Paediatric services and access challenges for children with disabilities in the Bega Valley Shire

Submission No 80

INQUIRY INTO FOUNDATIONAL AND DISABILITY SUPPORTS AVAILABLE FOR CHILDREN AND YOUNG PEOPLE IN NEW SOUTH WALES

Organisation: The Squiggle Co. Date Received: 27 July 2026

Partially Confidential

The Squiggle Co. Pty Ltd ABN: 54687151828 Email: Phone:

Submission to the Inquiry into Foundational and Disability Supports Available for Children and Young People in New South Wales

Date: 20/07/2026 To: The Hon. Natasha Maclaren-Jones MLC, Chair, Select Committee on Foundational and Disability Supports Available for Children and Young People in New South Wales

I thank the Committee for the opportunity to make a submission to this Inquiry. My name is Jamie and I am a Physiotherapist with 7 years’ experience providing paediatric services, holding a Bachelor’s degree in Physiotherapy and a postgraduate Master’s degree in Paediatric Physiotherapy, I am registered with the Australian Health Practitioner Regulation Agency (AHPRA) and Australian Physiotherapy Association (APA).

In this role, I have supported over 200 families, children and young people who are NDIS participants (with diagnoses including Autism, Global Developmental Delay, and complex physical disability) within the Bega Valley Shire, often referred to by the Allied health community as the “black spot” for paediatric services within NSW.

This submission is made in my capacity as Director of The Squiggle Co., drawing on clinical experience across my years of working within the community. I am writing in response to proposed changes to the NDIS and the Thriving Kids initiative. My key concern is that these changes risk reducing family choice and control, diminishing access to essential and clinically distinct Allied Health disciplines, and placing children, families, and school staff at increased risk of harm.

Local Context To illustrate the environment in which these proposed changes would take effect, I wish to outline the current access challenges already facing families in our local community.

• General Practitioners in our region are operating at full capacity, with many practices closed to new patients. It’s not uncommon for the soonest available appointment to be two to three months away.

• The public health system also operates under significant funding constraints. Paediatrician waitlists in our region are approximately two years, and waitlists for initial Allied Health assessment (Occupational Therapy, Physiotherapy, and Speech Pathology) are approximately six months. Once assessed, ongoing public Allied Health support is highly limited and is typically only available to children under seven years of age; little to no support or assessment capacity exists for older children through the local public system.

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Furthermore, once a child gains access to NDIS funding, they become ineligible to access public Allied Health outpatient services. This creates a significant gap: children identified through the public system as having a delay or disability, who subsequently gain NDIS funding, are then unable to receive any further public system support. Our local public Paediatric Allied Health workforce currently consists of two Physiotherapists, one Speech Pathologist, one Occupational Therapist, and dietetics support. All of which are currently underfunded, and many families are referred to Canberra (3hrs away) or Sydney (6hrs away) as a result.

The private sector in our region has only begun to grow over the past two to three years. Prior to this, the only local service was a not-for-profit provider, which has since entered liquidation as a direct result of NDIS funding changes and broader local pressures.

This has created a compounding cycle: children with NDIS plans were unable to access private supports due to extensive waitlists, were ineligible for public health support due to their NDIS funding status, and in many cases were still awaiting formal diagnosis from a Paediatrician. As a result, the majority of our local Paediatric caseload is now more chronic and complex than would be expected, with a significant existing backlog of families yet to receive any local support.

A substantial proportion of these children are given interim or placeholder diagnoses of Global Developmental Delay (GDD) or Autism/ADHD, pending formal review and diagnosis by Paediatricians and specialists in Sydney (6hrs away). This is precisely the population proposed to receive reduced Allied Health support under Thriving Kids. I cannot stress strongly enough how harmful the proposed changes would be to these children and families.

GDD and Autism/ADHD frequently co-occur with, and are early features of, more complex lifelong disabilities such as Cerebral Palsy, Muscular Dystrophies, Spinal Muscular Atrophy, Fragile X syndrome, and other rare genetic and neuromuscular conditions. Because GDD and Autism/ADHD are typically diagnosed earlier than these underlying conditions, and because our local families cannot access timely, appropriate support, preventable secondary complications are frequently missed as a result.

