Joint Standing Committee on the National Disability Insurance Scheme
Inquiry into the Early Childhood Early Intervention Approach under the National Disability
Insurance Scheme
August 2017
Background
The National Disability Insurance Scheme (NDIS/Scheme) is the new way of providing support for Australians with disability, their families and carers. The NDIS will provide about 460,000 Australians under the age of 65 who have a permanent disability with the reasonable and necessary supports they need to live an ordinary life.
By 2019-2020, it is expected that 47,000 of these participants with approved plans will be children aged between 0-6. Estimates also indicate that a further 59,000 children aged between 0-6 may identify as having a developmental delay or disability but are not expected to need individualised funded supports.
To address this, in February 2016, the NDIA announced the NDIS Early Childhood Early Intervention (ECEI) Approach. In developing the ECEI approach, the NDIA reviewed a range of intervention models to ensure the approach was consistent with the aims and intent of the early intervention provisions in the Scheme.
The ECEI Approach builds on existing, evidence based, early intervention approaches and emerging best practice such as the Victorian State Government’s early childhood intervention services, which is well integrated into the State’s early childhood policy and service network.
The ECEI Approach is designed to, over time build nationally consistent provision of early childhood intervention support for children aged 0-6 years with developmental delay or disability. Based on insurance principles, community inclusion, strengthening mainstream response and evidenced best practice, the primary focus is on the education and capacity building of families delivered by experienced and skilled providers.
The NDIS ECEI Approach
The NDIA convened an expert group in December 2014 to review the evidence on best-practice approaches. The group stressed how important relationships and participation were when it came to every child’s development. The ECEI approach, acknowledging the outcomes of the expert group, supports children to achieve the desired outcomes based on a family-centred model. In developing the ECEI approach, the NDIA has worked with some of Australia’s leading early childhood early intervention practitioners and researchers.
The NDIA also drew on key areas of research to provide an evidence base and inform the ECEI approach, these included:
- KPMG (2011), Reviewing the evidence on the effectiveness of early childhood intervention,
Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA)
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Family and Community Services, NSW Government (2015), Strengthening supports for children and families 0-8 years: now and into the future
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Department of Education and Early Childhood Development (DEECD), Victorian Government (2009), DEECD Early Childhood Intervention Reform Project: Literature review.
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- Autism Spectrum Disorder (ASD) – Autism Spectrum Disorder: Evidence-based/evidence- informed good practice for supports provided to preschool children, their families and carers, (which the NDIA commissioned)
Research and evidence shows children learn and develop best in their natural, everyday settings, hence the importance of family-centred practice and timely, well-integrated early intervention to promote optimal individual outcomes. ECEI supports can be offered in a range of everyday environments such as home, childcare, playgroup, sporting and community activities, relying on family, community and mainstream to contribute to the attainment of outcomes.
The linkages between the NDIS and other service systems for young children was observed as an area of weakness in the NDIS trial. The current ECEI Approach promotes best practice early childhood intervention through strong practice collaboration between the NDIS, health, early education and childcare.
The ECEI approach is also consistent with the views of Early Childhood Intervention Australia (ECIA) as expressed in their recent submission to the Productivity Commission Public Inquiry into Disability Care and Support. The ECIA submission mentioned that the principles of the NDIS should include:
- Recognition that each child and all families are unique
- Outcomes for children with disabilities align with desired outcomes for all children
- Recognition that the child, the family and their participation within community settings need to be supported.
The ECIA submission noted the NDIS should have a holistic view that recognises that developmental delay/disability does not only affect an individual, but also the whole family. It should support the education and development of the child along with the social participation of the child and his or her family. This approach is consistent with the United Nations Convention on the Rights of The Child (1989), in which the child is the subject of rights and full membership of society.
The ECIA Best Practice Guide explains that early intervention is regarded as essential to:
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minimising the effects of disability, potential ongoing dependency and the need for more costly services throughout life
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supporting families to provide optimal family life and avoid increased risk of poor mental health, family distress and breakdown
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supporting children with disabilities to benefit from greater participation in universal early childhood education and care settings, allowing them to make friends, play, learn with others and achieve alongside their peers.
In summary, the NDIS ECEI approach is designed and developed based on best practice evidence and research, drawing from a range of leading Australian early childhood early intervention practitioners and researchers. The aim is to ensure that children receive the right supports at the right time to ensure functional outcomes and that only children who require longer term early childhood intervention supports would need to be supported through the NDIS access process to become participants. The design acknowledged that many children and their families who approached the NDIS would benefit from skilled early childhood based expertise, knowledge and support for a time limited period that promotes capacity building of parental and carer roles, the community and mainstream through their daily interactions and activities.
The aim of the ECEI approach is to minimise the need for further intensive supports where possible by ensuring that children receive the right level of supports to address their needs and achieve their goals.
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The experience from Trial In assessing readiness for transition to full scheme, experiences of trial relating to children aged 0-6 were considered through four major factors:
- Outcomes
- Prevalence
- Costs
- Effectiveness of support model Outcomes for children 0-6 A key underlying principle of the NDIS and the insurance approach is to take a long-term view and invest early. By investing time and money into evidenced based positive supports as early as possible, it is expected that outcomes will be realised and there will be less need for support in the future. Back-captured trial date: “Has the NDIA helped” Figure 1 participants from birth to before starting school
Question
Domain
1. Daily living Has the NDIS improved your child’s development?
1. Daily living Has the NDIS improved your child’s access to specialist services?
2. Choice and Has the NDIS helped increase your child’s ability to communicate what they want?
control
3. Relationships Has the NDIS improved how your child fits into family life?
4. Social, Has the NDIS improved how your child fits into community life?
community and civic participation
Experience regarding prevalence of children The NDIS trial sites commenced in July 2013, providing three and a half years of experience which can be compared with the original Productivity Commission estimates. For children aged 0-6 years, experience in some of the trial sites differed from the original Productivity Commission estimates.
