NDIA Accountability Project

Best practice Early Childhood Intervention for children with disability/developmental delays

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Submission to the Parliamentary Inquiry

into the provision of services under the NDIS ECEI

Early Childhood Intervention Australia (National)

Title: Submission to the Inquiry into the Provision of Services under the NDIS Early Childhood Early Intervention Approach Date: 10th August 2017

Contact person: Trish Hanna, President ECIA National Council, ECIA (National)

Contact details: E: national@ecia.org.au W: www.ecia.org.au

Agreement to publish: ECIA agrees for this submission to be published on the internet

1. Early Childhood Intervention Australia Overview

Early Childhood Intervention Australia (ECIA) is the national peak body promoting the interests of young children with disability / developmental delays and their families. ECIA has a National and State/Territory structure. The National Council consists of two representatives from each State/Territory Chapter.

ECIA provides a national focus and forum for Early Childhood Intervention, promoting the public profile of Early Childhood Intervention, facilitating effective liaison and collaboration in the community and with other peak and government bodies, and fostering quality information and service provision. ECIA has been recently funded by NDIA to conduct the ECIA Best Practice Project. The Project will: document and map ECI services across Australia, document existing collaborative practices, assess the levels of understanding and adoption of best practice principles in service delivery and identify opportunities to improve sector capability to utilise the ECEI approach.

The majority of members of ECIA are organisations and early childhood intervention (ECI) professionals working in NGO’s funded by Government. These include small community organisations, large disability and children’s services agencies, private providers and various government departments, reflecting the diverse ways in which services to young children and their families are provided nationally. ECIA’s membership also includes family members of young children with disability and developmental delays. Members are based in urban, rural and regional centres throughout the country.

2. Development of this submission

ECIA (National) welcomes the opportunity to provide input to the Inquiry into the Provision of Services under the NDIS Early Childhood Early Intervention Approach. This submission will address key issues identified by ECIA National Council/State Chapters and members under the NDIS ECEI approach with particular reference to the relevant Terms of Reference. Responses have been informed by: input from the ECIA National Council; written feedback from State Chapters: Western Australia, Northern Territory, Victoria/Tasmania, New South Wales, South Australia and Queensland; ECIA Best Practice Project Team; and documents referenced at the end of this submission.

3. Summary

This submission recognises that as the Scheme is rolled out and the ECEI approach becomes “usual practice” in service coordination, planning and delivery there is a need to ensure that there are collaborations/networks and systems in place to gather ongoing feedback from participants and the disability, health and educations sectors.

It also acknowledges a requirement for ongoing evaluation, research, capacity building, innovation and

workforce development.

ECIA’s expectation is that children with disability/developmental delay will receive best practice Early Childhood Intervention (ECI) based on the ECIA National Guidelines for Best Practice Early Childhood Intervention (ECIA February 2016). The Guidelines provide an evidence-based framework for excellence in service delivery developed by and for the ECI Sector and commissioned by NDIA.

Key messages:

  • The Scheme – and ECEI – is in transition and therefore there has not as yet been adequate opportunity for the ECEI Approach to become operational in the various jurisdictions across the country. It is anticipated that over time participants, service providers and ECI Partners will gain a greater understanding of how the Scheme can and should work. There is an emerging need however, to address some of the confusion relating to policy, funding and practice to prevent standing in the way of children and their families achieving their goals and aspirations.

  • The development of a National policy framework and guidelines for the NDIS ECEI approach underpinned by best practice early childhood intervention based on the ECIA National Guidelines for Best Practice Early Childhood Intervention (ECIA February 2016) would ensure consistency of protocols, pactices, procedures and systems across jurisdictions and at local levels. This will assist in improving the understanding of ECEI, provide clarity in eligibility, increase access to relevant and appropriate information, enhance the sharing of information (with client consent), reduce access barriers, improve response times and reduce confusion. ECIA’s Best Practice Project will be critical in informing the NDIA about the direction needed for service systems change.

  • NDIA’s commitment to best practice early childhood intervention through the development of the NDIS ECEI is evident and welcome. There is a strong belief from ECIA and the sector that the ECEI Approach can deliver effective individualised approaches to children and their families/carers. There is a need however for long term robust evaluation to demonstrate the quality outcomes for children and their families.