There are currently only three larger private Allied Health providers in our region, with the majority of local providers operating as sole traders or small businesses given the scale of community need and the constraints of the NDIS, local context and systems.

As our region is a lower socio-economic area, and families affected by disability already face greater barriers to stable income, the proposed changes risk putting the majority of local therapists out of work — further reducing the already limited local capacity to support these children.

The Squiggle Co. Pty Ltd ABN: 54687151828 Email: Phone:

• Our local Allied Health providers are covering the area from the Victorian border, up to Cooma (South Coast boundary) and Narooma. These areas are Modified Monash Model (MMM) 5 and it is not uncommon for travel to and from local appointments to take up to 2 hours each way.

• Local families must travel 6hrs away for specialist appointments

With this context in mind, I implore you to consider the below recommendations and points of this submission.

Family-Centred, Collaborative Care

The best outcomes have come from listening to families’ needs and designing goals and therapy plans in collaboration with the child, caregivers, the Allied Health team, and external supports such as schools or day-care services.

I wish to raise the importance of therapy occurring in the environment most appropriate to the individual child’s needs and goals — which is not always the school setting, and is not always the clinic setting either.

School-based therapy is, at times, essential and highly effective — for example, supporting a child’s physical access to classrooms and school facilities, or enabling participation in sport and playground activities alongside peers. These are goals that can only be meaningfully assessed and addressed within the school environment itself.

However, therapy delivered outside of school and clinic settings is equally necessary for many children, and in some cases produces outcomes that cannot be achieved elsewhere. Some examples include:

• A young person with vision impairment requiring mobility training within their own local community — including navigating specific landmarks, footpaths, shops, and parks — rather than a clinic or school hallway, so that skills transfer to the real-world environments they will actually need to navigate independently.

• A child with movement support needs whose goals encompass extracurricular activities such as swimming or dance lessons. The therapist needs to assess and support the child’s actual physical demands, equipment, and environment in real time — something that cannot be replicated or simulated in a clinic or school setting.

• A young NDIS participant who was non-speaking in both school and clinical settings. Once therapy sessions were relocated to the family home, the young person began speaking directly with their therapist for the first time, and was

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able to communicate their needs, build confidence, and engage meaningfully in activities targeted at improving their pain and function — an outcome that would not have been possible in a school or clinic setting alone.

• Children with Autism and Global Developmental Delay frequently have limited capacity to engage in therapy within unfamiliar, high-stimulation, or high- pressure environments such as a classroom or clinic room, where sensory load, social demands, and unfamiliarity can prevent meaningful participation altogether.

These examples demonstrate that the clinical judgement of a qualified Allied Health professional — not a fixed policy setting requiring service delivery through a single institution such as the Department of Education — must determine where therapy is delivered, based on the individual needs, environment, and goals of each child. A one- size-fits-all model risks removing access to the very environments in which some children can only engage, communicate, and progress.

Concerns Regarding Tendered or Exclusive Provider Models

I hold concerns regarding proposals that would see NDIS or Thriving Kids service delivery tendered exclusively to a single private provider within a region. While I understand the intent behind these models may be to streamline funding, oversight, or accountability, in practice this approach directly undermines the core NDIS principle of choice and control and introduces significant risk for families and the local workforce.

• Loss of choice: Families would no longer be able to select a provider, clinician, or service model that best suits their child’s needs, values, or circumstances. A single-provider model removes the ability for a family to seek a second opinion, change providers if the therapeutic relationship isn’t working, or access a clinician with specific expertise relevant to their child’s condition. This matters significantly in our local context: the existing larger providers have each developed their own reputation within the community over time, and this is precisely why our region has also grown a strong base of smaller businesses and sole traders — different families need different approaches, and no single provider suits every child or family. Some families have already tried a larger provider and, for a variety of legitimate reasons, did not have a positive experience, and have since found a better fit with a smaller or alternative local service. Exclusivity removes choice entirely in a region that doesn’t have the deepth of providers to fall back on if the one appointed provider isn’t the right fit.

• Single point of failure: Should the appointed provider experience staffing shortages, financial instability, or service disruption — as has already occurred

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Phone:

locally with our region’s previous not-for-profit provider entering liquidation — families would have no alternative local service to turn to. This creates significant risk of families being left entirely without support, rather than simply needing to seek an alternative provider.

