Community-Driven Care for Thriving Kids

Jade and Riley’s experience in the recent ABC story captures the heartbreak of untreated speech difficulties—but it’s also a call to action Amid the “Thriving Kids (TK)” and “ICAN” momentum, Australia has a chance to rethink support for children’s communication needs. One in four pre-kindy kids faces speech or language delays that, left unchecked, cascade into lifelong challenges. This fuels a public health crisis reflected in stagnating literacy rates—a troubling downward trend for over two decades, with one in three students below basic benchmarks, especially disadvantaged kids (ACARA 2025). These aren’t rare, hard-to-treat disorders; they’re common challenges with solid evidence for successful treatment, like speech impacted by delayed phonological development. Our public health system is overburdened, and centralised policies cost billions. Decentralising decision-making about TK through private/public collaborations e.g., allied health practices and child health nurse (CHN) screening in schools and childcare centres can target funding ethically, reduce waste, and help kids thrive.

The Public Health Crisis

Australia’s public allied health (AH) services, like speech pathology (SP) and occupational therapy (OT), are stretched thin. Paediatric assessment wait times average 12 months nationally, hitting 18 months in regional areas—a 20% increase since 2023. Demand surged 30% post-COVID, but public capacity covers less than 25% of needs, leaving 60% of at-risk kids without timely help. In rural Australia, it’s one SP per 5,000 children, turning “easy fixes” into entrenched academic and mental health issues.

Not intervening early costs $22.3 billion annually in late supports—$838 per Australian, up 47% recently. For speech delays (10-15% of kids), early fixes cost $500-2,000; delayed interventions hit $10,000-50,000/child in NDIS, health, and education, with a 43% higher adult unemployment risk ($50,000 lifetime loss, CPI-adjusted; AIHW/Minderoo 2025). The NDIS 2025-26 budget ($52.3 billion, up from $46.2 billion) sees ~5% (~$2.6 billion) eaten by administrative overheads—$500-800/child in red tape. Decentralised models, like coordinated AH delivery (emphasising integrated care across public and private providers – check out our FUSE model here) could cut this by 25-30% via data-sharing and consensus-building. For 100,000 regional kids: centralised admin = $60 million; decentralised = $42-48 million (saving $12-18 million).

The Workforce Reality: Private by Choice, Women-Led

At the heart of service delivery are the professionals: ~36-55% of SP and OT services come from private or small practices (SPA 2023; AHPRA 2020), with NDIS claims data showing 75-85% private delivery (there are heaps of other disciplines involved but I can’t crunch all the numbers!). Public roles offer less freedom and pay, driving turnover.

Not because we’re greedy—demographics (source 1, 2) tell the story: ~90% are women (92% SP, 88% OT) with ~40-45% working part-time (up ~15% since 2020) to balance family. Of these, ~75% have children under 18 (~40% under 5, estimated from AIHW 2023 & ABS 2021 Census, updated 2025), and ~35% are over 45, adding 10-15 hours weekly caring for aging parents. Attrition risks hit 40% without flexibility. I prioritise family first, because I’m in the 75% group (got a couple of kids) and 35% (caring for aging parents). The data says: 1. My experience is common. 2. Families are a huge part of our lives. 3. Most of us are in the same boat. 4. This won’t change.

The Legacy System’s Last Gasp: From Philosophy to Tech-Empowered Empowerment

What we’re witnessing in NDIS is the dying gasps of a legacy system grappling with relevance, deciding whether it will pioneer the support and development needed to empower communities to self-govern, or waste time, resources, and lives trying to be the “parent” it cannot be (the lessons of blockchain, P2P, AI are clear: superior tech matched to community need won’t be stopped). So far, it looks a lot like spending mega research bucks to set standards, necessary and important yes, only to rely on a bureaucratic layer who don’t need to be there, and whose decisions (too frequently accompanied by lack of skills or expertise) cannot reflect NDIS’s core: disability’s context-specific impact demands individual funding. The new announcement around the use of the ICAN tool into NDIA decision-making is a real opportunity for decentralisation: Assessors, administering ICAN, can only be allied health clinicians with a tertiary qualification. ICAN is not a flash in the pan, 20+ years of ICF-aligned, evidence-based research, and their evidence base is reliant on administration as per the instructions on the packet.

Admin support and digital tools (e.g., secure data platforms, privacy protection, compliance and verification mechanisms) are key to actionable delivery. Tools that enable stakeholders to understand and track local data against national datasets, verify conclusions, build consensus, and share decision-making are here. Compliance, trustworthiness, standards and cost effectiveness matter but they can be verified directly through mechanisms like zero-trust frameworks, KYC, and standards for data submission, removing the need for governmental oversight, delivering oversight back where it belongs: the local community. We have so much opportunity for connection and self-determination by decentralising decision-making by using the tech already at our fingertips.

