Ms Stephanie Gunn
General Manager, Community Linkage
GPO Box 700
Canberra ACT 2601
Dear Ms Gunn
Thank you for your letter (3/11/2016).
In it you wrote:
The Agency continues to consult with experts such as the Cooperative Research Centre for Living with Autism and advocacy groups around the ECEI approach. The Agency values the experience and knowledge from these important groups of stakeholders.
Please would you provide the complete list of the experts that the NDIA consults relating to the provision/delivery of the NDIS for autistic people? And please would you explain how the Cooperative Research Centre for Living with Autism is a “stakeholder” in the NDIS.
We understand this means the NDIA will not consult with Autism Aspergers Advocacy Australia (A4).
Please note that many autistic people and people living with autism are concerned or disappointed that the Agency prefers advice relating to early intervention for autistic children from “advocacy groups around the ECEI approach”. As yet, we see no evidence that the “experience and knowledge” of the “advocacy groups around the ECEI approach” includes adequate knowledge or experience of evidence-based and/or best practice for autistic children.
A4 is alarmed that the NDIA adopted a generic (one type suits all, irrespective of diagnoses) approach to ECEI and rejects all the evidence and advice that autism is a distinct disorder that usually needs substantially ASD-specific treatment models/approaches.
The Agency rejected the advice it obtained (links on https://www.ndis.gov.au/about-us/information-publications-and-reports) from reviewers (report authors) and its so-called “stakeholder group” when their advice was contrary to the Agency's plan for ECEI. The Agency withheld its ECEI Approach proposal from its ASD “stakeholder group”, avoiding comment on its ECEI Approach from ASD-related stakeholders. The Agency disbanded its ASD “stakeholder group” before announcing its ECEI Approach.
A4 is disappointed that the Agency does not acknowledge the concerns of A4 and other ASD advocacy groups about its ECEI Approach. A4 raised many concerns in the letter you responded to … but your response does not even acknowledge, let alone address, any ASD stakeholder concerns.
The Agency’s culture of continual improvement means that your feedback will be taken on board, and considered further when communicating to the public about the ECEI approach in future.
A4 understands the "continuous improvement" model responds quickly, positively and thoroughly to suggestions from stakeholders. We understand that your response above means the Agency will focus only on "communicating to the public about the ECEI approach" (often called "spin") and will not respond to suggestions that A4 (and others) made/make about improving the Agency’s underlying approach to early intervention for autistic children. The NDIA's culture seems to us like the opposite, the anti-thesis, of a culture of continuous improvement.
Ignoring much of the ASD community is not an effective way to make the NDIS the best it can be. It means the NDIS will fall well short of its goals and its potential.