household with 2 other disabled siblings, both of whom have high support needs, and a parent who has a disability. This can be catastrophic for a family and completely fails to capture their actual support needs, pushing unreasonable responsibility and care requirements onto families.

3. Siloed Approaches to Impairments and Unchecked Ministerial Powers (Schedule 1, Parts 3 & 4)

Schedule 1, Part 3 amends Section 34 of the Act to mandate that supports will only be funded if they address needs arising directly from the specific impairment that met the access criteria, intentionally excluding comorbid conditions. Additionally, Part 4 introduces “Support Determinations” (Section 34A) allowing the Minister to broadly reduce funding component amounts across the Scheme.

The siloed approach ignores the reality of compounding, intersectional disabilities, directly threatening the professional integrity and ethical standards expected of practising clinicians (Johnson et al., 2023). This legislative requirement fundamentally breaches the World Health Organization’s International Classification of Functioning, Disability and Health (ICF). As allied health professionals, we are university-trained and ethically mandated by our professional bodies to assess and treat individuals holistically in accordance with the ICF. The ICF framework dictates that true functional capacity can only be understood by integrating a person’s health conditions with their intersecting environmental and personal factors (World Health Organization, 2001). To legally mandate the isolation of a single impairment—and to purposefully ignore how co-occurring diagnoses dynamically interact to restrict a person’s functioning—is clinically negligent and highly unethical. It forces practitioners to compromise their duty of care by providing fragmented, interventions. Furthermore, proposed Section 34A grants the Minister unprecedented, unilateral power to reduce or cap participant budgets across the board. Removing Section 31—the central legislative expression of participant choice and control—while giving the Minister the power to enact sweeping funding reductions without mandatory consultation, parliamentary disallowance, or independent review fundamentally changes the core purpose of the NDIS. Supports that have been clinically assessed as reasonable and necessary should not be subject to arbitrary, politically motivated reductions.

• Clinical.Example.A¿My sister has Down Syndrome. She has an intellectual disability, and she is Autistic (Level 2 Support Needs). Under the proposed Bill, she would only be able to access supports for one, accepted diagnosis. At present, she accesses supports that look at her as a whole person, not a singular disability. This preserves the whole-of person approach supported by the International Classification of Functioning (ICF), and UNCRPD. My sister is significantly impacted by the interaction of her Autism with her intellectual disability. Her supports are different because she has a dual diagnosis. Under this new legislation, she would be treated the same as another person with Down Syndrome who is not Autistic. This is reductive and unethical. She needs individualised supports that meet her needs, not the needs of people like her.

Submission 456

4. The Risk of Non-Clinical Assessment Frameworks The Explanatory Memorandum points towards standardising assessments and relying heavily on a new framework driven by financial sustainability rather than clinical discretion.

Government frameworks that position non-clinical assessors or automated formulas as independent decision-makers violate established healthcare safety models. Non-clinical staff do not possess the university-level qualifications required to screen for, diagnose, or understand the severe health implications of secondary conditions like dysphagia, communication barriers, or complex sensory profiles. Allowing non-clinicians to dictate support budgets effectively silences the multi-disciplinary allied health expertise required to prevent systemic harm among vulnerable participants.

• Clinical Example A: The proposed use of the I-CAN (Instrument for the Classification and Assessment of Support Needs) by non-clinical delegates within the “New Framework Planning” tool perfectly illustrates this risk. As explicitly highlighted in a recent press release by APPI, the I-CAN tool is neither clinically validated nor reliable when administered by individuals lacking university-level allied health qualifications and specific, advanced training in the tool itself (APPI, 2024). If an untrained administrative worker uses the I-CAN to assess a child with complex communication needs or dysphagia, they will inherently fail to accurately interpret subtle clinical presentations or contextual functioning. Using a specialized clinical tool in a non clinical capacity to justify support budget reductions is inappropriate, unethical, and highly dangerous, risking severe, preventable harm to the participant.

5. The Dangers of Automated Decision-Making and Standardised Planning (Schedules 3 &

The Explanatory Memorandum outlines the introduction of “New Framework Planning” (Schedule 4) and the “automation of administrative action” (Schedule 3). The stated intent is to streamline internal NDIA decision-making processes, clear administrative backlogs, and deliver “equitable and consistent participant budgets” via standardised support needs assessments.

