Lifestart Co-operative Ltd
Submission to the Parliament of
Australia Joint Standing
Committee on the National
Disability Insurance Scheme -
Inquiry into the provision of services under the NDIS Early
Childhood Early Intervention
Approach
August 2017
Lifestart Submission to Joint Parliamentary Committee Inquiry
into NDIS Costs - Provision of Services under the ECIA Approach Page 1 of 14
Introduction
Lifestart welcomes the opportunity to provide a submission to the Joint Standing Committee on the National Disability Insurance Scheme - Inquiry into the provision of services under the NDIS Early Childhood Early Intervention Approach.
Lifestart was one of the initial four contracted partners by the National Disability Insurance Agency (NDIA) to pilot the Early Childhood Early Intervention Approach (ECEI), in October 2015 in the Nepean Blue Mountains Region, New South Wales.
Lifestart, in conjunction with other commissioned Partners assisted in providing
feedback and information and input into the design of the ECEI Approach announced by the NDIA in February 2016.
Lifestart’s Vision is that all children and young people are able to participate
inclusively and meaningfully in their community.
Since 1996, Lifestart has provided family-centred early intervention, therapeutic supports and school age years inclusion programs to children and young people, their families and carers.
Lifestart supports children and young people living with disability or delay aged
0-24 years, their families and carers through:
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early intervention
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school age years support
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specialised therapy
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inclusion in the community
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family information and support
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helping communities and services to build capacity. Lifestart currently supports over 3200 children, young people and their families. As of August 2017, Lifestart is delivering National Disability Insurance Scheme (NDIS) supports to over 730 participants.
Lifestart is an Early Childhood Partner delivering the Early Childhood Early
Intervention (ECEI) Approach in the Nepean Blue Mountains.
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Lifestart is one of the two Transition Advisor support services contracted by the NDIA to support Transition Providers across NSW to implement the ECEI Approach during transition to full scheme (until 30 June 2018).
Geographic Scope of Lifestart’s Services
Lifestart covers Greater Sydney, Blue Mountains out to Lithgow, Southern Highlands,
Illawarra and Shoalhaven regions. Lifestart has now been operating some services within the NDIS since July 2015 and by June 2018 will have transitioned most services to the NDIS.
Lifestart offers online support services beyond the regions specified above and is a registered NDIS provider to provide online supports outside of New South Wales.
Responses to Terms of Reference
a. The eligibility criteria for determining access to the ECEI pathway
Lifestart has been delivering the ECEI Approach in the Penrith and Blue Mountains areas since it was first piloted in the Nepean Blue Mountains in October 2015.
The National Disability Insurance Scheme Act 2013 (the NDIS Act) prescribes the
access criteria in which children are eligible to receive individualised reasonable and
necessary funded support plans. Children can access such supports if they meet
either the disability criteria or the early intervention, developmental delay criteria of the Act. Developmental delay is only used when the delay is not better explained by another established diagnosed disorder such as cerebral palsy or syndromes such as Down syndrome and Angelman syndrome.
The NDIS Act does not require a diagnosis for a child to receive early intervention supports but it does stipulate that the developmental delay results in substantial
functional impairment that results in the need for a co-ordinated, long term,
interdisciplinary service response that does not replace the supports that are the responsibility of another service system. These children are required to have an access determination made by the NDIA and an individualised funded plan developed by the Early Childhood Partner identifying the supports required to receive funded plans.
The NDIA National Access Team (NAT) are the delegates of the NDIS and are
responsible for making determinations as to whether a child meets the early
intervention criteria or the disability criteria for NDIS individual funded supports. Early
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Childhood Partners undertake functional assessments and assist families to complete an access request with appropriate information about the child’s functioning.
In addition to the supports described above, the ECEI Approach also enables short to medium term early intervention supports to be provided to children and their families without having to have an access determination made by the NDIA. It will not provide support to children who are the responsibility of other service systems. Examples here would include children with isolated mild language delays as they would not be eligible for supports under the ECEI Approach and remain the responsibility for support and services provided through the Health system. Early Childhood Partners, contracted by the NDIA, may assist and support families to be referred to appropriate support services where needed.
The ECEI Approach, if delivered as designed, should only see children with
substantial functional impairment through disability or developmental delay enter the scheme for reasonable and necessary support plans. This is because all children
0 – 6 should first be seen by an experienced Early Childhood Partner. Early
Childhood Partners with qualified experienced staff in early childhood intervention are
able to make appropriate determinations about who meets the criteria for
developmental delay.
