Supporting young children and their families early to reach their full potential

The Victorian Council of Social Service (VCOSS) welcomes the opportunity to respond to the National Disability Insurance Agency (NDIA) consultation paper on supporting young children and their families early to reach their full potential.

Early intervention for children with disability and developmental delay focuses on supporting children’s social and developmental needs as early as possible to improve participation and inclusion in family and community life. Early identification and intervention are also critical in the context of the insurance approach underpinning the National Disability Insurance Scheme (NDIS).[1]

While supports available for young children with disability or developmental delay have improved through the introduction of the NDIS, the transition has not been easy. Confusing and complex messages, processes and policies make it hard for families and carers to know what is available, how the Scheme works and how to access support for their child and family. Instead of delivering a distinct early childhood early intervention approach, components of the adult part of the Scheme have crept into the design and delivery of support for children.

The proposed changes to improve the early childhood early intervention (ECEI) approach are largely positively received by our members. Getting the ECEI approach back on track to deliver early, high-quality and evidence-based support will improve outcomes for children and their families.

Many of the changes recommended by the ECEI reset are the cornerstones of the original ECEI design. Implementing the ECEI reset and delivering a reinvigorated, comprehensive approach to supporting children will take a commitment to change, ongoing engagement with families, carers and the sector, improvements in communications, and investment in the skills and capacity of Early Childhood Partners, early intervention providers and all workforces supporting children and families.

We encourage the NDIA to partner with and listen to the lived and learned experiences of children, families and carers, advocates, specialist early childhood services, academics and the broader early childhood sector to design and deliver an improved approach for supporting young children with disability or developmental delay.

Improve communications, engagement and outreach

Recommendations

• Commit to sustained investment in community education, information and support to assist families and carers to learn about and connect with the ECEI approach.
• Improve information about the ECEI approach by:
  • Refreshing communications about the NDIA’s approach to supporting children to ensure it is accessible, inclusive and welcoming for families and carers
  • Co-designing new ECEI access and planning resources with families and carers with experience of the approach.
• Deliver comprehensive strategies to support families and carers to access, navigate and connect to the ECEI approach including:
  • One-stop-shops to support families and carers to find out about ECEI and start their journey
  • Information and events delivered in partnership with trusted local organisations to engage families experiencing disadvantage and isolation
  • Funded training and resources to extend and enhance the early intervention and disability knowledge, skills and capacity of maternal child health nurses, GPs and early childhood educators
  • Greater emphasis on building sector networks and relationships to strengthen referral pathways between local organisations and Early Childhood Partners.
• Co-design and fund peer models of support for families accessing and navigating ECEI, including peer mentors, networks and self-advocacy support.

Families and carers of children with disability or developmental delay often experience significant financial and emotional stress during transition to the NDIS, particularly if their child has been recently diagnosed with a disability or developmental delay.[2]
New disability and administrative terminology related to the NDIS, which is described as “not people friendly” and “too clinical”, can present a barrier for families and carers at the start of their journey.[3] A lack of face-to-face interaction to gain information and ask questions also impacts engagement with and understanding of the Scheme.[4] Establishing one-stop-shops for early information and support, through a co-located presence with existing government agencies or trusted community services, could provide a more approachable option for some families and carers to find about and access the ECEI pathway.

Advocacy services and community organisations have played a major role in supporting families and carers to understand, prepare for and transition to the ECEI approach. Our members report many families and carers who previously accessed state-based systems found the transition to the ECEI system confusing and bureaucratic. There will be an ongoing need for information, advice and community education as part of the ECEI approach. Children and families who are new to needing support will need targeted assistance, clear information and friendly, open doors to start their journey. It is vital that pre-access information and support, delivered by Early Childhood Partners, advocacy services and community organisations, continues to be funded.

The proposal to explain, rename and promote the NDIA’s approach to supporting children is positive, but it needs to go further. Demystifying the ECEI approach and the NDIS is the role of the system and not a fair or reasonable expectation of families and carers.

Communications should be refreshed through meaningful co-design with families and carers who have experienced the ECEI approach and are ideally placed to advise on the clarity of messages and usefulness of resources. The NDIA should also consider removing duplicate, confusing or loaded terms from its descriptions of ECEI. For example, “intervention” can have various connotations for different communities and may be confronting or off-putting. Acronyms and complex language should also be avoided or well explained.

