Joint Standing Committee
on the National Disability
Insurance Scheme (NDIS)
inquiry into Provision of Services under the NDIS
Early Childhood Early
Intervention Approach
Queensland Government
submission
Table of Contents
Introduction ……………………………………………………………………………………………………………………. 3
Eligibility criteria for determining access to the ECEI pathway ……………………………………………….. 4
The service needs of NDIS participants receiving support under the ECEI pathway ………………….. 5
The timeframe in receiving services under the ECEI pathway ………………………………………………… 5
The adequacy of funding for services under the ECEI pathway ……………………………………………… 6
The costs associated with ECEI services, including costs related to initial diagnosis and testing for ECEI participants ……………………………………………………………………………………………………… 7
The evidence for the effectiveness of the ECEI approach ……………………………………………………… 8
The robustness of the data required to identify and deliver services to participants under the ECEI approach …………………………………………………………………………………………………………………. 8
The adequacy of information for potential ECEI participants and other stakeholders …………………. 8
The accessibility of the ECEI approach including in rural and remote areas……………………………… 9
The principle of choice of ECEI providers …………………………………………………………………………. 10
The application of current research and innovation in the identification of conditions covered by the ECEI approach and in the delivery of services …………………………………………………………….. 10
Any other related matters ……………………………………………………………………………………………….. 11
Conclusion …………………………………………………………………………………………………………………… 12
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Introduction
The Queensland Government submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS) inquiry into provision of services under the Early Childhood Early Intervention (ECEI) approach has been prepared in consultation with the following agencies:
Department of Aboriginal and Torres Strait Islander Partnerships
Department of Communities, Child Safety and Disability Services
Department of Education and Training Department of Health Department of the Premier and Cabinet Queensland Treasury.
The National Disability Insurance Agency’s (NDIA) introduction of the ECEI approach on 26 February 2016 was a positive step towards recognising the holistic needs of a child. These needs may include complementary supports being put in place for the child, involving early childhood educators and disability specialists working together.
Queensland’s transition to the NDIS commenced on 1 July 2016. At 30 June 2017, the NDIA reported that 7,249 Queensland participants have approved plans. This includes 862 children 0-6 years of age with an approved NDIS plan. On 13 July 2017, the Scheme Actuary reported an additional 254 children were being supported through the ECEI gateway at 30 June 2017 (i.e. linked to mainstream supports). ECEI community partners are operating in each transitioning area. Partners are intended to commence on the day an area phases into the scheme.
Queensland’s ECEI partners are UnitingCare Community in Townsville (commenced 1 July 2016), Mackay (commenced 1 November 2016), and Toowoomba (commenced 1 January 2017); EACH in Ipswich from 1 July 2017; and BUSHKids in Bundaberg from 1 July 2017. An ECEI partner will commence in Rockhampton from 1 November 2017.
Experience to date demonstrates the primary issues in respect of the provision of services under the ECEI approach in Queensland are: inconsistent application of eligibility and access criteria under the ECEI approach for children with similar needs the NDIS principle of choice and control is not apparent in the operationalisation of the approach, as is evidenced through the: engagement and recruitment of a single provider in a given area potential conflict of interest in ECEI partners having dual roles as planners and providers of funded supports geographic limitations (i.e. ECEI service covers only a small part of the entire NDIS transition area, resulting in some participants being unable to access an ECEI service). challenges in the provision of services in rural and remote communities, and to Aboriginal and Torres Strait Islander peoples, including in thin or non-existent markets inadequate allocation of travel allowance in plans to enable clients to access ECEI-recommended services (for example, there are reports of a maximum of 12 hours of travel being allocated for clients in rural and remote areas to reach an ECEI service).
