Parliamentary Inquiry into
Provision of services under the
National Disability Insurance Scheme (NDIS)
Early Childhood Early Intervention Approach
Early Childhood Intervention Australia
(ECIA) NSW/ACT
August 2017
Margie O’Tarpey,
Chief Executive Officer,
On behalf of ECIA NSW/ACT
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- EXECUTIVE SUMMARY Early Childhood Intervention Australia (ECIA) NSW/ACT is a Professional Association that promotes and supports the interests of young children with a developmental delay or disability and their families. Its members are early childhood intervention (ECI) professionals and service providers, including private practitioners, mainstream and early childhood sector organisations. ECI Services are based in metropolitan, rural and remote centres throughout NSW and the ACT.
Early Childhood Intervention Australia NSW/ACT (ECIA NSW/ACT) recognises the pathway for children age 0 - 6 through the Early Childhood Early Intervention (ECEI) Approach.
We affirm that ECEI is directly in line with Scheme principles, as it invests in children 0 - 6 with a developmental delay or disability, capitalising on early brain growth and learning, during which targeted interventions have the greatest impact. Investing in children’s functioning early is highly likely to pay large dividends into the future.
We believe that the ECEI Approach is in principle best practice in providing support for children age 0 to 6, which ensures that children have access to appropriate supports, effective early childhood intervention in a timely manner and opportunities for meaningful participation in the community.
ECIA NSW/ACT believes in the benefits of Early Childhood Intervention, both in terms of the ECEI Approach and appropriate and necessary packages of individual funded supports from the NDIS Scheme.
ECIA NSW/ACT believes that all children, including children with developmental delay and disability aged 0 - 6 need to be part of their community and be able to access mainstream supports, regardless of whether or not they require an individual funding support package under the NDIS.
The Recommendations are drawn from the section following it which provides an explanatory commentary.
- KEY RECOMMENDATIONS ON THE ECEI APPROACH
EARLY CHILDHOOD PARTNER ROLE
In order to be able to achieve positive functional outcomes and inclusion of children with a developmental delay or disability in the community, an Early Childhood Partner needs to have a broader role including:
Providing interim supports – access to flexible funding to deliver short to medium term therapeutic supports at the appropriate intensity level without need for an National Disability Insurance Agency (NDIA) plan Enhancing inclusion supports – sufficient funding to provide soft referrals to mainstream supports, such as early childhood education and care (ECEC) settings, which involves a degree of skills, knowledge share/transfer between ECI practitioners to the referral partners Working consultatively with private medical and allied practitioners, in order to avoid fragmentation and a more siloed medical model, if there is no coordination between providers Ensuring services are being delivered by appropriately skilled and qualified staff within the ECIA
National Best Practice Guidelines framework Page2
THE WAY FORWARD FOR ECEI
ECIA NSW/ACT believes that any future ECEI approach needs to adopt and commit to the following principles:
Early Childhood Intervention skills, knowledge and expertise
Early childhood intervention is founded on evidence based ECI best practice, which is underpinned by four key principles:
Family-centred and family focused Collaborative multi-professional team around the child approach Working with the family and child in their natural environments Strength based and universal
EC Partners need to be community connected and place based
The importance of having a diversity of services in metropolitan, regional and remote environments and in local communities is critical to the effective delivery of an early childhood intervention approach that can support families and their children in their local communities and natural environments.
Early Childhood Intervention Workforce strategy for ECI
Given the specialist nature of ECI service delivery, a specialist workforce strategy is required for the ECI Sector which covers the following domains:
Early Childhood Educators
Allied Health Professionals/Therapists
Senior Practitioners
Psychologists
Social Workers
Developmental Paediatricians and General Practitioners with a child development focus
ECI services also need to have the resources and time to support new graduates and final year students from the above professions in order to provide them with the skills and experience needed to work within best practice in ECI.