• Workforce impact: An exclusive tender model would force existing local sole traders and small Allied Health businesses out of the market, regardless of the quality of care they currently provide, simply because they were not the successful tenderer. Given the majority of providers in our region operate as small businesses or sole traders, this risks a significant loss of local clinical capacity and expertise, rather than a consolidation of quality.

Families should retain the right to choose their Allied Health providers based on their child’s individual needs, the quality and fit of the therapeutic relationship, and their own informed preference — not be limited to a single, government-appointed provider for their entire region. I urge the Committee to recommend against any tendered or exclusive regional provider model, and to instead support a competitive, multi-provider market that preserves genuine family choice and control.

Concerns Regarding the Transfer of Allied Health Service Delivery to the

Department of Education

I hold significant concerns regarding proposals to transfer responsibility for Allied Health service delivery to the Department of Education (DoE). This approach risks diminishing the quality of care available to children and increases the risk of harm to both students and staff.

The teaching workforce is already operating under considerable strain, with well- documented rates of burnout across the sector. Allied Health is not a supplemental support that can be absorbed into existing educational roles without specialist training, qualification, and clinical governance. Expecting an already-stretched education workforce to take on responsibility for services delivered by an Allied Health sector that is itself under significant workforce pressure is not a sustainable solution. Rather than resolving service gaps, this is likely to compound existing strain on DoE staff, while reducing the clinical oversight, training, and specialist expertise required to safely support children with disability. The likely outcome is not improved access, but a decline in service quality and safety, and a greater downstream impact on the children this reform is intended to support.

Just as it would be unthinkable to expect a teacher to deliver dentistry or medical care within a school setting, it is equally unreasonable to expect teaching staff to absorb responsibility for Allied Health service delivery. This level of training, regulation, and

Phone: legal responsibility cannot be replicated through incidental upskilling of an existing DoE workforce, regardless of the goodwill or capability of individual staff.

To illustrate the level of specialist training and regulatory oversight this proposal risks bypassing: Physiotherapists are registered health practitioners under the Australian Health Practitioner Regulation Agency (AHPRA) — the same national regulatory body governing doctors and other medical professionals. Registration as a Physiotherapist providing paediatric services requires a minimum of six years of formal tertiary education, comprising an undergraduate degree in Physiotherapy and a postgraduate Master’s degree specialising in Paediatrics, followed by an ongoing requirement of a minimum of 20 hours of continuing professional development annually, along with thousands of dollars in annual registration, insurance, and professional development costs, in order to legally practise. Many practitioners, myself included, carry in excess of $70,000 in student debt accrued through this training.

Proposed Incorporation of Community Services into Thriving Kids

I am also aware that consideration has been given to incorporating the Department of Communities and Justice (DCJ) into the proposed foundational supports such as the Thriving Kids initiative. In addition to concerns already raised by DCJ itself, I wish to share my own real-world observations of how this model has played out in our local community.

DCJ has been an integral and valued partner in supporting children and families locally, and I have found them to be excellent collaborators. However, my observations are informed by my previous role at a not-for-profit service working closely with DCJ, supporting vulnerable families, Aboriginal and Torres Strait Islander families, and children accessing the NDIS.

Given the funding and staffing constraints under which DCJ operates, and the overwhelming volume of families requiring support, their capacity to provide sustained, meaningful input was consistently stretched thin. This created a recurring and concerning cycle for vulnerable families:

• DCJ would refer a child to Early Intervention (EI) supports, and — having taken this action — would then reasonably step back their own involvement, given competing demands on their limited capacity.

• EI services, facing their own capacity constraints, would place the family on a waitlist.

• DCJ, managing a caseload of higher-priority matters, would have limited capacity to remain engaged with the family in the interim.

• The combined effect of this gap was that family vulnerability and case complexity would often increase during the period in which no service held active responsibility for the family.

Where DCJ was able to remain engaged, this was often in a limited capacity, relying heavily on information provided by El services due to DCJ’s own resourcing constraints.