The “early” in early intervention is only possible if families and carers, and other trusted services and professionals in their life, know what is available and accessible for children with disability and developmental delay. Ensuring the ECEI approach is understood across the early childhood eco-system will enable children and families to access support with greater ease and speed.

The pathway to early intervention often starts with a child’s doctor, maternal child health nurse or in an early learning setting, where developmental or learning delays may be identified. Knowledge of the NDIS and the ECEI approach varies across these systems. There can be an assumption from health professionals that access to the NDIS requires a formal diagnosis, which is not the case for the early childhood pathway. Early learning educators often walk alongside families and carers of children with disability or developmental delay on their journey to support and can play a vital role in connecting families to various service systems if they have access to clear information and advice.

Process changes and professional development initiatives to increase the early intervention and disability knowledge and skills of these workforces would support families to find out about and connect with the ECEI approach sooner. Health and early learning services should be supported to build connections with their local Early Childhood Partner to facilitate warm referrals for children and families. Targeted training programs could build upon the foundations of existing models, like the training and resources delivered through partnership-based projects to boost the skills of the child, youth and families workforce in Victoria.[5]

In addition to improved communications and greater awareness among key professionals, targeted engagement approaches should be developed and implemented to enhance understanding and break down barriers. First Nations families, families from culturally and linguistically diverse backgrounds[6], and low-income families experience additional social, cultural and economic barriers to learning about and accessing the ECEI approach. Some families and carers are resistant to seeking help due to stigma, shame and fear of labelling their child. Generic community information sessions, or online-only support, may not provide an accessible or comfortable environment for families and carers to learn and ask questions.

The NDIA and Early Childhood Partners should work in partnership with local, trusted and culturally-safe organisations to design and deliver tailored outreach and engagement activities that meet people where they are. These activities could act as a soft entry point to the ECEI approach and encourage families and carers to learn more about the options available to support their child. The NDIA and Early Childhood Partners could train and build relationships with professionals and community members across a range of sectors and settings, including mothers’ groups and playgroups, to increase understanding of ECEI.

A peer mentor model, where mentors could facilitate warm introductions to the NDIS planning process, services, community groups, events and activities, has been also been suggested as a strategy to support understanding and engagement.[7] In tandem with other peer advice, network and self-advocacy initiatives, this could strengthen the support around families as they navigate the NDIS.

Deliver timely and equitable access

Recommendations

• Ensure all children with disability and developmental delay are connected to early, timely, appropriate support through either short-term early intervention (STEI), individual ECEI funding plans, universal services or state-based support by their Early Childhood Partner.
• Clearly communicate the role, scope and purpose of STEI to families, carers and the early childhood sector.
• Provide families and carers with a choice of provider for STEI support.
• Outline clear transition pathways and support children accessing STEI to connect with the ECEI planning process, community and/or universal services.
• Adopt a reasonable and necessary approach to introducing additional or expanded assessment requirements by:
  • Delivering consistent, high quality and free assessments for children and their families and carers through their choice of provider
  • Ensuring Early Childhood Partners undertaking independent assessments have appropriate qualifications and relevant, recent experience in working with children with disability and developmental delay and their families
  • Using existing reports as part of the assessment process to inform the whole picture of the child’s needs
  • Conducting assessments separately to planning meetings to allow for families and carers time to reflect and provide any further relevant information
  • Providing families and carers with fair opportunities to review an assessment or seek a re-assessment.

Eligibility for support

VCOSS and our members are concerned some children continue to be excluded from receiving support from the ECEI approach, due to the eligibility criteria and evidence requirements. Some people from culturally diverse communities, such as asylum seekers, are not eligible for the NDIS, and as the NDIS and ECEI approach has superseded other Victorian Government funded services, children and families are left with few services available to assist them and can face long delays.[8] Many children and their families and carers face barriers in seeking reports and assessments to support their ECEI application.[9]

At a policy level, ECEI eligibility criteria should be re-written to remove barriers to access for children who are part of the Australian community but precluded from life-changing early intervention support because of their family’s residency or visa status. In terms of Scheme operation, Early Childhood Partners should work to ensure all children are assisted to access the right level and type of support.