While the Government asserts that automated processes will yield equitable outcomes, reducing complex disability needs to a standardised algorithm poses extreme clinical risks. Automation inherently lacks the capacity for clinical nuance. Standardising a budget using an automated internal process cannot accurately capture the highly individualised, fluctuating, and intersecting needs of a child with complex communication or swallowing disorders. Replacing person-centred clinical planning with rigid, automated administrative formulas directly threatens individualised care, risking severely diminished participant outcomes rather than improving them.

• Clinical Example: Consider a child with a rare neurodevelopmental condition requiring dynamic, high-tech AAC support alongside fluctuating dysphagia (swallowing) management. An algorithmic budget tool relying on a primary diagnosis code will likely generate a standard “base” therapy funding package, failing entirely to account for the immediate, high-risk need for modified barium swallow studies, custom AAC mounting,

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and intensive parent training. Relying on an automated assessment to fund this child will result in critical safety risks (e.g., aspiration) and severe developmental gaps.

6. Disproportionate Impacts on Marginalised Groups, Carers, and Gender Equity The proposed legislative changes will have cascading, negative impacts across the disability ecosystem, particularly affecting groups already facing systemic barriers:

• People with Disabilities and First Nations Communities: The requirement to prove an impairment is permanent by exhausting public health treatments ignores the reality of healthcare inequality. First Nations children, particularly those in regional or remote areas, face extreme barriers to accessing primary healthcare. Mandating the exhaustion of “treatment” before NDIS access is not only culturally unsafe, but geographically impossible for many, directly contravening the National Agreement on Closing the Gap. Standardised, automated assessments are Western-centric and routinely fail to capture the intersectional complexities of Indigenous children with disabilities.

• Carers, Families, and Gendered Economic Impacts: Restricting plan reassessments and implementing rigid funding models under the guise of “parental responsibility” will inevitably shift the burden of intensive clinical support onto informal carers. This creates an irreconcilable policy contradiction with the Commonwealth’s own legislative objectives managed by the Workplace Gender Equality Agency (WGEA) under the Workplace Gender Equality Act 2012. Empirical data from the Australian Bureau of Statistics (ABS) confirms that women already perform 62% more uncompensated, unpaid labour than men, and that 71.8% of primary informal carers in Australia are women. Coercing primary caregivers—the vast majority of whom are women—to absorb the clinical service deficit created by restricted NDIS budgets will actively worsen the national gender pay gap, counteract WGEA’s enforceable workplace targets, and systematically entrench gendered economic inequity.

• Allied Health Providers: The Explanatory Memorandum’s focus on overarching compliance (Schedule 2) and the systemic overriding of clinical evidence devalues the expertise of allied health professionals. This devaluation is particularly damaging given the landmark Fair Work Commission decision regarding the Health Professionals and Support Services Award 2020, which formally recognised that allied health professions have been historically undervalued on the basis of gender (Fair Work Commission, 2026). Speech pathology is a profoundly female-dominated profession, with women comprising approximately 97% of the workforce (Jobs and Skills Australia, 2024). Imposing heavy bureaucratic frameworks while simultaneously ignoring evidence-based clinical recommendations threatens the viability of small, independent, and culturally specific therapy providers. By overriding the clinical expertise of a historically undervalued, predominantly female workforce, the Bill directly undermines national efforts to rectify gender-based economic inequity. This legislation risks driving highly skilled clinicians out of the NDIS market, severely limiting participant choice and access to specialised, life-changing care.

Recommendations

Submission 456

Drawing upon my diverse perspectives as a certified practicing Speech Pathologist, a union leader representing healthcare workers, a small business provider, and a carer, I respectfully submit the following recommendations to the Committee:

1. Retain Participant Choice and Limit Ministerial Powers: Reject the repeal of Section 31 to preserve participant-directed planning. Furthermore, and delete proposed Section 34A (Ministerial funding reductions) to ensure any overarching funding determinations remain strictly subject to consultation, parliamentary disallowance, and independent review.