In 2011, the Productivity Commission estimated that 2.9 per cent of the population of people aged 0-14 years would require funded supports in the NDIS. Further, these participants aged 0-14 years were likely to represent approximately 29.4 per cent of participants in the scheme and 13.1 per cent of annual NDIS costs (Table 1). At full Scheme (2019-20), allowing for inflation, the care and support costs for 0-64 year olds was expected to be $22 billion, so the expected cost of 0-14 year olds is expected to be approximately $2.6 billion.
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Table 1 Productivity Commission estimates 2011
PC estimates (2011) 0-14 years 14-49 years 50-64 years Total
Number of participants 120,960 196,750 93,540 411,250
% of the population 2.9% 1.3% 2.4% 1.9%
Distribution of participants 29.4% 47.8% 22.7% 100.0%
Cost of participants ($m) $1,550 $5,582 $4,712 $11,845
Distribution of the cost of participants 13.1% 47.1% 39.8% 100.0%
Overall it is estimated that approximately one third of 0 -14 year olds with a disability are aged 0-6 years, resulting in approximately 9.6 per cent of the total Productivity Commission funded support population being aged 0-6 years, and 2.0 per cent of 0-6 year old population estimated to be funded support participants.
From trial experience we have seen that the overall prevalence of participants aged 0-6 year’s was higher than the above model would have indicated. The prevalence was highest in the ACT, Barwon and South Australia trial sites compared to Newcastle and Lake Macquarie Local Government areas.
Figure 1: Cumulative prevalence of 0-6 year olds by site at each quarter end
Note: The solid bars represent the prevalence of participants where Access is met, while the dotted lines include participants with access requests in progress. A 95% confidence interval is also shown.
The prevalence of participants with autism and developmental delay for participants accessing the Scheme was highest in the Barwon area. The prevalence in SA and the ACT of autism and developmental delay has also been high, particularly considering the number of potential participants yet to enter the Scheme.
During the trial period, in September 2015, the NDIA utilised an opportunity to pilot early intervention supports for children 0-6 years in a different way to the previous provision in trial (e.g. Nepean Blue Mountain approach). This was designed to enable children not meeting developmental milestones that may be an indicator of a permanent impairment to receive this assistance, information and guidance without entry into the NDIS.
Based on trial and emerging evidence, the NDIA continues to refine the available tools and source of information to ensure appropriate access decisions and optimal ECEI interventions. Functional information collected and analysed using the Pediatric Evaluation of Disability- Computer Adaptive Test (PEDI-CAT) provides useful information on the profile of NDIS participants.
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The PEDI-CAT is however just one functional assessment tool that is used in understanding the needs of children who present with a suspected developmental delay or disability. This is important to understand in the context of the comment made in Section 3.2 of the Productivity Commission’s recent Position paper), quoted in full below:
“Assessment of the functional capacity of children in the scheme suggests that the entry pathway may not be sufficiently robust, as 40 percent of children in the Scheme do not have any identified defects compared to the normal range for their age. This points to a problem with eligibility screening, and underscores the importance of rigorous entry and exit pathways in moderating scheme costs. The development of the ECEI pathway for children to enter the scheme seeks to tighten the entry pathway for children aged 0-6 years”.
In understanding the role of the ECEI Approach, further contextual and clarifying information in relation to the Productivity Commission’s observation is important. The 40 percent refers to a sample of children who entered the Scheme during the Trial, and does not reflect figures for the Full Scheme rollout or the subsequent introduction of the ECEI approach. More specifically: ■ There are a variety of approaches that can be used to assess children’s eligibility for the Scheme, including medical diagnosis or use of a functional assessment tool. – A medical diagnosis approach was largely used during the Trial to both transfer children who were previously in State and Commonwealth Schemes, as well as to assess new children for entry into the Scheme. – An alternate approach is to use an assessment tool such as the PEDI-CAT, which provides information on a child’s function in four domains: daily activities, mobility, social/cognitive and responsibility. ■ During the Trial (when children entered based on a medical diagnosis), the NDIA identified that some Trial sites had higher than expected numbers of children (particularly with developmental delay and autism). Based on that observation, the NDIA was concerned that reliance on a diagnosis approach might not adequately capture the level of function (and hence the level of support needed by participants). ■ In 2016, the NDIA sought to understand the extent to which the medical diagnosis approach and the PEDI-CAT assessment tool were producing similar results. To that end, 4000 children who had entered the Scheme during the Trial (not Full Scheme rollout) under the medical diagnosis approach were back-tested using the PEDI-CAT assessment tool. The results of that evaluation showed that 40 percent of children who had entered under the medical diagnosis approach did not appear to have the same level of functional impairment as indicated by the results produced by the PEDI-CAT approach.1 – Under the ECEI approach, children under the age of six who do not have a defined and clear disability do not enter the Scheme as a participant, but instead are supported through a range of interventions while various assessments are undertaken of their needs. The ECIE partner will then be in a position to recommend to the NDIA the most appropriate form of support for that child and their family which can range from: ongoing individualized funded support; – individual early intervention support package with a view of transition from the Scheme when they are appropriately supported in community and mainstream settings; and – short term assistance to increase inclusion in community and mainstream settings and build skills within families to address minor developmental delays but which do not require individualised funding support.
1 The threshold used is two standard deviations from the mean (i.e., 40 percent of children were not in the bottom 2.5% of their age group for any domain).
