NDIA Accountability Project

Supports for children and young people with disabilities in New South Wales

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Submission No 24

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

Organisation: Speech Pathology Australia Date Received: 23 April 2025

Submission to Select Committee on Foundational and Disability Supports Available for Children and Young People in New South Wales

23/04/2025

Contact: Dr Jennifer O’Connor General Manager, Policy, Advocacy and Government Relations policy@speechpathologyaustralia.org.au

Submission to Select Committee on Foundational and Disability Supports Available for Children and Young People in New South Wales 1

About Speech Pathology Australia

Speech Pathology Australia is the national peak body for speech pathologists in Australia, representing more than 15,000 members. Speech pathologists are university trained allied health professionals with expertise in the diagnosis, assessment, and treatment of communication and swallowing difficulties. The Association supports and regulates the ethical, clinical and professional standards of its members, as well as lobbying and advocating for access to services that benefit people with communication and swallowing needs.

Submission to Select Committee on Foundational and Disability Supports Available for Children and Young People in New South Wales 2

Table of Contents

Submission to Select Committee on Foundational and Disability Supports Available for Children and Young People in New South Wales 3

Executive Summary

Children with developmental delay or disability and their families experience inconsistent access to services due to differences in systems, eligibility requirements and a lack of standards for specific minimum levels of service provision in Australia. A nationally consistent support framework is required to ensure that the diverse needs of these children are met. This framework must be adequately resourced, through a gradual implementation process to ensure success.

Foundational Supports must include a robust, inclusive, and adaptive system that integrates with mainstream systems and supports children aged 0-9 years, their families, and the workforce that serves them. Allied health professionals, such as speech pathologists, play a vital role in supporting children’s developmental needs through targeted, evidence-based interventions delivered flexibly. It is critical that the entire workforce, including the private sector, is involved in the implementation of Foundational Supports to ensure that there is a skilled workforce available to provide these services.

Foundational Supports for children and their families must consider both the needs of the child with disability or developmental concerns and the family. Supports for Aboriginal and Torres Strait Islander peoples must be culturally safe and appropriate to the needs of that person and Community. To provide supports where children learn and grow, the community workforce, such as workers in early childhood education and care settings must be upskilled. Accessible information is critical to ensuring everyone can navigate the support system effectively.

Service inequities must be addressed by establishing a set of minimum standards that are agreed to by all states, territories and the Commonwealth. Key principles that must be incorporated are highlighted on the next page.

Recommendations

  • A set of minimum standards to be implemented nationally, to ensure equitable access to a system of diverse and flexible supports that are accessible and culturally responsive.
  • Allied health providers must be included within the model as critical to the early identification of delay or disability, in addition to their role in providing early intervention supports.
  • Map existing services and supports sector-wide to inform the development and provision of accessible services and supports that are linked to existing options.
  • Employ a cross-sector approach to the provision of services, involving private, non- government, and mainstream providers to meet workforce demands and ensure quality service delivery that is integrated across the sector.
  • Upskill the workforce in community settings to help identify delay or disability early in a child’s life.
  • Avoid restrictive tender-based models that may exclude smaller providers or innovative services and implement reforms gradually with appropriate support for providers.
  • Systems must provide pathways for family support alongside child-focused interventions.

Key Principles

The Key Principles that should underpin the national standards for Foundational Supports are:

  1. No postcode lottery.

    National minimum standards must be set and monitored to ensure all children with disability or developmental delay have equal access to diverse, flexible, timely and culturally responsive supports that meet their needs—no matter where they live.

  2. Allied health is essential.

    Allied health professionals must be part of foundational supports to identify delay or disability early, support capacity building, and provide vital interventions.

  3. Utilise the whole workforce across sectors to ensure access to care.

    Employ a cross-sector approach to the provision of services, involving private, non- government, and mainstream allied health professionals in health, disability and education systems to meet workforce demands and ensure quality service delivery that is integrated across sectors.

  4. Participants must have choice of providers/services.

    There must be more than one option or provider available for children with disability or developmental delay for families to choose from for their supports. Services cannot be limited to one size fits all programs, panel arrangements, or provider monopolies.

  5. Ensure continuity of care.

    Foundational supports must be timely and integrate smoothly with the NDIS and mainstream systems, such as health and education, with clear referral pathways and seamless transitions within a connected system. Current services that are working well should be accessible as part of foundational supports, particularly in thin markets.

  6. Care must focus on the person with disability or developmental delay, incorporating direct and indirect supports.

    Direct therapy interventions provided by qualified allied health professionals are needed to address the child’s delay or disability needs and allow them to reach their full potential. These supports must be evidence-based and delivered by professionals with the appropriate scope, training, and skills.