Short-term early intervention (STEI)

The proposal to increase the capacity of Early Childhood Partners to deliver short-term early intervention (STEI) could work to enhance quicker connections to support and provide families and carers with reassurance their child is receiving the early assistance they need. The value proposition of STEI, and potential pathways to further support, should be clearly explained to families and their support network.

There remains a perception STEI acts as a holding pattern for children waiting for access to an individual ECEI plan.[10] The short-term positioning of the service may make families worried their child only has a limited time to reach their goal. The types of supports available through STEI should also be explained.

Our members hold a range of views about how STEI should be delivered to best meet the needs of children, families and carers. For some families and carers, working with one organisation to find out about ECEI and receive support quickly will be a welcome relief; while for other families, the option to choose their own local provider would better support their child’s needs and inclusion in family and community life. Instead of developing a siloed workforce and program for STEI, the NDIA should explore ways to maximise the choice and control of children, families and carers and tap into existing services.

The NDIS is supporting more children through the ECEI approach than anticipated. The Productivity Commission’s 2017 NDIS Costs report noted with concern the use of KPIs to cap the number of children referred for access to an ECEI Plan. One of the performance indicator targets for Early Childhood Partners was that “50 per cent of children who connect with the Partner are referred for access to the NDIS”.[11] While this KPI is no longer in place, there is a concern that some changes within the ECEI reset could promote the delivery of STEI over individual plans to rein in costs, rather than deliver the right support for each child. The cultural legacy of these kinds of KPIs needs to be intentionally dismantled to ensure Early Childhood Partners are encouraged to support every child and family to access the best pathway for their individual goals and needs.

Families and carers of children likely to require lifetime support should be assisted to develop and implement an individualised ECEI plan as soon as practical. Resourcing for STEI should also support children who only require short-term assistance to successfully transition to community or universal services.

Independent assessments

The introduction of independent assessments for young children is a concern among our members. The proposal to introduce independent assessments is not well known or understood by families or carers. While assessments such as the PEDI-CAT have already been used in the ECEI approach, our members are worried that the expanded influence of assessments will have a greater impact on families and carers who are the least equipped to advocate for their child.

Children who are being assessed by people they are unfamiliar with may respond or behave differently than they would with a person they know and trust. Children with rare and undiagnosed genetic conditions, which can be complex, progressive and episodic, may not be able to participate in assessments and have their needs understood by assessors who do not have an existing relationship with the child and family or specialist expertise.

As outlined in our issues paper on independent assessments, the NDIA should take a reasonable and necessary approach to introducing additional or expanded assessment requirements.

The current planning process often combines an assessment with a planning meeting, and in some cases can take three to four hours. The process and duration of the meeting can be overwhelming and exhausting for many children, their families and carers. Options to conduct assessments separately to a planning meeting should be explored, to allow families and carers time to reflect on the assessment experience and whether they felt their child’s needs were captured.

Existing reports should be read and respected, with independent assessments offered at the right time, in the right way, for children who require further evidence to inform their ECEI support. Families and carers should have choice in who they engage for their independent assessment; where families do not have existing connections with an allied health professional, Early Childhood Partners with appropriate qualifications and experience could provide this service. Using standard tools and developing a common reporting format would ensure the consistency of reports by all allied health professionals.

The rights of families and carers to appeal the findings of their assessment, request a new one, or request a new assessment due to changed circumstances must be protected and promoted. Eligibility reassessment checklists are proposed to be completed at every plan review[12], however this may be too soon or too infrequent for some children.

Adopt a family-centred approach to planning

Recommendations

• Re-orient the planning process towards a family-centred approach.
• Provide families with one key contact to support their ECEI journey.
• Explain the key concepts of best practice and evidence-based supports clearly and early to all families.
• Ensure NDIA Planners and Early Childhood Partners understand, explain and promote the inclusion of best practice supports in plans.
• Implement Recommendation 3 of the NDIS Joint Standing Committee Planning inquiry to provide families with written information about the types of supports the NDIS can fund to sustain caring arrangements.
• Promote awareness of the value of family capacity-building supports among families, Planners and providers as part of a best practice service mix.

Many families approach the planning process with a sense of trepidation, concern and confusion. Our members report that families often feel they need to say the right things and come prepared to advocate for their child’s needs.