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Experience relating to cost of supports The original Productivity Commission report did not include differentiated costs for children within the 0-14 year age group. On one hand, it could be assumed that the cost distribution for 0-6 year olds is the same as for 0-14 year olds. On this basis, the cost of 0-6 year olds would be approximately one third of the cost of 0-14 year olds – or $858 million at full scheme.
However, trial experience showed that the cost profile of 0-6 year olds differed from the cost profile of 7 14 year olds. For example, in the NSW Hunter trial site, the average annualised cost of 0-6 year olds was approximately 83 per cent of the average annualised cost of all 0-14 year olds. Using these assumptions, the cost of 0-6 year olds would be approximately $710 million at full Scheme.
Analysis has demonstrated that, while the number of high cost participants are largely in line with expectations, the distribution low and mid-range packages differs from expectations. In summary, there are fewer low cost and more mid-range cost plans expected.
Experience of the effectiveness of supports and individualised funding During trial, the evidence of the number of children accessing and participating in mainstream and community supports was lower than anticipated, potentially inflating a reliance on funded supports. Additionally, the rate of transitioning from reliance on funded supports back to those most appropriately offered in these natural settings was lower than anticipated.
The analysis demonstrated a requirement to provide a wider range of options for support more reflective of the diverse needs of families at this age group. In particular, it was evident that the Scheme needed to build and enrich relationships with trusted natural community-based supports and strengthen mainstream obligations.
The ECEI approach is a commitment to shape the NDIS early childhood pathway to more closely reflect the emerging evidence for best practice for early childhood early intervention through a holistic consideration to the diverse levers available to influence early intervention.
Role of the Early Childhood Partners
A crucial element of the ECEI approach sees the NDIA working in partnership with experienced and often, well known, early childhood intervention services.
The main aim of this is to provide a network of contacts for a wide gateway that provides lighter touch screening, assessment and early intervention for children 0-6 years with developmental delay or disability and their families/carers.
Partners are chosen through grant based processes on the basis of their experience in and sound clinical governance approach to, delivery of short-term early childhood intervention. The Partners experience means that:
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children and their families are supported in their interactions with the early childhood systems such as health, child care and early education and in particular to build clear referral pathways to the right supports at the local level; and
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are provided with clear support, information and strategies that can be deployed in daily routines to better understand and address the needs of the child.
Partners also need to have the capability and capacity to scale operations to manage the delivery of the ECEI approach within the timeframes required by the bilateral agreements. Partners are required to ensure that they support children across the following six functions tailored in such a way to ensure that the individual child and family or carer circumstances and needs are responded to in a flexible and responsive manner: These include:
- Initial response and pathway support
- Age appropriate community/mainstream interface understanding
- The delivery of best practice early childhood intervention supports 6
- Understanding of functional impacts to inform Access recommendations
- Reasonable and Necessary plan development
- Outcomes measurement and data on plan reviews, that show intervention and functional gain The service is designed on the assumption that children require a range of different supports and interventions. Utilising their experience and understanding of the research and evidence of the ECEI approach, Partners will be required to determine the type and level of early intervention support each child needs to achieve their outcomes. It is expected that the Partner functions are delivered in a manner that provides children and families or carers with timely, comprehensive and well-integrated early intervention supports for longer-term outcomes that foster inclusion and full participation in their environment.
Partners must be able to bring an understanding of the principles of an insurance scheme to their approach, requiring a consistent and disciplined approach to data collection while maintaining a flexible, innovative and truly individualised approach to supports.
It is important that the Partner focuses on the promotion and support for inclusion, family-centred practice and capacity building consistent with the evidence and science base that underpins early childhood intervention.
Current ECEI Partner Arrangements
The ECEI approach is not applied consistently in all areas where the NDIS is currently operating due to transitional arrangements.
The ECEI approach roll out to-date includes:
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Four transitional Pilot Partners in the NSW Service Area of the Nepean Blue Mountains;
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Two Partners in Tasmania;
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One Partner for the ACT;
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Three Partners working across five service areas fully operational in Queensland, including the services areas of Townsville, Mackay, Toowoomba, Ipswich and Bundaberg; and
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Six Partners in Victoria, with two additional service areas to commence in advance supports by October and November 2017.
Although there are a number of agreements in place for the delivery of ECEI Services, the Partners, in the service areas of the Nepean Blue Mountains (NSW) and Townsville (QLD) are the only service areas that have been applying the ECEI approach for over 12 months.
Transitional arrangements apply in:
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NSW where NSW selected existing ECEI providers continue to provide limited gateway services and offer planning and funded support provision to families and
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South Australia where the Interim Services for the ECEI approach commenced in September 2016 through an in-house and outsourced clinical expertise model with the South Australian (SA) Government. Applying an interim solution assisted the Scheme with addressing the immediate pressure from the higher than expected number of children seeking support from the Scheme in SA.
All interim arrangements have an end date agreed with the jurisdictions and acknowledge the future model will be to source Partners in the Community (PITC) process for ECEI services.
Attachment A provides the national footprint and timeframes for the ECEI Approach roll-out across Australia.
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The ECEI approach is still very much in its infancy in regards to evidencing outcomes for children and for Scheme sustainability. It is anticipated that this will become more evident as more Partners settle into the delivery of the ECEI approach in their service areas.
Describe the risks and benefits of each of these models
The design of the ECEI approach seeks to ensure that the NDIA partnered with experienced early childhood intervention providers to offer families assistance, advice and access to early intervention and support for children aged 0-6 years.
The PITC sourcing rounds have supported the NDIA to commission Partners that demonstrate the required competency, and early childhood intervention experience which in turn ensures positive outcomes for children and families.