This dynamic frequently placed therapists in a role closer to case management or social work than clinical Allied Health. A family might be referred for a presenting issue such as gross motor delay, while the family’s more urgent priorities were in fact related to trauma, housing instability, or poverty. For example, a family might be asked to attend a therapy clinic weekly, without any means of transport or capacity to fund it; or a child referred for a motor delay would present with far more pressing and obvious needs — safety, food security, transport, or access to medical care, psychology or social work support.

Given the rural context and the systemic lack of local resources, I was frequently the only professional maintaining regular contact with some of these highly vulnerable families. In these circumstances, it became clinically and ethically inappropriate for Physiotherapy input to continue as the primary form of contact, when a child’s basic needs were not being met. This created a genuine ethical dilemma: discharging the family would mean they received no further oversight or regular check-in at all, while continuing to provide input risked working significantly outside professional scope of practice.

I ultimately left this role after three years, due to burnout, repeated vicarious trauma, and an unwillingness to work outside my professional scope. Several colleagues within the same service left for similar reasons. Despite genuine best efforts from both DCJ and the not-for-profit provider, the underlying lack of resourcing had a significant, adverse impact on staff wellbeing, mental health and retention. This provider has since gone into liquidation due to the contextual factors surrounding the financial viability of early intervention supports.

This experience informs my concern that incorporating DCJ into the Thriving Kids model, without addressing the substantial resourcing and capacity constraints already affecting both DCJ and Early Intervention services, risks reproducing the same cycle at greater scale — leaving vulnerable families without consistent oversight, placing greater burden on DCJ, and placing Allied Health professionals in roles beyond their training, scope, and capacity to sustain.

The Squiggle Co. Pty Ltd ABN: 54687151828 Email: Phone:

Recognising Physiotherapy as a Distinct and Essential Discipline

I ask the Committee to ensure Physiotherapy is recognised as an equally essential, distinct contributor to functional participation outcomes for children with disabilities — not a duplicate of Occupational Therapy support. Both are functional, participation- focused therapies; they simply address different barriers to participation.

For children with Global Developmental Delay (GDD) or Autism, motor impairments such as low muscle tone, poor balance, and delayed gross motor skills are common, and directly limit a child’s ability to sit at a desk, join playground games, keep up with peers, or move safely at school and in the community. These are physical barriers to participation, and Physiotherapy has the specific expertise to assess and address them. Occupational Therapy addresses other participation goals, such as self-regulation and the equipment required to access these settings.

Without Physiotherapy input, a child’s capacity to physically participate — the very foundation the NDIS is designed to fund — may go unaddressed, regardless of how much Occupational Therapy support they receive.

To demonstrate the breadth of scope physiotherapy has within paediatrics, below is a list of common conditions Physiotherapy is trained in and that we play an active role in supporting for Children and Young People (not exhaustive):

• Cerebral Palsy (CP)
• Chronic Fatigue Syndrome
• Connective Tissue Disorders such as HSD, Ehler’s Danlos Syndrome
• Developmental Coordination Disorder (DCD)
• Downs Syndrome
• Foetal Alcohol Spectrum Disorder (FASD)
• Fractures
• Physical fitness, participation and function
• Genetic Conditions including (but not limited to): Arthrogryposis, Microdeletion/ microduplication, Lamb-Shaffer syndrome, Marfan’s
• Gross Motor Delay (GMD)
• Gait disorders and gait development
• Infant conditions including: Torticollis, Hip dysplasia, Brachial Plexus injury, Talipes equinovarus, Bow legs/knocked knees, Plagiocephaly / Brachycephaly
• Juvenile Idiopathic Arthritis (JIA)
• Limb loss/ Amputations

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• Musculoskeletal conditions including Perthes, SUFE, Scoliosis, foot and ankle disorders
• Musculoskeletal injuries
• Neurodiverse conditions such as Autism, ADHD, ADD – With gross motor delay
• Neurological Conditions including: CP, Acquired Brain Injury (ABI), Hypoxic Brain injury, Functional neurological disease (FND), conditions affecting muscle tone
• Neuromuscular conditions such as: Duchenne’s (DMD), Muscular dystrophy (MD), Charcot Marie Tooth (CMT), Myotonic Dystrophy, Spinal Muscle Atrophy (SMA)
• Pelvic floor/bladder and bowel function
• Pain including: New onset, Chronic pain and Chronic regional pain syndrome (CRPS)
• Rehabilitation post surgeries (e.g., cardiovascular, cardiorespiratory, cancer related)
• Respiratory conditions such as Cystic Fibrosis, bronchiectasis, pneumonia
• Toe walking (idiopathic, musculoskeletal and neurological)
• Vestibular disorders including: Balance disorders, Dizziness or signs of Vestibular dysfunction, Cytomegalovirus (CMV) exposure in utero. Hearing Impairment including: Cochlear implant, Malformation, Tumour, Perforated ear drum
• Vision impairment’s