The planning process does not always allow enough time and space for families’ voices to be heard and for the needs of the whole family to be considered. Some families report feeling rushed through the planning process and feel that the challenges and demands they experience in their family role, and across the family unit, are not well-understood or recognised. Parents and carers of children with complex needs, from culturally and linguistically diverse communities or low socio-economic backgrounds report experiencing greater disadvantage in exercising choice and control.[13]

Every family is unique and the everyday life, roles and responsibilities of family members shapes and impacts the capacity and strengths of the family unit. Parenting children is one aspect of family life, however, families and carers are often juggling multiple caring and work responsibilities as well as their own health and wellbeing. Our members report families feel the NDIA has unrealistic expectations of their parental responsibilities that do not consider the complexities of their situation.

Family-centred practice is a key principle of previous state-based services including the Victorian ECEI program[14] and of the Early Childhood Intervention Australia national best practice guidelines released in 2015[15]. It was also a clear feature of the NDIA’s ECEI approach released in 2016.[16] As recommended in previous reviews and inquiries, the NDIA should adopt family-centred planning approaches to ensure the goals and needs of the child and their whole family are considered in planning conversations.

Planning processes should also encourage and facilitate the selection of best practice supports for children and families. The concept of “best practice” support is not well explained to families, which limits their knowledge, capacity and confidence in choosing services for their child and family.

Submissions to the Tune Review also indicated planners are focusing on individual therapy when developing plans, rather than considering other supports that are beneficial for children’s development.[17] Consultation feedback indicated that family-centred supports such as social and community support, family capacity-building and peer group learning and support are typically not funded for young children.[18]

Building the skills and confidence of families to practice, continue and embed strategies at home and in new settings extends children’s learning and development opportunities beyond the boundaries of time-bound sessions with a service provider. Family capacity-building supports should be promoted and funded to complement and strengthen the support provided for children.

Enhance the quality and availability of support

Recommendations

• Provide all ECEI participants with an appropriate level and type of plan implementation support, from a Support Coordinator or Early Childhood Partner, to build the capacity of families to make informed service choices.
• Define the roles and responsibilities for Early Childhood Partners, Support Coordinators and Key Workers in relation to plan implementation and coordination.
• Ensure children, their families and carers, are connected to appropriate, available and local supports by their plan implementation partner.
• Provide avenues for Early Childhood Partners, Support Coordinators, Key Workers, families and carers to provide feedback to the NDIA about market supply and quality issues.
• Create the planning, pricing and policy conditions that enable best practice early intervention approaches to survive and thrive.
• Implement the Recommendation 12 of the Tune Review to recognise, support and build the capacity of families to support their child with best practice approaches.
• Work with peak bodies, registered and non-registered providers to investigate levers and mechanisms to improve market quality and expertise and while supporting service sustainability and supply.

Families and carers want to choose the best services for their child, but they need to be empowered to do so. Concepts around what is considered best practice are not widely understood by families and carers, and aside from initial light-touch plan implementation support, families are largely left alone to figure out how to best use their plan, to shop around for services and make the right choices for their child and family.

The majority of children do not have Support Coordination in their plan[19], and Early Childhood Partners have limited capacity to support families to connect to services. This creates an enormous workload for families and carers, who are often new to accessing disability support services and juggling a range of additional home and work responsibilities. The administrative burden of plan implementation affects the capacity of families and carers to work or re-enter the workforce, undermining the insurance principles of the Scheme.

We welcome the recommendations of the ECEI reset to enable Early Childhood Partners to tailor the level of plan implementation support provided and to share advice about providers with families. All families should be supported to implement their child’s plan and to build their capacity and confidence in selecting services. The NDIA should provide an appropriate level of plan implementation support for all families and carers that is designed to build their capacity and self-advocacy skills as consumers. Roles and responsibilities for plan implementation support should be clarified.

Positive plan implementation also depends on the availability and appropriateness of local services. If families or carers are referred to a service provider with a long waiting list or no capacity, it is not clear what the expectation is of plan implementation partners to support families and carers to find an alternative. Developing mechanisms for a range of stakeholders to share market supply and quality insights could support the NDIA’s market development strategies and responses.

As part of the new ECEI approach, the NDIA should take an active role in creating the conditions that make best practice approaches achievable. The current lack of plan implementation support, the limitations of NDIS pricing structures, and provider registration barriers undermine the capacity of families to make informed choices, and of providers to deliver quality, evidence-based services.

