Thursday 2 October 2025

Committee Secretariat

Standing Committee on Health, Aged Care and Disability

Dear Secretariat

On behalf of the WA Early Childhood Intervention Collaborative (the Collaborative), I am writing to acknowledge the establishment of the Inquiry into the Thriving Kids Initiative and to commend this important step towards improving outcomes for children across Australia.

The Collaborative was formed in 2023 and brings together early childhood and disability service providers, industry bodies, government agencies, and research institutions committed to strengthening service delivery for children with disability or developmental concerns. Meeting every six weeks, we share knowledge, explore best practice, and work collectively towards sector and system improvement in Western Australia. Ability WA is convenor of the Collaborative currently.

In 2023 the Collaborative undertook two important pieces of work:

• A report into the current state (Appendix A) of Early Childhood Intervention in Western Australia – which highlighted:
  • The importance of families receiving information relevant to their community and location
  • That rural and regional areas have fewer experienced ECI professionals and services than is required
  • Some geographic areas are not covered by the NDIS at all
  • Families, especially those with CALD backgrounds, need support to understand information they are given about their child
  • The cost of therapies deters many families from accessing services
  • ECI costs for families go beyond the provision of ECI services (reduced working capacity, travel costs)
  • There are underutilised cost-effective models of care available (groups and tele practice)
  • The financial model of ECI services means that some parents do not get value for money from their NDIS plans

• There needs to be an increase in the number of Aboriginal health care workers

• Aboriginal liaison officers improve outcomes for Indigenous families

• ECI service provision needs to be more sensitive to intergenerational trauma and marginalisation

• First Nations communities have a high level of mistrust towards the government

• ECI services lack integration

• The system focusses on therapy provision and not supporting the family

• Families need support as much as their child

• There is a high rate of turnover for the allied health professional workforce central to the provision of ECI supports

• There is an insufficient number of ECI practitioners with appropriate ECI experience in rural and regional areas

• Persistent vacancies in the WA ECI workforce prevent full utilisation of funding and facilities, even when the consumers have means

• Services cannot meet a growing demand for EC assessment and intervention

• ECI has a clinic-based focus, than evidenced more effective service delivery in natural settings

• The current ECI ecosystem in WA is siloed

• WA is producing world leading research in ECI

• We enjoy a passionate and committed workforce dedicated to providing outstanding care

• Increasingly, service providers are coming together to collaborate, as evidenced by the Collaborative and it’s growing membership.

• A desired future state report (Appendix B) “Starting the Conversation - the Future of Early Childhood Intervention in Western Australia”. Through a “theory of change methodology, the following were identified as necessary prevailing characteristics of a functional and effective ecosystem, and the report details how this can be realised:

  • Children and families receive support and services in their natural environment where possible.
  • Families know best how to support their children and access quality ECI services
  • Families are supported to navigate the ECI system
  • Children and families receive coordinated and integrated service
  • ECI services are based on best practice
  • The supply, distribution and skill of the ECI workforce is sufficient to meet demand

Both these reports hold true today, are attached, and are commended to the Committee and Secretariat for consideration. Members of the WA Early Childhood Intervention Collaborative would be happy to provide additional context as requested. I would be pleased to facilitate this and can be contacted redacted

Yours sincerely

redacted

Jacquie Thomson

Convenor, WA Early Childhood Intervention Collaborative

Appendix A

Early Childhood Intervention in Western Australia – Current State Report

August 2023

redacted

ECI Current State Report

CONTENTS

1. BACKGROUND AND CONTEXT 4

1.1 Background 4

1.2 The Early Childhood Intervention Futures Collaborative 5

2. EARLY CHILDHOOD INTERVENTION 10

2.1 Early Childhood Definition 10

2.2 Early Childhood Intervention 10

2.3 The Foundations of Best Practice ECI 10

2.4 Historical Context of ECI in Western Australia 14

3 CURRENT STATE APPROACH 17

3.1 Methodology 17

3.2 Scope 18

4 EARLY CHILDHOOD INTERVENTION CURRENT STATE ECOSYSTEM 20

4.1 Framework 20

4.2 Framework Definitions 21

4.3 Ecosystem Mapping 21

5 CHALLENGES AND OPPORTUNITIES 24

5.1 Challenges for the ECI system in WA 24

5.2 Overall Themes 30

6 NEXT STEPS 36

7 GLOSSARY 38

8 REFERENCES 40

APPENDICES 43

Appendix 1: Workshop participants 43

Appendix 2: The Early Childhood Intervention Futures Collaborative – Terms of Reference 44

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ECI Current State Report

TABLES

Table 1 - Scope 16

Table 2 - Categorisation Definitions 19

Table 3 - Glossary 36

Table 4 - Organisations represented in the first Future State Workshop 41

FIGURES

Figure 1 - Persisting issues in the current system 4

Figure 2 - ECI ecosystem framework 18

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Section 1: Background and Context

ECI Current State Report

1. BACKGROUND AND CONTEXT

1.1 Background

There is consensus within the Early Childhood Intervention (ECI) profession that the current ECI system in Western Australia is suboptimal and not adequately meeting the needs of WAn children and their families. Major strides have been made by Australia in the last 15 years in the form of investment and policy. However, WA’s existing system still faces challenges in workforce capability and retention, service interconnectivity, and community engagement.

The care of children with developmental delays and/or disabilities is adversely impacted by a range of persisting issues in the current system which are depicted below:

1. Inequitable access to services. Children and families may be disadvantaged in their ability to access the services they require Due to where they live, their cultural background or socio-economic status.

redacted connected system. redacted siloed nature of the ECI redacted

3. Therapy service centric system. The current system is redacted professional therapy services, rather than to the supports that immediately surround the family, which is shown to improve outcomes.

4. Workforce turnover and shortages. Workforce challenges including general shortages and lack of ECI redacted optimal outcomes for children andfamilies.

5. Services cannot keep up with demand. The system is under strain and children and families in both the public and private sectors may wait 12-18 months to access the services they require. require.

Figure 1 - Persisting issues in the current system

ECI Current State Report

In response to the challenges with the current system, a group of industry leaders established The Early Childhood Intervention Futures Collaborative (The Collaborative). The Collaborative has a goal of setting the vision to inspire a better future for ECI services in WA. As part of this work, The Collaborative sought to better understand the current ECI environment and document the key challenges and opportunities of the system through completion of a current state assessment.

The purpose of this report is to summarise the approach taken to complete the current state assessment, provide an overview of the challenges and opportunities that have been identified and to act as an input for the design of the ideal future state for ECI in WA.

1.2 The Early Childhood Intervention Futures Collaborative

Recognising that the challenges with the current ECI system in WA required a collaborative system wide approach to solve them, the Early Childhood Intervention Futures Collaborative (The Collaborative) was formed in March 2023. The Collaborative is comprised of industry leaders in WA from early childhood intervention service provision, policy development and research sectors. The inaugural meeting of The Collaborative identified the strengths and weaknesses in WA’s ECI services. This discussion shaped the vision of The Collaborative and highlighted opportunities for system coordination, advocacy, and consumer engagement.

The Collaborative seeks to:

• Oversee the design and development of an ECI Strategy and associated plan for Western Australia that supports best practice, and draws upon relevant sector data, research and information, demand, and emerging trends.
• Act as the Peak Body for Early Childhood Intervention in Western Australia, including children aged 0-7 years, together with their families, with a specific focus on earlier intervention during the first 1000 days from conception.
• Inform key research related to Early Childhood Intervention.

The Collaborative’s vision is: A coming together of like minds as a voice for West Australian children with developmental differences and their families. The Collaborative will provide Thought Leadership to State Government while guiding policymakers and influencers.

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ECI Current State Report

redacted

The Collaborative has been established on the following principles:

• Early Childhood Intervention is the responsibility of multiple sectors and requires a cross government integrated approach;
• Family voice will be an integral part of the work we do;
• All members of the Collaborative will have the best interests of WA children at the centre of all discussions, acknowledging any conflict of interest;
• Shared responsibility is acknowledged and respectful conversations will enable us to move forward towards the collective vision;
• Western Australia’s leading research will drive the outputs of this Collaborative;
• Inclusive practices will form an integral part of all work and the Collaborative will consider ‘at risk’ populations in the State such as:
  • Regional and remote geographical locations
  • First Nations populations
  • Culturally and Linguistically Diverse populations

The Terms of Reference for The Collaborative are provided in Appendix 2.

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ECI Current State Report

As the Collaborative gains momentum in its activities, membership is continuing to grow. As of July 2023, members included senior representation from:

• Department of Health: CAHS
• Department of Communities
• Telethon Kids Institute
• Wanslea
• Kiind (formerly Kalparrin)
• Ngala
• Ability WA
• Curtin University
• PRECI (Professionals and Researchers in Early Childhood Intervention)

In seeking to achieve its vision, the Collaborative initiated two discrete pieces of work:

1. Current State Assessment: To provide a better understanding of the existing challenges and opportunities in the ECI landscape, the Collaborative undertook a current state assessment. This included:

   • Desktop review and environmental scan of ECI services and best practice.
   • Development of an ECI framework by which the current state could be understood.
   • Identification of the challenges and opportunities of the current state.
   • Validation of findings engagement with industry leaders and consumers.
   • Development of a report outlining the current state and next steps for the Collaborative.