Recommendations:
❖ The NDIA as delegates of the NDIS ensures that only children who meet Developmental Delay criteria as outlined in the NDIS Act are granted access.
❖ That the ECEI Approach rolls out to children with disability and developmental delay and their families in the way it was developed and intended as per its implementation in the Nepean Blue Mountains.
b. The service needs of NDIS participants receiving support under the ECEI pathway
Supports provided under the ECEI Approach should be highly individualised and dependent upon the child’s and family’s needs. Early childhood intervention should always be individualised and should aim to provide parents and carers in the young child’s life the knowledge, skills and support to assist in maximising the potential of their child to allow them to participate meaningfully in all areas of their life.
Early childhood intervention works best when it occurs in the child’s natural
environments by the people who know the child best – parents, early education
teachers and carers. Strategies should be individualised and incorporated and
practised in the child’s everyday daily routines.
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If implemented correctly with experienced and well credentialed Early Childhood Partners, outcomes for children, their families and the scheme will be positive. It should ensure that children get the right support, in a timely manner and in the right
amount. The ECEI Approach is underpinned by appropriate assessment and
recommendations for intervention. It requires the Early Childhood Partners to be specialist and experienced early childhood intervention providers.
Examples of supports provided under the ECEI Approach by Lifestart include:
Example 1 A referral for a six year old child was received from an Aboriginal Out of Home Care Agency. The family and school reported that the child had some behaviours of concern across both settings. The ECEI worker visited the child and the foster family and also met with the Child Protection caseworker.
The child had ongoing issues with behaviours and it was assessed very early on that he was presenting with mental health issues and ECEI could provide some initial strategies to support classroom and home and assist with a referral to community mental health services.
A list of potential support services was provided to family and caseworker for mental health services and psychology services.
Strategies for school and home with visuals to help with the breakdown in
communication during the extreme behaviours were provided to the family.
The ECEI worker followed up with the family in a fortnight to see how the access to services was going.
The family had made initial contact with an appropriate service to support the child’s mental health support needs.
Example 2 An initial referral was received from a preschool. The ECEI worker contacted the preschool and family to further discuss the concerns identified including following instructions, understanding routines and issues with self-care skills.
A consultation from the speech pathologist occurred to assess the child and
strategies were subsequently implemented. These included assisting the child with communication and self-care skills such as establishing a bedtime routine to follow and learning to brush teeth and use the toilet independently.
The ECEI worker then observed the parents practising the strategies to build their child’s self-care skills and communication skills. These strategies have assisted with some of the behaviours of concern that were presenting whilst in the preschool
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setting. The preschool has reported that the child is doing well and the staff at the preschool are continuing to implement the strategies provided. Information was given to the family about a starting school group provided in their local community to assist with successful transition to school next year. A follow up visit with the mother was scheduled with no further issues identified. The family understands they can make further contact with Lifestart if required.
Recommendations:
❖ That the NDIA only sources experienced early childhood intervention support services that can demonstrate they have been operating under best practice principles.
❖ That the NDIA commissions Early Childhood Intervention Providers that
provide supervision and governance to support staff in their role of delivering appropriate assessment, short term early intervention support services and development and review of plans.
c. Timeframe in receiving services under the ECEI pathway The intention of the ECEI Approach is for children and their families to receive support in a timely manner. With the introduction of the ECEI Approach in the Nepean Blue Mountains, Early Childhood Partners were able to be responsive and
support new children and their families with little delay. This responsiveness has
been complicated by transition issues with the need for planning for ‘defined children’, i.e. a large number of children requiring individualised plans developed as they transition from the State funded early childhood intervention support services into the NDIS.
Lifestart has provided short term supports for up to six months through the short term (Initial Supports) to children and families through the ECEI Approach. When Lifestart has examined the average support timeframe for support provided to children and families in the Nepean Blue Mountains it has been approximately twelve to thirteen weeks in duration.
d. Adequacy of funding for services under the ECEI pathway Early Childhood Partners are required to undertake a number of supports and services including:
- Information and referral
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Capacity building of local community support services
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Plan development
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Plan implementation
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Plan Review Funding to undertake these roles works out to be $1,750 per child. This funding is spent in a flexible way. Not every child requires this level of support and some need a great deal more. The investment in capacity building and assisting children to be more included is a core component of the ECEI Approach and requires dedicated
resources, focus and collaborative planning with community and other support
services.