  • The diversity of the service system across Australia needs to be considered in the rollout of ECEI. For example, impacts on rural and remote communities, variation in state/local governance structures and access to highly skilled specialists/specialist services. ECIA’s Best Practice Project is assisting with this.

  • ECIA’s Best Practice Project is an initiative of ECIA and funded by the NDIA to explore the strengths and challenges in each jurisdiction and across the services system (including the integration between disability, health and education). The Project will provide further advice to NDIA to inform the further implementation of ECEI and service planning. The findings from this Project need to be seen as the commencement of an ongoing continuous improvement framework.

  • A key aspect of the ECEI approach is the appointment of Early Childhood Partners as the first point of contact for children and families. They need to be experienced and qualified organisations and Practitioners with strong local knowledge and understanding of the needs of children and their families to deliver the ECEI Services. Workforce recruitment and retention strategies, along with mandatory ECI Best Practice training are fundamental to the ongoing success children and their families achieving their aspirational goals.

  • Collaboration would be strengthened through the establishment of partnership platforms to support integration across service sectors, including disability, health, education, child protection and family violence at local levels. Collaboration at National and State levels are supported to high level strategic development and facilitate joint opportunities for building on current evidence to support best practice.

  • Technology/ICT developments are required to support service coordination, protect the privacy of client information when sharing between services, offer opportunities for access to specialist services not available in local areas, provide access to information in outreach services and provide opportunities for online training.

Detailed feedback and recommendations:

Relevant TOR Key Issues

Item

a.

The o There is concern relating to the Scheme ECI eligibility criteria and how it is interpreted from place to place by Partners, Service Providers and community members. eligibility o Lack of awareness and understanding of the eligibility criteria across sectors and in thecommunity. criteria for o There is uneasiness that eligibility appears to come from the place of “having to prove howbad the situation is” rather than seen as a social model of health/preventative model.determining o There is confusion about language/use of terms and a need for a common and agreedunderstanding around particular terms (particularly across sectors. i.e. disability,developmental delay/global developmental Delay.access to the o There is fear that children and families with support needs may “miss out under the Scheme”ECEI and be left without services.pathway. o Children and families not eligible need to be reassured that there are alternatives andassisted by NDIA/Partners to access alternatives that they require. There is currentlyvariability in ability to access alternatives across state jurisdictions and regional areas.o Consideration needs to be given to children/families who require short term/temporarysupport or single services. i.e. Speech Pathology, Occupational Therapy, Psychology,Physiotherapy.o Low literacy/English Literacy are known to impact on the ability to access, navigate andunderstand the NDIS and broader service system. This is particularly highlighted in ATSI,CALD, low socio-economic and remote communities. There is concern that vulnerablegroups are not accessing the service.

Key recommendations:

  1. The ‘no criteria’ approach ensures no child is left out. Any child where there is a concern about developmentcan get access to timely and appropriate support. The ECEI Approach is a ‘Pathway’ to support – not agateway which implies there are some who ‘don’t get in’.
  2. NDIA to collaborate with ECIA and coordinate ECI sector expertise (nationally) to inform the developmentof a policy framework and guidelines for the ECEI approach (this should include clarity of eligibilityguidelines item/services available under the Scheme and a glossary of common language definition).
  3. Local social marketing campaigns to raise the awareness in the community/mitigate anxiety and fear. Thesecampaigns would be tailored to local populations.
  4. Establishment of partnership platforms/learning HUBs between Early Childhood Partners, the ECI sectorsector and other sectors such as health and education to increase knowledge and understanding of best practiceECI, referral pathways and local area supports.
  5. A National Disability workforce development and recruitment strategy be development and implemented.This strategy would include NDIA working with the sector, Universities and TAFE’s to agree on workforceskills competencies, plan and respond for the future ongoing needs, support student placement, considerincentives to attract new graduates to rural and remote areas).