The current state report delivers a comprehensive view of the existing ECI environment and highlights disparities in best practice and equity of access. It also identifies key pain points for children and families. The current state assessment will also be used to inform the design of the ideal ‘future state’.

2. Future State Design: In seeking to develop a clear strategy for the future state of ECI in Western Australia, the future state work package will outline the Collaborative’s vision of “Where we want to be”. The Future State comprises collaboratively designed and tested ‘Theory of Change’ for the Future State of ECI in WA. Underpinned by robust consumer and stakeholder engagement, the future state illustrates an accessible ECI system that puts families at the centre and addresses the existing unmet needs in the system.

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e Report

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Section 2: Early Childhood Intervention

ECI Current State Report

2. EARLY CHILDHOOD INTERVENTION

2.1 Early Childhood Definition

The World Health Organisation (WHO, 2020) defines early childhood as a time from conception up until eight years of age when rapid growth and development takes place in the brain. To grow and develop optimally, children need to receive nurturing care. This means that they have access to adequate nutrition and good health, feel safe and secure, and have opportunities for learning, starting from birth. It is primarily the family who provides the nurturing care that children need to develop in the earliest years.

2.2 Early Childhood Intervention

Early Childhood intervention refers to the services and supports provided for babies and young children with developmental delays and / or disabilities along with their families (CDC, 2023). Intervention reduces the impact of a developmental delay or disability on a child by providing the primary caregivers with the appropriate knowledge, skills, and support. For optimum outcomes, it is essential to begin early childhood intervention as soon as possible (Better Health, 2015 & ECIA, 2016).

Types of intervention may include:

• Occupational Therapy (can help with achieving independence and participating in meaningful activities)
• Physiotherapy (can help with movement and coordination)
• Speech Pathology (can help with communication and mealtimes)
• Dietetics (can health with nutrition and mealtimes)
• Psychosocial supports (psychology and social work) for families

Service Provider Experience

“If a child does receive early intervention, they’re less likely to need ongoing therapy services for the rest of their life. We often see children who do get discharged require less ongoing support.”

2.3 The Foundations of Best Practice ECI

Early childhood development is important for moral as well as pragmatic economic reasons around the world. Countries where families experience poverty face diminished economic capacity. Individuals who have poor early development have an estimated 26% loss in adult income (Richter, Black & Britto et al, 2019). This vicious cycle perpetuates poverty and intergenerational early childhood development problems.

The Nurturing Care Framework

The Nurturing Care Framework sets a global benchmark for early childhood development. The Nurturing Care Framework identifies the first 1000 days of a child’s life as imperative to future success. This framework has been proposed as a blueprint upon which policies, programs, and services should be planned and built, to ensure children are given the best possible start to life.

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ECI Current State Report

The Nurturing Care Framework acknowledges that early childhood development covers children up to eight years old. However, it focuses on the first 1000 days of life, as these are shown to be a particularly sensitive period for childhood development (WHO, 2018). The philosophy of Nurturing Care is built around five components:

• Adequate nutrition.
• Responsive caregiving.
• Security and safety.
• Opportunities for early learning.
• Good health.

The Nurturing Care framework states five strategic actions for countries to align with the best practices:

• Lead and invest.
• Focus on families and their communities.
• Strengthen services.
• Monitor progress.
• Use data and innovate.

Since publication of the framework there has been a global uplift in early childhood focused policies, programs, and services. Application of The Framework and its Strategic Actions has had positive effects on child development at every stage, all the way up to adolescence. Some of the most impactful effects can be seen from data from developing countries (WHO, 2023). An Early Years Strategy is currently under development by the commonwealth government to better align services in Australia to reflect the globally recognised importance of the first 1000 days (DSS, 2023).

Early Childhood Intervention Australia (ECIA) Best Practice

In 2015, ECIA (now known as Reimagine Australia) was commissioned by the Commonwealth Government to develop the “Best Practice Guidelines for Early Childhood Intervention”. The guidelines help early childhood intervention practitioners deliver robust, evidence-based supports to achieve the best outcomes for both children with developmental delay and/or disability, and their families (Reimagine, 2023). The National Disability Insurance Scheme ( NDIS) have utilised ECIA best practice guidelines as the basis for their early childhood approach.

Based on a review of international and Australian literature and consultation with the ECI sector four quality areas and eight best practice principles underpin the best practice guidelines:

Quality area 1: Family

1. Family-Centred and Strengths-Based Practice - Family is at the centre of all services and supports.
2. Culturally Responsive Practice - All families are different and unique and will be treated accordingly.

Quality area 2: Inclusion

3. Inclusive and Participatory Practice - The child is fully included and participates meaningfully in home and community life.
4. Engaging the Child in Natural Environments - The child practises and learns new skills every day.

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ECI Current State Report

Quality area 3: Teamwork

5. Collaborative Teamwork Practice - The family works together with practitioners as a team around the child.
6. Capacity-Building Practice - Everyone’s skills and knowledge are built upon.

Quality area 4: Universal Principles

7. Evidence Base, Standards, Accountability and Practice - ECI practitioners will focus on what the family wants for both their child and for themselves.
8. Outcome Based Approach - All services and supports are of a high quality.

Considerations for the provision of care in Australia

One of the biggest challenges for Australia remains in the siloing of services and lack of connectivity across a system to fully support every aspect of ECI (Independent Review of the NDIS, 2023). This was corroborated in the findings from the workshops, where stakeholders identified some of the biggest shortfalls in family/ community supports.

An inclusion-based approach to ECI strengthens the components outlined in the Nurturing Care Framework. This approach emphasises the benefit of providing therapies and services in environments that are natural and comfortable for the child and their family. This includes school, day care and the home. Additionally, it strongly encourages collaboration throughout the continuum of care, between teachers, therapy providers and community support (Dew et. Al., 2014).

Contemporary research supports the efficacy of such an approach. A recent paper authored by Dr Tim Moore goes further, highlighting fruitless strategies employed in the past. Notably, unimaginative approaches aimed at broadening services and increasing funding are ineffective at generating improved outcomes for children and their families (Moore, 2021). Moore summarises that nurturing care can only be provided to children whose families are in turn receiving nurturing care. Some of many key enablers Moore identified for successful ECI are:

• Positive early caregiving relationships.
• Exposure to a range of other adults, families and children.
• Opportunities for children to play and explore.
• Opportunities to participate meaningfully in the home, community and ECEC settings.
• Positive sense of culture and identity.

Dew et. al., from the University of Sydney also concluded an inclusion-based approach has potential to be an effective approach to service delivery. Interventions should take place within communities and environments where children and families feel safe. Furthermore, the entire family should be treated as the client, to be taken on the therapeutic journey. For the best outcomes, a deep understanding of the family, their routines and relationships is needed to deliver effective interventions. For maximum buy-in from all parties, the goals of intervention need to consider the needs and priorities of the family (Dew, et al., 2014).

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Family Experience

In Home Baby Intervention Service (IBIS)

IBIS is available to babies considered at risk of neurodevelopmental conditions up to the age of 24 months. This innovative family centred program monitors the baby’s developmental progress and offers advice and strategies to support their development, well-being and participation within everyday routines.

Child: Luca Diagnosis: Global Developmental Delay

Luca was almost 12 months when he started services with IBIS; he was referred due to concerns of global developmental delay. Luca’s family goals were for him to learn how to sit, crawl, cruise and walk as well as work on his communication skills and fine motor skills. Luca was provided with specialised therapeutic equipment including a corner chair and a language support board. He was also offered regular Physiotherapy, Speech, and Occupational Therapy Sessions in his home environment. Within only two months of therapy, Luca learnt how to sit by himself and was able to get himself up into the crawling position. He started saying ‘oh’ for go and playing beautifully with his parents, with joint attention and an expectant pause in games. Luca learnt how to turn pages in books and pick objects up in his fingers, with development of his fine motor skills. He also started to pull himself on furniture, which really excited his parents as this was a significant milestone for Luca.

“IBIS has been amazing for our son. Since starting the program, we have seen so much improvement in all areas of his development. We love the convenience of having the at home appointments and the staff have been fantastic. We feel like we can contact them anytime with queries or questions we have, and everyone is more than happy to help. The in-home sessions are also great in terms of being shown how fo use things we already have to help Luca with his development, as well as access to equipment that we don’t have, such as a standing frame and corner chair. We feel so lucky to

ECI Current State Report

have access to a service like IBIS as we feel like the regular appointments have made such a huge difference for his development already and we can’t wait to see how much he progresses with this program.”

2.4 Historical Context of ECI in Western Australia

Early childhood intervention has been an established system for younger children for decades. The subject is an area growing in parallel with our understanding of how early childhood trauma and disability impact development and outcomes later in life. Although its earliest origins predate the 1960s (Shonkoff & Meisels, 1990) the last 15 years has seen a substantial effort from law and policy makers to meaningfully affect ECI.

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2006. The WA Parliament passed the Commissioner for Children and Young People Act.

• The Commissioner has a strategic focus on children’s rights and services in the state of WA. The Commissioner recognises the need and benefit of ECI, advocating to improve services and supports for children and young people (CCYP, 2019).

