From Birth to 8? The Early Childhood Early Intervention (ECEI) Reset

In May 2020, the NDIA launched the Early Childhood Early Intervention (ECEI) Implementation Reset project to better understand the NDIS pain points for young children and their families. As part of the Discussion Paper feedback process which began a couple of weeks ago, they released two papers on the ECEI Reset and identified 23 recommendations to improve ECEI outcomes. The papers tell us that the NDIA plans to commence implementing the recommendations from early 2021 through to 2022. 

Importantly, the recommendations in these papers are not policy; they are suggestions for feedback. The Discussion Paper ends with a whole bunch of questions for the community. If you feel very strongly about any of these proposed changes, then you know what to do! Get out a pen and start writing your submission. 

First, here are some of the main issues the papers identified:

• The numbers of children are high, and there are not enough children exiting the Scheme (no surprises here). 
• Eighty percent of the families of the 0–6-year-old participants self-manage or plan–manage. The NDIA is concerned that families do not have enough information or support to understand which services they should be purchasing (i.e. what is best practice for early childhood intervention [ECI]). 
• ·The NDIA has concerns about the quality of the ECI supports being delivered. Currently, unregistered providers do not have to meet the NDIS Commission’s Practice Standards on Early Childhood Supports. 
• The vision of the ECEI Approach is unclear and not well articulated. The NDIA plans to rename it and review their communications.
• Access and planning decisions are not being made in consistent and equitable ways.
• Reasonable and necessary supports are not adequately considering the needs and capacity of parents and carers, children living in remote areas, Aboriginal or Torres Strait Islander children, children from culturally and linguistically diverse families and children from lower socioeconomic backgrounds.

Some of the NDIA’s key recommendations are: 

• Increase the ECEI age limit from 7 to 9 years.
• Use only the early intervention criteria to make NDIS access decisions for children.
• Rather than ECEI being a ‘gateway’ to the Scheme, place greater emphasis on short-term early intervention (STEI) supports that can be provided without an NDIS plan by early childhood partners (ECPs).
• Create an NDIA workforce which specialises in young children.
• ·Implement independent assessments that are to be completed by ECPs. 
• Consider a range of mechanisms to enhance provider compliance with best practice, including making the recently introduced ‘service provider outcomes report’ mandatory.
• Clarify the interpretation of the developmental delay criteria in the NDIS Act. 
• Publish new guidance on what supports might be considered ‘reasonable and necessary’ for children on the autism spectrum. 
• Allow ECPs to advise families on the best providers for their children.
• Improve the reviews process for young children.
• Offer families no longer eligible for the Scheme a ‘transition out’ plan for up to three months.

The Reset report discusses in detail some of the pain points ECEI is facing (from the Agency and participants’ perspectives) and how the proposed policy changes would theoretically address them. Here’s what we have learnt: 

NUMBER OF CHILDREN IN THE SCHEME

It is no great shock that the NDIA is focusing on the children in the Scheme. Currently, children make up over half of the NDIS participants, and there are 61,962 children aged 0–6 years receiving NDIS individualised funding. The report identified that there is a ‘higher volume of children than expected progressing through to funded supports’. This trend is no doubt causing concern for the NDIA with regard to the sustainability of the NDIS. 

The report also signalled that not enough children are transitioning out of the Scheme. The NDIA expressed concern that children are at risk of becoming unnecessarily ‘institutionalised’ into the disability system for life. Indeed, we can agree; we definitely do not want to see participants of the Scheme not being integrated into mainstream services or well supported in community settings. The original intent of the NDIS ECEI Approach was to deliver greater inclusion, not to create a segregated support system.

MAINSTREAM SERVICES

The NDIA have clearly indicated that the recommendations developed by the Reset will only work if there is a whole-of-government approach. Mainstream support services will be critical of effectively supporting young children and their families. We cannot reasonably expect the NDIA and ECPs to singlehandedly address all the needs of developmentally vulnerable children, but they will be heavily relied on to deliver the vision of the Reset. ECPs will need to be well resourced and have access to a highly skilled ECI workforce.