Using a limited budget and without advice and support, families may seek to maximise the value and duration of the supports they can access, instead of focusing on quality of supports. Allied health therapies are frequently prioritised by families, and centre-based support is becoming the predominant setting for therapy over family or community-based settings. Some families opt to purchase as much therapy as possible, and do not understand the role or value of the Key Worker model of that featured in previous state-based systems.

Key Workers enable many elements of best practice to be realised. The Key Worker model provides families with one primary contact, an early intervention specialist, who supports the child and family to work towards their goals. Key Workers develop trusted relationships with families, build on family strengths, encourage teamwork, facilitate and support collaborative approaches across settings, and work to build the skills, knowledge and capacity of families, educators and support networks to support the child. Key Workers also draw on the expertise of a broader transdisciplinary team of specialists. Through this model, Key Workers help to create inclusive and supportive environments for children and ensure the team around the child has the tools and resources they need – this ensures support and strategies can be implemented consistently, in a greater range of settings beyond time-limited therapy sessions.

Compared with previous arrangements, the Key Worker model is much less likely to be chosen or incorporated into plans[20] even though it is a best-practice, high-value model. Under NDIS pricing and funding arrangements, the Key Worker model is difficult to deliver and sustain for families and providers. Families who do not understand the Key Worker model, or are not adequately funded to access a Key Worker and therapies, are unlikely to choose this type of service. Likewise, providers who adopt the Key Worker model can struggle to explain the benefits of the approach to families, particularly families who are new to receiving support.

Other elements of best practice service delivery, such as the use of natural settings and culturally responsive, collaborative and capacity-building practices, are also impacted by NDIS pricing and a lack of understanding and coordination across service systems. Provider workforce challenges, including casualisation and high turnover, can prevent children and families from building relationships with providers.

Building the skills and confidence of families, carers and other important people in a child’s life, including extended family and early learning educators, establishes a strong team and support network around a child; but too often, these kinds of supports are not funded or are challenging to implement. The recommendation to introduce a new ‘capacity building support in natural settings’ item in the NDIS Price Guide may encourage families and providers to priortise supports delivered at home and in the community, however, families will still need to be supported to understand why this is important.

The NDIA should also explore further opportunities to foster a diverse market and encourage the delivery of more innovative coaching, capacity-building and participation supports across a range of settings.

Most families choose to fully or partly self-manage their plan, or engage a plan manager[21], which provides the choice to engage NDIS registered providers or non-registered providers. While non-registered providers are regulated by the NDIS Commission and required to comply with the NDIS Code of Conduct, they do not have to complete a certification audit against the NDIS Practice Standards on Early Childhood Supports.[22]

The market for support services varies widely across regions. While some areas provide plentiful high-quality choices for families, other areas have a limited or concentrated support market. Service shortages in rural and remote regions, as well as metropolitan areas with high population growth of new families, limit access to services and best practice approaches like the Key Worker model are not available equitably in all areas.

Reports from our members suggest small providers and sole traders are often reluctant to register as an NDIS provider because of the complexity and expense of the process and the auditing requirements. Families also appreciate the freedom to choose their providers, however there are fewer checks and balances to ensure non-registered providers are delivering quality, best practice services. Our members are concerned families could be exploited by unscrupulous providers making big promises through lucrative marketing, yet delivering sub-standard services that are not evidence-based or delivered by qualified staff.

Strengthening the consistency and quality of services, while maintaining market supply and respecting the rights of families to exercise choice and control, is a policy challenge for the NDIA. Introducing measures that require families to choose registered providers, or mandating provider registration, too quickly and without exploring barriers may exacerbate market and supply issues.

The NDIA should work to balance safety and risk with choice and control by partnering with the sector to explore practical and sustainable opportunities to improve service quality. Starting suggestions from our members include:

• Commissioning research to identify and address:
  • the financial and administrative barriers for provider registration
  • markets and service offerings where non-registered providers are more prevalent or concentrated
• Introducing audit requirements for all ECEI providers through a staged approach
• Developing an accreditation or rating system to assess compliance with the NDIS Practice Standards on Early Childhood Supports, or that leverages existing structures familiar to families such as the National Quality Framework used in early childhood education and care
• Creating an easy-to-use service finder tool to support families
• Providing common templates for providers to report on outcomes, with measures in place to track the completion and quality of reports.