2009. Council of Australian Governments endorsed Investing in the Early Year - A National Early Childhood Development Strategy

• The Strategy set a vision for giving children the best start to life and recognised the developmental importance of the first 8 years.
• The Strategy identified key risks and protective factors and emphasised a holistic approach referencing “It takes a village to raise a child” (COAG, 2009).

2013 Federal parliament passes the NDIS Bill

2014 NDIS trial in WA Perth Hills

2018 NDIS Starts rollout into other parts of WA

2019. Review of the National Disability Insurance Scheme Act

• Noted that ECI approach underpins the insurance approach of the NDIS however ECI services and supports were reported to be too one dimensional. Stakeholder feedback stated not enough consideration was given to the full breadth of support and services that could/should be provided for ECI (Tune, 2019).

2020 NDIS available to all Australians

2023. What we have heard report from the NDIS

• Found that the needs of children and families are not being considered holistically.
• Heavy reliance on therapy and not enough on support in the home and community (IRNDIS, 2023).

Early Childhood Intervention in WA: Key Milestones

2016. Reimagine Australia published the ECIA National Guidelines

• Reimagine Australia (formerly known as ECIA) is the peak body for ECI in Australia. It created the National Guidelines in anticipation of the NDIS rollout to communicate best practice and provide a universal resource for use by practitioners across Australia.
• The Guidelines were developed around work from eminent subject matter experts and were built around 4 key quality areas: Family, Inclusion, Teamwork and Universal Principles (ECIA, 2016).

March 2023 ECI Industry experts meet to identify gaps and decide to found The Collaborative

2023. Early Childhood Intervention Futures Collaborative WA Current State Assessment

• Comprised of ECI service, policy and research leaders in WA. The Collaborative have a vision to provide thought leadership to State Government and other key stakeholders to guide ECI strategy and support best practice.

2023. Early Years Strategy from the Commonwealth Government under development

• Seeking to be a road map to guide early years’ policies and programs across the Commonwealth for the next decade by providing a framework for reform (DSS, 2023).

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Section 3: Current State Approach

into the Thriving Kids initiative

ECI Current State Report

3 CURRENT STATE APPROACH

3.1 Methodology

To better understand the current environment and document the key challenges and opportunities of the ECI system in WA, a current state assessment was completed.

The current state assessment involved a desktop review of existing services to understand the ECI ecosystem, development of a framework by which the ECI system could be understood, consultation to understand and validate the current challenges and development of a final report. The findings from the current state assessment will be used to inform the development of a future state vision. The approach to each stage of the current state assessment is outlined below.

1. Desktop Review and ECI Ecosystem

i. A desktop review was undertaken to review relevant research, thought leadership, industry reports, and interjurisdictional models. ii. Leveraging the findings from the desktop review, a directory of organisations and institutions within the WA ECI space was developed. The directory collated information of each of the organisations and institutions such as:

• Primary categorisation / function (in line with the ECI framework)
• Overview of relevance to ECI
• Services provided
• Service catchment
• NDIS registered status
• Funding

2. Map the ECI Ecosystem Framework

i. To support further analysis of the current state, a framework was designed to group and categorise the current state ecosystem. The ecomap was developed through a process of analysing the services identified, assessing how they could be logically grouped, and leveraging best practice principles in ECI (e.g., family centred care). ii. The framework identifies nine distinct categories within the ECI ecosystem that organisations operate within:

• Close Family Supports
• Informal Supports
• Community and Mainstream Supports
• Professional Therapy Services
• Advocacy & Navigation Services
• Education
• Research
• Compliance and Regulatory Bodies
• Policy and Legislation

iii. The categories were used primarily for two purposes:

• To group and analyse the spread of current organisations in the ECI Ecosystem by function;
• As a tool to structure discussions and gather feedback on the current challenges and issues within the current ECI system in WA.

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ECI Current State Report

The framework is included in section 4.1. See figure 2.

3. Current State Validation and Challenges

i. To identify challenges in the provision of ECI services in WA, ECI industry experts were invited to a workshop to explore the challenges and opportunities of the current system. The experts viewed the ECI framework through five different influencing factors. Leveraging their knowledge, experience and expertise, attendees explored how a child and their family might be affected by each perspective:

• Geography.
• CaLD status.
• Socioeconomic status.
• System maturity.
• First nations.

ii. Using the framework as a guide, attendees highlighted the key challenge areas for each influencing factor. These findings were used to highlight key challenges and shape the next steps for The Collaborative.

4. Final Report

i. Bringing together outputs from workshops, insights from consultations and findings from research, the final report presents the analysis of the current state of ECI services in WA.

ii. Development of the report involved engagement and collaboration with membership of The Collaborative to provide further insights into the lived experiences of consumers.

iii. The report provides background on ECI, describes the current state, outlines a case for change, and identifies the next steps for The Collaborative.

iv. The report will be used to baseline the design of a future state report (which is beyond the scope of this document).

3.2 Scope

The scope of the current state assessment was as outlined below.

Table 1 - Scope

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Section 4:

State Ecosystem

ECI Current State Report

4 EARLY CHILDHOOD INTERVENTION CURRENT STATE ECOSYSTEM

4.1 Framework

To communicate the complexity and structure of the current ECI ecosystem, a framework was designed to conceptualise the best practice and supporting mechanisms surrounding ECI.

Organisations and institutions currently operating in ECI were categorised and grouped based on their operational focus, relative to the framework below. Following current best practice, the framework has the child and family at the centre of the model and different forms of support wrapping around the centre. The most effective and influential supports sit closer to the child and family.

This framework serves as a structure by which the current system and its challenges can be understood and communicated. The framework was designed to be used in parallel with the ECI current state ecosystem mapping. The mapping lists all the organisations and institutions which operate within the WA early childhood intervention space while the framework visualises the relationship between the child and family and the organisations and institutions.

Figure 2 - ECI ecosystem framework

ECI Current State Report

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ECI Current State Report

4.2 Framework Definitions

Each layer of the of the ecosystem framework has been defined.

Table 2 - Categorisation Definitions

4.3 Ecosystem Mapping

Based on desktop research, a directory of organisations and institutions that operate within the WA early childhood intervention space was collated. Each organisation is aligned to a primary and secondary area (if relevant) of the ECI Ecosystem framework. The focus is on organisations and institutions that operate within Western Australia; however, some national organisations and institutions were included where their influence and impact in WA was considered significant.

The directory was built in an Excel spreadsheet and each entry required the following information:

• Organisation Name
• Organisation Type
• Primary Categorisation

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• Secondary Categorisation
• Organisation Description
• Services Provided
• Service Area
• Target Cohorts
• Access Pathway
• Waitlist Time
• NDIS Registered
• Modality
• Funding
• Relevant Research

The directory was developed as a point in time baseline to inform analysis and discussion of the challenges and opportunities of the current system. In the future, the directory may be leveraged to inform development of a services directory as part of the future state strategy. To achieve this the directory will need an owner and to be actively maintained to ensure it remains up to date and relevant.

redacted

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Section 5: Challenges and Opportunities

ECI Current State Report

5 CHALLENGES AND OPPORTUNITIES

To establish a comprehensive understanding of the key challenges and opportunities of the current state of ECI in Western Australia, The Collaborative invited ECI industry experts to a workshop where attendees shared their lived experiences, knowledge, and learnings.

Outputs from the workshop identified challenges, gaps, and opportunities in the WA ECI system which are substantiated by lived experience of families which have been included throughout this summary. The experts also highlighted strengths to be leveraged and built upon to help drive meaningful changes. These outputs featured in the report have also gone on to frame discussions in Future State workshops.

Family Experience

“Whilst we were accepted into the local “service” for speech support, this was estimated to be a 10 month wait at the time of acceptance. 10 months for a child at risk, and determined to have been demonstrating a delay, was unimaginable and completely disheartening for us as parents. Similarly, the physio referral was a lengthy delay. We had previously seen a private physiotherapist, costing us close to $250. These lengthy delays placed significant stress on us as parents. We knew he needed support primarily with physiotherapy and speech, and we were determined to get him access, though the thought of funding this on one income (as a consequence of prematurity) became concerning. We became overwhelmed considering how to find a specialist with experience in the early years, and knew we were going to need to tell his story repeatedly and liaise with even more people. It felt messy and stressful.”

5.1 Challenges for the ECI system in WA

To identify areas of improvement in the WA ECI system, experts in their field assessed system maturity and equity of access through the lenses of geography, CaLD status, socioeconomic status, and First Nations peoples.

Key themes from the discussion are summarised for each of these areas below.

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Equity of Access - Geography

Where a child and family lives can impact their ability to easily access the range of services they require. It is not uncommon for families to choose to relocate to a metropolitan area when a child receives a diagnosis. More remote communities have less service providers. It was noted that in general, there is a lack of professional understanding of best practice in Early Childhood Intervention across the state.

It is important that families receive information relevant to their location and community. Western Australia covers a large geographic area and communities vary greatly. This results in some families receiving information that may not be relevant to where they live. This is further compounded as there are limited navigation links to facilitate the continuum of care between metropolitan services and regional resources. Location specific information is required seeing as services available, for example, in Nedlands will be different to Collie.