Eligibility criteria for determining access to the ECEI pathway Key issue: Queensland has experienced inconsistent application of eligibility criteria application in areas where transition has occurred. The ECEI eligibility criteria are sufficiently broad and provide an opportunity for children to receive interventions that will potentially mean they do not need to continue on the pathway to the NDIS, or reduce the level of support required over the longer term. However, there have been some reports in a number of transition areas in Queensland that only children with significant impairments have been accessing ECEI services and supports, which indicates the broad eligibility criteria are being applied inconsistently. It is important that the eligibility criteria are applied consistently to enable all eligible children to access and benefit from early intervention supports while further exploratory work is undertaken to support an accurate diagnosis.
In some areas, ECEI partners are asking families to provide extensive documentation to support assessment and diagnosis when this is not required. This administrative burden impacts on the capacity of state health providers who are asked to undertake the assessments, and creates delays for families in accessing ECEI services. In at least one area, the ECEI provider required specific detail about the severity of impairment to determine if children meet the criteria for access to ECEI. Queensland’s understanding is that the ECEI approach to entry is only that children have developmental delay or disability, regardless of diagnosis. Standardised assessment results have already been identified as a key measure for determining entry.
The following factors are suggested as ways of enhancing the understanding and application of the ECEI eligibility criteria: improving consistency in the ECEI eligibility assessment process to minimise the risk of conflicting application and criteria interpretation of ECEI partners improving consistency, wherever possible, as to how families access the ECEI pathway based on where they live, including whether families receive contact over the phone or face to face. These variations have resulted in some families experiencing a diminishment in the quality of the interaction clarifying access to the scheme for children who have only one area of delay e.g. severe language impairment. Function and need must remain at the core of the scheme; the number of impairment domains and disability diagnosis should not be determinants of whether or not a child is eligible clarifying the definition of short-term interventions making eligibility and pathway information transparent so families can understand and determine whether their child meets the access criteria providing clearer communication and ensuring messaging aligns with the ECEI principle that a diagnosis is not needed for young children to access support from the ECEI community partner; and to advise families up-front whether a psychologist or paediatrician report will be required to support eligibility determination and access to the ECEI pathway providing a clear strategy for ECEI coverage for Queensland rural and remote areas, including a map detailing ECEI coverage and a plan to meet any gaps.
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The service needs of NDIS participants receiving support under the ECEI pathway Consistent with the family and child-centred focus of the NDIS’s ECEI approach, and to strengthen the current ECEI pathway, improved clarity is needed about the role of families in decisions about therapy or other supports to be included in a child’s plan.
While experience varies across transition areas, instances have been reported where the plans for infants and young children with identified disabilities (such as hearing impairment and cochlear implant) who are not yet showing functional impairment, do not include the necessary interventions (based on evidence) to minimise functional impairments in the future. In the absence of early communication intervention, closing the gap between these children and their peers when the functional impairment becomes evident will prove costly to the scheme.
A published guide around standard packages of support for specific presentations could help address this issue and help guide planning processes. This approach would enable choice and control while guiding the type of supports that may be suitable for some of the major disability groups.
Culturally capable service providers are required to deliver services to Aboriginal and Torres Strait Islander peoples and ensure services are tailored appropriately. There is a high level of unmet need for early intervention services to address the prevalence of Foetal Alcohol Spectrum Disorder among Aboriginal and Torres Strait Islander children.
The following services would best meet the needs of children, including children in care, accessing ECEI. Queensland considers these supports need to be sufficiently resourced and available under each ECEI:
Skills and Capacity Building Multidisciplinary therapy
Speech and Language Pathology Communication Support
Physiotherapy Aids/Equipment
Occupational Therapy Specialist Assessment
Behaviour Intervention and Support Disability Specific Training for
Carers/Families. Counselling/Social Work/Psychology
The timeframe in receiving services under the ECEI pathway The ECEI partners in Queensland have generally been ready to commence operations three months prior to an area commencing transition. However, even though the providers have been in place, a number of children have experienced waiting times of between three to six months to access the scheme. The delays highlight some process issues regarding prioritisation and triaging of referrals by ECEI providers to respond to urgent issues in a timely way. Examples include: ECEI partner not being established at the time transition commenced in one area and, after establishment, there was a time lag in ECEI staff readiness to commence planning activities with children in out-of-home care. the timeframe from first contact with the ECEI partner to a plan being approved can take between three to six months; delays appear to be linked to complexity of need.