This isn’t new philosophy; we’ve long had the intellectual foundations. Paulo Freire’s dialogical education (Freire, 1970) champions critical consciousness through collaborative, community-led learning, rejecting top-down “banking” models where knowledge is deposited into passive recipients—much like NDIS’s external assessors imposing decisions without lived context. bell hooks’ intersectional pedagogy (hooks, 1994) builds on this, emphasising inclusive, transformative practices that honour diverse voices, particularly those marginalised by race, gender, and class, to foster empowerment over control. These ideas underpin heaps of evidence-based models for consensus building and community empowerment, such as the key worker model in disability support, which shows 20-30% better outcomes in family satisfaction and skill generalisation through multidisciplinary collaboration (Law et al., 2015; Ebbels et al., 2019). Research on self-determination theory (Deci & Ryan, 2000) demonstrates that autonomy-supportive environments boost intrinsic motivation and long-term adherence, with studies in Indigenous health showing 15-25% higher engagement when communities lead (Australian Institute of Health and Welfare, 2023).

Aboriginal communities have been loudly advocating for this: Self-determination is key, as echoed by SNAICC (Secretariat of National Aboriginal and Islander Child Care, 2025), which calls for ACCOs to control 30-50% more funding to deliver culturally safe, community-owned services—reducing disparities in NDIS uptake from 38% to parity. Now, with AI and tech’s unleashed capacity, we can operationalise this: Automation in data-sharing (e.g., secure platforms for reviews) and zero-trust frameworks ensure transparency without gatekeepers, empowering NESB and Indigenous families to co-design care. Legacy systems served a purpose in limited-tech eras, but their day is done—tech enables truly democratic, tailored institutions, different for every community. The democratic evolution from Ancient Rome’s voting to modern bureaucracy was progress, but now AI and tech facilitates phasing out silos for fluid, self-governing models.

Part of the Solution

I’ve written about how the proposed NDIA changes  for Navigator and Assessor roles can be located in the existing networks and frameworks, such as our FUSE model. TK located in the existing structure can also work by using child-care and school-based screening with better coordination between the service providers. Small practices, covering 1 or 2 schools/CCC can shape funding, deliver services, and refer, in collaboration with OTs and CHNs. Pushes for universal screenings reflect the ethos of civil society, but discipline-specific tools avoid gaps and our professional bodies, like SPA, are best placed to guide tool selection as development evolves, ensuring relevance. Collected data (e.g., literacy or social skills deficits) can drive TK funded site-specific group and individual therapy allocations—meeting local needs in situ in real time, potentially boosting uptake to 80-90%.

The Thriving Kids Guarantee (2025, $2 billion, 2026-2031) aims to embed early intervention in schools and kindy hubs, but its push for big community-based organisations (CBOs) sounds good on paper but risks the same gaps—poor, non-English-speaking, and Aboriginal families (30-40% access barriers) miss out. CBOs aim for equity (e.g., cultural safety via ACCOs), but CBOs don’t fully embed in communities—awareness is low (40-50% access, SPA/CYDA), and AH pros (90% women, 65% part-time, AIHW 2025) aren’t rushing to work in them because of flexibility/pay realities. The reality is schools/Dept of Communities catch ~70% of Aboriginal referrals vs. 30-40% for ACCOs, and private AH catch ~60% of all referrals first.

In Western Australia, School Entry Health Assessment (SEHA) screens kids at kindy (age 4-5), led by child health nurses (CHNs), with similar processes in other states. But compliance is low—missing 20-30% of kids, especially in regional areas (CAHS 2025), and the tools, like Ages and Stages Questionnaire, are too general, missing 40% of nuanced delays (SPA 2025).

Evidence supports AH in schools: Newcastle’s SPinS cuts waits 40% and boost detection by 30-50%; Wells & Leitao (2025) show student gains when EAs are SP-supported; and there are systematic reviews (check Law & Charlton (2017) here).

We need support to build processes that honour the lived experiences and cultural contexts that shape our lives, delivering individualised and timely care in settings people already access, using nuanced discipline-specific tools to identify need. Medicare’s 10-session cap ($580-780/year) is insufficient for 20-30% complex cases (SPA), but NDIS add-ons or school pots can bridge this. Our regional context (20% higher gaps, 1 SP/5,000 kids) makes models like this critical and small practices are agile for meeting needs.

Let’s support allied health to do their job, encourage collaboration, and deliver responsive, effective care where people actually live, work and play, and let’s do it without asking for another hidden cost to go unchecked (drive here, check this box, turn up at this time, give me all your details again, and so on and so on). “Another world is possible, some days I can hear her breathing” – Arundhati Roy.

by Alexandra Cullen