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- TERMS OF REFERENCE A. ELIGIBILITY ECIA NSW/ACT Recommends: Revise the terms of business for NDIS providers registered to deliver Early Childhood Supports, to demonstrate how each provider works within the key practice principles set out in the National ECI Best Practice Guidelines, namely:
Family-centred and culturally responsive practice Inclusive and participatory practice Engaging the child in natural environments Collaborative teamwork and capacity building practice Evidence base, standards, accountability Outcome based approach
COMMENT ON ELIGIBILITY
Definition of a Developmental Delay
ECIA NSW/ACT generally supports the current definition of Developmental Delay as outlined in the NDIS Act 2013. We also recognise that the NDIS was not designed to support children age 0 - 6 with only one (unilateral) developmental delay and that this is the domain and responsibility of mainstream health sectors. We applaud the introduction of the Developmental Delay pathway to the NDIS focusing on functional capacity and developmental milestones for children 0-6 and away from the Early Childhood Intervention (ECI) system focusing purely on diagnosis of disability, which is not readily apparent for all children age 0 6 that have delays in development, especially children under the age of 3.
Access
ECIA NSW/ACT affirms that the Early Childhood Partner (EC Partner) or Early Childhood Early Intervention Transition Provider (ECEI Transition Provider) is the correct pathway for all children age 0-6 including those being referred by health practitioners. The EC Partner/Transition Provider is the expert in early childhood intervention, providing advice and support at first instance, in addition to referrals to mainstream and community supports, and NDIS planning, if appropriate.
There appears to be a lack of understanding about Developmental Delay and the importance of functional assessment in community and government agencies referring children age 0 – 6. This may compromise outcomes for children.
ECIA reinforces the importance of a functional assessment contextualised to natural environments and is fearful there is a sway towards reintroducing archaic unnecessary standardised assessments to determine eligibility. The ECEI Approach, with a skilled and experienced workforce, has the tools to determine eligibility without exposing children and families to deficit based testing. Standardised assessments are definitely part of evidence based ECI practice but should not be used as a determiner of eligibility.
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National Access Teams and NDIA Planners
There is a need for more support and training of NDIA personnel on the importance and purpose of ECI, and the role of both EC Partners nationally and the Transition Providers in NSW and indeed the role of ECIA NSW/ACT.
B. SERVICE NEEDS ECIA NSW/ACT Recommends:
Reviewing the funding allocation for EC Partners to acknowledge the additional time required in providing services to identified vulnerable families, due to extended engagement and coordination in supporting referrals to mainstream and community services Acknowledging and addressing the gaps in government services and funding for services to identified vulnerable families to more mainstream services in the community Enhancing the Information Linkages and Capacity Building (ILC) program, to ensure that children 0-6 years have access to capacity building activities and their parents have support from networks outside the formal NDIS system
COMMENT ON SERVICE NEEDS
We recognise that there are gaps for children in vulnerable communities including:
Aboriginal Torres Strait Islander families
Culturally and Linguistically Diverse families Families experiencing homelessness and domestic violence and mental health issues Families living in rural and remote regions
A more targeted approach is required to reach these communities. This approach needs to be reflected in the funding allocation for EC Partners providing services to identified vulnerable families, due to extended engagement and coordination time required to support referrals to mainstream and community services. There is a critical need for an intergovernmental approach to responding to the identified gaps in meeting the needs of children with developmental delay and their families, particularly for Health, Education and Family Agencies at the state level.
Information Linkages and Capacity Building (ILC)
ILC supports and activities are for all children with a developmental delay and disability regardless of whether or not the child is eligible for an individualised funding support package under the NDIS.
ILC supports to targeting children with mild developmental delays who are not eligible for an NDIS individual support package area also important. Examples of services include:
Supported playgroups where children learn social skills and build functional capacity in the community Parent support groups where parents come together to discuss different approaches and learn from one another Page5
Other issues:
There needs to be improved funding to address the significant challenges with travel and transport; associated with service provision particularly in rural and remote areas.
There needs to be further clarity about the nature of supports provided to families exiting the Scheme and the transition supports. Service providers have cited numerous cases where families were exited from the Scheme with little notice and no transition supports.
A number of children and families were exited from the Scheme at the age of 7 despite the child having significant delays. They do not meet the eligibility criteria for the NDIS because they cannot provide evidence of diagnosis of defined disability. We note that these children require additional transition supports.
C. TIMEFRAME
NO RECOMMENDATION
COMMENT ON TIMEFRAMES
In NSW, the timeframe for delivery of services under the ECEI Approach has been affected by the transitional arrangements. Under the State’s ADHC funded services, there have been substantial lists of what is termed “defined children” who have been deemed eligible for the Scheme and as such, require an individual funding support plan under the NDIS.
There have also been long waiting lists for new children entering the Scheme as this group of children is not part of the transition arrangements.