Relevant TOR Key Issues

Item

b.The service o ECI services:needs of • need to be based on the ECIA National Guidelines;NDIS • need to be establishing concerns, goals, barriers, developing a functional picture ofthe child in the context of natural settings underpins recommendations for otherservices/supports.participants • services need to be local;

support • choice of services needs to be available regardless of where people live;under the • Practitioners/Clinicians need to be skilled and understand the issues relating specificECEI disabilities/developmental delay;pathway. • outreach models need to be available to isolate and remote families;

  • information needs to be shared (safely and with consent) between serviceproviders/sectors to prevent the family having to retell their story;
  • families need to be kept informed and communication frequent;

**require an understanding of cultural differences and how to respond appropriately and resourced to do this;

  • acknowledgement of travel time and costs of travel factored into the Approach, specifically in regional and remote communities; and
  • support for families to travel to appointments is required in some circumstances. (i.e. rural and remote, financially disadvantaged.) Flexibility is required to develop and trial ‘new ways’ of providing access for CALD/Refugee/Asylum Seekers and ATSI families.

Key Recommendations:

  • NDIA to collaborate with ECIA and coordinate ECI sector expertise nationally) to inform the development of a policy framework and guidelines for the ECEI approach (this should include clarity on eligibility guidelines item/services available under the scheme and a glossary of common language definition and a “Good Practice Guide”)
  • A National ECEI Annual Training calendar be developed to support mandatory training/competencies for ECEI services. (including: face-to-face training, webinars and online).
  • That Cultural Diversity and Reconciliation Plans be required by all ECI services (these would include mandatory cultural awareness training for staff).
  • Further work be undertaken to address emerging evidence of issues relating to unit costs impacting service providers such as cancellation policies, travel cost/time complex clients and growth corridors)
  • Funding trials to increase access for CALD/refugees and ATSI. Relevant TOR Key Issues Item c The o There are delays in accessing the ECEI Approach and receiving services. timeframe o Some families are not feeling supported and are being kept informed while they wait for entry into the Approach assessment plans and initial provision of services. services o Timeframes vary significantly for responding to queries; responding to referrals; acknowledgement of referral service commencement; and wait list management. ECEI pathway o Information suggests that families from CALD Refugee and ATSI families are not always accessing needed services. o Sharing/safe transfer client information is inconsistent need improved ICT systems between sectors health primary education child protection family violence. o All Partners must have access up to date local directories including private provider info. o Since December 2016 Nepean Blue Mountains pilot ECEI partners directed Agency focus on plan reviews pre-planning significant number children bypassed previous year. This took six months clear While ongoing reviews Agency attempts addressed scheme access without going through ECEI path Inquiries now channelled back ECEI Partners NAT This doesn’t prevent shopfront requests Access Request Forms This doesn’t prevent shopfront requests Access Request Forms. in NSW under transition arrangement total Year 1/Year 2 focus defined children Pre planning commenced true approach since end June Approach hasn’t fully operated these arrangements. The COAG agreement defines South Australia only small number (28 per quarter) funded plans for kids aged 0-14 in financial years 17/18 Significant concern limited access based low targets rather than needs. Key Recommendations: It’s recommended Early Childhood Partners operational six months prior Scheme roll-out each area. That Cultural Diversity Reconciliation Plans required all ECI Services include mandatory cultural awareness training staff.

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ECIA supports the “establish an industry advisory group to design and test ICT system changes before they are introduced” (NDS May 2017).

Relevant TOR Key Issues

Item d.

The adequacy of funding for services under the ECEI pathway.

  • Due to the responsive and individualised approach to service delivery, unit costing is difficult to quantify. One of the underpinning principles of the Approach that has influenced the success in the NBM pilot is the employment of a multidisciplinary team of ECI practitioners.
  • For the pathway to operate with the intended outcome of all children receiving timely targeted support, the team must consist of expert professionals.
  • This comes at a cost and the NDIA needs to invest in this if the ECEI Approach is to have any chance to be successfully implemented. With expert practitioners supporting pathways for young children, there should be a reduction in the numbers entering the full scheme.
  • Currently there is inadequate resourcing of:
    • Collaboration between services and across sectors;
    • travel (particularly in rural and remote areas);
    • technology to enable collaboration and access to remote areas and consultations;
    • ongoing mandatory training in best practice (particularly in relation to family-centred practice and the key worker model) for all Early Childhood Partners, NDIA and LAC staff, specifically planners). This training should be based on the ECIA National Guidelines for Best Practice Early Childhood Intervention.
  • This comes at a cost and the NDIA needs to invest in this if the ECEI Approach is to have any chance to be successfully implemented.