Rural and regional areas have fewer ECI experienced professionals and services. With fewer ECI experienced professionals, ECI services in rural and regional areas may not offer the same quality of care received in metro areas. Many industry workers prefer to live and work in metropolitan areas with the highest demand and most developed infrastructure. A compounding challenge is evident in the education system where rural / remote schools cannot spare the teaching capacity to accommodate children with higher needs, leading to children with more acute sensory or behavioural needs sometimes excluded from school because teachers are not trained or equipped to support them in line with best practice.

Some geographic areas are not covered by the NDIS at all. NDIS privatisation has led to variable support depending on location. Greater incentives are required to keep Allied Health Professionals (AHPs) working in rural / remote areas to combat turn over and persistent vacancies. The lack of training and support for AHPs working in rural / remote areas manifests as less “speciality” service options being available outside of metro areas. AHPs working in rural / remote areas with the correct set of experience and skills cannot meet the demands on their services and often families cannot access the frequency of therapy they require.

Total Population - 2,660,026

Geographic area - 2,527,013 km²

Population density - 1 person / km²

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ECI Current State Report

Just over 7 million (27.6%) of Australia’s population was born overseas (Australian Bureau of Statistics, 2021).

40% of refugee arrivals in Australia are children. (Davidson, 2004)

5.8 million people (22.8%) reported using a language other than English at home (Australian Bureau of Statistics, 2021).

Refugee children are more likely to require intervention services (Davidson, 2004).

Equity of Access - Culturally and Linguistically Diverse

Children and families who have a culturally and linguistically diverse background find it more difficult finding services which are appropriate for them. Additionally, different cultures have different understandings of disability and varying levels of stigma associated with disability.

Families need to understand information they are given about their child. There is a lack of interpreters available in WA, both over the phone and in-person. These interpreters may have issues understanding medical terminology / therapy jargon and are not always able to translate into the family’s preferred language. In small communities, interpreters may be known to the family, and families therefore may be reluctant to be represented by someone they know. Finally, interpreters are expensive and appropriate ones may not be available in Western Australia.

Some communities have a fear or mistrust towards services due to previous experiences and therefore are reluctant to engage around their child.

Families may face issues obtaining visas when their child has a disability, and they may have challenges / delays accessing the same funding as permanent residents / citizens. Without appropriate support, CaLD families may struggle to understand the residency criteria for NDIS.

A family may not be able to access support in their dialect as resources are translated into a limited number of languages. Consideration of the parent or primary care giver’s level of literacy is also needed as they also may not be able to read in their own language.

Equity of Access - Socio-economic status

The socioeconomic status of a family affects how many services a child may be able to receive. Some families might not have the financial resources to access private services while on the waitlists for government funded services, or to top up their government funded services by accessing additional services beyond what is covered on their NDIS plan. Furthermore, some families struggle with meeting the costs involved with travelling to a clinic.

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ECI Current State Report

The cost of therapies deters many families from enrolling in services. Therapy service providers receive a large volume of interest, however there is only a very small conversion rate once families become aware of the costs involved. For example, a private therapy route for diagnoses of autism is an expensive process costings thousands of dollars which becomes prohibitive for many families.

ECI costs for families goes beyond the price of ECI services. Not only is there is a financial impact on families for the cost of services, but prioritisation of their child’s health often means they are able to work fewer hours of paid work. As a result, many parents run into financial hardship due to a reduced income and increase demands on their time accessing needed health services. Costs associated with travel to appointments (vehicle ownership, parking, petrol, etc) can also be prohibitive for some families.

There are underutilised cost effective models of care available. Best practice shows that there is significant value in group therapy for children. This form of delivery is more cost effective than one to one therapy and can be a good solution for some families. Another cost effective option for some types of care is tele-practice, This may not always be appropriate nor accessible due to a family’s access to devices and with challenges in reliable internet connection to the internet.

The financial model of ECI services means that some parents do not get value for money from their plans. Some AHP services have different rates for private paying clients vs NDIS funded clients. Once a child receives a NDIS plan, the cost of therapy is sometimes doubled to match NDIS rates.

Generally, disadvantaged areas tend to be in regional and remote communities, while advantaged areas tend to be in major cities (Australian Bureau of Statistics, 2021).

Individuals who have poor early development have an estimated 26% loss in adult income (Richter, Black & Britto et al, 2019).

There is a positive correlation between education, SES, and health outcomes (Clark, Damon, Royer, 2013).

It has been estimated that by age five, chronic poverty is associated with a 6- to 13-point IQ reduction (Brooks-Gunn, J., and Duncan, G. J. 1997).

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Equity of Access - First Nations

Australian Aboriginal communities have their own unique traditions and culture. Services need to be culturally safe and adapt to the ways First Nations peoples communicate, interact with one another, and perceive the world around them. For services to be effective, they need to be community lead.

There needs to be an increase in the number of Aboriginal health care workers. Aboriginal health care workers are more effective in providing and in supporting access to appropriate ECI services to First Nations communities as they understand the intricacies of their culture. To meet demand in First Nations communities, more supports should be provided to support First Nations people wanting to study and work in ECI.

Aboriginal liaison workers improve outcomes for Indigenous families. Aboriginal liaison workers are trusted by the Indigenous community and NDIS plans are implemented more often when they are involved.

ECI service provision needs to be more sensitive to intergenerational trauma and marginalisation. First Nations family support is under increased amounts of stress when compared with other cultural groups. When training future generations of AHPs there needs to be a greater emphasis on cultural safety and mechanisms of inclusion for Aboriginal families.

First Nations communities have a high level of mistrust towards the government. Australia’s colonial history and the Stolen Generation have created intergenerational trauma and a divide between Aboriginal communities and government. Aboriginal communities are reluctant to engage with state or federal authorities.

Overall system maturity

Close to 90,000 (3.3%) Western Australians identified as being of Aboriginal and/or Torres Strait Islander descent (Australian Bureau

There are almost 30,000 Aboriginal and/or Torres Strait Islander families in WA (ABS 2021)

There are nearly 100 different distinct Aboriginal and Torres Strait Islander groups in Western Australia (AIATSIS, 1996).

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ECI Current State Report

The WA ECI system varies in maturity with some sectors being relatively well developed while others require more progress. This is evidenced in the therapeutic services sector being more mature than the carer support space for example. ECI best practice has evolved considerably within the last 10 years and there is a lag time for services to catch up.

ECI services lack integration. Although certain areas of the ECI system are mature, they operate in silos and lack integration. The ECI system puts the parents in the role of coordinator / navigator and the disconnected nature of the system makes it hard for parents to effectively navigate.

The system focuses on therapies and not supporting the family. The child and family can become isolated from their community, close family and informal supports when not properly supported. Families and the child’s wider community need help building capacity to care for a child with a delay or disability which may not recognised under the NDIS funding model.

Families need as much support as the child. Primary carers of a child with a disability focus much of their energy on their child. There is a need to develop carer support services to bolster the mental health of primary carers. Families report a disruption in their social circles and supports and difficulties forming new friendships and there are limited connectors such as peer support groups and social groups for parents to meet other parent and share knowledge and experience. Informal capacity building services / supports (e.g., playgroups and primary care giver support groups) are needed to develop awareness of best practice and ensure consumers are informed.

redacted

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ECI Current State Report

5.2 Overall Themes

Three key themes were persistent across the identified gaps and challenges in the ECI system. These were identified as:

• Workforce
• Services
• Family and carer support.

These themes are interconnected and require equal efforts for the greatest impact. Focus on these themes can bring about the most impactful changes to the ECI industry in WA.

Workforce

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ECI Current State Report

Workforce

There are persisting workforce challenges within the ECI sector including retention, high vacancy rates, and lack of ECI experience. ECI industry experts noted the geography of the state greatly hampering the retention of suitably trained workforces in rural and remote areas. Moreover, inability to retain experienced staff leads to loss of knowledge as well as impacting the continuity of care received by children and their families.

There is a high rate of turnover for the allied health professional (AHP) workforce who are central to the provision of ECI care. This often creates disruptions to care and service continuity for children and families. Additionally, service providers find it challenging to fill vacancies following staff turnover which can result in time lags between positions being filled and issues with ensuring quality patient handover between professionals.

There is an insufficient number of ECI practitioners with appropriate ECI experience in WA, particularly in rural and regional areas. ECI requires experienced and highly skilled AHPs in order for quality services to be delivered. There is currently an unmet demand for more experienced AHPs, especially in remote and rural areas. Rural areas struggle to retain workforce, leading to a lack of ‘speciality’ and range of services partly due to WA’s geography and a large proportion of the workforce in country areas being new graduates.

Persistent vacancies in WA ECI workforce prevent full utilisation of funding and facilities, even when consumers have the means (i.e., a funded plan or service). Greater investment in an Aboriginal Liaison workforce was identified to promote uptake of services in first nation communities and regional areas.

redacted

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ECI Current State Report

Services

Best practice recommends a holistic approach to the provision of ECI services. Clear communication and easy navigation across the services is imperative to facilitate this for the child and their family. Poor interconnectivity was identified as a persistent issue within WA. Additionally, there has been an historic focus on therapeutic intervention services, contemporary evidence suggests a greater focus on tailored, inclusive, community based services is most effective at providing desired outcomes and improving the patient journey.