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For a child entering the tertiary child protection system, it is critical for ECEI access with the ECEI partner to occur in parallel to the commencement of case planning.
A key issue with the timeframes for accessing these services is the availability of ECEI providers to deliver services after the NDIS plan or supports have been agreed to by the ECEI partner with families.
Thin Markets
Thin markets impact on several areas of interest to this inquiry – timeframes for the ECEI service delivery, access for participants to needed services, and the principle of choice.
The NDIS Rural and Remote Strategy explicitly recognises the challenges of responding to ‘small populations dispersed across vast geographic regions, limited infrastructure, and difficulty in attracting professional personnel’.1
Thin markets exist in some areas of specialist therapy supports such as complex seating, specialist assistive technology services, complex paediatric feeding, and behaviour support. The market response in some locations for these services has also been slower than expected, creating gaps in service provision. Queensland considers the ECEI program should liaise with local services to ensure that gaps in services are addressed and duplication minimised.
The timeframe for delivering services is especially challenging in areas where the market is thin or non-existent. An option to address this issue is to develop a joint or shared market model with formal involvement of agencies operating in the area. In addition, engagement with local communities needs to be part of the solution in recognition of the fact that some markets will remain a challenge despite extensive or significant efforts and investment.
Where the ECEI market is thin or absent, including for access to specialist assessments, the NDIA should consider innovative models to achieve a balance between the principles of choice and control and availability of services.
Building on evidence from the NDIA’s market assessments and Queensland’s significant participant and provider readiness investment, Queensland has funded a peak body to engage with providers in areas where markets are likely to be thin to identify specific issues.
This work has been augmented by projects funded through the Sector Development Fund in 2016-17. The focus of these projects is to build the capacity of organisations operating in identified rural and remote communities, Aboriginal and Torres Strait Islander service providers and services, and multicultural and universal service providers, by harnessing and bringing together engagement, business and sector stewardship expertise to develop and execute initiatives that meet the unique features, challenges and opportunities of hard to reach and diverse market segments in Queensland.
Elements of the projects include: identifying level of engagement with NDIS and local market opportunities, and designing tailored strategies to empower service providers to engage strategically with NDIS enabling service providers to identify, leverage and extend latent organisational resources, innovations and capacities into the NDIS environment
1 National Disability Insurance Agency Rural and Remote Strategy 2016–2019, February 2016, page 7
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empowering service providers to lead and engage strategically with communities to support development of business insights and market capacities that meet the community’s disability support needs supporting service providers to utilise and tailor existing tools and resources to support ongoing transition and growth, particularly skills to respond to consumer needs.
The adequacy of funding for services under the ECEI pathway Queensland has observed that the adequacy of plan funding can vary based on the planner’s skill and knowledge. It is important the ECEI approach operates as planned, through engagement with families to develop a shared understanding of the child’s needs, and then links the child to appropriate, evidence-based mainstream and/or funded interventions. There are instances where ECEI partners are appearing to rush this process in order to develop a first plan, which may result in inconsistent funded supports compared to other children with the same functional assessment. There are examples of plans with inadequate funding for related costs e.g. travel and case management. In these cases, the support funding will not have the intended impacts.
Queensland expects ECEI funding to be sufficient to ensure children with disability aged nought to six years of age, including those within the child protection system, are not disadvantaged by transition, and that they achieve outcomes through ECEI equal or greater to those previously achieved through other services.
As the rollout of the NDIS in Queensland is in the early stages, Queensland does not yet have sufficient information to advise on levels of funding children are receiving to meet their ongoing needs or on outcomes achieved through their NDIS plan.