  7. Accessible and culturally safe care.

    Supports must be inclusive, including communication-accessible services and complaints processes. Supports for Aboriginal and Torres Strait Islander peoples must be culturally safe and appropriate to the needs of that child and Community.

  8. Streamlined compliance/governance framework.

    The governance of providers of foundational supports must be consistent nationally. Requirements should reflect existing systems, posing minimal administrative and compliance burden, applying equally to both nationally registered and tertiary qualified self- regulated allied health professionals.

These principles form the basis of the following responses to the relevant Terms of Reference.

Responses to Terms of Reference

c) the role of diagnostic services, existing gaps and barriers, and measures to improve effectiveness, availability and access of such services

Recommendations

  • Allied health providers must be included within the model as critical to the early identification of delay or disability, in addition to their role in providing early intervention supports.
  • Upskill the workforce in community settings to help identify delay or disability early in a child’s life.

Early identification is critical, as identified within the consultation paper and the 2024 report by the Productivity Commissioni. This early identification is not always occurring, with long waiting lists to see specialists such as paediatricians and significant out-of-pocket costsii.

Funding structures and programs often require a formal diagnosis or entry via a specific referral pathway. This creates barriers to access and a cascade of significant delays to receiving services and opportunity cost as early intervention is not provided in a timely manner. There is a need for soft entry points to services (e.g. referrals from maternal child health nurses, or early childhood settings).

The Productivity Commission emphasised the importance of early childhood education and care settings as being the first places that may be able to identify delays or potential disabilities in young children. Therefore, workers in early childhood education and care and other community services (such as playgroups and maternal child health nurses) must be part of the system for identification of suitability and need for Foundational Supports. To ensure early intervention does occur early in a child’s life, the Productivity Commission recommended that allied health services such as speech pathology must be integrated within these community settingsi.

The recently released National Framework for assessing children’s strengths and support needs outlines the barriers and proposes a framework for addressing this aspect of care, with a shift away from a focus on diagnosis. Importantly, this framework focuses more on access to a supportive, culturally safe process for families that is centered around function and impactiii to encourage early identification and family empowerment. It discusses the core competencies that are needed to appropriately differentiate support needs and is a recommended resource for this Committee to consider.

d) gaps and barriers to accessing early childhood intervention and their impact on a child’s overall development, health and wellbeing, as well as on their family or carers and other government services and systems

The need for national standards

Recommendations

  • A set of minimum standards must be implemented nationally, to ensure equitable access to a system of diverse and flexible supports that are accessible and culturally responsive.
  • Employ a cross-sector approach to the provision of services, involving private, non-government, and mainstream providers to meet workforce demands and ensure quality service delivery that is integrated across the sector.
  • Map existing services and supports sector-wide to inform the development and provision of accessible services and supports that are linked to existing options.
  • Avoid restrictive tender-based models that may exclude smaller providers or innovative services and implement reforms gradually with appropriate support for providers.

Children, particularly those in remote areas are experiencing delays in diagnosis and access to supportsiv. This inequity of availability of services in different geographical areas is a significant issue for families and caregivers that has been identified in the NDIS Review. This must be addressed through a connected-up system of supports, with national standards that are agreed to by each state, territory and the Commonwealth.

These standards must underpin the development of a service system, with a range of services and supports for children with a disability or developmental concern and their families. This system would involve existing services and supports, and the development of supports to fill the gaps, with clear, accessible information available for families about the service options.

This system must not restrict the type of provider or service that is provided within the framework i.e. It cannot be limited to one type of service, provided only by a specified provider from a panel determined by tender, as this may limit services to large organisations and limit innovative and flexible options. It is essential that the system utilises the full workforce across the non-government, mainstream and private organisations and services, as the people with relevant knowledge and experience working with young children and families are spread across the sector and different service options work for different families.

A sector-wide approach to workforce inclusion is essential to ensure families continue to have choice and control. Relying solely upon panel or tender arrangements could exclude small and medium-sized organisations and businesses from offering targeted supports. This is particularly problematic in thin or specialised markets, such as those serving culturally and linguistically diverse communities, Aboriginal and Torres Strait Islander peoples, or individuals with rare disability types.

The need for family-focused supports

Recommendation:

  • Systems must provide pathways for family support alongside child-focused interventions.

The burdens and challenges faced by families of young children with developmental delay or disability must be addressed. As discussed in the consultation paper, parents and caregivers of children with disability experience barriers to full-time employment.v Parents of children with disability also report higher rates of mental health challenges and relationship breakdownvi. A family may have limited supports and experience financial hardship, family violence and trauma. These factors may affect their ability to access or engage with supports for the child with disability or developmental concerns. Therefore, in alignment with support(s) for the child themselves, there must also be pathways for their families, caregivers and kin to be supported.