Key recommendations:

  1. Establishment of partnership platforms/learning HUBs between Early Childhood Partners, the ECI sector and other sectors such as health and education to increase knowledge and understanding of best practice ECI, referral pathways and local area supports.
  2. A Mandatory requirement for all ECEI Partners to invest in employing experienced ECI practitioners
  3. Funding for ICT infrastructure and technology solutions to enable collaboration, shared training/webinars, case-conferencing, skype/online consultations and chat rooms, e-referral (sharing of client information with consent).
  4. A National ECEI Annual Training calendar be developed to support mandatory training/competencies for ECEI services. (including: face to face training, webinars and online).
  5. Further work be undertaken to address the emerging evidence of issues relating to unit costs impacting on service providers (such as cancellation policies, travel cost/time, complex clients and growth corridors).

Relevant TOR Key Issues

Item e.

The costs associated with ECEI services, including costs in relation to initial diagnosis and testing for potential ECEI participants.

  • Diagnosis and testing is not part of the Approach. While a child might have further assessment and diagnosis at some stage, this cost can be attributed to Health through Child Development Units. Functional assessments would form part of the interactions with the child/family throughout their time in the pathway. This can be a combination of such tools as Ages and Stages and Routine Based Interviews.
  • Funding needs to reflect the actual time that services take to complete all components of the work required to achieve best practice.
  • Funding needs to be based on “realistic” and “true” costs.
  • Review and revision of the costs of service provision in rural, regional and high growth areas needs to be addresses to ensure equity in ECI delivery.

Key recommendations:

  1. Travel to support families in natural settings needs to be factored in. This is not a centre-based model of service provision.
  2. The costs of employing experienced ECI practitioners needs to be factored into funding. This is a necessity, not a ‘nice to have’.

Relevant TOR Key Issues

Item f.

  • Early Childhood assistance to families in the pathway to appropriate services. evidence of

  • It is expected that there will be a system for feedback to enable stakeholders to voice any concerns they have, and that there are evaluations to determine whether the needs of children are met and goals are being achieve. De-identified community feedback and evaluation information should be made available. of the ECEI Approach

  • There is currently still limited evaluation and research data to support effectiveness of the approach. This has been hindered by the staggered rollout of the Scheme and the ECEI Approach. The Approach needs time to operate across the range of jurisdictions for any effective and reliable evaluation to be undertaken.

  • The evidence of the effectiveness of the Approach in one region can be seen in the data collected in the Nepean Blue Mountains pilot in the first year of operation.

  • A “temporary hybrid” model of ECEI partner has been implemented in SA involving the NDIA and a “clinical” partner. This model demonstrated limitations in its ability to deliver the outcomes required of an ECEI partner, and has caused further confusion regarding the ECEI model in SA. Key recommendations:

  1. Adoption of the ECIA National guidelines on the delivery of the ECEI Approach be made a requirement by NDIA Partners and ECI service providers across Australia.
  2. NDIA resource ECIA (National) to further develop the Quality Framework, including the development of agency self-assessment audit tools, relevant policy templates and resources required to support agencies achieve compliance to the standards. (including exploring the feasibility of the National Guidelines being included into existing Accreditation Systems i.e. ISO, QIP, GPA.).
  3. Grants be made available to undertake and publish research determining the effectiveness of ECEI at: individual/family and community levels, system level, Partner/Service Provider levels.
  4. Funding of a National online central repository of research data and emerging evidence be established. ECIA as a National peak body is well placed to take on this function.
  5. A National ECI Evaluation Framework be developed and implemented to measure both the roll-out of the Scheme and the effectiveness of the ECEI Approach (this would include the role of NDIA, Academia and the sector).
  6. NDIA consider developing a system to consistently collect and analyse client and service provider feedback/complaints across jurisdictions, with a report published annually with key findings and recommendations. (data would be deidentified)

Relevant TOR Key Issues

Item g.

