News/Announcements

Formation of the Australian Autism Alliance Announced

Media Release

The enormous potential of autistic Australians is not being realised.

On the eve of International Day of People with a Disability (3 December), a pioneering network of organisations have come together to announce the formation of the Australian Autism Alliance. It brings together autistic people, their parents and carers, service providers and researchers.

As the National Disability Insurance Scheme (NDIS) rolls out across Australia, "autism and related conditions" is the most common primary disability across the NDIS. The Quarterly Report to the Council Of Australian Governments (COAG) by the Disability Reform Council in June 2016 reports that "autism and related conditions" account for 31% of NDIS participants across the country.

Autism diagnoses in Australia continue to grow in 2016

Media Release

The latest national data shows the number of children diagnosed with autism spectrum disorder (ASD) continues to grow at a substantial rate. In June 2016, there were 78,951 autistic children getting Carer Allowance (child) which is an increase of 9.4% from 2015. Another 2,000 children listed autism in their next three disabilities. In June 2015 there were 72,184 children and in June 2004, there were 14,495 children aged 0-15 years getting Carer Allowance (child) with ASD as their first-listed disability.

Just over 6,000 children were diagnosed with autism in the 2015-16 financial year; an average of 16.5 new autistic children each day. Over 2.46% of children aged 10-14 years are autistic.

In 2016, there are 62,609 boys and 16,342 girls. The male to female ratio is 3.8:1. There is serious concern that many girls miss out on diagnoses and on the services and supports that they need.

NDIA ECEI Approach: Re: NDIA Reply: EC16-001080 [SEC=UNCLASSIFIED]

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).

NDIA, impartial advice and access to best practice early intervention for autistic children

Dear The Hon Jane Prentice MP

I write about the promise that “that no one will be worse off under the NDIS” (see here). My particular concerns relate to autistic children and their access to impartial information and effective (best practice) early intervention.

I am writing to you because writing to the NDIA (see here, here, here and here for example) made no discernible difference (on these, or any other significant issue)

NDIA response on NDIS ECEI issues in email

Mr Bob Buckley
Autism Aspergers Advocacy Australia (A4)

convenor@a4.org.au

Dear Mr Buckley

Thank you for your email of 6 October 2016 to the Chief Executive Officer of the National Disability Insurance Agency (the Agency), Mr David Bowen, about the Agency’s Early Childhood Early Intervention (ECEI) approach for autistic children. Mr Bowen has asked me to respond on his behalf. I apologise for the delay in responding.

NDIA freeze on new participants in the ACT

The following is an brief exchange of emails between Bob Buckley and Andrew Barr MLA ... very soon before the 2016 ACT election.

This is an important matter for the whole nation, not just the Australian Capital Territory and South Australia.


Thank you for your very quick response. I hope you are right.

In South Australia, the NDIA stopped accepting new clients during their trial ... while we were told the scheme was meant to be uncapped, that turned out to be false.

regards
Bob Buckley

On 13/10/2016 9:16 PM, BARR wrote:

letter/email to David Bowen, NDIA CEO, on NDIS Early Intervention

Dear Mr Bowen,

Autism Aspergers Advocacy Australia (A4), the national grassroots advocacy group for autism spectrum disorder (ASD), is alarmed and disappointed by the National Disability Insurance Agency’s (NDIA’s) video on Facebook (see https://www.facebook.com/NDISAus/videos/594542027373310/ … a transcript is given below) about how its Early Childhood Early Intervention (ECEI) Approach is meant to work for autistic children. Disappointingly, this video shows that the NDIA continues to ignore/rejects expert advice and the peer reviewed research literature that defines best practice (and evidence-based) early intervention (EI) for autistic children (see http://a4.org.au/node/843).

The NDIA’s video features Michelle and her children (hopefully not their real names). While the following is critical of the video’s content, it is not intended to criticise Michelle who appears to be doing her best for her children. The NDIA is wholly responsible for the content of the video.

a personal letter to NDIA CEO

From: Karna
Sent: Tuesday, 11 October 2016 11:09 PM
To: 'David.Bowen@ndis.gov.au' <David.Bowen@ndis.gov.au>

Dear Mr Bowen

With the NDIS rolling out nationwide it is time for the NDIA and its parent policy agency, Dept. of Social Services to start making policy on a number of disability issues such as that of people with autism spectrum disorder and challenging behaviours such as aggression. These people are a large portion of your clients mainly in tier 3 and fall often into the too hard basket due to high support needs and very difficult behaviour. They are the clients most NGOs and other providers do not want as they are expensive and a hazard at times to staff and other clients. I have a son myself who at times falls into this group and am well aware of other “informal supports “doing it very tough with such adult or adolescent children usually males. ...

Submission to the Royal Commission into the Protection and Detention of Children in the Northern Territory

The Royal Commission into the Protection and Detention of Children in the Northern Territory 
PO Box 4215,
Kingston ACT 2604

email: ChildDetentionNT@royalcommission.gov.au

 

Dear Commissioners

Autism Aspergers Advocacy Australia (A4) is a national grassroots organisation advocating for autistic people (people diagnosed with autism spectrum disorder – ASD).

This submission is about more than autism; it is about Australia’s general lack of expertise and services for people with challenging behaviour.

Australia’s First National Guideline for Autism Diagnosis

A major study has been launched to develop Australia’s first national diagnostic guideline for autism led by The Cooperative Research Centre for Living with Autism (Autism CRC).

There is strong evidence of substantial variability in autism assessment processes between clinicians, between states and between rural and metropolitan areas. This is leading to delays in diagnosis, misdiagnosis, and inequity in access to services.

Commissioned under a collaboration between Autism CRC and the National Disability Insurance Agency (NDIA), a national guideline will ensure that each individual across Australia has knowledge of, and access to, best practice in autism diagnosis.

The project will be led by Professor Andrew Whitehouse (Director of the Autism CRC Diagnosis Research Program), in conjunction with Clinical Associate Professor John Wray, Professor Margot Prior, Professor Valsamma Eapen and Kiah Evans.

Government not intending its autism over-diagnosis claim

A report from  the Australian National Audit Office (ANAO) said that in February 2014 the Department of Social Security (formerly FaHCSIA) funded $50,000 worth of research to establish "the extent of [ASD] over-diagnosis nationally". 

A Deputy Secretary of DSS wrote back that

this wording is not intended to presuppose the findings of the Autism CRC report.

The Department apparently accepts (does not deny) their wording clearly pre-supposes the existence of autism over-diagnosis. However, the actual intent is now unknown. It is hard to imagine how a contract could be signed without anyone noticing this (unintended?) presupposition. A4 will be disappointed in the Autism CRC if it undertook research based on the questionable premise that parents/families and/or professionals are fabricating diagnoses of a medical condition. Credible research would not presume over-diagnosis exists; it would first need to establish that over-diagnosis really exists.

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