Furthermore, the pressure placed upon families to bear the entire burden of caring for their child, and addressing their needs must be acknowledged. The concept of ‘capacity building’ may be used negatively to pressure parents to be therapists and ‘fix’ their child, blurring the role that they have as a caregiver and, in some reports, affecting their relationship with the childvii.

The need for allied health

Recommendation

  • Allied health providers must be included within the model as critical to the early identification of delay or disability, in addition to their role in providing early intervention supports.

Whilst building the capacity of families is part of providing supports for children with a disability, the importance of support from allied health professionals that is directly provided to the child cannot be overstated. Recent research regarding the parent experience demonstrated that parents and caregivers may not wish to be a therapist for their child, and valued health professionals working with their child directly rather than relying entirely upon coachingvii.

Allied health supports are critical to early childhood development, and for children with disability and developmental delay to be able to reach their full potential. Evidence demonstrates that these interventions, particularly when started early, contribute to better long-term outcomes for children with disabilitiesviii. Services must be tailored to the needs of the child with a flexible framework of service and referral options as they may need access to a range of different allied health supports.

Supports cannot only be based around case management and parent coaching. The consultation paper identifies that there is an estimated 57,000 children with sensory or speech needs in NSW, and almost 90,000 have needs in the severe or profound range, therefore tangible, targeted supports provided by trained allied health professionals such as speech pathologists are needed.

These supports can be delivered in a range of ways and settings, including face to face, individually, in groups, and via telepracticeix. There is some evidence that weekly or fortnightly intervention produces similar outcomesx. Thus, while weekly supports may be preferred by caregivers in some cases, flexible service delivery options are needed for different family and service circumstances.

e) opportunities to increase engagement across sectors and improved collaboration across both government and non-government services, including Aboriginal Community Controlled Organisations, early learning services, educational settings and health services

Recommendation

  • Consider impacts of current policies upon access to services.

The way that Foundational Supports would interface between different aspects of the sector must be consistent nationally. Supports may also be community-based and indeed best practice principles indicate that supports should be provided in natural settings where children learn, play and grow to ensure timely and integrated early intervention. Current barriers must be addressed and removed, particularly ‘gatekeeping’ within education systems whereby access to permitted or funded supports is dependent on individual principal choice and control. This has been identified by the Disability Royal Commission as limiting and at times denying children with disability the supports they needxi. Again, there must be a basic level of standards upheld within education and health systems to ensure children do not ‘fall through the cracks’ of inconsistent and piecemeal systems.

Part of this is the need at a societal level to have high expectations for children with disability or developmental concerns to be able to reach their full potential. This will not happen overnight, but as was discussed within the Disability Royal Commission’s Outcomes associated with ‘inclusive’, ‘segregated’ and ‘integrated’ settings for people with disability Report, changes are needed at a policy level to align with the UN Convention on the Rights of Persons with Disability (UNCRPD) and promote inclusion. Additionally, it has been expressed that whole-of- environment and community-based supports are not only inclusive, but protective for people with disabilityxii.

Simply put, inclusion is everyone’s responsibility and supporting children with disability and developmental concerns cannot be entirely the responsibility of their own caregivers and families. The capacity of early childhood education and care-based settings must also be improved, including upskilling this sector to help scaffold other targeted supportsxiii and incorporating allied health supports such as speech pathology within these services.

It is acknowledged that while allied health supports are sometimes provided in clinic-based settings, this may be related to systemic issues, such as a lack of travel funding for the family or provider to conduct home visits; or a policy within a childcare, or educational setting that prohibits external visitors. These policies must be reconsidered in the context of Foundational Supports to meet the needs of children and families. The availability of different environments where families may be able to receive advice and supports are critical; alternatively funding to support travel may be the difference between a family accessing supports for their child, or having to forgo a particular service as they do not have access to reliable transport methods. This issue must especially be addressed within rural, regional and remote areas.

Tailored supports for particular groups

One size does not fit all. Supports and services must be tailored in consultation with culturally and linguistically different (CALD) communities or Aboriginal and Torres Strait Islander Communities. There may be different concepts of disability or difference, and how supports and

services are best delivered. For instance, there may be a preference or need for whole-of- community-based upskilling and supports.

