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The NDIA is planning to make changes to early intervention services for children, in what is currently known as the Early Childhood Early Intervention (ECEI) pathway.
This article looks at the main changes and how they might impact families with children aged up to nine years old.
There have been a number of reviews of the ECEI pathway that have highlighted challenges in delivering timely support and strengthening the capabilities of families and children.
The proposed changes are not finalised. The Government is consulting with the community on them, and is aiming to confirm how the Early Childhood Approach will look by the middle of 2021.
The NDIA has recommended 23 different changes to the Early Childhood Approach. In this article, we outline the main changes from Amaze’s point of view and explain what they mean for families with autistic children.
1. Publish guidance on what the NDIA considers ‘Reasonable and necessary’ for autistic children
This change is important. The NDIA wants to make sure that supports for autistic children are evidence-based and represent best practice. To inform this, the NDIA got the Autism CRC to research the effectiveness of different kinds of early interventions for autistic children.
The NDIA is due to release a paper on what it considers to be reasonable and necessary supports for autistic children.
Amaze’s position
There are a range of supports available for autistic children. It is essential that parents are confident these are evidence-based and effective.
Until we see the NDIA’s paper on what they consider ‘reasonable and necessary’ and consult with early intervention experts, there will be more questions than answers.
2. Create a workforce of delegates and planners who only focus on young children and their families
The NDIA wants to make sure that the staff working with young children and their families are skilled and trained in early intervention approaches. Currently staff work across adults and children, and the NDIA sees a risk of adult approaches being applied to children.
Amaze’s position:
This is a positive change that we support, with the strong caveat that the workforce needs to be proficient in autism – an area that our surveys have repeatedly showed NDIA planners and their partners in the community (Local Areas Coordinators and Early Childhood Partners) are lacking in.
3. Consider which mechanisms can make providers comply with the NDIS Practice Standards on Early Childhood
This change is intended to make sure families understand which providers are adopting best practice standards in the supports they offer. This change won’t directly affect participants, but it will mean that families have access to more transparent information about their choice of provider, which is positive.
4. Introduce a version of the independent assessment approach for young children
The NDIA proposes to introduce “Independent assessments” (IA) to assess the functional capacity of young children. These would be undertaken by the Early Childhood Partner in the Community. A child’s first access to the Early Childhood Approach won’t require such assessment, but access to the scheme and the level and type of support the child can receive will be closely linked to the outcomes of the assessment.
Amaze’s position:
Amaze has significant questions and concerns about how assessments will be used for young children and what impact they will have on access to early intervention supports.
We believe that autistic children should have immediate access to the NDIS, and a range of early intervention supports. This is a sensible and evidence-based way of making considerable improvements in a child’s functional capacity.
5. The NDIA will clarify how it interprets the criteria of developmental delay
Currently many children enter the NDIS with a diagnosis of developmental delay, despite the NDIS Act not giving a clear outline of what qualifies as developmental delay. The NDIA wants to introduce thresholds for developmental delay to guide their decision making when determining how access requests are treated.
Amaze’s position:
Many children with an initial diagnosis of developmental delay are subsequently diagnosed as autistic. It is essential that when making this clarification, the NDIA does not introduce barriers to essential early interventions that are critical to improving a child’s longer-term outcomes.
6. The age limit for children in the Early Childhood Approach will be lifted from ‘under 7’ to ‘under 9’
The longer timeframe is intended to keep more stable access to supports while the child transitions through the key life milestones of starting school and their early years of development.
Amaze’s position:
This appears to be a sensible change, provided it will not create uncertainty about future supports or delay access to supports.
7. Access to the NDIS for all young children will be based on the early intervention criteria in section 25 of the NDIS Act (2013)
The NDIA wants to reframe its Early Childhood Approach to be distinctly different from the general Scheme by emphasising that for many children, early intervention can prevent a long-term reliance on the NDIS.
By making this change, the diagnosis of disability is no longer the priority. Instead the NDIA will focus on viewing all young children as an ‘early intervention cohort’, which they say is intended to be strengths-based and encourage an optimistic view of their potential.
Amaze’s position
A consequence of funnelling all children through the section 25 (or ‘early intervention’) pathway is that regular independent assessments will be needed, and with these, the potential for some children’s access NDIS being reassessed. For families whose children will clearly need life-long support, this is a confronting and unnecessary change, even if their long-term access to the NDIS is not in doubt.
For children with profound or severely complex disabilities, the NDIA makes it clear that their access to the Scheme would be through an ‘empathic independent assessment and a straightforward continuation to section 24 (long term support under through the NDIS) at age nine’.
Amaze wants to ensure that these changes do not result in any new or higher barriers to autistic children receiving appropriate supports from the NDIS, should they need them. It is essential that autistic children and those whose developmental delay may eventually be diagnosed as autism receive timely and appropriate supports, without delay. Autism is not a condition that can be ‘cured’. Many autistic children will be better served by accessing the full NDIS through the section 24 and focusing on their long-term goals and developmental priorities.
8. Make ‘Short Term Early Intervention (STEI)’ supports more easily accessible from Early Childhood Partners, before children access the full NDIS
This is a key change. The NDIA wants to make sure that children with an identified developmental delay or potential disability are given access to STEI supports. For some, this might be effective and mean that they don’t need to enter the full Scheme for ongoing supports and can transition to mainstream services.
For other children, the STEI will be valuable but insufficient for their long-term needs. These children will undergo an independent assessment with a view to entering the Scheme after they complete the STEI program, which will finish at age 6.
Amaze’s position
We acknowledge the intention of making access to STEI supports as easy and straightforward as possible for all families. For many children and their families, the lighter touch supports under this program will be enough.
However, it is essential that children with a confirmed autism diagnosis receive autism-informed, individualised, family-centred, and timely supports designed to support their development.
9. Rename the Early Childhood Early Intervention Approach the ‘NDIS Early Childhood Approach’
The NDIA wants to change how people view early childhood supports, away from the view that they are a “gateway” to the full NDIS and support for life, to one where for some children, early intervention supports will be all they need.
They say that by renaming it to the Early Childhood Approach, families will begin to view it as a separate intervention program, rather than a guaranteed entry into the full Scheme for life.
Amaze’s position
We understand the rationale for renaming this part of the NDIS, but for most families with autistic children, it is more important that they receive targeted and personalised early interventions that build capacity and support development.
In this context, we believe the naming of the NDIS’ early intervention program is less important than ensuring that access and supports are designed to help as many families as needed.
Amaze is providing advice to the NDIA about how these changes can be improved so that the needs of autistic children are front-of-mind when redesigning the Early Childhood Approach.
The NDIA has set out a timeline which would see them spending 2021 confirming the changes to the Early Childhood Approach, planning their implementation, and preparing to launch the new approach in 2022.
For parents with young children currently receiving early intervention supports through the ECEI pathway, there is an opportunity to tell the NDIA what you think through their online portal.
Amaze will keep updating our community as these changes are discussed, confirmed, and then later in the year, as they prepare to implement them.