autism and the NDIA's ECEI Approach

Members
Board of the National Disability Insurance Agency (NDIA)

Dear Board Member,

Autism Aspergers Advocacy Australia, known as A4, is concerned by the NDIA's implementation of its Early Childhood Early Intervention (ECEI) Approach. According to the NDIA's Media Release, the NDIA has already trialled this approach in the Nepean Blue Mountains NDIS trial region. The NDIA did this with little if any engagement with the autism spectrum disorder (ASD) Community ... and the NDIA decided the trial was a success without any opportunity for the ASD community to see the outcome of the above-mentioned trial or to comment in any way.

Data from the Helping Children with Autism package and Better Start program show that prior to the NDIS, 3 in 4 children accessing federally funded early intervention were autistic. Since the NDIA did not consult the ASD community on the ECEI Approach design and implementation, anyone who the NDIA consulted represented at best just 1 in 4 children (25%) of the client base. It is disappointing that the NDIA excluded the ASD community from the design and implementation process (note: the NDIA's "autism stakeholder group" was excluded from the process, only being given information about the NDIA's ECEI Approach when it was released to the media in Feb 2016).

The ASD community remains interested in seeing the outcomes of the ECEI Approach trial in the Nepean Blue Mountains region, especially in relation to autistic children (we note that according to the latest NDIA data, this region has the highest rate of ASD - 48%, the same rate as South Australia - among its participants).

So far, the NDIA has given very vague information at best about how its ECEI Approach will function for autistic participants from a) the recently released pamphlet (MS Word and PDF), and b) the NDIA's Webinar on their ECEI Approach. It is unclear:

  • who the Access Partners will be. From the Webinar, it seems that Access Partners have little or no specific knowledge of ASD and what is best practice early intervention for ASD. It seems they have been and will continue to provide services without any need to undertake any diagnostic assessment. While we can applaud the NDIA's intent to provide rapid access to early intervention services, the NDIA should indicate which allied health professions regard on-going service provision without diagnosis as best, or even good, practice.
  • who will be eligible and how many children the ECEI Approach will support; for example, Sam from Sam's Story in the pamphlet apparently was eligible for services (albeit, just a tiny amount). The NDIA told us that Sam is not autistic ... though given the substantial need for "doctor shopping" in order to get an ASD diagnosis, this conclusion may not be reliable. If the NDIA says Sam is eligible for their ECEI Approach, the NDIA should clarify what the eligibility criteria are and indicate how many children they expect will be eligible with those criteria (there is a considerable risk that this would increase the number of eligible NDIS participants).
  • what pathways there are for autistic children in the ECEI Approach ... since the example provided so far do not include any autistic children. The NDIA has not yet provided any example of an autistic child accessing best practice early intervention for ASD via the NDIA's ECEI Approach.
  • what protection NDIS participants have against Access Partners acting in their own best interests instead of in the interests of the child.

Please note that based on the published cost profile for the NDIS in its recent quarterly reports, Sam (with his Story in the ECEI Approach brochure) is quite unusual since very few actual individual plans (far fewer than expected) fall in his part of cost distribution. This mean that Sam's Story is not a particularly helpful as an example: it might even be considered misleading.

It is disappointing and quite worrying that the NDIA has not yet provided an explanation or example of how the NDIA's ECEI Approach will process an autistic child, diagnosed or not.

The ASD community is keen to see the NDIA explain how its ECEI Approach works for autistic children ... who, based on past evidence, may well be 75% of those who are eligible.

Bob Buckley
Convenor, Autism Aspergers Advocacy Australia (A4)
website: http://a4.org.au/

12/4/2016


The letter was also sent to the NDIA's CEO. We received this response.

Dear Mr Buckley

Thank you for your email. The Agency acknowledges the concerns you have raised and will consider these in the ongoing development and implementation of the Early Childhood Early Intervention Approach.

Regards,
David Bowen

Chief Executive Officer
National Disability Insurance Agency
Level 1,  45 Brougham Street  GEELONG  VIC  3220

28/4/2016