While there are many programs and initiatives focusing on the early years, they are largely fragmented. A service system that assists families at the front end to access appropriate supports could be useful. The Reset provides the NDIA with a chance to trial a coordinated, joined-up response with mainstream support services. 

Realistically, the NDIA needs a strategy to explore, address and trial how they can work with other mainstream services, with a particular focus on the interface in situations where health services are also NDIS-registered providers. Offering families a ‘transition out’ plan for three months will be unhelpful if there are not well-adjusted mainstream services able step in and support them.

Providers

Providers can expect greater scrutiny of the supports they deliver to children aged 0–6 years with NDIS plans. With only 20% of families using Agency-managed supports, the NDIA has no way of ensuring services are being delivered in a way that meets their ‘best practice’ principles. One suggested measure to increase accountability is to require active providers to be registered with the NDIS Commission. Another suggestion is to put in place an industry-led ‘best practice accreditation system’. Providers, participants and interested parties are invited to give feedback on the following proposals:

• Provide greater information to families about the benefits of using providers registered by the NDIS Commission. 
• Establish an industry-led 'best practice accreditation system'. 
• Establish a 'quality feedback / rating system'. 
• Make registration with the NDIS Commission mandatory for all providers operating in the EC space.
• Require self and plan-managed participants in the new Early Childhood approach to use only registered providers.

Workforce

The recommendation to create a distinct delegate workforce for children and their families does seem to be a positive step forward. However, most of the recommendations in the report rely heavily on skilled ECPs delivering the intended outcomes. It is recommended that ECPs: 

• implement independent assessments for young children that will be used to determine access and planning decisions, 
• deliver all the STEI supports for children up until the age of 9, and
• assist mainstream support services to understand how to better support children with developmental delay and disability. 

So, if these proposed changes go ahead, they are going to be very busy. It will require highly qualified and skilled practitioners to deliver these supports well. And there will need to be a lot of these professionals to ensure that long waiting periods for supports and services do not become an unintended consequence. 

Autism Spectrum Disorder

The report focuses on planning for children with autism spectrum disorder. It notes that there is widespread inconsistency in how evidence from providers is applied. The report also says that a separate consultation paper will be released in December 2020 or January 2021 about what is considered ‘reasonable and necessary for children on the autism spectrum’. 

What can we expect? It seems likely that the Agency wants to make some big changes in this space. Provider quotes and the family’s capacity to advocate for intensive supports such as Applied Behaviour Analysis (ABA) have been highlighted as issues. This signals a potential move to identifying levels of funding for supports like ABA. But we will have to wait to see some of the more detailed proposals for this area. 

Remote and Aboriginal or Torres Strait Islander Children

Action on Disability within Ethnic Communities data shows that 46% of children in remote areas are developmentally vulnerable in one or more domains. Yet we know that children in some of the most remote locations in Australia do not have access to ECI or NDIS plans. In addition, one in four (125,000) Indigenous Australians have a disability, which is 1.8 times the rate in non-Indigenous Australians. Unfortunately, we continue to hear that there are very few ECI supports for Aboriginal children living in remote Australia and that the individualised funding approach is not fit for purpose. The Reset offers a real opportunity to provide a clearly articulated and robust strategy to support these children. Tailored methods for delivering supports for young children in remote areas are likely to be welcomed if they are codesigned and fit for purpose for each community.

Families living in remote communities are particularly invited to share any ideas they have with the Agency as part of the feedback process.  

Access

At present, children can access the NDIS through the early intervention criteria or the disability criteria of the Act. But the report recommends that children only enter through the early intervention criteria. This will require all children to have their access reassessed at regular intervals. For families of children who require life-long support, this seems cruel and unnecessary. 

A paper is currently being developed to improve guidance and further identify the threshold for meeting the developmental delay criteria. The NDIA have indicated that this paper will be released in early 2021.

Conclusion

The evidence around the importance of the early years is undisputed – it is a critical period for shaping health and wellbeing outcomes in adult life. The Reset represents a unique opportunity to contribute to the future direction of ECEI. The community has until 10am 23rdFebruary 2021 to provide feedback. You can read more here.