There was a delay of 6 months before the first round of ECEI Transition Providers could start assessing their list of children, and the year two ECEI Transition Providers at the time of this submission still do not have the list of children for planning and support.
Given that the majority of children have transitioned to the Scheme in the last three months for the Year 1 regions and that Year 2 transition commenced a month ago, we note that it is too early to measure outcomes attributable to the ECEI Approach and ECI service provision under the NDIS. There has not been sufficient time to collect data on these two aspects of early childhood early intervention under the NDIS.
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D/E. FUNDING /COSTS
ECIA NSW/ACT Recommends:
Reviewing the funding model for ECEI. ECEI Transition Providers’ funding is inadequate. In order for ECEI to be of cost benefit to the Scheme and of benefit in terms of a child reaching its development, it requires an investment in ECI services that work together with the family to meet the child’s developmental milestones, with time for planning, referrals and coordination with other services. Under the current funding model only the basic planning can be undertaken. Conducting a costing study into the ECEI Approach by an independent third party, which addresses key cost domains in the program model, namely: o Remoteness – travel costs for families seeking ECEI o Engagement time – especially for families requiring additional time (eg. Aboriginal and Torres Strait Islander families) Culturally and Linguistically Diverse families and families experiencing homelessness and domestic violence o Inclusion supports – the time it takes to ensure that a referral to community and mainstream services (eg. ECEC settings, Community Health) is successful, as referrals can break down and alternative arrangements need to be made. Providing sufficient funding to be able to provide key worker supports as well as therapeutic interventions commensurate with the needs of the child. Enabling transition supports for children exiting ECI under NDIS, especially those children found to be ineligible at the transition point at 7 years of age because they do not meet the disability requirement for the Full Scheme. Quarantining a portion of ILC funding for ECI, commensurate with the projected number of children per state to ensure children 0-6 years have access to capacity building activities and their parents have support from networks outside the formal NDIS system.
COMMENT OF FUNDING
Observations about the impact of NDIS pricing on the disability sector apply to Early Childhood Intervention in particular.
Pressure to meet billable targets is impacting on the quality of interventions as there is less time for meaningful coordination and consultation with other practitioners, community services and referral agencies. Shifting the costs of provision of service onto early childhood practitioners, such as coordinating with other therapists, making soft referrals and preparing reports is unacceptable. The focus on ECI practice must be on outcomes for children with a Developmental Delay and Disability and their families and on the quality of service provision, not on the quantity of plans to meet arbitrary targets.
The transitional funding envelope in NSW varies across different service providers depending on the ECEI Transition Provider’s funding grant. However the funding amount per child varies based on, for example; the number of children on the ”defined list” that are to transition from the State disability system and the number of new children requesting supports.
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ECEI Transition Providers remark that the current ECEI Approach funding envelope is not sufficient to provide interim supports, which in themselves may be enough to ensure that the child does not require an NDIS individual funding support plan. Very limited therapeutic supports may be delivered under the ECEI Approach.
Complex families, such as families in rural areas; disadvantaged low socio economic families and children at risk, needs additional funding and coordinated support.
ECEI Transition Provider funding is inadequate. Under the current funding model only the basic planning and assessments can be undertaken.
There is little or no recognition of the:
Need for collaboration Assessment and provision of supports using a collaborative team approach Cost of NDIA administration Time required to work with complex and vulnerable families Time required to work with families in the natural environment (e.g. travel costs) Cost of cancellations Interpreter support Need for professional development and for example supervision of new graduates (and so on)
If support in natural environments is best practice funding needs to reflect this for all children ie travel in both metropolitan and rural and remote.
ECIA NSW/ACT believes there needs to be more research and data analysis at a granular level of the true costs of delivering the ECEI Approach in a holistic and early interventionist approach.
F. EVIDENCE OF EFFECTIVENESS ECIA NSW/ACT Recommends:
ECIA NSW/ACT strongly supports the Early Childhood Early Intervention Approach which is evidence-based. EC Partners have ECI Expertise, Knowledge and Experience. Early Childhood Partners must be connected with their communities and natural referral pathways in their local and regional environments; they need to be place based and properly funded. Instigating round table forums with intergovernmental agencies, to respond to the identified gaps in meeting the needs of children with a developmental delay and their families, particularly for Heath, Education and Family Agencies at a state and local level. Developing National policy framework on ECEI and its application, to be implemented across jurisdictions recognising the wide ranging differences in context and geography. Commissioning the development of an appropriate assessment tool for children age 0 - 6 with developmental delay and disability to replace the PEDI-CAT assessment tool. Assessing developmental delay should be based on function, thus minimising the need for standardised assessments. Page8
COMMENT ON EVIDENCE OF EFFECTIVENESS OF ECEI APPROACH
ECIA NSW/ACT strongly supports the Early Childhood Early Intervention Approach and the role of Early Childhood Intervention services in NSW as a leading model of good practice, founded on a long history and enhanced by the 10 years of programmatic and policy framework under the State Government’s Stronger Together initiatives.