The
o Assessment tools and methods are not seen to be culturally (CALD and ATSI children/families) robustness of the data
o Some feedback indicates that the PEDI-CAT is not sensitive enough for use with all children aged 0-6 years.

o Tools for CALD/Refugee specific assessment are required.identify and deliver the broader concept of family and community.services to participants under the ECEI. Key recommendations:

  1. Assessment tools and assessment processes be reviewed to take into consideration how, “generalist”, “comprehensive” and “discipline specific” assessment information is gathered and coordinated.
  2. The specific needs of CALD/Refugees and ATSI communities are taken into consideration in the design of assessment tools and the method of conducting assessments.
  3. Training for all staff conducting assessments and developing plans in Child/family centred practice and inter-agency care planning.
  4. A deep understanding of the researched best practice for ECI and focus on connecting with community is imperative. Knowledge of the diversity of services in a community underpins the capacity to deliver

Relevant TOR

Key Issues

Item h. The o Information currently available is “fragmented” and difficult to access if you don’t know adequacy of what you are looking for. information for potential ECEI participants and other ostakeholders. o All ECI participants have the right to receive appropriate and relevant information in the format most appropriate to their needs. o Partners/service providers need to ensure that all Practitioners are suitably skilled and up to date with current information. o The slower than expected roll-out of Early Childhood Partners and variation in jurisdictions has generated confusion for families and providers and delayed access for young children to the NDIS ECEI. o At this stage, there are no mechanisms in place for parties delivering the ECEI approach – NDIA, Early Childhood Partners and ECEI service providers/other sectors – to engage, share information, resources and expertise. o There is a need for sharing of client information between providers/sectors (with informed client consent) to prevent children/families having to retell their stories. o Latest materials are useful. There is still a perception that the Approach serves as a mechanism for ‘keeping children out of the scheme’. The use of the term Gateway that has crept into some of the documentation perpetuates this belief. A stronger message about all interactions/supports in the ECEI Pathway is needed so that families don’t feel that they are being excluded. All aspects of the ECEI Pathway are part of the NDIS. Key recommendations:

  1. NDIA to collaborate with ECIA and coordinate ECI sector expertise (Nationally) to inform the development of a policy framework and guidelines for the ECEI Approach (this should include clarity of eligibility guidelines, items of service available under the Scheme and a glossary of common language definitions).
  2. NDIS/NDIA review current available information, including online/portal information in consideration of learnings, community feedback, literacy, language and disability.
  3. Consider standard approach to what information is provided at each stage of the pathway/client journey.
  4. Local social marketing campaigns to raise the awareness in the community/mitigate anxiety and fear. These campaigns would be tailored to local populations.
  5. Develop an online “orientation” to the scheme for service providers/Practitioners. (note: ECIA Best Practice Project is currently developing an online ECI learning module for stakeholders/Practitioners. The “orientation” online module could be seen as a “pre-requisite” for the learning module.
  6. Ensure access to up to date information on local services is available electronically and is updated bi- annually. i.e. service directories.
  7. Funding for ICT infrastructure and technology solutions to enable collaboration, shared training/webinars, case-conferencing, skype/online consultations and cha-rooms, e-referral (sharing of client information with client consent). Relevant TOR Key Issues Item i. the o The rural, remote and very remote areas are an ongoing concern. It is hard to understand accessibility how the ECEI Approach is going to work where there are no services or very limited services, of the ECEI or where services are already at capacity. Approach, oo Collaboration between local services if they are available will need to be resourced. including in oo Adequate travel support is needed for families to attend appointments. rural and oo There needs to be provision for flexibility in funding to meet the needs of complex clients remote living in remote areas. areas. oo Many children requiring ECI services are based in remote areas. Regular travel to access services in bigger centres is often not feasible. Consideration needs to be given to how children and families in rural and remote areas can access the services (particularly specialist services) they require from highly skilled Clinicians. i.e. Paediatric Services. oo Ongoing challenge of the tyranny of distance. Tap into what is in a community, build local capability, use technology to meet virtually with people.

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Key Recommendations:

Recommendation 1:

In the context of equity of access and choice, the key issue of travel both from family and service provider perspective requires review under the Scheme.

Recommendation 2:

Consideration of discretionary funding or a weighting in unit cost for complex clients in rural and remote areas.