Due to a range of factors such as the reduced timeframes to implement the ECEI approach according to bilateral phasing arrangements, pre-existing Local Area Coordination arrangements or issues around market capability, some alternative arrangements have been required through the transition period.
The intent of the transitional arrangements has been to assure timely access for families to ECEI supports. Where alternative arrangements have been implemented and the ECEI expertise was required to be developed and engaged, extended time and assistance from the NDIA has been required to support establishment and phasing.
Additionally, in some exceptional circumstances, transitional arrangements have allowed Partners to also deliver NDIS funded supports as a service provider. These arrangements have been approved when there is likely to be a market failure of qualified early childhood providers. Where these arrangements have been endorsed, there has been a requirement for a mitigation strategy and management of any actual or perceived conflict of interest in the provision of ECEI supports.
In NSW and the ACT the NDIA have worked collaboratively with the respective governments and Early Childhood Intervention Australia NSW/ACT to determine an appropriate transitional approach.
This transitional approach will see a significant number of NSW government selected current NSW Early Childhood Intervention providers continue to provide these services until June 2018. These providers will be directly contracted by the NSW Government and will continue to deliver early childhood intervention, referral and information support to families. These NSW providers are also required to develop plans and recommend reasonable and necessary supports to be funded under the NDIS. While the transition providers have the expertise and competency to deliver early childhood intervention supports, considerable effort has been applied by the NDIA staff and funded Transition Advisors to assist these providers to understand their role in developing reasonable and necessary NDIS plans. Under the current arrangements the NSW transition providers are also able to be the provider of supports, requiring particular scrutiny to ensure plan recommendations meet Section 34 of the NDIS Act 2013. Challenges in plan development has consequently impacted the transition provider’s time and capacity to offer services to new families seeking support.
The eligibility criteria for determining access to the ECEI pathway; The ECEI Approach is intended to offer specialised support and services for children aged 0-6 years with a disability or developmental delay (regardless of diagnosis), and their families, in order to promote development, well-being and community participation.
The impact of developmental delay or disability must be demonstrated by providing evidence of substantial reduced functional capacity relating to the child’s daily routines and daily activities.
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Current best practice in early childhood intervention has moved towards functional based assessments using developmental screening tools to evidence the degree of delay in a child’s development. The definition of developmental delay specifies, among other criteria, that there must be evidence of the ‘need for a combination and sequence of special interdisciplinary or generic care, treatment or other services that are of extended duration and are individually planned and coordinated’.
A child who has a developmental delay or disability as a result of an impairment that causes substantial functional limitations requiring a coordinated long term, multidisciplinary service response meets the access requirements under the NDIS Act 2013.
Under Section 25 of the NDIS Act 2013 ‘early intervention requirements’, a child who has developmental delay can access the scheme and receive support. Further, the Act allows for entry/support into the scheme under early intervention if the following is present:
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the person has one or more identified intellectual, cognitive, neurological, sensory or physical impairments that are, or are likely to be, permanent; or
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the CEO is satisfied that provision of early intervention supports for the person is likely to benefit the person by reducing the person’s future needs for supports in relation to disability; and
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the CEO is satisfied that provision of early intervention supports for the person is likely to benefit the person by: o mitigating or alleviating the impact of the person’s impairment upon the functional capacity of the person to undertake communication, social interaction, learning, mobility, self-care or self-management; or o preventing the deterioration of such functional capacity; or o improving such functional capacity; or o Strengthening the sustainability of informal supports available to the person, including through building the capacity of the person’s carer.
The legislation recognises the benefits of best practice early childhood early intervention irrespective of diagnosis. Further, current best practice clearly indicates that in the early childhood years with the right approach and interventions, some children may not require ongoing specialist support. A reliable determination of permanent disability can usually be reached by the age of 7 years. The functional impact of the disability then determines the need for reasonable and necessary supports.
At present participants access the NDIS via three entry categories:
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Defined programs This applies to children in state, territory and Commonwealth funded programs with access requirements substantially the same as those of the NDIS Act. Most children currently receiving supports under these programs will, subject to Commonwealth age and residency requirements being met, be recognised as satisfying the NDIS Act 2013 access requirements. The NDIA will assign children to the Partner for assessment of the adequacy and appropriateness of any existing supports and recommendations for the nature of and changes to future funded supports. Defined programs are not in bilateral, they are agreed by the CEO.
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Non-defined Programs This applies to children in State, Territory or Commonwealth programs that do not have access requirements substantially the same as those of the NDIS Act 2013. The Partner will be expected to engage with these children (and families) to gather information to understand need and circumstances, using the ECEI principles, to determine appropriate next steps.
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These children are assigned to the Partner then complete information gathering and profile development for the child, community connections and initial supports. The Partners will then make a recommendation whether or not the child meets the NDIS eligibility criteria.
- New This applies to children who have not previously accessed State or Territory programs, including those with newly diagnosed disability or children who present with developmental delay. The Partner will be the first point of contact for these children from the wider community including mainstream referrals. Using the ECEI principles the Partner determines the appropriate next steps.
For children who enter under a defined program and are found not to be eligible under the residency requirements, the Partner is able to offer appropriate initial supports to the family to assist them with accessing community and mainstream services. They are also required to advise the family or carer of their right to discuss their support needs with the local state or territory government, as they may be able to assist them under continuity of support arrangements.
As at 31 May 2017
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4,160 children aged eight and under have been reported as being supported under the ECEI approach and gateway (at a point in time since the ECEI approach was initiated)
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Of these, 2,206 (53 per cent) are in the ECEI gateway
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1,952 (47 per cent) are participants of the Scheme, with most having an approved plan. The figure below depicts the distribution of children being supported under the ECEI approach by age, relative to all eligible 0-8 year old children in the Scheme.