Extend support across key transitions and milestones

Recommendations

• Extend the age range of ECEI support to children under 9-years-old.
• Adopt a description of the age range that is consistent with early childhood definitions.
• Develop a new support item for school starters, designed to assist children and families to navigate the transition successfully.

Our members are supportive of an extension to the age range for early intervention support. Early childhood is often defined as birth to (and inclusive of) 8-years-old, whereas the NDIA describes the range as under-nine years of age. The NDIA should ensure its definition of the age range is clear and consistent with other sectors and frameworks to avoid any unnecessary confusion.

Starting school is a challenging time for many children and families. Before the NDIS, Victoria’s early intervention support program was embedded within the education system, which enabled a strong focus on school transitions. Families and carers frequently face new barriers and forms of discrimination when seeking to enrol their child at school.[23] After enrolment, families often do not know about or feel confident advocating for their child’s right to access education on the same basis as their peers. New and emerging needs often present during the transition to school, and bridging and coordinating education system supports and ECEI supports can be stressful and confusing. The NDIA should consider developing a new line item for school starting support. Workers in this role could assist children and families to access and transition to school, build the self-advocacy skills of children, families and carers, and help ensure education and early intervention supports and strategies are embedded and coordinated across and within settings.

Strengthen the capacity of Early Childhood Partners

Recommendations

• Ensure Early Childhood Partners have the resources, skills, qualifications and capacity to deliver on their existing role and any appropriate additional responsibilities.
• Reconsider the allocation of new responsibilities to Early Childhood Partners where supports could be delivered by funding existing community and universal supports.
• Review and expand KPIs for Early Childhood Partners to measure outcomes across all areas of responsibility.
• In consultation with a broad range of stakeholders, develop workforce development strategies to increase the capacity of the early intervention and allied health workforces to support a range of sectors.

Early Childhood Partners play an important role in facilitating access to information and supports. They are the ‘face’ of the NDIS for many participants, families, carers and supporters, and the experiences people have with Early Childhood Partners shapes and impacts their expectations and outcomes.

While the role of Partners in the Community under the NDIS was intended to include community development, capacity building and market connection activities, the scope and focus of their role shifted during transition to the Scheme. The capacity of Partners in the Community has been largely absorbed by planning processes and plan implementation.[24]

Our members report mixed experiences with Early Childhood Partners. Staff turnover, limited experience and training, and poor communication practices impact families’ capacity to build trusted relationships and access timely support. There is currently no requirement for the Early Childhood Partner workforce to have qualifications or experience in working with children and families.

We welcome the commitment to create creating a distinct delegate and planner workforce focused exclusively on young children and families. Enhancing the skills and expertise of this workforce, by attracting and retaining staff with qualifications in early childhood or allied health, and delivering ongoing training and professional development, is essential – particularly if the NDIA expands the role of Early Childhood Partners. Key performance indicators should also be expanded to ensure Early Childhood Partners undertake and report on all aspects of their role.

The consultation paper recommends an expanded role for Early Childhood Partners to:

• identify and support young children and families from “hard-to-reach” communities and those experiencing disadvantage
• connect families and young children to local support networks and services in their community
• provide Short Term Early Intervention (STEI) support to eligible young children and families for longer
• conduct independent assessments
• tailor the level of support provided to families to implement their child’s plan and more quickly connect to supports and services.

Our members have varied views on the suitability of Early Childhood Partners to fulfil these functions, and the potential workforce and market implications. Instead of drawing further supports and responsibilities inside the Scheme, the ECEI approach could leverage the strengths of existing community and universal services to deliver these supports. For example, local trusted community groups may provide a more welcoming environment and soft entry point for “hard-to-reach” communities to learn about and access short-term early intervention. Children and families may prefer to access short-term early intervention through their choice of specialist or mainstream service providers, so they can find out what works for their child and can start to build relationships and rapport with workers.

Allied health and early intervention professionals are in high demand and the workforce is already stretched thin across a range of systems and services. Extending the scope of Early Childhood Partners may have broader market implications by drawing professionals away from ECEI providers, health services and private practice and further reducing the availability of specialised and sought-after services. The NDIA should work in partnership with a broad range of sector stakeholders to grow the early intervention and allied health workforces. A comprehensive strategy is required to ensure these skilled workforces can be expanded in a sustainable way to support all sectors.

