9 August 2017
Committee Secretary
NDIS Joint Committee
Department of the Senate
PO Box 6100
Parliament House
CANBERRA ACT 2600
AUSTRALIA
Dear Madam/Sir
Submission for the Parliamentary Inquiry - Provision of services under the NDIS Early
Childhood Early Intervention (ECEI) Approach
This submission has been collaboratively prepared by 4 early childhood intervention service providers that were all part of the NDIS trial in the Hunter Region - Hunter Prelude, Early Links Inclusion Support, Firstchance and Royal Institute of Deaf and Blind Children (RIDBC).
We believe that the experience of operating during the trial and more recently being part of the Year 1 roll out of the ECEI Approach enables us to offer a unique perspective on the provision of services under this approach.
Overall we believe that the ECEI Approach is a vital component of the local service system for families and with some adjustments, will assist families with a child with a disability to find the most appropriate pathway to access the supports that they need. In turn adequately resourcing the ECEI Approach will reduce the cost implications for NDIS.
We thank you for the opportunity to make a submission to the Parliamentary Inquiry and trust that the feedback that is received will enable the refinement of the ECEI Approach so that it can provide valuable supports for families.
Kind regards
Sue French
General Manager Early Links Inclusion Support
Darleen Taylor & Linda Rolland
General Manager & Program Manager, Firstchance
Rani Dibley
General Manager Hunter Prelude
Wendy Dorn
Program Manager, RIDBC Hunter
Eligibility criteria for determining access to the ECEI pathway
Based on our extensive experience with providing early childhood intervention supports to the local community, we believe that the ECE! eligibility criteria is broad enough to provide soft entry opportunities for the range of needs that families typically present with and were historically offered support for under ADHC funding.
A concern is that families and referral agencies do not fully understand eligibility criteria at this time. This is further compounded in the former trial site areas where the natural referral pathways were disrupted from 2013 — 2015 and families needed to go to NDIA in the first instance to test their eligibility for the Scheme and that is now changing back again. Further communication/promotion by NDIA is recommended as ECEI providers are not resourced to develop promotional material.
Service needs of NDIS participants receiving support under the ECEI pathway The ability to respond to the diversity of service needs of each child and family is a strength of the ECEI Approach. ECEI transitional providers have demonstrated skills and expertise to respond flexibly and the local knowledge of community connections to source support for the child and family. They also offer specialist knowledge to ensure that information given to families is accurate, avoids confusion or misinformation. The main service needs of families have been:
e Accessing a team of professionals to assess level of support and identify level of
functional impairment including any assistive technology prescription e Referral to mainstream supports e Support with completing Access Request Form and understanding what the NDIS can offer and NDIA processes
e Assistance with plan preparation
Whilst the intention of the ECE! Approach is for a soft entry for families, we have found that the demand for service is so high that we are needing to rush to move people through the pathway and allow for new children to be seen. This does not allow for the time to build relationships with families, particularly those that have additional needs such as mental health issues, intellectual disability and/or are from an ATSI or CALD background.
In addition there are limited or non-existent pathways to refer families to as government departments enforce their boundaries and most publicly funded services are under resourced and have long wait lists.
Another need for families is that many also have multiple children with disabilities of varying ages and may appreciate only having to work with one organisation rather than one for their child(ren) under 6yrs and another for those aged over 7yrs.
Timeframe in receiving services under the ECEI pathway
The timeframe for receiving services is going to be dependent on the point of view that you answer this question from. From the perspective of the family first. Referral partners (e.g. Paediatricians, Doctors, Schools, children’s services) are now beginning to understand the new ECEI referral pathway. Previously these groups were sending families directly to NDIS. Families will have experienced these changes as delays in accessing supports. Data will now provide evidence that the referral pathway is now established within the community and we are seeing a dramatic increase in the numbers joining this queue. For families it would appear that timeframe is extended because we
have no way of reporting on when they first raised concerns about their child and who with.