Services cannot meet a growing demand for Early Childhood assessment and intervention WA.

This is resulting in long wait lists of 12-18 months in both public and private sectors. In many cases this means that families may miss the window of opportunity to receive the services they need to therapies they need to support their child.

Privatisation of the NDIS (i.e., therapists moving into private practice and the growth of ‘for profit’ organisations) was reported to be on the rise, resulting in an increase in all AHP pricing in line with NDIS rates. Some ECI service providers have inflated their rates to match the maximum permissible charge under the NDIS. This has priced out many families from being able to access services for their child who may not be eligible for services under the NDIS. Tele-practice is a cost effective method to deliver some services however ECI experts acknowledged there are constraints on when this could and should be used (e.g., Wi-Fi, technology access, type of service).

ECI has a clinical focus. Many of the services a child receives are centre based.

This results in the child being regularly taken out of their natural environment to attend therapy in a clinical setting. Best practice indicates that services should be offered in a natural environment for children. Exploration of new service delivery models needs to be considered in the context of application and implementation of natural environment practices and not just delivering a clinic in the home. Future funding models will also need to consider the cost impact to enabling this practice as travel time for the professional will need to be factored in.

The current ECI ecosystem in WA is siloed. Interconnectivity and communication between service providers, specialists and families is inconsistent. This creates a barrier for many children and their families accessing services and navigating the system. An ECI case navigator joining the family on their journey through the ECI system would help alleviate the stress experienced by parents and carers walking an unfamiliar path. Facilitating ease of access further aligns to best practice in supporting the families so they are in the best position to support the child.

Family Experience

“The convenience of being able to have the therapy sessions at home is great. Sessions are completed using toys, etc, already within the home so it’s easier to continue exercises between sessions.”

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redacted

Family and Carer Support

Support for the family is integral to supporting the child. This has been identified as a key enabler to successful outcomes in contemporary research and corroborated by ECI industry experts in WA.

Greater consideration needs to be given to the parents, carers, and families of the child. NDIS funding focuses on the individual with difficulties ( in this case – the child); however, the family’s wellbeing is also essential to ensure the child thrives. There is significant stress placed on primary care givers as they come to understand their child’s needs and navigate the system. When the focus is on the child, the needs of the carer are often less likely to be met.

There should be more opportunities for families to connect with other families from their communities going through similar experiences. For parents and careers, ECI can often feel like a lonely journey. Connectors such as peer support and social groups for parents to meet other parents can be highly beneficial. The first years of childhood can be stressful for parents, especially for parents with a child who has a new diagnosis of developmental delay or disability. Close family relations can be strained if there is a lack of understanding on how best to support a child with a disability. It is therefore important for families to connect with people in their community, who are going through similar challenges.

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ECI Current State Report

Strengths

Industry experts took time to acknowledge key strengths in the WA ECI ecosystem. The passion and drive from the workforce and research sectors in the ECI ecosystem underpin the identified strengths. These illuminate avenues that could be leveraged to drive progress towards the vision of The Collaborative.

Western Australia is producing world leading research in the Early Childhood space. Western Australia is home to several universities with clinical and allied health research programs that also partner with non-government organisations (NGOs) and local healthcare providers to produce world leading research.

There is a passionate and committed workforce who is extremely dedicated to providing outstanding care for WA children and families. Senior leaders in the industry are proud of the contributions their colleagues make on a regular basis to provide the highest quality of care possible for children and families in WA.

More ECI service providers are coming together to collaborate and find solutions to problems. As evidenced by The Collaborative there is a growing appetite amongst ECI service providers to work together to improve the ECI system for children and families in WA.

Family Experience:

“The holistic team approach is fantastic. It supports the child’s needs exactly whilst alsp teaching the family how to best help the child with their specific development needs.”

“IBIS has been a blessing. Having the home visits and great communication with the specialists has been enormously helpful, especially after having my baby need so much assistance after being born 3 months premature.”

services are required regularly. Sessions are completed using toys etc. already within the home so it’s easier to continue exercises between sessions”.

“Knowledgeable and supporting therapists. Financially viable - especially when jh he

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Section 6: Next Steps

ECI Current State Report

6 NEXT STEPS

Identification of the challenges and opportunities for improvement is the first step to articulating the ideal future state for ECI in Western Australia.

Utilising the challenges and opportunities identified, an ideal future state will be designed using a theory of change methodology. This evidence-based process documents how an intervention will work, why it will work, who will benefit and in what capacity, and the conditions required for a successful outcome (Australian Institute of Family Studies, 2021). The theory of change will aid the Collaborative to map a path from the current ECI state to the desired future ECI state through a detailed gap analysis.

Following completion of the future state design, The Collaborative will lead the design of a strategy to improve system design and enable efficient access to early intervention supports for children and families under the direction of an independent chair and secretariat. This strategy will be leveraged to communicate with policy makers and government in an effort to drive transformation and reform in the ECI system in Western Australia.

redacted

36

nquiry into the Thriving Kids initiative

Section 7: Glossary

ECI Current State Report

7 GLOSSARY

A list of terms and abbreviations along with their corresponding definitions.

Table 3 - Glossary

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Section 8: References

ECI Current State Report

8 REFERENCES

AIATSIS. (1996). Map of Indigenous Australia. - https://aiatsis.gov.au/explore/map-indigenousaustralia

Australian Bureau of Statistics. (2021). Socio-Economic Indexes for Areas (SEIFA), Australia. https://www.abs.gov.au/statistics/people/people-and-communities/socio-economic-indexes-areasseifa-australia/2021#index-of-relative-socio-economic-advantage-and-disadvantage-irsad-

Australian Bureau of Statistics. (2021). Western Australia 2021 Census Aboriginal and/or Torres Strait Islander people QuickStats. https://www.abs.gov.au/census/find-censusdata/quickstats/2021/IQS5

Australian Institute of Family Studies. (2021). What is theory of change? https://aifs.gov.au/resources/practice-guides/what-theory-change

Better Health Channel. (2015). Early support for a child with disabilities. https://www.betterhealth.vic.gov.au/health/servicesandsupport/early-support-for-a-child-withdisabilities

Brooks-Gunn, J., and Duncan, G. J. (1997). The effects of poverty on children. Future Child. 7, 55–71.

Centers for Disease Control and Prevention. (2023). What is “Early Intervention ?”. https://www.cdc.gov/ncbddd/actearly/parents/states.html#:~:text=Is%20the%20term%20used%20to,0f%20the%20child%20and%20family.

Clark, D., Damon, and Royer, H. (2013). “The Effect of Education on Adult Mortality and Health: Evidence from Britain.” American Economic Review, 103 (6): 2087-2120.

Commissioner for Children and Young People Western Australia (CCYPWA). (2023, July). What we do. Government of Western Australia. https://www.ccyp.wa.gov.au/about-us/what-we-do/

Commissioner for Children and Young People Western Australia (CCYPWA). (2019, April). Improving the Odds: For WA’s Vulnerable Children and Young People. Government of Western Australia. https://www.ccyp.wa.gov.au/media/3718/improving-the-odds-for-was-vulnerablechildren-and-young-people-april-2019.pdf

Council of Australian Governments (COAG). (2009, July). Investing in the Early Years—A National Early Childhood Development Strategy. Council of Australian Governments. https://www.rch.org.au/uploadedFiles/Main/Content/ccch/Investing_in_the_early_years.pdf

Davidson, N., Skull, S., Burgner, D., Kelly, P., Raman, S., Silove, D., Steel, Z., Vora, R. and Smith, M. (2004, September). An issue of access: Delivering equitable health care for newly arrived refugee children in Australia. Journal of Paediatrics and Child Health. 40: 569-575. https://doi.org/10.1111/j.1440-1754.2004.00466.x

Department of Social Services (DSS). (2023, February). The Early Years Strategy - Discussion Paper. Commonwealth Government of Australia. https://engage.dss.gov.au/wpcontent/uploads/2023/02/early-years-strategy-discussion-paper.pdf

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Dew, A., De Bortoli, T., Brentnall, J., Bundy, A. (2014., May). Strengthening Supports for Children 0 – 8 years and their Families: A Literature Review. Faculty of Health Sciences The University of Sydney. https://ses.library.usyd.edu.au/bitstream/handle/2123/10531/Strengthening_Supports_for_Children_0_-_8_years_and_their_Families_A_Literature_Review_PDF.pdf?sequence=1&isAllowed=y

Early Childhood Intervention Australia (ECIA). (2016, April). National Guidelines – Best Practice in Early Childhood Intervention. Early Childhood Intervention Australia. https://www.eciavic.org.au/documents/item/1419

Independent Review of the National Disability Insurance Scheme (IRNDIS). (2023, June). What we have heard: Moving from defining problems to designing solutions to build a better NDIS. Commonwealth Government of Australia. https://www.ndisreview.gov.au/sites/default/files/resource/download/what-we-have-heardreport.pdf

Reimagine Australia. (2023). What is Best Practice? https://reimagine.org.au/practitioner/what-isbest-practice/

Richter L, Black M, Britto P, et al. Early childhood development: an imperative for action and measurement at scale. BMJ Glob Health 2019;4:154–160

Shonkoff, J. P., & Meisels, S. J. (1990). Early childhood intervention: The evolution of a concept. Handbook of early childhood intervention, 3-31.