Address system boundaries and improve service availability and coordination

Recommendations

• Work in collaboration with the governments to increase understanding of the ECEI approach across health, early learning and education settings, and to improve accessibility and inclusion across these environments.
• Invest in collaboration across the early childhood eco-system to deliver innovative, holistic and place-based approaches to supporting young children and families.
• In partnership with governments, revisit the Applied Principles and Tables of Support to identify and address areas of confusion and provide clarity and certainty to families, providers and service systems.

Universal and state-funded programs and services continue to play a vital role in supporting children with disability and developmental delay to grow, learn and thrive. Through the transition to the NDIS and the ECEI approach, the role and responsibilities of universal services and state-funded services has become unclear for providers and families.

State-based programs continue to provide invaluable inclusion support for young children, particularly in early learning settings. The coverage and scope of these services varies across jurisdictions and it can be difficult for families and carers to know which services or funding streams are available and best suited to their child’s goals and needs.

Our members report a growing assumption from some universal services that the NDIS is responsible for all disability-related support, and anecdotal experiences of reduced connection and collaboration between services. While there are pockets of good practice, families’ experiences of universal services are patchy.

Consequently, there are children, families and carers who travel long distances to access early learning services and schools that have developed a reputation for championing and delivering inclusive and collaborative support. This puts additional resourcing pressures on those service managers and schools to ensure each child’s individual learning and goals are supported. In the context of the ECEI reset, it is relevant to note that the time required for early learning services to plan with families, coordinate supports and embed inclusion strategies is not supported by NDIS or early learning funding. It should be.

When inclusion is done well in early learning settings, everyone benefits – children with disability or developmental delay and their family or carers feel welcomed and accepted, other children learn inclusiveness, and services and educators are able to provide a caring and nurturing learning environment.[25]

Inclusive and accessible places and skilled, compassionate workforces are key to creating supportive environments where children can learn, play and socialise with their peers and where families feel welcome. The NDIA should work in collaboration with governments to develop a strategy to strengthen the skills, knowledge and capacity of universal services in supporting young children with disability or developmental delay, with the shared goal of improving the consistency and quality of support in every setting. Targeted initiatives, such as investments in the physical access of early learning settings, playgrounds and community centres, and e-learning modules or resources to build the skills and capacity of maternal child health nurses, early childhood educators and teachers, should be explored and resourced by governments.

Developing and strengthening relationships, partnerships and place-based approaches, by encouraging connection and collaboration across ECEI, health, early learning and education systems, would also support improved access and outcomes for children and families. At a ECEI participant level, this could mean ensuring sufficient funding is provided across all systems to enable stakeholders and services to come together, collaborate, plan and coordinate supports to ensure children can pursue their goals across all settings. At a community level, enhancing the capacity of Early Childhood Partners to build relationships, engage and inform local organisations, and facilitate cross-sector networks could strengthen understanding and cooperation.

The handballing of responsibilities between service systems continues to be a source of frustration for children and families caught in the middle. The Applied Principles and Tables of Support to determine the responsibilities of the NDIS and other service systems were agreed in 2015, before the launch of the Scheme. Learning from the experiences of implementing the ECEI approach, the NDIA should work with governments revisit and clarify the applied principles as they apply for children across all systems and settings to ensure all children receive timely, quality support.

Support smooth transitions to the next life stage

Recommendation

• Adopt a flexible and child-centred approach to transitions from the ECEI approach.
• Replace the three-month limit with an individualised approach.
• Consider tailored approaches to support children and young people aged 9-25 as part of the adult stream of the NDIS.

Achieving goals and transitioning to a new life stage is something to celebrate for all children. Children with disability and developmental delay need the right support, at the right time, to pursue their goals and participate in family and community life, and in early learning and school settings.

As noted in the consultation paper, there are lower rates of children transitioning out of the Scheme than envisaged. The reasons for low transitions are varied and complex and are likely to be linked to their experiences of accessing ECEI and universal supports.

If families have fought and struggled to access appropriate supports and funding, letting go of these resources would to be extremely difficult, even if they are no longer required in the same way or at the same level. Similarly, if families have not felt appropriately supported by universal systems, such as their early learning service, school or other community service, they may feel they cannot rely on this system to meet their child’s needs.