The timeframe for the ECEI provider to provide services is becoming unmanageable. The first priority was to provide planning meeting for ‘defined’ children. This for some of us is ongoing with not all of the defined children successfully transitioning to NDIS. Whilst the ECEI team are working on the defined children the waiting list for new referrals continues to increase. Interim supports are unlikely to be provided as the planning team prioritise those with the greatest need or those that have been approved for Access to the Scheme. The timeframe for children presenting with less serious concerns (or undiagnosed conditions) is likely to exceed 6-9 months.
The timeframes are further exasperated by confusion around who is eligible for a planning meeting and who has yet to meet eligibility. Greater access to this information would prevent planners in incorrectly engaging in planning meetings. An NDIA staff person assigned to take these phone calls would expedite the process.
Funding for the ECEI pathway is inadequate. The roll out of the NDIS has resulted in previous avenues for funded support ceasing. The removal of Fahcsia funding has meant that children who were being supported by private therapists will now need to return to the ECEI pathway in order to receive interim supports and an NDIA plan. The reduction of the ADHC block funding to 45% of the original means that the capacity to support children is also reduced by this figure. Funds previously provided for Therapy support were excluded from the equation thus limiting “interim” supports both in terms of diversity of the team and number of staff available.
A commitment by ECEI Providers to conduct planning meetings face to face has been well received. Feedback from families is that they feel that their child’s story has been listened to respectfully where discussion was needed in terms of reasonable and necessary that they understand this guideline. Anecdotally the number of appeals of a reviewable decision since the introduction of the ECEI Approach have been very few. Whilst the process seems to be working well, it must be acknowledged that face to face meetings, particularly in family homes, are labour intensive.
The ECEI Teams are utilising best practice guidelines and conducting the majority of their visits in children’s own settings. The results have been very positive with the ECEI team being able to talk through the new referral pathways with community settings and also provide some on the spot support in regards to inclusion issues. Travelling to children’s own settings is however more resource intense, particularly in regions where significant travel is involved.
It would appear that demand was understated in the first instance. Children on waiting lists were not included in the section 55 list and therefore could not calculated as part of demand. The necessity of waiting until all defined children moved from case load to an NDIA approved provider meant that the initial starting point for the pathway consisted of those on waitlists as of 1% of July (which could have been there for up to 6 months) and then those new to the pathway.
Interim support has been difficult to quantify. Those children needing significant supports should progress to an NDIS plan in a relatively short period of time. In NSW the numbers were capped for new children and this target was met as ECE! was coming into fruition. This meant that children deemed eligible needed to remain on “interim supports” until such time that new NDIS numbers were available. This presented further delays on the pathway as Providers waited for NDIS plans to be assessed and approved. A child with severe or profound needs may need to be escalated to a Senior Planner
midway through the process if it is determined that the needs are outside the judgement call of the ECEI provider. In effect this extends the length of time that it will take to receive an approved plan.
One factor that has become apparent in determining whether the timeframe is reasonable for children to access supports is the intersection with Health. Families are finding that the eligibility for NDIS is easier if the child has been diagnosed with a disability or a developmental delay. The consequence of this is that NSW Health have then determined these children as ineligible for Health services. The families are then forced onto the ECEI pathway rather than receive allied health support through Health.
. Adequacy of funding for services under the ECE! pathway
The data collection tool provided by the actuaries is revealing some valuable information for future planning purposes. It is however labour intensive. The costs associated with this data collection must be taken from the funding provided and has effectively reduced the supports able to be offered.
A per child allocation has not been provided. Whilst this allows the ECEI provider to tailor the supports most appropriate for the child it would greatly improve planning to be able to tailor supports with a timeframe for NDIS processes to refer back to.
Arguably the 45% allocation of part of the previously held block funding (Therapy supports where not included) is insufficient to perform this role. Previous waiting lists, closure of alternate pathways and unmet demand were not taken into account in negotiating this figure. In addition Trial site providers were disadvantaged in these negotiations. The 45% was provided of residual funds only. Funds that had already been removed for the trial site areas of Newcastle, Lake Macquarie and Maitland were not included in the negotiations. In effect these providers have no funding to provide any supports in these areas and are cross subsiding these areas from other Local Government areas. Given the very large populations in these areas this has meant larger than expected demand.