Tune, D. (2019, December). Review Of the National Disability Insurance Scheme Act 2013 - Removing Red Tape and Implementing The Ndis Participant Service Guarantee. Commonwealth Government of Australia. https://www.dss.gov.au/sites/default/files/documents/01_2020/ndis-actreview-final-accessibility-and-prepared-publishing1.pdf

Moore, T.G. (2021). Core care conditions for children and families: Implications for integrated child and family services. Social Ventures Australia. Parkville, Victoria: Centre for Community Child Health, Murdoch Children’s Research Institute, The Royal Children’s Hospital.

World Health Organization (WHO). (2020). Improving early childhood development: WHO guideline. https://www.who.int/publications/i/item/97892400020986

World Health Organization (WHO), the United Nations Children’s Fund (UNICEF). (2023). Nurturing care framework progress report 2018-2023: reflections and looking forward. Geneva: World Health Organization. https://apps.who.int/iris/bitstream/handle/10665/369449/9789240074460eng.pdf?sequence=1&isAllowed=y

World Health Organization (WHO), United Nations Children’s Fund (UNICEF), World Bank Group (WBG). (2018). Nurturing care for early childhood development: a framework for helping children survive and thrive to transform health and human potential. Geneva: World Health Organization. https://apps.who.int/iris/bitstream/handle/10665/272603/9789241514064-eng.pdf

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Appendices

ECI Current State Report

APPENDICES

Appendix 1: Workshop participants

The following organisations were represented in the workshop where key challenges and opportunities of the current ECI system were identified.

Table 4 - Organisations represented in the first Future State Workshop

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Appendix 2: The Early Childhood Intervention Futures Collaborative – Terms of Reference

Early Childhood Intervention Futures Collaborative Steering Committee

Draft Terms of Reference

A coming together of like minds as a voice for West Australian children with developmental differences and their families. The Collaborative will provide Thought Leadership to State Government while guiding policymakers and influencers.

1. Roles and Responsibilities

The ECIFC will:

• Comprise of WA Industry leaders across sectors operating in Early Childhood Intervention services, policy and research (conception through to 7 years of age);
• Set the vision to inspire the State, for improved and future ECI services and pathways;
• Oversee the design and development of an ECI Strategy and associated Plan for Western Australia that supports best practice, and which draws upon relevant Sector data, research and information, demand and emerging trends;
• Act as the Peak Body for Early Childhood Intervention in Western Australia, including children aged 0-7 years, together with their families, with a specific focus on earlier intervention during the first 1000 days from conception; Inform key research related to Early Childhood Intervention.

The Steering Committee: a committee of approximately 7 representatives from influencing organisations who will guide the direction of the Collaborative.

Working Groups: subsets of the Collaborative who come together under the direction of the Steering Committee to deliver set pieces of work within a set period of time.

ECI Futures Collaborative Interest Group: the broader group of WA organisations that come together in the interests of delivering collaborative early childhood intervention to the families and children in WA.

The Chair: will be responsible for setting meeting agendas, chairing meetings and connecting with relevant Industry leads and Government. The Chair will be an independent party who has the passion for ECI with experience and skills to represent the Collective on State matters.

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The Secretariat: will be responsible for taking minutes of all Steering Committee meetings and sending minutes to members of the Collective. Agenda/Papers will be sent out one week prior to any Steering Committee meeting.

2. Principles

• Early Childhood Intervention is the responsibility of multiple sectors and requires a cross-government integrated approach;

• Family voice will be an integral part of the work we do;

• All members of the Collaborative will have the best interests of WA children at the centre of all discussions, acknowledging any conflict of interest;

• Shared responsibility is acknowledged and respectful conversations will enable us to move forward towards the collective vision;

• Western Australia’s leading research will drive the outputs of this Collaborative;

• Inclusive practices will form an integral part of all work and the Collaborative will consider ‘at risk’ populations in the State such as:

  • Regional and remote geographical locations
  • First Nations populations
  • Culturally and Linguistically Diverse populations

3. Key Performance Indicators

The ECIFC Steering Committee will establish a process for the measurement and reporting of suitable Key Performance Indicators to measure the impact that this Collaborative has on:

• Policy and legislation
• ECI service design
• Family experience
• ECI service outcomes
• State health economics

4. Composition

Chair: an independent senior ECI leader in WA

Members of the Collaborative are to include, though not to be limited too, senior representation from:

• Department of Health: CAHS
• Department of Communities
• NDIS, Early Childhood Directorate
• Telethon Kids Institute
• Wanslea
• Kalparrin
• Ngala

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• Ability WA
• Curtin University

5. Communications within the ECI Futures Collaborative

All members of ECIFC will be required to provide their email and mobile contact details to ensure communication is facilitated;

Contact lists from ECIFC will be distributed amongst members and are not to be shared outside the group without explicit consent from the individual member;

Minutes will be circulated by the secretariat one week after Steering Committee meeting has been held.

6. Communication with Media Sources and Government

The Chair is the spokesperson and sole member of the ECIFC that may speak about the ECIFC works to any media outlet or government bodies, following consultation and approval from the Steering Committee.

7. Meetings

• The Steering Committee will meet monthly, or as frequently as is necessary, to undertake its role effectively, and in any event no less than monthly;
• A quorum will be four (4) members including the Chair of the meeting;
• In the Chair’s absence, a nominee will be appointed to Chair the Steering Committee prior to the meeting;
• Meeting papers will be the responsibility of the secretariat;
• The ECIFC agenda and associated meeting papers will be distributed electronically 1 week prior to meetings.

8. Location of Meetings

The location of meetings will be rotated through the membership with all members of the Steering Committee expected to support this function.

9. Review of TOR

The Chair will review the Terms of Reference every two years, or sooner as required.

10. Date of Approval

June 2023.

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Appendix B

Submission 128

STARTING THE CONVERSATION:

The future of Early Childhood Intervention in Western Australia

“We have great people, we need a great system”

SEPTEMBER 2023

1

Contents

1. INTRODUCTION ………………………………………………………………………. 3

1.1. Background ………………………………………………………………………………………………………….. 3

2. METHODS ………………………………………………………………………………. 5

2.1. A Theory of Change Approach ………………………………………………………………………………. 5

2.2. Methods ……………………………………………………………………………………………………………….. 7

3. FINDINGS ……………………………………………………………………………… 11

3.1. Workshop 1: Problem Description …………………………………………………………………………11

3.2. Workshop 2: Vision, Impact and Priorities ……………………………………………………………..13

3.3. Workshop 3: Measures of Success, Intermediate Outcomes and Potential Actions …17

4. SUMMARY …………………………………………………………………………….. 22

5. REFERENCES ……………………………………………………………………….. 24

2

1. INTRODUCTION

1.1. Background

In March 2023, a group of thought leaders in the early childhood intervention (ECI) space came together out of concern for the current state of early childhood intervention services in Western Australia (WA) and the potential negative impact of service gaps on the future of children and families affected by developmental differences.

From this initial meeting, The Early Childhood Intervention Futures Collaborative (The Collaborative) was formed, with the purpose of shaping a better future for children and families who have developmental differences in WA. The structure, vision and goals of The Collaborative are fully described in section 1.2 of the Current State Report. As a starting point, the Collaborative initiative two related pieces of work: (1) an assessment of the current state of ECI services in WA and (2) co-design of a roadmap for the future of ECI services in WA that responds to and overcomes some of the obstacles to accessible and high quality ECI services for children and families affected by developmental differences.

1.2. Scope and Purpose of the Report

The Current State Report provides a detailed overview of the current state of ECI services in WA, outlining challenges to service access and provision, and opportunities for improvement. The “Starting the Conversation” report is a first response to some of the challenges raised by the Current State Report. It presents the outcomes from a series of co-design workshops held with consumers and stakeholders. These workshops aimed to identify a vision for the future of ECI services in WA, priorities for ECI service strengthening, and to develop broad consensus on key areas for action where interventions could yield positive benefits for families and improve access to and quality of ECI services for children and families in WA.

Importantly, this report provides perspectives from a range of stakeholders including families, not-for-profit organisations, various government departments and research bodies who have touch points with early childhood intervention. There still remains a piece of work to understand perspectives of the future in ECI from medical and health professionals, country health services and indigenous support services. More work is needed to unpack how the proposed interventions could be implemented and the resources, inputs and structures that will be required to facilitate the proposed changes. In summary, it is hoped that this report will provide

3

a foundation from which to develop a clear strategy and implementation plan for achieving more equitable and accessible ECI services in WA – the ideal future state of ECI.

4

2. METHODS

2.1. A Theory of Change Approach

As a starting point to designing an ECI system for the future, we embarked on a series of co-design workshops, informed by “Theory of Change” methodology. Theory of change is an explicit process of thinking through and documenting which changes are necessary to achieve a desired impact, and how, and through which actions and under what circumstances can these changes be achieved. It maps out the conditions, inputs and resources required for the intervention to reach its outcomes (Weiss, 1995).