2. Amend the Definition of Functional Capacity: Remove Section 9B’s exclusion of “environmental and personal circumstances.” The legislation must align with the social model of disability to ensure functional capacity is assessed in the context of the child’s actual environment, yielding safe and accurate support plans.

3. Remove the ‘Treatment Exhaustion’ Clause: Strike the requirement in Part 8 to exhaust all public health treatments before establishing permanence. Access to NDIS early intervention must not be held ransom by systemic public health waitlists.

4. Protect Funding for Intersecting Clinical Needs: Amend Schedule 1, Part 3 to explicitly allow funding for supports related to secondary or comorbid conditions (e.g., dysphagia accompanying physical disabilities) when deemed clinically necessary by a registered allied health professional.

5. Ensure Agile Plan Reassessments: Modify Section 48A to permit unscheduled plan reassessments triggered by urgent clinical needs, critical equipment upgrades (e.g., AAC devices), or sudden changes in carer capacity, without the prerequisite of the crisis being “ongoing.”

6. Halt Automated Decision-Making for Complex Care: Introduce legislative safeguards preventing the use of automated budget algorithms or non-clinical assessors for participants with highly complex or life-threatening needs (such as dysphagia management). Budget generation must retain mandatory input from qualified, registered allied health clinicians to prevent systemic harm.

7. Mandate Sector Co-Design to Protect the Workforce: Require the NDIA to co-design any “New Framework Planning” tools directly with allied health peak bodies, worker unions, and disability representative organisations. This is essential to ensure assessment tools are clinically valid and to prevent an exodus of essential therapy providers and small businesses from the Scheme.

Conclusion

The Securing the NDIS for Future Generations Bill 2026 prioritises fiscal containment over the rights, safety, and developmental outcomes of children with disabilities. As an allied health professional, I urge the Committee to reject the rigid definitions of functional capacity, reinstate clinical discretion in funding comorbidities, ensure that all functional assessments remain the jurisdiction of qualified, registered clinicians, and carefully consider the severe gendered economic impacts of shifting care burdens onto unpaid female carers.

Submission 456

References

• APPI. (2024). Press Release: Concerns regarding the clinical validity of I-CAN assessments by non-clinical NDIA staff.

• Australian Bureau of Statistics (ABS). (2019). Disability, Ageing and Carers, Australia: Summary of Findings.

• Australian Bureau of Statistics (ABS). (2022). How Australians Use Their Time, 2020-21.

• Coalition of Aboriginal and Torres Strait Islander Peak Organisations, & Australian Government. (2020). National Agreement on Closing the Gap. https://www.closingthegap.gov.au/national-agreement

• Fair Work Commission. (2026). Decision: Gender-based undervaluation – priority awards review - Health Professionals and Support Services Award 2020. [2026] FWCFB 123.

• Harding, K. E., Camden, C., Lewis, A. K., Perreault, K., & Taylor, N. F. (2022). Service redesign interventions to reduce waiting time for paediatric rehabilitation and therapy services: A systematic review of the literature. Health & Social Care in the Community, 30(5), 2057–2070. https://doi.org/10.1111/hsc.13866

• Hendriks, A. (2007). UN Convention on the Rights of Persons with Disabilities. European Journal of Health Law, 14(3), 273–298. https://doi.org/10.1163/092902707x240620

• Jobs and Skills Australia. (2024). Speech Pathologists: Age and Gender Demographics.

Australian Government. https://www.jobsandskills.gov.au/data/occupation-and-

industry-profiles/occupations/252712-speech-pathologists

• Johnson, T., Williams, K., Marussinszky, N., & Felix-Faure, A. (2023). Wellbeing and Professionalism. Journal of Clinical Practice in Speech-Language Pathology, 25(1), 38–

41. https://doi.org/10.1080/22087168.2023.12370389

• Parliament of Australia. (2012). Workplace Gender Equality Act 2012.

• Parliament of Australia. (2026). Explanatory Memorandum: National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

• Parliament of Australia. (2026). National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

• United Nations. (2006). Convention on the Rights of Persons with Disabilities. UN General Assembly.

• World Health Organization. (2001). International Classification of Functioning, Disability and Health (ICF). Geneva: WHO.