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Sixty-five percent (65 per cent) of ECEI eligible and gateway children are aged three to five years old, compared with 41 per cent of non ECEI participants (i.e. eligible group).
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A further 52 per cent of non ECEI eligible participants are aged six to eight years old, compared to 24 per cent in the ECEI eligible group and
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14 per cent in the ECEI gateway cohort. This seems consistent with the ECEI approach, which has a key transition point from ECEI (into the community or the Scheme) when a child turn 7 years of age. Finally, a higher proportion of children are aged less than 3 years old are in the ECEI gateway (21 per cent), compared to the 0 to 2 year old age band in the Scheme – 11 per cent and 7 per cent, for ECEI eligible and non ECEI eligible, respectively.
Graph 2 - Distribution of all eligible and ECEI gateway children 0-8 by ECEI status
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The service needs of NDIS participants receiving support under the ECEI pathway; The objective of ECEI services is to support early childhood early intervention activities that will improve the independence and social participation of children with disability or developmental delay aged 0-6 years.
The Partner is required to work with the NDIA to ensure that children aged 0-6 years are supported by a professional and flexible application of early childhood intervention practice and approaches that delivers:
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Outcomes appropriate to the individual child as evidenced by research that underpins Early Childhood Intervention;
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Family-centric outcomes that support and strengthen parents and carers in their parenting roles and provide them with the skills to support positive development in the child’s developmental progress;
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Strong, flexible and purposeful partnerships with community and mainstream services to positively engage with non-NDIS participants;
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Opportunities for and confidence by families to build and achieve inclusion in different aspects of the child’s life;
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The data required by the NDIS as it evolves and matures based on collaborative and shared ongoing data analysis and evidence of effectiveness; and
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Evidence-based, high quality and consistent access recommendations and reasonable and necessary recommendations where required.
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Timely information and referral to other mainstream supports and services where this is appropriate for the child’s needs; and
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Activities and supports that are linked to the evidence of early childhood. Typical supports that are included in funding packages for children under the age of six include:
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Capital supports – including items for mobility, personal care, communication and recreational inclusion such as wheelchairs, standing frames, bathing and toileting equipment, and home modifications.
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Capacity building – including multi-disciplinary early intervention, individual assessments/therapy and training, family capacity supports and strategies to facilitate and maintain community participation activities and successful social interaction
Timeframes
The ECEI approach is being rolled out across Australia in line with relevant State/Territory Bilateral Agreements. This includes the ‘ECEI in advance’ activity which will commence three to six months prior to the service area phasing. ‘ECEI in advance’ activities provide an opportunity for the Partner to establish referral pathways, community awareness and participant readiness activities across the early childhood sector in preparation for the phasing date. Importantly, families or carers seeking support for their child prior to the phasing date, may receive initial contact and support to assist them in this establishment period.
The specific timing for the provision of supports for a child under the ECEI Approach will be determined by the phasing arrangements that apply to each geographical area as determined by the respective bilateral agreements.
Where a child is found to meet the eligibility requirements of the Scheme, the average period of time from access determination to plan approval is around 90 days.
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The adequacy of funding for services under the ECEI pathway
The NDIS is based on four insurance principles including:
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The NDIS will be sustainable because its funding base will be driven by an actuarial estimate of the reasonable and necessary support needed for participants
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The NDIS will minimise costs by focusing on the lifetime value for Scheme participants
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The NDIA will invest in research and encourage innovation
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The NDIA will support the development of community capability and social capital These principles enable the NDIS to fund people with disability to have an ordinary life.
The ECEI approach places an emphasis on some children receiving supports only through community and mainstream services, whilst other children will require individual funded support plan that includes reasonable and necessary supports to achieve their goals. All supports are funded in accordance with the pricing guidelines.
The costs associated with ECEI services, including costs in relation to initial diagnosis and testing for potential ECEI participants The ECEI approach is intended to offer specialised support and services for children aged 0-6 years with a disability or developmental delay (regardless of diagnosis), and their families, in order to promote development, well-being and community participation. The impact of developmental delay or disability must be demonstrated by providing evidence of substantial reduced functional capacity relating to the child’s daily routines and daily activities. There is no cost in relation to diagnosis as this is not a requirement of the ECEI approach. Diagnosis remains the responsibility of the health system.
ECEI services contracts are funded to undertake a range of functions, including the need to make professional judgements using various screens (e.g. PEDI-CAT), interviews and observations of children to determine the most appropriate support pathway. Depending on the determined pathway, the associated costs for ECEI services will be variable for each child. Partners are not funded on a cost per child basis.
Funding made available to providers of funded supports is consistent with the NDIS price guide.
The evidence of the effectiveness of the ECEI Approach
A rich academia and research history supports early childhood early intervention, forming an evidence-based approach to practice and services for children with developmental delay or disability. The early childhood intervention best-practice and evidence base that underpins the ECEI approach is not new.
A focus on achieving the best outcome via a family-centred approach that supports greater inclusion in mainstream settings and builds child and family capacity is proven to have positive effects in early childhood intervention. The NDIA has designed the ECEI approach using this strong research and evidence base.
The NDIS is developing a range of measures which will underpin the effectiveness of the ECEI approach. This includes ‘Outcome Based’ reporting and a longitudinal sample of participants. This will assist in measuring the effectiveness of early intervention supports on a child’s development.
Importantly, the ECEI approach places an emphasis on the contribution of community and mainstream services to supporting functional outcomes for children with developmental delay or disability.