A Theory of Change is generally developed in collaboration with stakeholders and offers an opportunity to establish a shared vision for the future and a strategy for achieving that vision (Aromatario et al., 2019). It is a living theory, in that it is usually modified iteratively through the process of designing and evaluating a system change or intervention by creating opportunities for stakeholder reflection and feedback on whether change is taking place, and how and why change is occurring (De Silva et al., 2014). A Theory of Change (ToC) is generally visually represented in a ToC map which is a graphic representation of the causal pathways through which an intervention or set of actions is expected to achieve its impact within the setting in which it is implemented (Breuer et al., 2016). Table 1 describes some of the key terminology and information captured in a ToC map and referred to in this report.

The process used to create a ToC map is “backwards outcome mapping” (De Silva et al., 2014). In other words, one begins by defining the vision or ultimate impact and long-term outcomes that are to be achieved by making changes to the ECI system. Thereafter, the group works backwards to map out all the preconditions or intermediate outcomes required to achieve the long-term outcomes and desired impact. This is followed by describing the actions that need to be taken or particular interventions that are required to achieve these intermediate outcomes. changes or what needs to be done.

5

Table 1. Theory of change terms (adapted from Breuer et al., 2016).

#Partially discussed in workshops, requires further discussion and elaboration

**Not discussed in workshop, area for future ToC design and elaboration

2.1.1. Limitations to the proposed ToC and report

In this report, we outline some of the key building blocks for a potential ToC for a more accessible and person-centred ECI system in Western Australia. The TOC presented here only describes the ultimate impact that The Collaborative hopes to achieve, and the long-term and intermediate outcomes on the pathway to achieving the desired impact. Further work is required to map out the actions needed to achieve these changes, as well as underlying conditions and assumptions. Nonetheless, this report represents a first step towards developing a more comprehensive ToC and a strategy to support its future implementation.

6

Figure 1. Future State Workshop Approach

2.2. Methods

Over a two-month period, we conducted three half-day co-design workshops with stakeholders from a diversity of backgrounds and experiences. In the following sections, we describe in more detail which stakeholders were selected to take part in the workshops and how these workshops were structured to develop the ToC map. Figure 1 provides an overview of the content covered in these workshops.

2.2.1. Workshop Participants

We invited a broad range of organisations and stakeholders to participate in the ToC workshops. Stakeholders were defined as people involved in the development, implementation or organisation of ECI for children with developmental differences in WA.

We purposively sought to invite stakeholders who represented (i) consumers and families with lived experience of ECI services and the ECI system in WA, (ii) a peer support organisation for families; (iii) publicly funded ECI services offered in hospital settings, (iv) ECI services offered by the not-for-profit sector, (v) the WA Departments of Health and the Department of Communities, (vi) the peak body for the disability service sector in WA, and (vii) academics representing research institutes focused on disability and inclusion and/or child and family health.

The Steering Committee of the Collaborative identified key stakeholders to invite to the workshops from previous work and interactions around ECI. The stakeholders who attended the workshops were not always the same people, but a key group attended all three workshops to ensure continuity across the workshops. An overview of the organisations represented in the ToC workshops is presented in Table 2.

7

Table 2: Overview of organisations and stakeholders represented in the workshops

8

2.2.2. Procedure

Each workshop was structured to include a brief introduction to the Collaborative, an overview of the current state work and an overview of the ToC approach. The remainder of the workshops involved mapping out the core components of a ToC using structured group discussions and small group exercises. Across the workshops, we worked to gain consensus on what a future ECI system in WA should look like, and the long-term and intermediate outcomes that would have to be achieved to reach this future state.

Workshop 1 focused on problem description. In Workshop 1, the initial results from the review of the current state of ECI services in WA were presented to the group and used to provoke discussion about service gaps and opportunities for change and improvement. In this workshop, the group identified core areas for potential intervention and priorities for system change.

Workshop 2 focused on defining a vision for the future of WA Early Childhood Intervention in WA, the impact the Collaborative hopes to see and the long-term outcomes of a change process. To create this vision, we asked the group to discuss their hopes for a future ECI system in WA (what they wanted it to look and feel like and how they wanted families to experience it). The group was asked to identify the gaps in the current ECI system that needed to be addressed to achieve this ideal future state. Six gaps were identified. Thereafter, we worked in small groups to identify the long-term outcomes that would arise from addressing each of the identified gaps in the ECI system. These small groups identified changes they thought were needed to address the gaps and achieve this vision, reflecting on what changes were possible in a 3-5 year timeframe (long-term outcomes) and what changes were possible in a 1-3 year timeframe (intermediate outcomes). Each small group provided feedback to the broader collective which was recorded on whiteboards before being discussed to identify points of consensus and divergence. Points of divergence were discussed as a collective until consensus about the long-term outcomes and a preliminary set of intermediate outcomes was reached. After this workshop, the facilitator drafted the beginnings of a ToC map (discussed in workshop 3).

Workshop 3 focused on defining measures of success for the long-term outcomes, finalising the intermediate outcomes, and outlining some of the actions that would be needed to achieve these intermediate outcomes. This ToC workshop began by reviewing and refining the vision statement and long-term outcomes developed in workshop 2, after which participants discussed potential indicators of success to facilitate outcome monitoring and measurement and data elements that would be necessary to measure improvement on these outcomes. Next the group worked ‘backwards’ to map all the intermediate outcomes that would be important preconditions for achieving the long-term outcomes. This was done in small groups who were prompted to answer questions about the preconditions that would be necessary to achieve each outcome and the actions/interventions needed to achieve each intermediate outcome. These small groups reported back to the larger collective who discussed and refined the preconditions until consensus was reached. Finally, the group worked to formulate the intervention components

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and activities needed to attain the preconditions. A preliminary set of actions was identified, but further work will be needed to fully unpack all the actions that will be necessary to achieve each intermediate outcome, the necessary conditions (inputs, spaces, timing, people) for implementing these actions and to make explicit any assumptions about possible implementation barriers.

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3. FINDINGS

3.1. Workshop 1: Problem Description

In the first workshop, stakeholder participants discussed gaps in WA’s ECI service system and how this impacted on families’ experience of and connection ECI services. They noted:

(i) Inequities in access to ECI services based on geographic location of families, family awareness of ECI and financial constraints, and cultural background (with disparities in access heightened for First Nation’s communities and families from culturally and linguistically diverse (CALD) communities.

(ii) Barriers to timely access to ECI (an important factor for ensuring best outcomes of an ECI service for children and families), due to service demand outstripping service availability. There are now significant delays (12-18 months) in accessing ECI in both the public and private sector. These delays are more keenly felt for families from First Nations, CALD, or rural/regional communities.

(iii) Difficulties in navigating complex service systems, including families not knowing where, when and how to access ECI, waiting lists for different services, and navigating between multiple allied health providers and between service funders (NDIS) and providers. ECI services are often offered in discipline silos, making it more challenging for families to access and navigate.

(iv) Lack of connection and limited communication between providers impacts on the quality of care provided and on families’ experience of ECI. Families take on a system navigator and service connector role, impacting on their wellbeing, and hampering equity of access for families that are unable to take on this role.

(v) Workforce limitations that hamper service availability, timely access to care (due to workforce supply limitations) and service quality (due to limited training in ECI among allied health professionals). Workforce supply issues are especially prevalent in regional WA and impact on service availability and timely access to care in these settings.

(vi) Limited support for families and carers due to the focus of the ECI system being largely on the needs of the child. Family wellbeing is essential for the child to thrive but few services provide support and connection to families to help them manage stress and navigate a complex system.

In response, the group discussed opportunities for improving WA’s ECI system (Figure 2).

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Figure 2. Workshop 1 Output— Key Insights and Themes

Key insights and themes from the workshop discussion regarding opportunities for improvement in WA’s ECI space.

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Keeping these gaps and opportunities in mind, the group reflected on how they wanted families to experience WA’s ECI service system in the future. Figure 3 depicts some of the key themes emerging from this exercise. Most importantly, stakeholder participants wanted families to feel supported in their ECI journey. They also wanted families to experience ECI services as easy to access, be able to get services in a timely manner (without long waiting periods), and to access high quality, best practice services. They also wanted families to feel connected to services and for services to be connected to each other.

Figure 3. Key themes related to how families should experience WA’s ECI system in the future.

*Size of the word indicates salience of the theme (greater size= more salience).

3.2. Workshop 2: Vision, Impact and Priorities

The second workshop began by reviewing key themes from Workshop One before discussing our collective vision for WA’s ECI system in the future, and what changes were required to achieve this vision.

3.2.1. A Collective Vision for a Better ECI System

Various themes emerged in our discussion about what an ideal ECI system should look like in the future. Stakeholders identified several principles that should underpin the ECI system and ECI service delivery in the future. Table 3 provides a summary of these principles, with illustrative quotes from participants.

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Table 3: A collective vision for a better ECI system in WA: Key principles

3.2.2. Priorities for ECI system improvement and impact

Participants discussed priorities for ECI system improvement (see Figure 4), including long-term and intermediate outcomes that would need to be reached to see these improvements in system functioning. These included:

(i) Child and family needed to be placed at the centre of the ECI system, with adequate support provided to families for system access and navigation.

a. Navigation and care coordination needs: Parents should not have to give up work to navigate a complex and fragmented ECI system in order to ensure their child receives the therapeutic supports they need.

b. Family support needs: Families need support to manage stress and isolation

(ii) Need a better integrated, connected ECI system.

a. Information needs: where and how to access appropriate resources. A central information repository or “hub” would assist families, carers, clinicians, educators to know how to effectively access supports and work across service silos.