The costs associated with ECEI services, including costs related to initial diagnosis and testing for ECEI participants Under the COAG Principles, the diagnosis of conditions is the responsibility of the health system, with the understanding that the ECEI assessments enable functional profiling rather than diagnosis. Collaborative approaches between the NDIS and health systems are essential to facilitate appropriate referral pathways between the services.
As noted in the section on eligibility, some families are being requested to provide extensive specialist assessments to support eligibility and needs assessment, with a flow-on impact on childhood community health services receiving increased referrals for assessments to support diagnosis.
Queensland expects there should not be any cost to the participant in relation to initial diagnosis and testing for potential ECEI participants. However, where the type of assessment requires a private specialist assessment (not available through the Queensland Health system), many parents may struggle with meeting the costs. Issues could also arise where public or private providers are unavailable locally and the family needs to travel for the assessment. In these situations, parents may decide the diagnostic step is too challenging and therefore to forgo accessing the ECEI support the child requires; this may have lasting impacts on the child’s development, and consequently result in higher costs to the scheme.
In a highly dispersed state such as Queensland, capacity for the health system to respond quickly in rural and remote areas is more limited than in metropolitan centres. This could lead to families experiencing delays in accessing assessments and, for some families, the cost of accessing a private specialist is prohibitive. Queensland will continue to raise this issue with the NDIA.
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The evidence for the effectiveness of the ECEI approach Queensland notes ECEI has been very beneficial to many children in the child protection system where there has not been a formalised diagnosis at the time of referral or entry to the child protection system. Where a child experiences transition between out-of-home care placements, signs of developmental delay may be missed. In areas where ECEI is active, children are being referred for assessment by ECEI partners, and are benefitting from access to early intervention supports.
The ECEI approach is already benefitting children in the child protection system, which is a critical cohort. Evidence of the benefits will become more obvious as partners gain more experience and the market matures.
With respect to all ECEI participants, there has been limited demonstration of the effectiveness of the ECEI approach in respect of the ‘insurance approach’ required to reduce the long-term functional impact of a disability. For instance, early investment in hearing and communication therapies for children (prior to a significant gap in function ability emerging) can prevent a larger functional gap developing, which would be more difficult to close in the longer term.
Anecdotal reports indicate that most services being delivered at this time through ECEI providers are direct interventions rather than inclusive of community linkages and family capacity building as described in the ECEI Approach paper. Inclusion of such services, which make the ECEI such an exciting and innovative initiative, needs to occur to fulfil its potential.
Given the scale and the nature of the NDIS reform, Queensland suggests consideration is given to a staged evaluation aligned to key NDIS milestones as transition progresses. For example, a longitudinal evaluation of outcomes for children from a range of cohorts (Indigenous, children with severe developmental delay, very young [two to three years of age], older children [4 to 6 years of age] may elicit a comprehensive picture about the outcomes achieved through the ECEI approach.
The robustness of the data required to identify and deliver services to participants under the ECEI approach The NDIS data standard outlines information requirements from states and territories to support the transition of existing state clients to the NDIS. Queensland provided the NDIA with data that met the NDIA data standard. This included children 0 to 6 years of age who would be referred through the NDIA’s ECEI gateway.
The adequacy of information for potential ECEI participants and other stakeholders The NDIS ECEI approach information should be streamlined so families and professionals can easily access and understand the approach, eligibility requirements, and the role of ECEI partner.
Clearer links on the NDIA website to provide information on the NDIS ECEI approach and related resources would make navigation of the ECEI website easier. This could include the Operational Guidelines, and other important resources, such as the research on Autism Spectrum Disorder or the Early Childhood Intervention Australia (ECIA) National Guidelines for Best Practice and contact details for ECEI community partners.
The accessibility of information on the ECEI approach in rural and remote areas requires specific consideration. Resources on how the ECEI pathway is delivered in these areas would be critical.
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Specific resources for Aboriginal and Torres Strait Islander people would ensure they are well informed and able to take advantage of ECEI services.
Overall, ECEI partners need to make it clear on their public websites that they are an ECEI partner and the pathway/s to services under the NDIS. Clearer links on the NDIS website to ECEI partners would also assist.