Early Childhood (EC) Partners need to have ECI Expertise, Knowledge and Experience. EC Partners need to be connected with their communities and natural referral pathways in their local and regional environments and they need be place based and properly funded.
As indicated under the Timeframe reference, it is too early to document the evidence of ECEI in terms of outcomes. However the principles of ECI have been well documented (National Guidelines: Best Practice in Early Childhood Intervention). ECIA NSW/ACT is currently undertaking two pieces of independent research on the impact of NDIS on ECI and best practice and an evaluation of the ECEI Approach in NSW.
ECIA NSW/ACT believes there needs to be more robust and granulated data; this information should be transparent and accountable to the sector, so that we can all support continuous quality improvement and better outcomes for children with Developmental Delay and Disability and their families.
To ensure that ECI services are delivered within the National Best Practice model, we recommend revising the terms of business for NDIS providers registered to deliver Early Childhood Supports to demonstrate how they practise the principles set out in the National Best Practice Guidelines.
The National Disability Insurance Agency (NDIA) needs to develop a national policy framework on ECEI and its application and implementation across jurisdictions with wide ranging differences in governance, context and geography. One size does not fit all.
Measuring outcomes of Early Childhood Intervention
ECI practice requires time to pay dividends on investment in young children. It takes months of sustained ECI with engaged parents working together with the ECI to support the child to reach significant functional outcomes.
Children transitioning from the NSW system that have significant support needs therefore are unlikely to demonstrate significant improvement in the short term.
ECEI Transition Providers have advised us that the Agency’s preferred tool for measuring outcomes is called the Paediatric Evaluation of Disability Inventory (PEDI).
The PEDI-CAT has proven through consistent use by NSW ECEI Transition Providers to be significantly inaccurate in determining the level of function, in particular, for very young children with an Autism Spectrum Disorder. The majority of children assessed come up as mild on the final PEDI-CAT score due to the scoring system implemented by Scheme Actuaries, even though individual functional domain scores within the PEDI-CAT show that the child’s development is below median range for a child of the same age. ECI Practitioners report back that the PEDI-CAT is not sensitive enough to be able to pick up changes in function over short periods of time. The sector prefers Ages and Stages Questionnaires which are often used to supplement the PEDI-CAT.
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ECIA NSW/ACT recommends adopting a different tool for assessing developmental delay than the PEDI CAT. The preferred solution would be commissioning research into an alternative system or development of an appropriate assessment tool for children age 0-6 with developmental delay and disability.
We believe that Scheme exits alone are an insufficient measure of success of the ECEI Approach for children with developmental delay and disability, as apparently small gains for one child may represent a significant improvement for a child who has relatively low level of functioning and the measure will differ for each child. This is the reason why we recommend implementing a contextual assessment tool to replace the PEDI-CAT.
Conflict of Interest
In the current transitional arrangement in NSW, ECEI services are also ECI services. We do not believe this creates a conflict of interest that cannot be mitigated. The Nepean Blue Mountains pilot of ECEI also operated ECI services.
In the trial and the ECEI Transition Providers in NSW, the potential for conflict of interest has been managed by:
Staff working in Transition Provider role are separate to those who deliver supports under individualised funding. The separation is demonstrated by ECEI staff not wearing their service uniform. Affirmation that the Transition Provider role is separate to Service Delivery as it is role performed within the NDIS legislative framework. Explanation to the family of the nature of Transition Provider role, advising about right to choose any service provider and how to find services using MyPlace. Illustration through data, the number of plans completed and the number of children/families who continue to access individualised supports with the ECEI provider.