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The Partner will have strong community connections and will play a significant role in building community inclusion through raising awareness in the community about developmental delay and disability. They will use their knowledge of mainstream and community services to identify mainstream and community supports which will assist the child to achieve outcomes in the identified areas of concern. Examples of community and mainstream supports in the early years are parenting support groups, parent training, early childhood educational services such as childcare, kindergarten, occasional care, family day care, playgroups, health services such as: GP, paediatrician, vision and hearing assessment services, other community health services such as dietitian and family support services.
The Partner will refer the family to these services and keep a record of all activity in the ECEI gateway on a monthly Actuary Reporting Tool. This tool is a reporting mechanism which allows Partners to provide detail to the actuaries to capture the numbers of children and level of supports being provided.
Plan reviews will also be undertaken by Partners. The review examines
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Improvement in children’s functional capacity
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Capacity and confidence of families
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Sector and mainstream services capacity building through: o Linkages into local community and mainstream services o Collaboration, coordination and partnerships o Upskilling of mainstream providers and promoting social inclusion
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Diversion of children away from disability specialist support services through: o Provision of suitable alternatives to formal access to specialist supports o Increased active participation in mainstream services The review will assess continuing functional impact and progress against key early childhood milestones. The review will determine new goals and supports required for the next plan; as well as consider whether the participant continues to meet early intervention requirements of the NDIS Act 2013.
Over the past 12 months, the NDIA has been able to monitor the various journeys that children and their families undertake when accessing services through the Partners and the ECEI Approach.
Attachment B provides four case studies, showing the various pathways and positive outcomes experienced by participants and the benefits that initial supports through light touch intervention, community/mainstream connection can have.
Detailed measurement of the outcomes and effectiveness of the ECEI approach under the NDIS will evolve over the next 12-18 months as new partners commence with the NDIA.
The robustness of the data required to identify and deliver services to participants under the ECEI The Partner will undertake information gathering and profile development to fully understand the child’s developmental strengths and needs. Partners will draw on their experience and knowledge of early childhood development, the impact of the developmental delay on function and parent completed developmental screening tools to assist in the determination of the supports each child and family will require.
They will develop a profile for each child through the application of the Pedi-CAT assessment which will be used as a guide to determine the severity level of the child in combination with information from any relevant existing screening information, assessments or reports.
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In the identification of required early intervention supports, the Partner will consider:
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the family’s aspirations and goals for their child;
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current support services and activities including those available in the mainstream and community; and
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an assessment of adequacy of current supports. The ECEI approach recognises the importance of using an evidence base to inform decision making for children and their families and carers, to share the benefits and understandings that have been gained and to inform consideration of sustainability of the Scheme.
All Partners are to collect consistent information to track the progress of a child, to understand the value of interventions for specific cohorts and to demonstrate the economic and social impact of the NDIS.
The adequacy of information for potential ECEI participants and other stakeholders The NDIA has developed and published a robust range of ECEI related material. These include:
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Information on the ECEI approach nationally and the transitional arrangements per region/jurisdiction are available in a variety of accessible formats including print, video and web based multi-media.
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An ECEI Booklet which provides a detailed overview of the model and how people can test access;
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Fact Sheets explaining the ECEI approach and the types of support provided by a Partner
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ECEI Partner Flyer covering the roll out of ECEI services across the country. In addition, there is a short PowerPoint presentation available via the intranet that covers how the NDIS can help children via the ECEI approach.
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The NDIS website contains a number of ECEI Pathway Stories and videos providing real life examples of how the ECEI approach has assisted families;
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An ECEI Video Animation on YouTube which talks about how ECEI works with leading Australian early childhood intervention practitioners and researchers to design the ECEI approach.
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Webinars where viewers get to hear from panellists as they discuss the new ECEI approach and how the NDIA works with partners and participants so children and their families get the right supports to give them a good start in life. Viewers of these Webinars are able to ask questions and join in on the discussion, if they so desire.
In addition, contracted Partners are required to provide early community engagement and readiness activities. These are to include:
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community engagement activities providing information about the NDIS and the ECEI approach across the early childhood sector;
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engagement with mainstream and community early childhood services, focussing on interface awareness;
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begin development of referral pathways for children within the service area;
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respond to pre-phasing ECEI enquiries from families and carers (with a priority focus on children who are new to the NDIS or where further information is required to understand the functional impact of their developmental delay) including:
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initial information gathering and referral to appropriate supports and services including those available in the community and mainstream for children where NDIS supports are not required; and
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- identification of the timeframe for expected contact by the Partner to commence preparation activities for children and their families and carers who are likely to require ECEI support from three months in advance
The accessibility of the ECEI Approach, including in rural and remote areas
The ECEI approach outlines the need to ensure children with developmental delay or disability can be supported in their local communities and mainstream services and enable greater awareness and social inclusion, including remote and very remote areas.
Initial market investigations reveal a challenging market structure for early childhood services in some regions of Australia.
The need to provide interim strategies whilst the sectors builds capacity and capability has been a main focus for the NDIA, with the need to:
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deliver early childhood supports in a manner consistent with the ECEI approach;
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provide services for participants drawing on specialised and evidence based early childhood practice;
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ensure service coverage; and
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continue to identify and build best practice in the delivery of early childhood services. As highlighted in the NDIA Rural and Remote Strategy (released on 17 March 2017) the ECEI approach is to be tailored to each community in order to provide the most culturally appropriate delivery of ECEI to children and their families in remote and very remote areas.