The Risks of Excluding Physiotherapy from Support Models

Excluding Physiotherapy from funded support risks missed screening and support for these above listed conditions - including (but not limited to) neuromuscular disorders, cerebral palsy, developmental dysplasia of the hip, neurological conditions, structural foot abnormalities, and hip and knee conditions such as Perthes disease or slipped upper femoral epiphysis (SUFE). It also risks missed management and prevention of spasticity, contractures, scoliosis, and impaired lung health and function in respiratory conditions such as Cystic Fibrosis. These are all conditions that require timely and specific supports.

The following examples illustrate the significant value Physiotherapy has provided to children and families:

Under the changes currently proposed — in which Physiotherapy is not included, support is provided exclusively through schools, and Autism/GDD supports are diverted through a separate scheme — every one of these children would have come to significant harm.

What Is Needed

1. Keeping choice and control in the hands of children and families, allowing for flexibility in service delivery. Families should be able to decide what therapy they access, including its location and frequency, in conjunction with the guidance of their therapist’s recommendations.

2. Maintained flexibility in how Foundational and Disability Supports are accessed — including the reduction of stated supports in NDIS plans, maintaining the option for therapy to be accessed outside of schools (including under Thriving Kids). Providing opportunities for Public Health and the Private sector to continue to provide supports for children, young people and families under NDIS and/or subsidised means.

3. Additional funding for public systems, and incentives that retain Health and Education services within regional and remote communities.

4. Increased community-led programs and spaces in which Allied Health is welcomed.

5. Collaboration and discussion with all Allied Health professions — not only Psychology and Occupational Therapy in decision making for Foundational and Disability Supports.

6. Acknowledging the equal weight of all multidisciplinary team (MDT) therapists within the NDIS. In addition to better understanding that different disciplines offer different services.

7. Having plan reviews conducted by Delegates who are themselves health professionals, with a greater knowledge and understanding of disability and health.

8. Improved communication and collaboration pathways between the NDIA, service providers, and public health, to achieve collective outcomes.

9. Consistency with the UN Right to Health and the right to the conditions necessary to achieve it. This means health services must be available, accessible, acceptable, and of good quality, for all, without discrimination. For children and young people with disability, this requires:

   • a. Available — sufficient Allied Health services to meet actual need, including for children with GDD and Autism/ADHD facing reduced support under Thriving Kids.

b. Accessible — services within physical and financial reach for all families, including rural and lower socio-economic communities. An exclusive single-provider model risks removing this where no local alternative exists.

c. Acceptable — services responsive to individual and family circumstances, not a one-size-fits-all model.

d. Good quality — delivered by appropriately trained, regulated professionals, not absorbed into workforces without equivalent clinical training.

Conclusion

History shows that when governments have centralised decision-making authority over families’ lives — placing it with institutions rather than the people directly affected — the outcomes have too often failed those they were meant to protect, even when framed as being ‘in their best interest’. Policies that reduce family choice and control, however well-intentioned, carry real risks that deserve careful scrutiny before implementation.

Supports for children should remain flexible, allow for a multidisciplinary approach, be determined by the child and their caregivers, and be provided in that individual’s best environment.

The proposed changes will negatively impact the health of our community, the quality of life within our community, and employment rates within our community, and will succeed only in cementing our community’s reputation as a ‘black spot’ for children’s health in NSW.

I thank the Committee sincerely for its time in considering this submission, and for the opportunity to contribute the perspective of a local clinician working directly with these children and families every day. I would welcome the opportunity to provide further information or appear before the Committee, should that be of assistance.

Sincerely,

Jamie Goodman BPhty, MPhtyPaed Physiotherapist PHY0002246227

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