Recommendation 3:

A National Disability workforce development and recruitment strategy be developed and implemented. This strategy would include NDIA working with the sector, Universities and TAFE’s to agree on workforce competencies, plan and respond for the future ongoing needs, support student placement, consider incentives to attract new graduates to rural and remote areas).

Recommendation 4:

Tap into what is in a community, build local capability, use technology to meet virtually with people.

Relevant TOR: Key Issues Item j. The principle of choice of ECEI providers. e The family needs to be provided with objective unbiased full information to enable informed choice to be made. Often there is no choice or very limited choice of services. e In remote communities, it is likely there will be limited choice of ECI service providers – and possible few with specific paediatric training. e ECIA Best Practice Project is currently conducting a National service scoping/service mapping project. Information from this work will provide further information of gaps in service types/locations. e Outreach models/alternative models of care should be further trialled and evaluated. e Ongoing feedback from the community and service providers needs to be listened to and monitor person-centre choice. e The principle of choice, however is not so relevant to the ECEI Approach as it is to NDIS service providers. ECEI is not about a particular organisation but rather it is an Approach that should be implemented with consistency, reliability and integrity. Too many ECEI providers can lead to mixed messaging, competition and a derailing of the Approach. Reliability, consistency and validity should all inform how the Approach is rolled out across Australia.

Key Recommendations:

Recommendation 1:

ECIA’s Best Practice Project -service mapping information and recommendations be used as evidence to inform addressing service gaps and funding trials of innovative flexible models of service delivery in areas where choice is limited.

Recommendation 2:

NDIA consider developing a system to consistently collect and analyse client and service provider feedback/complaints across jurisdictions, with a report published annually the key findings and recommendations. (data would be deidentified).

Relevant TOR: Key Issues Item k. The application of current research and innovation in identification of conditions covered by the ECEI Approach, and in the delivery of ECEI services. e Services and organisations should demonstrate the implementation of contemporary practice as outlined in the National Guidelines. e Evaluation, research and data collection should be inherent in the process to enable information to be gained from data. e Services and Practitioners need to be supported to understand, interpreted and apply current and future research. e There needs to be an interface between the sector and “academia.”

Key Recommendations:

Recommendation 1:

Funding of a National online central repository of research data and emerging evidence be established. ECIA as a National peak body is well placed to take on this function.

A National ECI Evaluation Framework be developed and implemented to measure both the roll-out of the

Scheme and the effectiveness of the ECEI Approach (this would include the role of NDIA, Academia and the sector).

Action research be funded “on the ground” at local levels to build further evidence of what works.

A website/database could be established to post and ECI share learnings. ECIA (National) is well placed to

take on this function.

Relevant TOR Key Issues Item I. Any other o More time needed for the Approach to operate before evaluating. However, learning from significant decisions thus far, such as using non-specialist ECI Partners and practitioners, should be evaluated to inform future roll out.

o There is concern about the variation in rollout across jurisdictions and the resulting anxiety. i.e. some areas have no NDIS, some no ECI, some have an “all age approach”. Communities fear that there will be “no money left in the bucket” for their child in their area.

o It is difficult for services to plan for the longer term and commit to investment in an uncertain and changing environment.

o Concern around the availability of suitably qualified and experienced workforce.

o There is also concern that funding constraints will lead to the employment of graduates with lower level qualifications and/or less experience.

o Reassurance needs to be given to community that the sequencing in the rollout will not result in inequities for children and families.

o Consider “scholarships”/ enhancements to attract new graduates/skilled staff to rural and remote areas.

o More time needed for the Approach to operate before evaluating. However, learning from decisions thus far, such as using non-specialist ECI providers and practitioners, should be evaluated to inform future roll out.

Key recommendations:

  • A National Disability workforce development and recruitment strategy be developed and implemented. This strategy would include NDIA working with the sector, Universities and TAFE’s to agree on workforce competencies, plan and respond for the future ongoing needs, support student placement, consider incentives to attract new graduates to rural and remote areas).
  • ECIA endorsed the publication of additional data and information to assist providers to better plan and invest for the future and the recommendation of the Productivity Commission (July 2017) to publish more detailed market position statements.