The proposed approach for remote and very remote areas has been considered in light of the
NDIA Rural and Remote Strategy 2016-2018, the NDIA Aboriginal and Torres Strait Islander
Engagement Strategy and Action Plan, the 2015 NDIA Co-Design Framework and project in East Arnhem.
Additionally, experiences drawn from remote areas such as Palm Island, Barkly Region, Northern Territory and remote areas of South Australia, have informed the proposed approach in remote areas. For example, in Palm Island the NDIA has worked closely with the Palm Island Community Centre to design and implement and tailored and culturally appropriate ECEI model for this community. Similar arrangements are also under development in East Arnhem Land and across Far North Queensland.
As per the agreed phasing schedule, planning activities would commence for the identified remote and very remote area by the NDIA Regional Offices. Their role is to engage and research the current market and consider a place based, tailored approach as well as opportunities in the area for co-design in order to develop and support services to deliver the ECEI approach.
The application of current research and innovation in the identification of conditions covered by the ECEI Approach, and in the delivery of ECEI services
The NDIA is strongly committed to continuous improvement and evidenced based policy and practical design.
The NDIA commissioned a report into Autism Spectrum Disorder (ASD) to provide evidence based/evidence-informed good practice for supports for preschool children, their families and carers. The report highlighted the need to match early childhood programs and services to the child’s natural settings. It also notes parents need support to give their child an opportunity to gain and use the functional skills they need to participate meaningfully in key environments in their life. This insight is incorporated into NDIA staff practice guide.
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The NDIA also convened an expert group in December 2014 to review the evidence on best practice approaches. The group stressed how important relationships and participation were when it came to every child’s development.
The NDIA commissioned Early Childhood Intervention Australia (ECIA) to develop best-practice guidelines for early childhood intervention. ECIA consulted with 400 participants and an expert steering committee to develop the guidelines. ECIA made several recommendations to the NDIS, which were also referenced in the ASD report. This included the need for a child’s early intervention supports to be evidence-based and delivered using a family-centred approach which incorporated individualised planning to achieve positive outcomes.
The NDIA is committed to investing in research and innovation relating to ECEI approach and best practice measures. Taking this approach ensures that any developments assist improved policies and services delivery for children, and better identify the needs of the community in relation to early childhood early intervention services.
Current projects include:
- National Guidelines For Autism Diagnoses – Autism CRC
- Autism Spectrum Disorder early intervention: Predictors and subtypes project – Autism
CRC
- Best Practice Project – ECIA National
- South Australia, ECEI service mapping and community development
- Hearing impairment Reference Package project
- Australian Guide to the diagnosis of FASD - Australian Government Department of Health
- PediCAT
Attachments
Attachment A - Service map Attachment B - Case studies
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Submission1 42 Attachment A
Partners in the Community Program Jurisdiction No. Service Areas No of current No. Remaining Service Total Service Area Cost
Sourced Partners Areas
Early Childhood Early Intervention Queensland 5 3 10 $22,435,983
South Australia 0 0 12 n/a
Victoria 9 6 8 $43,803,470
New South Wales 1 4 14 $5,183,596 and via NSW Government
Tasmania 4 2 0 $7,006,166
ACT 1 1 0 $3,681,817
Northern Territory 0 0 5 n/a
Western Australia 0 0 0 n/a
Queensland
Partner No. Service Total Service Area Cost Q4 commence
Areas
EACH 1 $6,372,817 Commence In Advance—Ipswich
BUSHkids 1 $2,277,195 No
UnitingCare Community 3 $13,785,971 Q3 Commenced
New South Wales
Partner No. Service Are- Total Service Area Cost Q4 commence
as
SDN Child and Family Services 1 $5,183,596 Commenced Current Partners
Lifestart Cooperative
Round Two Lapstone Preschool Kindergarten Association Inc
Subject to interim arrangements Hawkesbury ECI service
Remote & very remote delivered by NDIA Year 1 locations for transitional arrangements 6 Via NSW government arrangements Commenced
PITC Round 3 Service Areas
Year 2 locations for transitional arrangements 8 Via NSW government arrangements Commenced
South Australia Victoria
Partner No. Service Areas Total Service Area Cost Q4 commence Partner No. Service Total Service Q4 commence
Areas Area Cost
No current ECEI Partners
12 n/a n/a
Brotherhood of St Laurence 1 $10,358,924 No Subject to interim arrangements
Latrobe Community Health Service 1 $3,791,752 Q3 Commenced
Tasmania
Intereach 1 $5,066,952 Commence Phasing—Loddon
Partner No. Service Areas Total Service Area Cost Q4 commence
Merri Community Health Services Ltd 1 $2,441,668 Commence In Advance—Ovens Murray
Baptcare 2 $3,972,963 Q1 Commenced
Link Health & 3 $15,519,215 Commence In Advance—Inner Gippsland, Inner
Mission Australia 2 $3,033,203 Q1 Commenced Eastern Melbourne and Outer Eastern Mel- Community Limited
bourne
ACT
Barwon Child, Youth and Family 1 $4,349,414 Commence In Advance—Barwon
Partner No. Service Areas Total Service Area Cost Q4 commence Latrobe Community Health Service 1 $2,275,545 Commence In Advance—Western District
EACH 1 $3,681,817 YQ3 Commenced Round 2Under negotiations 2 $14,666,476.91
National Footprint ECEI V.3.2 - 29 June 2017
Attachment B
Early Childhood Early Intervention
Early Childhood Partner - NDIS Access
Paediatrician Family meet with Early Parent’s discuss 1 2 3
encourages the Childhood Partner at home and goals for their child’s
family to make an discuss concerns. The child development with
appointment with Early has a delay in communication, the Early Childhood
Childhood Partner. physical and social skills. Partner.
