RESPONSE TO THE JOINT STANDING
COMMITTEE: NDIS Early Childhood Early
Intervention Approach
Joan McKenna Kerr
Chief Executive Officer
RESPONSE TO NDIS ECEI EARLY INTERVENTION APPROACH
FOR CHILDREN WITH AUTISM
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INTRODUCTION All of the questions asked of the ECEI approach by the Joint Standing Committee on NDIS are very appropriate. Unfortunately, however, there is little transparency regarding the operation and administration of the approach to allow many of the questions to be answered by organisations such as ours. Consequently, I will confine my remarks to our issues of concern.
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ECEI GATEWAY TRANSPARENCY The ECEI approach was developed not simply to ensure that all children
requiring Early Intervention have their needs met. It is intentionally a
gateway to allow some children through to receive an NDIS Plan for early intervention; and others not. This would not necessarily be inappropriate if there was greater transparency on how ECEI works to assess and respond to the needs of children who are referred for assistance.
There is a paucity of information available on the decision-making framework guiding this approach. As such there needs to be far greater transparency regarding the operational detail of this model; the eligibility criteria being
used to place children on different support-pathways; the KPIs for the
Gateway Provider; and retrospectively, regular reports on the breakdown of
children by age and disability-type that are being diverted away from
receiving an individual NDIS Plan.
My concern with this approach is that it could very easily devolve into a system whose success is gauged in the short run by the number of children that are not referred for an NDIS Plan. This would be a significant mistake as the central rationale for early intervention under NDIS is to minimise the trajectory of functional disability for the child and, in doing so, minimise lifetime cost to the Scheme. Early Intervention, especially for children with Autism is one of the most significant ways of achieving this outcome both for the child and the Scheme.
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- THE APPROACH AND IMPLICATIONS FOR CHILDREN WITH
AUTISM
Where there is good evidence that a diagnostic condition has a severe disabling lifetime impact, these children should be on List D of the NDIA Operational Guidelines allowing them to go straight to the planning process with an NDIA Planner; with the level of support determined through the planning process. In this regard, it is a major concern that Autism is not on List D of the NDIA Operational Guidelines given the empirical evidence of its lifetime disabling impact; and the importance of timely Early Intervention to minimise the trajectory of disability and maladaptive behaviour.
Individuals with Autism are the second largest group of NDIS participants
using this Scheme, with significant lifetime costs. The only reason I can
surmise that they are not included on List D is due to a poorly informed
notion that some children with Autism are “high functioning” and therefore not in need of Early Intervention. However:
High functioning children with Autism are not high functioning relative to their non-disabled peers (except in some areas of splinter skills). They are high functioning relative only to other children with Autism.
These children benefit enormously from Early Intervention but, without
intervention can become increasingly isolated and disabled as they grow older. In adult life they can require far greater support than they would have otherwise required.
Without transparency in how the ECEI operates, there is significant concern that many children with Autism may be inappropriately diverted to non evidence based services or become “trapped” in the ECEI Gateway. These concerns can only be ameliorated by children with Autism being included on List D of the NDIS Operational Guidelines to allow them to go straight through to the NDIS planning process.
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Apart from ensuring that children with a diagnosis of Autism can have access to the NDIS planning process, the ECEI approach requires further clarity and transparency to give confidence in the Scheme to parents of young children and those that support them. The transparency required includes:
Clarity of ECEI’s stated purpose; The methodology used to access eligibility to proceed to receiving an NDIS Plan; Whether the service providers who provide this gateway have been given KPIs in relation to the number of children they are expected (not) to refer for planning;
How the children who are not referred are supported; and the
evidence that would demonstrate that the service they receive is appropriate to their needs; Regular reporting in the quarterly NDIA Report on the breakdown of children by age and disability-type going through ECEI and those
being diverted (by age and disability-type) from receiving an
individual NDIS Plan.
IN SUMMARY:
i) Children with Autism should be included on List D of the NDIS Operating Guidelines. This will ensure they have immediate
access to an appropriate early intervention service to minimise
the trajectory of disability and the lifetime cost to Scheme.
ii) There needs to be greater transparency in the way the ECEI
Gateway operates for all populations of children being
managed through it.
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