The ECEI pathway reflects a detailed process to ensure that young children receive supports most relevant to their needs in a timely manner. Quite rightly it is a specialised and sometimes time intensive process. The process is dependent on the readiness of a family to engage, but also is dependent on the availability of the community supports to provide timely intervention for families. In the absence of these community supports being available this support falls back to the ECEI team. In 2016/17 ADHC recognised that NDIS were no longer providing Support Connection or Support Coordination for children under the age of 7. This role has now fallen back to ECEI planners although it would appear to sit outside of this role. A more appropriate response would be to recognise when the families capacity to negotiate this is limited and provide NDIS funding for support coordination to allow the utilisation of funded supports.
Costs associated with ECEI services, including costs in relation to initial diagnosis and testing for potential ECE! participants
The cost of diagnosis will vary considerably depending on the assessment requirements for children. Some children will require a speech assessment which could be 6 hours in length with the inclusion of a report or they may require an assessment performed by a psychologist which could be 15 hours in length with a report. This variance in costs is not predictable.
Service providers are unable to predict which professional staff will be required to administer assessments for diagnosis which will mean it will be difficult to predict the cost associated with making a diagnosis or the staff required to make these assessments The unpredictable nature of assessment costs will mean less Interim Support services may be provided To administer assessments in the child’s natural settings which is best practice, incurs additional costs in the form of travel. The travel costs in performing these assessments will also lead to reduced funding in being able to provide interim supports. ECEI providers could be given clear information around using certain assessment tools which they will use as the benchmark for determining a child’s eligibility for entering the scheme. Currently there is not a clear guideline which the NDIS accepts as the tool for determining a child’s diagnosis. The tool currently recommended by the NDIS is the Pedicat. It has been identified to have flaws in determining functional skills and is not a diagnostic tool. The ECEI providers recommend that another assessment tool is used in conjunction with the Pedicat e.g Ages and Stages Questionnaire. When determining a child’s needs for equipment or assistive technology there are also no clear guidelines on who should make these recommendations within an ECE framework. We understand that those ECEI providers in rural and remote areas may not have access to qualified staff to make these recommendations. E.g. Occupational Therapists, Physiotherapists and Speech Pathologists. Just as NDIS planners would refer out to Early Intervention Providers in the past to make determinations around equipment and assistive technology, we are not sure who this will be referred to in an ECE landscape where there may be no allied health members in the ECEI Transition Providers to make these assessments in rural and remote areas. The identified strengths of the ECEI approach is service providers are able to respond to the individual needs of each child and family and can make local decisions around where the budget is allocated. Having the local knowledge as well as the expertise in Early Intervention allows services to be prioritised and triaged according to need and referral pathways to mainstream services can be made based on the knowledge of local services. This provides a cost benefit for NDIS.
Evidence of the effectiveness of the ECEl Approach
ECEI transition providers have been requested by NDIS to gather evidence through the Pedicat and the outcomes related to the goals developed by the ECEI Transition provider with the family. This Pedicat tool is administered with the family on the child at initial engagement and then again as they exit the ECEI pathway.
NDIS have created their own actuary spreadsheet to collect pertinent information relating to ECEI supports. This tool gathers information around the types of services provided, who the services were provided to, how long these services were provided, ECEI pathway of services etc.
Under the ECEI Approach goals are written by service providers in consultation with the families. These goals are SMART and progress is able to be measured at the commencement of supports and then when the child exits the ECEI service. Anecdotally, ECEI transition providers have found that regular meetings with NDIS has allowed for discussions to occur which identify areas where effectiveness of this approach could be modified to improve processes. We are able to give direct feedback to NDIS about any concerns that either families or Transition Providers are experiencing.
Recommendations can be made on the way information can be shared with families and the wider community.
We understand the rate of appeals around plans have decreased since ECEI have commenced. This could be due to the specialist knowledge that ECEI transition providers have around early intervention and their understanding of communication strategies to engage with families who are experiencing grief, trauma and finding it difficult to ‘find their way’ with a child who has a diagnosis or developmental concerns. Plans created by the ECEI transition providers are in the majority suitable to the family and child’s needs and families are satisfied with the plans which are created.