Queensland understands the NDIA will continue to contribute to the development of specific additional communication materials and information about ECEI for stakeholders in the child protection sector, including foster and kinship carers.
Slow recruitment to positions in the ECEI providers contributed to the delay in information being provided to participants and other stakeholders. ECEI partners need to ensure consistent information is provided to families.
In the absence of clarity about the referral and information pathways, additional impost arises on Queensland’s health system services to educate families about the ECEI approach, eligibility and how to access ECEI partners.
The accessibility of the ECEI approach including in rural and remote areas The timely establishment and presence of ECEI partners and LACs in rural and remote areas is critical.
Queensland’s experience during transition is that ECEI partners appear to have a geographic boundary (200-250 kilometre radius) from their base, which was agreed to during contract negotiations. Families who live outside this boundary report being required to travel to the nearest town to access ECEI partner services, which is causing stress and cost for those participants, particularly where the plan provides for services but not for transport to enable the participant to access the services.
These geographic limits result in some participants being unable to access an ECEI service. This is further compounded by the lack of other services and/or skills available in many rural and remote communities, including by LACs; families have been approaching LACs in the absence of ECEI supports.
There also appears to be illogical area boundaries for the ECEI service provider in some areas. For example, in Townsville the ECEI will service Charters Towers, Ayr and Ingham (which are all 1-2 hours’ drive from Townsville), but they are not able to provide services to families living on Magnetic Island, 20 minutes from Townsville by ferry). This results in inconsistencies between services and service approaches in neighbouring communities within the same LGA.
In the Darling Downs area, the ECEI partner contract does not cover the whole LGA. This results in differences in services and service approaches between neighbouring communities within the same LGA.
It is important for Aboriginal and Torres Strait Islander people, especially those in rural and remote areas, that ECEI services are well integrated with existing services, including local Aboriginal or Torres Strait Islander health services and existing mothers and babies programs. Provision of culturally capable and safe ECEI services is essential to mitigate downstream effects of disability and reduce the incidence of further functional impacts in later life. Queensland welcomes further
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planning to achieve equitable and efficient ECEI services to people living in remote areas, including discrete and remote Aboriginal and Torres Strait Islander communities.
Cultural factors are likely to require gender mix among ECEI partner staff to enable discussions to be held and decisions made in culturally appropriate ways for the groups concerned, as women’s and men’s business are likely to be real barriers if planning and engagement processes are not culturally appropriate.
The principle of choice of ECEI providers In Queensland, there is no choice of ECEI partners for consumers, as only one ECEI partner is recruited for a particular area. ECEI partners can also be providers for participants with an individualised plan. The lack of choice of providers will be a problem for families experiencing a breakdown in relationship with their ECEI provider.
Queensland also has concerns about the inherent conflict of interest arising from ECEI providers having dual roles both as planners and providers of supports contained in funded plans.
The existing model in Queensland of engaging one ECEI partner for each broad geographical location may have a negative impact for Aboriginal and Torres Strait Islander children who require culturally appropriate supports and who are already under-represented as recipients of funded supports. Services need to be tailored to meet the needs of Aboriginal and Torres Strait Islander peoples and people from CALD backgrounds, and few if any mainstream service providers possess paediatric expertise.
Provision of allied health services for young children, such as behaviour support, complex positioning, assistive technology, and complex paediatric feeding, is particularly limited in rural areas.
The choice of ECEI supports families can access is impacted by where they live, for instance in rural and remote areas.
The application of current research and innovation in the identification of conditions covered by the ECEI approach and in the delivery of services Queensland notes that the NDIS ECEI approach is supported by contemporary early childhood research, and focuses on a child’s capacity to function in everyday life situations rather than requiring specific identification or formal diagnosis of a child’s condition to receive support from an ECEI partner.
Queensland considers it is important that function and need remain at the core of this scheme. The number of impairment domains and the disability diagnosis should not be sole determinants of eligibility.