The transition from the ECEI approach to the NDIS, or to universal services, may continue to be difficult for some children regardless of age-range extension. The NDIA’s renewed focus on transitions must be centred on supporting children’s needs. Our members fear the emphasis on transitions is financially motivated and linked to the NDIA’s aspirations to deliver a sustainable Scheme. While the consultation paper notes low transition rates have the potential to undermine some of the insurance principles of the Scheme, the benefits of investing in early intervention could too easily be lost if transitions are not well supported.

Placing an arbitrary cap on the duration of transition support, proposed as up to three months in the consultation paper, is unlikely to deliver the tailored support each child needs, or provide families and carers with confidence that transitioning from the Scheme is the best approach for their child. All children should receive transition support that is tailored to their individual goals and needs.

Children with disability and developmental delay entering the NDIS should be provided with age-appropriate support to develop and implement their individual plan. The needs of children and young people can change quickly during these critical years, especially at key milestones. Young people should be supported to pursue their education and employment goals, and to explore their living arrangements, through tailored planning and plan implementation approaches.

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This submission was prepared by Rhiannon Wapling and authorised by VCOSS CEO Emma King. For enquiries please contact Deborah Fewster at deborah.fewster@vcoss.org.au.

A fully accessible version is available online at vcoss.org.au/policy

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[1] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.103.

[2] Children and Young People with Disability Australia, Improving the NDIS planning process for children and young people with disability and their families: Submission to the Joint Standing Committee on the NDIS, September 2019.

[3] S Gavidia-Payne, Implementation of Australia’s National Disability Insurance Scheme: Experiences of families of young children with disabilities, Infants & Young Children, Vol. 33, No. 3, p.184–194, 2020.

[4] Ibid.

[5] Centre for Excellence in Child and Family Welfare, NDIS Resources To Help You Support Families, accessed 11 February 2021.

[6] Victorian Parliament Legal and Social Issues Committee, Report: Inquiry into early childhood engagement of culturally and linguistically diverse communities, September 2020.

[7] Early Childhood Intervention Australia Victoria/Tasmania, Submission to the Joint Standing Committee on the

National Disability Insurance Scheme (NDIS) Inquiry into Planning, September 2019.

[8] Victorian Parliament Legal and Social Issues Committee, Report: Inquiry into early childhood engagement of culturally and linguistically diverse communities, September 2020.

[9] Ibid.

[10] NDIA, Early Childhood Early Intervention (ECEI) Implementation Reset: Project Consultation Report, November 2020, p.29.

[11] Productivity Commission, Study report: NDIS Costs, October 2017, p.167.

[12] NDIA, Early Childhood Early Intervention (ECEI) Implementation Reset: Project Consultation Report, November 2020, p.4.

[13] S Gavidia-Payne, Implementation of Australia’s National Disability Insurance Scheme: Experiences of families of young children with disabilities, Infants & Young Children, Vol. 33, No. 3, p.184–194, 2020.

[14] Victorian Government, Victorian Early Childhood Intervention Standards, 2016.

[15] ECIA (Reimagine), National Best Practice guidelines for Early Childhood Intervention (1st edition), 2016.

[16] NDIA, NDIS Early Childhood Early Intervention (ECEI) Approach, 26 February 2016.

[17] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.102.

[18] Ibid.

[19] NDIA, Discussion Paper: Support Coordination under the NDIS, August 2020, p.6.

[20] Commonwealth Joint Standing Committee on the NDIS, NDIS Planning Final Report, December 2020, p.179.

[21] NDIA, NDIS Quarterly Report to disability ministers Q2 2020-2021, December 2020, p.132.

[22] NDIA, Early Childhood Early Intervention (ECEI) Implementation Reset: Project Consultation Report, November 2020, p.10.

[23] VCOSS, The right standards for change: Submission to the 2020 Review of the Disability Standards for Education 2005, September 2020, accessed 12 February 2021.

[24] D Tune, Review of the National Disability Insurance Scheme Act 2013, December 2019, p.41; Mavromaras et. al., Evaluation of the NDIS: Final report, National Institute of Labour Studies, February 2018, p.83; E Malbon and G Carey, ‘Market stewardship of quasi-markets by street level bureaucrats: The role of local area coordinators in the Australian personalisation system’, Soc Policy Adm. 2020;1–16, April 2020.

[25] Community Child Care Association, Submission to the 2020 Review of the Disability Standards for Education 2005, September 2020, p.2.