Modelling and costing work undertaken by Lifestart has identified that a unit cost of $2,500 per child would enable partners to effectively implement the Approach as designed.
Recommendation:
❖ That the NDIA increase the level of funding per average place to $2,500 to reflect the actual costs of provision of the ECEI Approach.
e. The costs associated with ECEI services, including costs in relation to initial diagnosis and testing for potential ECEI participants
As stated above there are significant costs associated with effectively delivering the ECEI Approach. Ensuring there is robust support for qualified staff to undertake the front end service delivery is essential in ensuring positive outcomes and increased inclusion opportunities for children with developmental delay and disability. Training and providing appropriate supervision to staff delivering the ECEI Approach is crucial. Managers and senior staff employed by Lifestart to deliver the ECEI Approach are
staff who have had considerable experience in delivering best practice early
childhood intervention.
The above factors are not currently reflected in the funding and there is a risk of reduced quality supports being delivered as a result. This is particularly the case where there is an under supply of allied health professionals. A strong investment in solid induction practices and peer supervision can also positively influence retention of the allied health workforce.
Staff delivering the ECEI Approach do not diagnose children. Diagnosis of disability and other conditions remains the responsibility of qualified practitioners through the Health system as outlined in the COAG Applied Principles and Tables of Support.
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ECEI staff are required to undertake appropriate functional screening to understand where the child’s support needs and areas of concern are. This information is usually collected from parents and observation of the child in their natural settings. Some families may have already sought assessment for their children through health or allied practitioners and this information is also taken into account when assessing and determining the support needs required for the child. Any early childhood intervention supports require a good assessment and understanding of the child’s needs and as such practitioners routinely undertake such assessments prior to providing supports to a child and family.
The NDIA does require Early Childhood Partners to administer the Paediatric
Evaluation of Disability inventory Computer Adaptive Test (PEDI–CAT) with families. This is a functional screening tool. The PEDI-CAT has been developed to screen for
functional delay, examine improvements for an individual after intervention and
evaluate and monitor group progress in evaluation and research. It measures four domains;
- daily activities,
- mobility,
- social/cognitive and
- responsibility (for children 3 and over). The PEDI-CAT provides normative standardised scores, age percentiles and T scores.
Lifestart has found that the PEDI-CAT tool is not a sensitive enough tool for young children and does not always identify appropriately the functional impact that a developmental delay or disability may be having on a young child. Therefore, staff often complement their assessment using other standardised reliable tools.
Lifestart has provided feedback about its experience of using the assessment tool with young children to the Agency. We are concerned that some of the results and findings are suggesting that children who are receiving early intervention supports do not have a developmental delay or disability. This is not our experience and we ensure that supports are appropriately targeted.
Lifestart knows from experience that there are many opportunities to build a socially and meaningfully inclusive community and that this work takes time. However, the competing issues and demands during transition have limited the opportunities to undertake this important community capacity building work. Such work requires a proper investment and focus.
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f. The evidence of the effectiveness of the ECEI Approach The ECEI Approach was initially rolled out as a pilot in the Nepean Blue Mountains. It
has been operating since October 2015. In most other jurisdictions it has been
operating for a significantly shorter period of time, with the exception of Townsville
where it commenced a little over 12 months ago. Trends of positive outcomes for
children and families have been emerging in the Nepean Blue Mountains but the
implementation of the ECEI Approach has been complicated by transition
arrangements and moving children and families from state/territory funded support services into the NDIS.
For example, in NSW, apart from the four Early Childhood Partners in Nepean Blue Mountains, an arrangement exists until the end of transition (30 June 2018) where up to 57 early childhood providers will be contracted by the NSW government to provide the supports required through the ECEI Approach.
In NSW, the state government previously funded the Stronger Together Initiative
which supported children with a wide range of needs. The NDIS introduced
legislation that defines who is able to be supported through a funded plan. This
change in eligibility is not well understood yet by early childhood intervention
providers and other services referring children for supports.
Another issue running concurrently with the above is that anyone is able to make a direct request to the NDIA for an assessment of eligibility to determine their access to the NDIS.