G. ROBUSTNESS OF THE DATA ECIA NSW/ACT Recommends:
The NDIA publish more detailed data on a state-by-state basis, on funded packages, outcomes and utilisation of packaged funds for children age 0 - 6, as well as children on the ECEI Approach referral pathway. Undertake an in-depth assessment of the numbers of current and new children on the waiting list and an actuarial study of the numbers of children likely to require early childhood intervention supports under the NDIS.
COMMENT ON THE ROBUSTNESS OF THE DATA
Numbers of children accessing early childhood intervention supports under the NDIS
Dyson, Cutter and Moore were contracted by the Department of Social Services and estimated that there will be 11,600 children 0 - 6 accessing NDIS individual funding support packages at full Scheme come 30
June 2018. Page10
On 31 March 2017, there were 10,450 children 0 - 6 with approved NDIS Individual Support Plans in Australia, 14 per cent of the total NDIS population. By comparison the 7-14 age group represents 44 per cent of all NDIS participants.
Considering the final roll-out figure has already been reached a year ahead of schedule, considerable work needs to occur around reforecasting the number of children requiring early childhood intervention supports under the NDIS.
2016 Census data indicates larger numbers of children with developmental delay and disability than previously anticipated.i The same trend is evident on the ground from Year 1 ECEI Transition Providers. A significant number of new children on waiting lists will need an individualised funding support plan under the NDIS. They may have an existing diagnosis, may not have been accessing ADHC services or funded services themselves.
ECEI Transition Providers/Early Childhood Partners have been reporting on children receiving interim supports under the ECEI Approach and who are not part of the full Scheme. The data on these children is being recorded in an Actuarial Spreadsheet, which the Agency will report on in the next quarterly data report. We note that the Actuarial Spreadsheet has been released late, at the end of March 2017, and that the Year 1 ECEI Transition Providers received no training and that most learned how to populate the data in the spreadsheet through trial and error.
We recommend an in-depth assessment of the numbers of children currently on the waiting list as well as an actuarial study of the numbers of children that are likely to require early childhood intervention supports under the NDIS.
As the ECEI Transition Providers for the Year 1 roll out only commenced the development of plans and referral processes in early 2017 and the Year 2 ECEI Transition Providers have not yet commenced; in our view there simply is not sufficient data or evidence for NDIA to be making a determination about the best and most appropriate service delivery model of early childhood intervention for children and families in NSW, before the end of 2017.
There are varying models of service delivery to support children with a developmental delay or disability across jurisdictions around Australia. New South Wales has unique and valuable characteristics within its early childhood intervention service system that needs to be recognised in the national ECI system.
New children accessing the NDIS
The number of new participants able to access the NDIS during the transition is governed by the Bilateral Agreement.
We note that the transition of children with a developmental delay and disability age 0 to 6 accessing individual support packaged funded by the Department of Social Services (DSS) called Helping Children With Autism (HCWA) and Better Start Initiative (Better Start) are not part of the transition to NDIS in NSW and these children will enter the Scheme as new participants. Children accessing HCWA/Better Start supports need to have their eligibility determined and the best pathway is through the ECEI Approach.
The significant numbers of children living in certain regions in NSW that still need to phase into the Scheme is one of the most significant issues for service providers in NSW. Page11
However, given the restrictions around new participants and the significant numbers of children accessing HCWA/Better Start in some regions that have not transitioned, we recommend that DSS and NDIA devise a regionally based strategy for transitioning children from the HCWA/Better Start programs to the NDIS.
H. ADEQUACY OF INFORMATION ECIA NSW/ACT Recommends:
Align effective policy, programs and information on ECI and what is good practice with improved information and communication with families, so that they can have informed choice taking into account the National ECI Best Practice Guidelines for Early Childhood Intervention.
COMMENT ON ADEQUACY OF INFORMATION
ECIA has developed some effective policy, programs and information on ECI and what is good practice. There is a need for improved information and communication with families, so that they can have informed choice.
Early Childhood Practitioners have advised us that NDIS Contact Centre staff have limited knowledge of the ECEI Approach and that as a result; advice to families has been inconsistent and/or inaccurate. Early Childhood Practitioners have had to work hard to address family stress and correct misconceptions about the NDIS and the ECEI Approach.
We acknowledge that the NDIA has recently published family friendly videos on the ECEI Approach on the NDIS website.