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b. Integrated services and effective communication: Strategies to improve communication between different service providers and across different types of services (e.g. speech therapy and day care), and between service providers and families would be in the best interests of the child and family. Protocols will need to be developed to support information sharing and ensure privacy.

(iii) Enhancing supports in communities, providing ECI in the child’s natural environment where possible. Stakeholders identified the need to build capacity among community services to provide ECI-related supports to families.

a. Opportunities for ECI delivery exist in playgroups, libraries, child and parent centres, community health services, and early childhood education and care but are not fully utilized.

b. Expanding these local supports and resources may improve families connection to community and reduce isolation. These services could also help identify families that could benefit from ECI but are currently slipping through the system gaps.

(iv) Expanding, training and upskilling the ECI workforce.

a. Need to train more allied health practitioner (AHP) graduates in ECI and best practice. Universities cannot produce enough AHPs to meet the demand and therefore need to think of other professionals who can provide ECI

b. Educators, child health nurses, therapy assistants and others should be upskilled to provide quality ECI. These professions are already engaging with children and families and are ideally placed to provide and support ECI.

c. However, they need to be upskilled in ECI so that they can work at the top of their scope.

(v) Enhancing quality of ECI services- so all service choices are good choices. Stakeholders noted that many high quality ECI services exist in WA, but not all providers need to be registered and accredited. Not all services are based on best practice and not all providers are adequately trained in ECI. A future state should create systems that ensure a minimum standard is adhered to and that supports ECI providers to enhance the quality of their ECI offering and deliver services based on best practice.

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Figure 4. Summary of key priorities for ECI system improvement

redacted Child and family centred services: Remove barriers to care

System integration and coordination

redacted Increase community-based services and supports

redacted Workforce: Supply and quality

ECI services: Ensuring quality and best practice

3.2.3. Summary: Impact and long-term outcomes

The Collaborative integrated the content of these workshop discussions to develop an impact statement and vision for the future of ECI services in WA and to specify long-term outcomes that would need to be realised to achieve this vision. It identified an early set of intermediate outcomes, which if achieved would contribute to the realisation of the longer-term outcomes. These are reported in Workshop 3 findings. The desired impact and long-term outcomes are summarised below but also illustrated in the ToC map in Section 4.

• Impact Statement: “In the future, we wish families to experience a coordinated, adequately resourced ECI system that offers integrated, good quality services to children and families. “

• Six long-term outcomes (changes):

  • Children and families receive supports and services in their natural environment where possible (mapping onto Priority: community supports)

  • Families know how best to support their child and access quality ECI services (Mapping onto Priority: Child and Family centred services)

  • Families are supported to navigate the ECI system (Mapping onto Priorities: System integration and coordination and Child and Family-centred services)

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• Children and families receive coordinated and integrated services (Mapping onto Priority: System integration and coordination

• ECI services are based on best practice (Mapping onto Priority: Workforce)

• The supply, distribution and skill of the ECI workforce is sufficient to meet demand (Mapping onto Priority: Service quality)

3.3. Workshop 3: Measures of Success, Intermediate Outcomes and Potential Actions

3.3.1. Outcome Indicators

The third workshop began by reviewing the vision(impact) and long-term outcomes developed in Workshop 2. As part of this discussion, we discussed potential indicators that we could use to measure progress toward achieving these outcomes. Table 4 summarises participants’ recommendations for indicators that can be used to measure progress on each outcome. Participants identified administrative data (program coverage and service audit data) that could be used to monitor changes to service access and care. They also identified opportunities to monitor outcomes by collecting data on ECI service experiences and outcomes directly from families.

Notably, indicators related to ECI service quality and best practice will need significant development and validation as industry standards are still evolving.

3.3.2. Intermediate Outcomes and Actions

After discussing how we would potentially measure progress toward these long-term outcomes, we discussed the necessary preconditions that would need to be met for these desired outcomes to be achieved - or intermediate outcomes. In Workshop 2, we identified some of these preconditions. In Workshop 3, we focused on further mapping of the preconditions for each outcome. We identified some of the key actions or interventions that would be required to ensure these preconditions were met. In Table 5 we outline the preconditions that need to be met for each long-term outcome to be reached. We propose some key actions that could assist in meeting these preconditions.

Importantly, the actions proposed are not a complete list. This is an area for future ToC work and development.

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Table 4: Proposed Indicators to assess progress towards long-term outcomes.

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Table 5: Overview of Intermediate outcomes and necessary actions

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3.3.3. Other key actions

The stakeholder group also identified other actions and investments that would facilitate change in the current ECI system. These include:

• Development of a state-wide ECI strategy and implementation plan
• Legislation review to ensure it enables ECI system improvement
• Research to guide development of standards for ECI and to guide system innovations
• Advocate for more funding for ECI services

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4. SUMMARY

In summary, this report is the start of the conversation about how to improve services for children with developmental differences and their families. Through the three co-design workshops we identified (1) current gaps in the ECI system that need improvement, (2) developed a vision for how we would like the ECI system in WA to be experienced by families in the future, (3) identified long-term and intermediate changes that are necessary for achieving this vision and (4) identified potential indicators we could draw on to measure progress towards these desired outcomes.

4.1. A Change Map for ECI system improvement

Figure 5 summarises the content of these discussions, and in particular the long-term and intermediate outcomes and key actions that must be taken to achieve these outcomes. This is presented as a Change Map.

4.2. Next steps

More work needs to be done to extend stakeholder consultation to include medical and health care professionals, rural and remote services, indigenous support services and services that support people who are culturally and linguistically diverse. Further work needs to occur to fully map out the actions required to achieve the desired changes, identify the underlying conditions required for the change, to lead to the identified outcomes. The resources needed to implement each action (as well as potential barriers to implementation) also need to be recognised through further consultative workshops.

Despite some limitations, this redacted represents a first step towards developing a more comprehensive ToC for redacted system and a strategy to support its future implementation.

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Long-term outcomes Intermediary outcomes Key Actions

Children and families receive supports and services in their natural environments, where possible

Families know how best to support their child and access good quality services

Families are supported to navigate the ECI system

Children and families receive co-ordinated, integrated services

ECI services are based on best practice

The supply, distribution and skill of the ECI workforce is sufficient to meet demand

Impact: A coordinated, adequately resourced ECI system that offers integrated, good quality services to children and families

Inclusive design in communities and early childhood education

Child nurses, early childhood educators are trained in ECI

Increased inclusive spaces in communities

Central hub/repository where parents can access information

Parents are aware and educated about ECI and good quality services

Local directories of community services and supports for parents and children

Families have access to a systems and services navigator to help them navigate the ECI system and to support integrated care

An electronic (digital) platform for supporting communication across providers for care coordination is developed

A formalised structure for facilitating co-ordinated, integrated care across health and other disciplines is created

All ECI providers are registered and accredited

ECI services monitor service quality and outcomes and embark upon quality improvement journeys

ECI services provide staff with training in best practice

ECI content is embedded into undergraduate curricula for allied health, nursing, educators

ECI-related student placement opportunities are increased

• Changes to funding to support delivery of care in natural environment
• More parent/child centres
• Review other hubs to identify best practice model (eg rare care centre, my aged care)
• Expand CH book with resources and information on ECI
• Clarify scope of navigator role
• Clarify competencies and training needs
• Secure funding

Develop state-owned digital system similar to my health record

• funding needed to support providers to use system
• Consistent standard for registration of ECI providers to be developed
• Registration needs to be incentivized
• Providers need to be supported to monitor quality and service performance
• Review and expand scope of practice for CHN, ECE etc
• Postgraduate training in ECI

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5. REFERENCES

• Aromatario O, Van Hoye A, Vuillemin A, Foucaut A, Prommier J, & Cambon L. theory of change to develop an intervention theory for designing and evaluating behavior change SDApps for healthy eating and physical exercise: The OCAPREV theory. BMC Public Health, 2019; 19(1435).
• Breuer E, Lee L, De Silva M, Lund C. Using theory of change to design and evaluate public health interventions: a systematic review. Implement Sci. 2016;11:63. doi: 10.1186/s13012-016-0422-6.
• De Silva MJ, Breuer E, Lee L, Asher L, Chowdhary N, Lund C, Patel V. Theory of Change: a theory-driven approach to enhance the Medical Research Council’s framework for complex interventions. Trials. 2014 Jul 5;15:267.
• Schultz, E.M., Pineda, N., Lonhart, J. et al. A systematic review of the care coordination measurement landscape. BMC Health Serv Res 13, 119 (2013). https://doi.org/10.1186/1472-6963-13-119
• Weiss CH. In: New Approaches to Evaluating Community Initiatives Volume 1 Concepts, Methods and Contexts. Connell JP, Kubisch AC, Schorr LB, Weiss CH, editor. Washington DC: The Aspen Institute; 1995. Nothing As Practical As Good Theory: Exploring Theory-Based Evaluation For Comprehensive Community Initiatives For Children And Families; pp. 65–92.

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