Early Childhood Partner supports family to Child becomes an NDIS participant 4 5
and an Early Childhood Partner complete an NDIS Access Request Form. develops a tailored plan with the The family is encouraged to attend a local family, which includes informal, peer support group and start their child in mainstream and funded supports. an educational play program.
Early Childhood Partner supports Family meet with the Early 6 7
parents, providing them with a Childhood Partner every 12 months list of local providers who could to review the child’s support needs deliver supports funded in their and, where necessary, develop a child’s NDIS plan. new NDIS plan.
Attachment B
Chloe, Cameron and Georgia’s journey
Three-year-old Georgia and her Chloe and Cameron identified and discussed goals Georgia became an NDIS Participant and the Early
parents, Chloe and Cameron, have for their daughter’s development. Childhood Partner worked with Chloe and Cameron to develop a tailored plan, which included the goals
just started seeing a paediatrician The Early Childhood Partner advised Georgia’s they had identified for their daughter. It also included
who referred them to an Early parents in order to support her development she recommendations for funded supports so Georgia would benefit from longer-term supports from a
Childhood Partner. multidisciplinary team through an NDIS plan. This could achieve the goals in her plan. It was then submitted to the NDIS for delegate consideration.
would include regular sessions, delivering specialised
Georgia presents with a significant communication, early childhood intervention (with a key worker and it The NDIS approved Georgia’s plan, which included the
physical and social developmental delay. She can may include consultations/ongoing support with other funding the Early Childhood Partner recommended for
walk short distances but fatigues easily and she’s a bit members of the early childhood early intervention specialised early childhood intervention and for the
clumsy on her feet. team as required). assistive technology assessment.
Georgia has started speaking but she is only using The Early Childhood Partner identified and The Early Childhood Partner supported Georgia’s
one or two words so she has difficulty expressing recommended an assistive technology assessment to parents, providing them with a list of local
herself. Her family are concerned and have tried help aid Georgia’s mobility. Informal and mainstream providers who could deliver the supports funded
various strategies to encourage her development supports were discussed with Chloe and Cameron in her NDIS plan.
but feel the strategies they have tried haven’t worked. and the Early Childhood Partner arranged to put
It’s frustrating for Georgia too, who often screams at Georgia and her family will meet with the Early them in touch with a local peer support group and an
length and is unsettled during the day and night. Childhood Partner every 12 months to review her educational play program.
support needs and, where necessary, develop
Chloe, Cameron and Georgia met with an Early The family was also encouraged to engage with the a new NDIS plan tailored to Georgia’s changing
Childhood Partner in their home where Chloe and local maternal and child health centre. support needs.
Cameron discussed their concerns.
The Early Childhood Partner supported Chloe and
The Early Childhood Partner observed Georgia in her Cameron to complete an Access Request Form, which natural environment and completed a screening tool. was submitted to the NDIS.
Attachment B
Early Childhood Early Intervention
Connecting families to mainstream and community supports
1 3 Parents are concerned Maternal and Child Health
about their child’s diet nurse provides support so they approach an to family, along with a Early Childhood Partner. community health dietitian.
2 Early Childhood Partner
discusses situation with parents and refers them to Maternal and Child Health nurse.
Jenny, John and Riley’s journey
Parents to three-year-old Riley, Jenny and John, Jenny and John are worried Riley’s diet will affect his The Early Childhood Partner refers Jenny and John to the
approach their local Early Childhood Partner health. Through conversation with Jenny and John, it local Maternal and Child Health nurse and to a dietitian at
with concerns about their son’s limited diet. becomes evident to the Early Childhood Partner there are the local community health centre. The Early Childhood
Riley is a fussy eater. He only drinks milk and no other concerns with Riley’s health and development, Partner is no longer required and Riley is now supported via
eats a minimal variety of foods – primarily bread, apart from his diet. mainstream and community supports.
bananas, strawberries and sometimes pasta.
Attachment B
Early Childhood Early Intervention
Connecting families to mainstream and community supports
1 3 Playgroup leader suggests
parent contacts an Early Child accesses Childhood Partner for support speech therapy. around their child’s speech.
2 4 Early Childhood Partner discusses Early Childhood Partner
situation with parent and refers provides information on her to the Community Health other mainstream and Centre to access speech therapy. community support options.
Rachel only has one day a week off work and on that Her behaviour, social skills and physical development were Rachel and Isabelle’s journey day she takes Isabelle to playgroup. at an age appropriate level. Isabelle did not meet the
Isabelle is three-years-old. She lives with her mother, developmental delay access criteria as outlined in the NDIS Act. During the playgroup sessions, Rachel noticed Isabelle’s speech
Rachel, and two-year-old twin sisters. A busy working It was determined the support required for her speech delay was not as well developed as other children her age.
single parent, Rachel finds it difficult managing the was best met through mainstream supports.
competing demands of working and caring for three The playgroup leader suggested Rachel should make an The Early Childhood Partner discussed mainstream and
young children. appointment with an Early Childhood Partner. community referral options with Rachel. Isabelle was then
During the appointment, through careful questioning, referred to the local Community Health Centre to access speech Isabelle’s father lives interstate. He visits Isabelle twice a year.
functional screening and observing Isabelle, it became therapy. The Early Childhood Partner and Rachel also discussed When Rachel is working, her elderly parents care for Isabelle
clear she had met most of her developmental milestones suitable childcare options for Isabelle to assist in relieving some and her siblings but they are finding it challenging caring for
but it appeared she had a speech delay but it didn’t have a of the caring responsibilities for Rachel and her elderly parents. three small children.
substantial impact on Isabelle’s other developmental domains.