However the materials often conflate Early Childhood Intervention practice with the broader NDIS discussion under the ECEI Approach umbrella, without sufficient advice on ECI. This is a reason why we developed the ECI Handbook for Families; https://www.ecia.org.au/resources/family-booklet and the National Best Practice Guidelines at https://www.ecia.org.au/resources/best-practice-guidelines
I. ACCESS FOR CHILDREN AND FAMILIES IN REMOTE AREAS ECIA NSW/ACT Recommends:
Children and families in remote areas have access to early childhood services Develop strategies for maintaining existing services in rural and remote areas with funding to cover travel and the training of new graduates in the field Encourage the establishment of new services and models of service delivery
COMMENT ON RURAL AND REMOTE SERIVCES
ECI services employ early childhood educators, allied health practitioners/therapists and psychologists. Rural and remote services often speak about workforce shortages particularly for therapists.ii Page12
There are a number of services exploring the use of internet technologies to deliver supports to children living in remote and rural NSW.
ECI services work with the local social capital by:
Sending a number of therapists together to deliver supports to multiple children living in a same remote area Providing services from a local GP’s office once a month in order to minimise travel time for families
There is a need to take into consideration the increased cost of providing services for rural and remote areas due to travel, distance and time. Rural and remote areas also do not have reliable internet connection, which effects service and families’ ability to use technology alternatives to provide and access ECEI supports.
There is a limited workforce in rural and remote areas and the NDIS is creating workforce competition and pressures on supply. In rural and remote areas, services may need to have a duality of role, being an NDIS provider and conduct ECEI functions. Strategies to manage conflict of interest as a service provider and a planner would provide some solution to access and workforce shortage.
Rural and remote areas are strongly connected communities and it is important to respect the existing relationships. The ECEI Approach benefits from local services with local connections.
J. CHOICE OF ECEI PROVIDERS ECIA NSW/ACT Recommends:
ECEI be seamless, that is Early Childhood Intervention supports be short medium and long term or more episodic, depending on the needs of the child NDIA and ECIA develop a policy and procedural framework to manage “conflicts of interest” with EC Partners being ECI service providers
For instance, demonstrated administrative processes that ensure families have been given information and choice about EC Partners in their area and accountability systems on appropriate referrals.
COMMENT ON CHOICE OF ECEI PROVIDERS
The focus of this reference has been around the purported “Conflict of Interest” in terms of referral pathways and choices for families.
ECIA NSW/ACT recognises that whilst it is a recognised concern of the Agency, in the context of supporting children and families, ECEI needs to be seamless.
Families who may not have a diagnosis for their child still need support and a safe environment provided by ECEI providers. The Early Childhood Intervention support may be short term or more episodic. There may be more than one ECEI TP in most areas providing choice for families.
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In NSW, a number of ECEI Transition Providers are also ECI services. We believe this arrangement can be managed with:
Demonstrated administrative processes that ensure families have been given information and choice about EC Partners in their area Firewalls and accountability systems on appropriate referrals and information Service data can show the numbers coming in for planning and the numbers staying with the same Transition Providers. This can mitigate the perceived conflict of interest.
In rural and remote communities it is often the case that an ECEI provider will also be the ECI service. They may be the only service in the town or indeed the region. If there is a separation of organisations, it is a significant concern that this would affect the market in NSW and undermine the important role ECI services have played.
It may be the case that there needs to be more streamlining and direct referrals of families with clearly demonstrated specialist needs, such as hearing and vision impairment and we understand NDIA is reviewing this aspect.
K. APPLICATION OF CURRENT RESEARCH AND INNOVATION ECIA NSW/ACT Recommends:
That the Commonwealth deliver funding to targeted ECI services, to support innovative practices in translating Early Childhood Intervention research into evidenced service delivery models, across different populations in the 0 - 8 age groups.
COMMENT ON CURRENT RESEARCH AND INNOVATION
The NDIA requires evidence that a particular practice is adequately evidenced, by reference to trials and peer reviewed publications. This can come at significant expense, time and resources, which many ECI service providers would not be able to fund or support.
We recommend that the Commonwealth deliver funding targeting ECI services, to support innovative practices in translating Early Childhood Intervention research into evidenced service delivery models, across different populations in the 0 - 6 age groups. Limited Australian evidence is available about the long term effects of early childhood intervention. The ECEI Approach and the NDIS have an opportunity now to gather long term evidence of the effects of timely intervention.
The ECEI Approach needs to assist with the mentoring of the future ECI workforce, this has cost implications and the funding should support the development of our future workforce. Relationships with tertiary institutes should be fostered and focused on nurturing a skilled work force in evidence based practices.