This background of a very wide gateway into services in NSW, and the ability for anyone to make a direct request to the NDIA for eligibility and access to the NDIS, has potentially resulted in higher than expected numbers in NSW. Recently, as an Early Childhood Partner, we were requested to undertake individualised support plans for children who had not been supported initially by Lifestart but had been granted access to the NDIS. Approximately one third of these children could have been supported through short term supports and did not require a funded plan of twelve months duration. This situation, if not addressed as a matter of urgency, will have an impact on the sustainability of the NDIS.
In addition to transitional issues, most of the Early Childhood Partners across NDIS roll out areas are just commencing and it will take time for evidence of the ECEI Approach to be gathered.
Trying to determine and assess the effectiveness of the ECEI Approach in such early operating stages across jurisdictions and at a time that is exacerbated by transitional
issues is complicated and would be difficult. Understanding and assessing the
effectiveness of the ECEI Approach in these circumstances would be premature.
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Recommendations:
❖ That conclusions about the effectiveness of the ECEI Approach not be drawn too early and quickly from limited data, information and during a period where transition issues are having a considerable effect on the outcomes that are able to be achieved.
❖ That community capacity initiatives that ensure better inclusion opportunities are
appropriately identified and funded to ensure this work is maintained and
remains focused.
g. The robustness of the data required to identify and deliver services to participants under the ECEI
Lifestart is unable to comment on the robustness of the data that was used originally to predict numbers of children aged 0-6 across trial sites and more recently in the transition to full scheme rollout of the ECEI Approach. We are aware from our current referrals that there are greater numbers than originally identified and this has put additional strain on ECEI Transition Providers and Early Childhood Partners. While this has a major impact on costs, proper implementation of the ECEI, as illustrated by the Nepean Blue Mountains pilots, should enable costs to be better managed.
Lifestart recognises that robust data collection is an essential component of assessing the efficacy of the ECEI Approach. As mentioned previously in this submission, most of the Early Childhood Partners across NDIS roll out areas are just commencing and it will take time for evidence of the ECEI Approach to be gathered. Best practice approaches, evidence based research and validated outcomes for participants should inform the ongoing implementation of the ECEI Approach.
h. The adequacy of information for potential participants and other stakeholders
As an Early Childhood Partner, Lifestart works closely with the local community and early childhood education (ECE) and support services. This assists with making sure referral pathways and the ECE supports and services are understood.
In addition to this, outreach work is also undertaken to ensure that harder to reach families can be engaged and also benefit from the ECEI Approach. For example, Lifestart supports various activities of the Nepean Community and Neighbourhood Services for the local aboriginal community including attending their centre when they run a local playgroup and being present at their monthly drop in/family services
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morning. This has allowed families to develop a rapport with Lifestart ECEI staff providing them with the opportunity to discuss any developmental concerns they may
have for their children and appropriate supports and strategies that may be
implemented.
i. The accessibility of the ECEI Approach, including in rural and remote areas
As stated elsewhere in this paper, Lifestart is of the view that specialist experienced
early childhood intervention providers should deliver services under the ECEI
Approach. The ECEI Approach is relatively new but the approach, if implemented
appropriately, will enable more children and families to be assisted whether or not a particular child will go on to receive a funded NDIS plan.
The success of the ECEI approach relies heavily on the expertise of Early Childhood Partners delivering the supports and services to children with developmental delay or disability and their families in their local communities. Effective delivery of the ECEI
Approach relies on strong knowledge of local community supports and referral
pathways; and the ability to link families with these networks.
Current workforce supply issues, particularly with allied health practitioners, will
almost certainly require partners delivering the ECEI approach also to be providers of early childhood intervention services. This is particularly so in rural and remote areas where the access to services is often limited.
Investment in the use of technology for some ECEI service provision is one way to resolve accessibility issues in some rural and remote areas.
j. The principle of choice of ECEI providers Lifestart supports the principle that families have a choice of ECEI Partners /
Providers. That is, where appropriate and viable, there are two Early Childhood
Partners that provide ECEI supports and services in a region. Currently in part of the
Nepean Blue Mountains, Lifestart and another NDIA Early Childhood Partner provide
the ECEI Approach.
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l. Any other related matters (a) Conflict of Interest
The concern about Conflict of Interest (COI) and the view that Partners cannot also be NDIS Providers because of the COI issues that this creates continues to be an impediment to ensuring that there will be an adequate supply of ECEI Partners and Early Childhood Intervention providers within the NDIS.
