News/Announcements

World's largest autism grant will transform research landscape

The largest research grant ever given for neurodevelopmental conditions has been awarded by the Innovative Medicines Initiative to an international consortium academically led by the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King's College London.

The €115 million grant, titled Autism Innovative Medicine Studies-2-Trials (AIMS-2-Trials), will increase our understanding of autism and help develop new therapies to improve health outcomes and quality of life for autistic people.

FoI: NDIA website mistake

Dear Mr Buckley

Re: FOI 17/18-285

Thank you for your email.

I can confirm that the Agency has received your below Freedom of Information (FOI) request and please find attached correspondence in relation to that request.

I can also confirm that the Agency has received five other requests from you seeking information under FOI, dated between 22 May 2018 and today, and will be providing responses in due course.

Timeframe for acknowledging requests

to NDIA CEO & Chair

Dr Helen Nugent
Chairman

Mr Robert De Luca
Chief Executive Officer

Thank you for you letter, 18 May 2018 in response to A4's media release.

Mr Peter de Natris did not "advise [me] by phone on 15 May 2018" of anything. He did not call me. I note that a spokesperson for your organisation told The Guardian (see https://www.theguardian.com/australia-news/2018/may/18/ndis-mistakenly-posts-changes-restricting-access-for-autistic-children) that someone from the NDIA called me ... but that is not true.

Australian Autism Research Council established by Autism CRC

We are pleased to announce we are establishing an Australian Autism Research Council to review and determine national priorities for autism research and address areas of need for the autistic and autism communities

Our vision is that the priorities established by the Australian Autism Research Council will guide the future focus of research activities and research funding by government as well as research and development undertaken by non-government organisations and other industry members who provide programs and services for the autism community.

Submission on autism/ASD and the NDIS in the ACT

A4 and SOfASD made a joint submission to the ACT Standing Committee on Health, Ageing and Social Services about the NDIS. It concludes with the following section:

Conclusions and suggestions

The NDIS has enormous potential to improve the lives of Australians with disability and the whole community. But to achieve its goals, the NDIS needs to be so much better than it is now.

The NDIA seems to have issues particularly with autistic participants.

Re: NDIA, autism stakeholders and early intervention [SEC=UNCLASSIFIED]

Dear Ms Nugent

Thank you for your reply and for your apparent intervention.

Please note that I met with Mss Faulkner, McClelland and O'Neill in January 2018 (and previously in December 2016) with the alleged purpose "to discuss [A4's] concerns"; but the meetings were not discussions. I explained what happened in the latest meeting in my previous letter; the NDIA officials were unprepared for the meetings so they did not discuss A4's concerns related to early intervention for autistic children.

While I explained again A4's concerns early intervention for autistic children in the "meeting", the subsequent letter from Ms Faulkner, ostensibly to summarise "the discussion", omitted all the concerns that I raised (in both the meeting and preceding letters). Ms Faulkner's follow-up letter shows clearly that the NDIA officials did not recognise (or summarise) any of A4's concerns.

World Autism Awareness Day 2 April 2018 Empowering women and girls with autism

Australian Autism Alliance logoMedia Release

As declared by the United Nations, the 2018 World Autism Awareness Day focuses on the importance of empowering autistic women and girls and involving them and their representative organisations in policy and decision making to address these challenges.

"Girls with disabilities are less likely to complete primary school and more likely to be marginalised or denied access to education. Women with disabilities have a lower rate of employment than men with disabilities and women without disabilities. ...

Concerns over AAT processes for NDIS reviews [DLM=For-Official-Use-Only]

Thank you.

Bob Buckley

Mr Buckley,

I have referred your feedback to management for consideration.

Yours sincerely,

Kate Lynch
Executive Officer
Administrative Appeals Tribunal
Principal Registry

Dear Ms Lynch

Thank you for your interest. However, I am concerned that ongoing reviews of decisions relating to young children who need early intervention are delayed indefinitely in the AAT process.

letter: NDIA, autism stakeholders and early intervention

NDIS logo

Mr Robert De Luca
CEO of the National Disability Insurance Agency

Dear Mr De Luca

Autism Aspergers Advocacy Australia, known as A4, is the national grass-roots advocacy group representing autistic people and others living with autism spectrum disorder (ASD). A4 and others in the ASD community have tried to engage with the National Disability Insurance Scheme (NDIS) from the outset. But there has been very little progress.

NZ: He's not naughty - so why is he behaving like that?

Jane Smith

Autism! We've all heard the word, but what is Autism and how much do we really know and understand about it?

For kiwi father James Smith, bringing a unique book to New Zealand to promote the understanding and awareness of Autism was a way of helping others like his son Zachary (6) who was diagnosed as being on the Autism spectrum when he was just three years old.

Correspondence with NDIS

Subject: Letter from Chris Faulkner [SEC=UNCLASSIFIED] NDIS logo
Date: Wed, 28 Feb 2018 03:29:29 +0000
From: FAULKNER, Chris
To: Bob Buckley (A4 Convenor)

Good afternoon,

Please find attached letter following on from our meeting on 30/01/2018.

Kind regards,
Chris Faulkner

Georgia and the NDIS

Jason Clare MP portrait - official photograph

The Hon Jason Clare MP
Member for Blaxland
Speech: 12 Feb 2018

Tonight I want to talk about a beautiful little girl who lives in my electorate named Georgia.

Georgia is 9 and she has multiple disabilities.  She has autism, epilepsy and profound global development delay.

Georgia can’t dress herself, or brush her teeth or comb her hair.  She can’t shower on her own.

She has to wear a nappy 24 hours a day.  

She has to wear a onesie - otherwise she will put her hands in her nappy and smear faeces around the house.

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