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APPENDIX A: THE NSW CONTEXT
ECI services in NSW are in the main not-for-profit, non-government organisations. ECI services have been operating early childhood intervention referral pathways and supports for over 35 years. ECI services are recognised leaders with the skills, knowledge, experience and expertise in the provision of early child intervention services.
ECI services cover the whole State across metropolitan, regional and remote communities. Broadly speaking NSW ECI services:
Know their local community Have established referral pathways with existing community and mainstream support services such as Community Health, childcare, education, family support services as well as supported playgroups and parenting groups Have regional coverage through a network of committed supporters Make community supports work for those who do not need supports under the NDIS by actively supporting referrals to mainstream and community referrals.
In the last 10 years, NSW through Stronger Together invested over $3 billion in disability services in NSW and committed a significant effort to both early intervention and the early childhood years.
This investment recognised the benefit of universal access to best practice family-centred supports for very young children with a developmental delay or disability and their families. This was considered important to ensure all children are supported to live, grow, play and develop in their natural environments with the right supports.
ECEI Approach in NSW
In 2016, the NDIA produced a framework document entitled Early Childhood Early Intervention (ECEI). What makes the ECEI Approach unique is that it does not have eligibility requirements other than a concern that a child age 0 - 6 years is not meeting their developmental milestones. The ECEI Provider would use tools such as the ‘Ages and Stages’, to assess the child’s functional developmental needs and work with the family to:
Explain the nature of the delay and how to support the child at home and in the community Refer to relevant community and mainstream supports such as Community Health and Child Care Provide interim therapeutic support services and monitor the child’s development; these supports are provided in a best practice approach of working with and through the key people in the child’s life and in the places where the family/child spend time.
If the ECEI Provider determines that the child requires longer term funded supports and the child meets the eligibility requirements for Developmental Delay, then the ECEI Provider would start the NDIS access process. Once a child’s plan has been approved the family would come back to the Early Childhood Partner for assistance with implementing the plan.
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NDIS Transition for the ECI Sector in NSW
In late 2016 and early 2017, the NDIA established Early Childhood Partners (EC Partners) across some jurisdictions in Australia, contracted by the Agency to provide Early Childhood Early Intervention.
The NSW transition was different due to the large number of children accessing services funded by the NSW government which needed to transition to the NDIS under the ECEI Approach.
The NSW Government and the NDIA agreed to put in place transitional arrangements through the current ECI service system in NSW. Fifty-five of the 100 ECI Service Providers were selected as ECEI Transition Providers. In line with the Bilateral Agreement between the Commonwealth and New South Wales; Transition to a National Disability Insurance Scheme (Bilateral Agreement), ECEI services were required to prioritise children currently accessing NSW Government ECI services by way of a list of children deemed eligible to access the Scheme, the defined children list.
It is important to note that ECI transition to the NDIS is part of the larger NDIS transition process governed by the Bilateral Agreement, which prioritises people presently accessing services, starting with groups that have the highest support needs, such that people living in group homes and people accessing community high supports.
Transition issues in NSW
The release of the defined children list for Year 1 NSW NDIS districts was delayed from the intended NDIS roll-out date of 1 July 2016 to mid-December 2016. This meant that the Agency and the Transition Providers had 6 months less time to achieve enrolment targets for Year 1 NSW NDIS districts. For example, the NDIA’s Sydney region finalised 70 per cent of plans for children transitioning from the NSW ECI system to the NDIS in the last three months of the 2016-17 financial year.
ECEI services were required to send plans for verification to the NDIA’s National ECEI Team in Geelong. Year 1 NSW NDIS ECEI Transition Providers reported that they have experienced delays of up to three months in receiving feedback on plan supports. This has now been addressed by contracting Transition Advisers that have been funded to support ECEI Transition Providers/Early Childhood Partners around NDIA’s business processes and making determinations around reasonable and necessary plan supports, and evidencing Developmental Delay.
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APPENDIX B: ABOUT ECIA NSW/ACT
Who we are
Early Childhood Intervention Australia (ECIA) NSW/ACT is the NSW/ACT Professional Association that promotes and supports the interests of young children with a developmental delay and/or disability, and their families. Its members are early childhood intervention (ECI) professionals and service providers, including private practitioners, mainstream and early childhood sector organisations. ECI Services are based in metropolitan, rural and remote centres throughout NSW and the ACT and include small community organisations, large disability and children’s services agencies and various government departments, reflecting the diverse ways in which services are provided nationally to young children with developmental delays and disabilities and their families.