Note that these two groups are often considered together with regard to policy and alternate service pathways, but they are not the same. There must be consideration of the deep history of colonialism, systemic racism and impacts on determinants of health for Aboriginal and Torres Strait Islander peoples with disability. Any new systems of supports must actively address these issues and incorporate principles of cultural responsiveness and respect for Aboriginal and Torres Strait Islander knowledges and ways of being and doing. Whilst people from CALD backgrounds may also experience racism and barriers to accessing supports, including cultural and linguistic barriers these are not the same, and thus the needs of these different communities must be considered separately.

g) workforce issues in the child development and early childhood intervention sectors, including workforce demand and the availability, quality and capacity of existing workers

Recommendation

  • Employ a cross-sector approach to the provision of services, involving private, non- government, and mainstream providers to meet workforce demands and ensure quality service delivery that is integrated across the sector.

The knowledge and expertise of early childhood providers is currently spread across the sector. Therefore, Foundational Supports, in particular targeted supports for young children and their families, must involve the entire sector to retain the full breadth of this knowledge and experience.

Providers who are highly experienced in working with young children and their families are not confined to the not for profit, non-government organisation (NGO) or mainstream workforces in health and education. There are currently (as at April 2025) 4437 Certified Practising Speech Pathologists in NSW, around 60 percent of these speech pathologists report working in the private sector. Indeed, due in part to the advent of the NDIS, many providers who were formerly working in the community or NGOs were required to move to the private sector, as state funded, or block funded Early Childhood organisations were privatised or shut downxiv. Moreover, given the workforce shortages across the allied health sector, the current workforce within the mainstream, NGO, and community segments alone is insufficient, making it essential to also leverage providers from the private workforce.

Workforce retention

Retention of the current workforce, and upskilling of the future workforce must be prioritised. Providers of services for young children and their families must have access to clinical supervision, both to ensure best practice, but also prevent burnout. Burnout is a significant risk to an already overstretched health sector, particularly following the Covid-19 pandemicxv.

Clinical supervision and professional support were identified as being as important as renumeration by early career speech pathologists in Speech Pathology Australia’s Workforce Reportxvi. One research study identified the need for additional training and wellbeing supports for those working within the early childhood space due to the emotional toll of supporting the mental health of families without specific trainingxvii.

When considering significant changes to service delivery, the capacity of the workforce to undertake such changes underpins its potential success. The amount of change that has occurred for providers of supports for children with disability in the last five years must be acknowledged. There have been significant shifts in models of service delivery and requirements of providers, with corresponding financial burden. It has been a tumultuous time for the sector, and it would be prudent to consider principles of change management, with long lead times and supports for providers to adjust and implement further reforms across the sector.

i) any other related matter

System governance

There must be a nationally consistent system of governance, regulation and compliance monitoring for Foundational Supports, so that a worker cannot be banned in one state and then simply move to another jurisdiction and continue to provide services.

It is critical that any provider recognition process is simple and free or low cost, taking advantage of pre-existing structures to avoid bottlenecks and lengthy delays before being able to begin work. For instance, taking advantage of the working with children check process, or Medicare provider number system that is already in place, and recognising qualifications and certification with peak bodies that already provide regulatory oversight.

Allied health professionals are subject to robust quality and safety checks through the National Registration and Accreditation Scheme, and peak bodies for self-regulated professions. Therefore, these two groups must be recognised through the same process for foundational supports to avoid a two-tiered system.

Organisations that deliver early childhood supports must be held to the same standards as allied health providers to ensure quality assurance and workforce stability. For example, employer organisations must provide clinical supervision to individual workers who may be early in their careers, and evidence of a system of clinical governance that is implemented across the whole organisation. A history of delivering early childhood services or a strong reputation alone is insufficient evidence to demonstrate that these elements are in place and cannot be the only measures of suitability to provide targeted supports for young children and their families.

Communication accessible supports & information

Recommendations

  • Develop a database of supports and services that is accessible, and regularly updated.

Speech Pathology Australia supports the statement within the consultation paper that services and supports, including information, must be accessible. This entails not only physical accessibility, such as being able to enter a building, or participate in an activity with mobility aids but also communication accessibilityxviii. Information must be provided in ways that everyone is able to understand and people (including children) with disability are able to get their message across, and interact with the service or support in their chosen communication method.

There were strong recommendations within NDIS Review about the need for a connected system, with information about supports available to families and caregivers. An important part of these connections is an information database of available services. To ensure the information

is reliable, this database must be established and maintained, with regular updates as services evolve. It must be acknowledged that this is not simply an information systems issue, whereby services are poorly advertised, but a systemic one that services do not currently exist or are not accessible.

Evidence

When developing significant policy reform that will have widespread implications, critical assessment must be applied to the concept of ‘evidence’. Evidence used to inform system design must include scientific evidence from peer reviewed literature and information from clinician experience, consumer preferences and the community setting.