Contemporary practices are reflected in the service delivery and in building the early intervention market to get the best short and long-term outcomes for children with developmental delay or suspected and diagnosed disability.
Queensland proposes the NDIA works with ECEI providers to promote consistent understanding about best practice, evidence-based models of early intervention supports. These models would focus on the skills children need to develop and how interventions can be included in their daily routines to ensure repetition and practice within the home environment and/or natural settings.
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Over time, ECEI partners must also develop their expertise in delivering culturally sensitive and appropriate services to children in the child protection system who may present with complex trauma and disability related issues.
Parenting support as part of ECEI: Parenting programs for parents and carers of children with developmental delay or disability are most effective if introduced when children are young, from two years of age onwards. Evidence-based parenting programs improve child and family outcomes by reducing problem behaviour and parenting stress. Positive parenting strategies are very effective in helping parents to teach their children appropriate skills and behaviour in everyday activities at home and in the community.
Without the benefit of positive parenting strategies, parents and carers may use inappropriate parenting behaviour that can result in increased problem behaviour in children, particularly as children with disability approach their teenage years. This can lead to significantly increased demand for disability services, and in some cases the relinquishment of children with disability into voluntary out-of-home care.
This submission recommends the inclusion of evidence-based parenting training, such as Stepping Stones Triple P (SSTP), as a core component of the ECEI approach. It is consistent with the NDIS approach as it is a short-term investment early on in the child’s life that can result in reduced problem behaviours and increased independence and community participation for the child. It can also reduce long-term disability support costs for the child and family.
This recommendation is consistent with the COAG Principles, which state NDIS responsibilities will include supports that enable families and carers to maintain their caring role, and for early interventions that are likely to reduce the child’s future support needs.
Experience in Queensland has demonstrated an additional benefit for families who access SSTP seminars and group programs, through opportunities to meet other families of children with similar problems, hear their stories and discuss strategies for managing a range of behaviours as well as having opportunities to link with other families.
Access to a trained workforce is necessary to give effect to this recommendation. While it would require some training, there is already a body of SSTP accredited facilitators in Queensland, New South Wales and Victoria as a result of the recent five-year Stepping Stones Triple P Project run by the University of Queensland, University of Sydney and Monash University, with the support of the National Health and Medical Research Council.
In addition, the Queensland Government, as part of an early intervention response for families of children with disability, has been increasing community capacity to provide evidence-based parenting programs for parents and carers of children with developmental delay and disability. Since 2015-16, almost 90 staff from the Queensland Government and key non-government organisations have been trained and accredited in the provision of SSTP across the state. If some of these staff were employed by an ECEI provider, they will be in a good position to continue to deliver SSTP to parents and carers.
Any other related matters
Queensland’s Early Childhood Development Programs
Early intervention services for children with diagnosed or suspected disability are highly valued by Queensland communities. In response to significant concerns expressed by many Queensland parents about ECEIs’ capacity and capability to deliver the same outcomes for their children as
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Queensland’s Early Childhood Development Programs (ECDPs), in 2016 the Minister for Education made a commitment to continue to operate Queensland’s Early Childhood Development Programs (ECDPs) until 2020.
As a result, eligible children receiving early intervention services through ECDPs can continue to receive support regardless of their participation in the NDIS. By 2020, a review of the ECDPs will be undertaken to determine its long-term requirement and future.
ECEI for children in the child protection system Queensland expects the NDIA and each ECEI partner will invest sufficient resources to ensure relevant ECEI staff are trained and equipped to work with children in the child protection system, given their complex living arrangements and circumstances, and that consistent channels of communication are established with local child safety staff and sector organisations.
Children with high and complex care needs Queensland proposes effective clinical governance is established to ensure services are offered by professionals with the relevant skills and knowledge to support these clients, especially those with high and complex needs.
Conclusion
Thank you for the opportunity to provide a submission. If you have any further questions in relation to the Queensland Government’s response, contact:
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