ECEI Transition Providers would like to see qualitative data collected which would gauge family satisfaction and quality of service provision under the ECEI approach.
Robustness of the data required to identify and deliver services to participants under
the ECEI Approach
Whilst the Pedi-Cat has the benefit of being a quick assessment accessible on an iPad, the data it provides is limited. There is a significant difference between the rating scored on the Pedi-Cat and how the child is actually functioning. To determine the services required to support the child, the Pedi-Cat cannot be used as a stand- alone tool, which negates the benefit of being a quick, easy tool to use. The questions are often inappropriate and upsetting for families who have children with complex needs. The inaccuracy of the Pedi-Cat also provides misleading information in relation to the number of children with developmental delays who are accessing NDIS and the level of their delay.
The Ages & Stages Questionnaires (ASQ) is a tool often used in Early Childhood Services to assess the needs of children and would be recommended as a more appropriate tool to collect the required data.
Adequacy of information for potential ECE! participants and other stakeholders There is ECEI information available on the NDIS website, however, it is difficult to navigate without prior knowledge of the ECEI approach and families remain confused about the process when they contact the ECEI providers.
ECEI providers are gradually building the resources available to families on their websites. Initially ECE! providers had very little information available and continuing changes make it difficult to provide current information to families, service providers and referring services about the pathways.
Information provided through the NDIS 1 800 line is often inconsistent with the NDIS website and the information ECEI providers are provided, creating confusion and frustration.
Regular forums are assisting to build consistency between the ECE! providers and NDIS, however, the forums do not address the different information families are provided from within NDIS.
Accessibility of the ECE! Approach, including in rural and remote areas
One of the strengths of the ECEI Approach is that local organisations are able to offers face to face supports in the local community for families and mainstream services which increases the accessibility of the supports, in keeping with best practice for working with families.
Issues impacting on accessibility that are exacerbated in in rural and remote areas include: e travel time which impacts on the number of families that can be supported within the available funding e ability to recruit staff from different disciplines to provide Initial Supports Accessibility for families from Indigenous and Culturally & Linguistically Diverse backgrounds is also a challenge under the current funding model. The average allocation of 6 sessions per family for Initial Supports does not allow the time required to build trust and rapport in addition to providing intervention. Waiting time due to the funding limitations of ECEI providers and the delay by NDIA to process Access Request Forms (currently 3-4 months) is causing delays in families being able to commence the planning process for individual funding. To address these issues it is recommended that the ECEI funding: e reflect regional differences so that travel can be accommodated e reflect population diversity so that adequate time is available to engage families and build trust
- Principle of choice of ECE! providers In the Hunter families have a choice of more than one ECEI service. The current ECE! model provides families the choice of local organisations that have local connections and well established referral pathways, which is a fundamental to the ECEI approach in ensuring that children and families are well connected to their community.
A further benefit in the Hunter is that families have a choice between ‘specialist’ and ‘generalist’ early childhood intervention transitional providers. This means that children with specific needs such as hearing, vision or cerebral palsy can access these specialist input into the planning process.
- Application of current research and innovation in the identification of conditions covered by the ECE! Approach and in the delivery of ECEI services
Eligibility of Developmental Delay to access supports for children with developmental concerns is a good guide. Children who are identified with Developmental Delay are children who require some level of support to develop their functional skills. This group of children require access to early intervention support either through the NDIS or other service system.
The ECEI! approach if adequately funded would be able to effectively support children with DD.
Accessing mainstream services for assessments to diagnose disability is a prolonged process, in some instances taking up to 12 months.
If eligibility is determined for groups of defined disabilities, children with the disabilities on the list, will have easy access to supports but disadvantages those whose disabilities are not . It will also disadvantage those families whose child is unable to be diagnosed, or family does not wish to have formal diagnosis.
There are challenges to providing Best Practice through the provision of supports through Individualised funding for children who meet reasonable and necessary criteria as part of the ECEI pathway. Restrictions on charges for travel cap and impacts on the ability to provide services in accordance with the ECI Best Practice Guidelines.