The ECEI Approach differs to the Local Area Coordinator (LAC) role in that Early Childhood Partners need to be able to undertake timely, front end service delivery and provision of short term early childhood intervention support services for children who do not require an individualised NDIS reasonable and necessary support plan. To undertake this support Early Childhood Partners need experienced qualified staff who can undertake assessments and make recommendations about the appropriate supports required.
Allied health clinicians and educators undertaking this work need to be well supported
through clinical governance arrangements. This will not be done effectively by
generalist services that do not have the specialised knowledge and experience in delivering early childhood intervention support services. The NDIA needs to invest in well credentialed staff and organisations with experience and a proven track record of delivering early childhood intervention support services that have good outcomes for children and their families.
The NDIA officers have indicated that in the second half of 2017, they will likely be going out to the market for Early Childhood Partners in NSW. It is unclear as to whether there will be a stipulation that an Early Childhood Partner cannot also be a provider. If it goes to market with this definitive condition, the NDIA will not be able to attract the appropriate organisations services with the expertise and structures in place to achieve the outcomes intended from the design of the ECEI Approach.
(b) Risk of moving to a medical model and not continuing
investment in evidence-based early childhood intervention
supports
There is an inherent risk posed by individualised funding models and providing families with unlimited choice and control with respect to early intervention supports. This is often because parents may not have all the best available information about what type of supports and services will provide their child with the best outcomes.
Parents and carers can be persuaded and captured by the idea that the more inputs or therapy support that they are able to obtain for their child, the better the chance of
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‘fixing’ or ‘curing’ their child. The conversation has shifted from the outcomes needing to be achieved to ‘how much therapy support can I get for my child’.
Many services are offering more hours of therapy by seeing the child in clinic or therapy rooms as opposed to in the child’s natural environment. The NDIS will miss the opportunity of its investment if it does not build the capacity of the child and of the family to be able to support the child. Some of the concerning identified themes emerging include:
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Parents turning away from early childhood intervention providers that are delivering evidenced based best practice supports
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Parents withdrawing their children from integrated settings such as preschool and early education settings so that their child can have ‘more therapy’
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Parents driving their children to numerous therapy appointments each week but not understanding what supports and interventions are being undertaken by the therapist.
Lifestart Early Childhood Partners are providing information to families and carers about what to look for in an Early Childhood Intervention provider and how discuss outcomes and ways of achieving these. However, families are overwhelmed with information, most of which initially comes from assessment or health providers that give generic advice such as ‘your child will need early intervention supports, such as occupational therapy or speech pathology. This information alone is not enough for families. It is the Early Childhood Partner’s role to provide information and support families to understand which types of services will offer the best outcome.
Recommendation:
That a concerted education and information campaign needs to be undertaken to better inform families about purchasing the supports and services that will obtain the best outcomes for their child.
(c) Responding to the needs of children in the school age years
The NDIA has indicated that it is concerned at the numbers of children in the 7+ age cohort currently entering the scheme with funded plans. Although there has been a traditional gap in services after early intervention, there appears to be predictions that this cohort will represent a large number in the NDIS. Effective early intervention support in the early years will build the capacity of families, education and community settings to use effective strategies and provide the inclusive environments that will best build the skills of children and produce positive outcomes. This should continue into the school years with intervention and support that not only involves working with a child directly but also includes parent/carer coaching and capacity building across education and other jurisdictions.
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This needs to be a collaborative effort undertaken by NDIA, education and other jurisdictions. It was pleasing to see references in the Productivity Review to services for children 7+ using learnings from ECEI Approach. Lifestart has already expressed a willingness to work with the NDIA on sharing the learnings from the development, implementation and review of its School Age Years (SAY) Inclusion Approach.
Conclusion
Lifestart continues to be supportive of the NDIS and the opportunity it brings to benefit and improve the lives of people with disability. There are many challenges in such a large transformation and reform of service delivery. The NDIS however cannot be
solely responsible for improving social inclusion and economic participation
opportunities for people with disability. The National Disability Strategy provides the policy framework to guide changes required to ensure all mainstream services are accessible for all Australians and identifies the commitment from all governments to improving inclusion and outcomes for people with disability.
A continued focus on outcomes for participants needs to be maintained. The ECEI Approach focuses on the outcomes to be achieved for young children and their families. Some of the principles of this approach and other support services such as the SAY program identified above may be able to be used successfully across the different life stages to improve outcomes for participants of the NDIS.
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