What we do
ECIA NSW/ACT leads and strengthens the sector by influencing policy, promoting quality services and building shared understanding of best practice to ensure that ECI practitioners and service providers are able to best support young children with developmental delay and/or disability and their families.
We support practitioners and service providers in their work with families to ensure that families are engaged and gain the skills and confidence in caring for their child and all members of the family. We promote providing support to children and their families while they are waiting for services to ensure children and their families get support right from the start. We promote best practice principles and provide resources and materials to our members that assist them to provide quality services when working with children and families.
What we support
ECIA endorses a framework of evidence-based practices that promote, encourage and support principles that drive positive outcomes for children and families.
These practices lay the foundation for each individual’s successful participation as a valued member within our diverse community. This has been articulated in our National Guidelines: Best Practice in Early Childhood Intervention.
These practices include:
Family-centred and culturally responsive practice, which creates culturally inclusive environments for families from all backgrounds, and recognises the central role of families in children’s lives. Inclusive and participatory practice, which recognises that, children regardless of their needs have the right to participate fully in their family and community life. Engaging the child in natural environments, to promote inclusion through participation in daily routines, at home, in the community, and in early childhood settings. Collaborative teamwork and capacity building practice, where the family and professionals work together as a collaborative and integrated team around the child, to build the capacity of the child, family, professionals and community. Evidence base, standards, accountability, to ensure ECI services comprise practitioners with appropriate expertise and qualifications who use intervention strategies that are grounded in research and sound clinical reasoning.
Outcome based approach, which focuses on outcomes that parents want for their child and family, Page17 and on identifying the skills needed to achieve these outcomes.
APPENDIX C: NOTES AND REFERENCES
i Census shows increase in children with disability, but even more are still uncounted, Karen R Fisher and Sally Robinson, 28 June 2017, http://theconversation.com/census-shows-increase-in-children-with-disability-but-even-more-are-still-uncounted-80143
ii Early Childhood Intervention Review: Nepean Blue Mountains/Hunter Trial Sites, UNSW Social Policy Research
Centre, p 50, https://www.sprc.unsw.edu.au/media/SPRCFile/ECI_Review_Final_Report.pdf
Notes:
(1) Information Gaps. The Social Policy Research Centre in its review of the Early Childhood Intervention trial sites in the Nepean Blue Mountains and Hunter/New England Trial Sites concludes that: “Families of children with developmental delay and disability are experiencing continuing information gaps, as well as confusion among families about the NDIS planning process, and that in contrast; Families said they had felt overwhelmed with information from various sources when their child was first diagnosed, confusing them and lowering their confidence to locate and understand information related to the NDIS. Information gaps seem exacerbated for families living in rural and remote locations, due to the difficulty of travelling to either meet service providers or attend support groups. Families considered information they could get from existing telephone hotlines inadequate for making complex decisions about allocating individual funding packages. Indigenous families seem to experience even more pronounced information gaps because of culturally different understandings of disability, according to a recent study of an ECI program in regional and rural Indigenous communities.”ii
(2) With a view of collecting more data on ECI under the NDIS and the ECEI Approach, ECIA NSW/ACT has commissioned two complimentary research and evaluations projects outlined below:
Evaluation of ECEI Transitional Provider Framework in NSW, THINK: Insight & Advice – report due on 6 October 2017.
The purpose of the study is to help ECIA NSW/ACT assess the effectiveness, appropriateness and sustainability of the ECEI Transitional Provider Framework and to determine:
How this model might be utilised following the full transition to the NDIS in 2018; What impact the Framework has had on:
a. ECI service providers b. ECEC sector c. Health, Allied Health and community/mainstream referral partners d. Children and families, albeit indirectly through service providers Implementation of the NDIS in the early childhood intervention sector in NSW, Social Policy Research Centre at the University of NSW – report due on 22 August 2017.
The purpose of this project is to conduct research into the experiences of families and ECI service providers in the transition to the NDIS in NSW and to:
Add to the evidence base about the transition to the NDIS in the ECI sector Understand the experience and implications in NSW of the transition to the national ECEI Approach Inform practice change
Improve outcomes for children and families (by providing the information necessary to address transitional issues as they arise). Page18