Whilst the term ‘evidence based’ is widely used within the early childhood sector to refer to supports and service delivery models, it must be noted that this may not refer to peer reviewed or published research evidence. Rather it may be within the framework of ‘EB4’, that is based upon clinician experience, or service user experience or preferencexix. It is the position of Speech Pathology Australia that:

“Evidence-based practice requires that highest quality research evidence from the most relevant high-quality scientific studies is used in conjunction with clinical expertise, client perspectives and knowledge of contextual factors to inform assessment and treatment… It is important that external scientific evidence, both quantitative and qualitative, is not only consulted to inform decision making, but carefully considered and evaluated.” xx

References

i Productivity Commission (2024) Inquiry Report - A path to universal early childhood education and care - Productivity Commission

ii Autism diagnosis delays surge as families face long waits and rising costs - Source Kids

iii CRC, A., 2024. National Framework for Assessing Children’s Functional Strengths and Support Needs in Australia: Supporting Information, Autism CRC. Australia.

iv NDIS Review (2023) What we have heard report

v Tokić, A., Slišković, A., & Nikolić Ivanišević, M. (2023). Well-Being of Parents of Children with Disabilities—Does Employment Status Matter? Social Sciences, 12(8), 463.

https://doi.org/10.3390/socsci12080463

vi Australian Institute of Family Studies (2008) The nature and impact of caring for family members with a disability in Australia | Australian Institute of Family Studies

vii Pozniak, K., King, G., Chambers, E., Martens, R., Earl, S., Kraus de Camargo, O., … Rosenbaum, P. (2023). What do parents want from healthcare services? Reports of parents’ experiences with pediatric service delivery for their children with disabilities. Disability and Rehabilitation, 46(12), 2670-2683.

https://doi.org/10.1080/09638288.2023.2229733

viii Dimakopoulos, R., Vakalaki, T., Spinou, A., Michopoulos, I., & Papadopoulou, M. (2024). Effectiveness of therapeutic interventions on participation in children with cerebral palsy: A systematic review and meta-analysis. Child: care, health and development, 50(4), e13301. https://doi.org/10.1111/cch.13301; Smythe, T., Zuurmond, M., Tann, C. J., Gladstone, M., & Kuper, H. (2021). Early intervention for children with developmental disabilities in low and middle-income countries - the case for action. International health, 13(3), 222-231. https://doi.org/10.1093/inthealth/inaa044 ; heiw.nhs.wales/files/early-years-health-inequalities-toolkit/

ix Pinkerton, L. M., Murphy, A., Bruckner, E., & Risser, H. (2023). Therapy service delivery for children with disabilities during COVID-19: Parent perceptions and implementation recommendations. Journal of community psychology, 51(6), 2430-2441. https://doi.org/10.1002/jcop.22899

x Varvounis, N., Frost, J., Stott, J., Ward, E., Lefmann, S., Boyle, T., & Boshoff, K. (2020). Weekly versus fortnightly allied health early intervention for children with diagnosed/suspected developmental delay. The Allied Health Scholar. https://doi.org/10.21913/TAHS.v1i1.1570

xi Disability Royal Commission (2023) Final Report - Volume 7, Inclusive education, employment and housing - Part A

xii Disability Royal Commission (2023) Research Report - Outcomes associated with inclusive segregated and integrated settings for people with disability

xiii Community Early Learning Australia (2021) Investing-in-our-Future-25-Nov-2021.pdf

xiv Anaf, J., Freeman, T. & Baum, F. (2024) Privatisation of government services in Australia: what is known about health and equity impacts. Global Health, 20, 32. https://doi.org/10.1186/s12992-024-01036-W

xv Australian Institute of Health and Welfare (2024) Health workforce - Australian Institute of Health and Welfare; Mental Health Australia (2022) Mental Health Day 2022 Info 2

xvi Speech Pathology Australia (2023) Speech Pathology Australia Workforce Analysis Report 2023

xvii Young, D., Gibbs, L., Gilson, K. M., Williams, K., Reddihough, D., Tracy, J., Tonmukayakul, U., & Carter, R. (2021). Understanding key worker experiences at an Australian Early Childhood Intervention Service. Health & social care in the community, 29(6), e269-e278. https://doi.org/10.1111/hsc.13350

xviii Communication access

xix Haynes, R. B., Devereaux, P. J., & Guyatt, G. H. (2002). Physicians’ and patients’ choices in evidence based practice. BMJ (Clinical research ed.), 324(7350), 1350. https://doi.org/10.1136/bmj.324.7350.1350;

xx Speech pathology Australia (2023) Evidence Based Practice (EBP) (p.6)