Letter from Minister Berry

Subject: Re: Letter from Minister Berry
Date: Thu, 15 Apr 2021 18:05:41 +1000
From: Bob Buckley (SOfASD Chair) <chair@sofasd.org.au>
Reply-To: chair@sofasd.org.au
Organisation: Speaking Out for Autism Spectrum Disorder, Canberra and the Australian Capital TerritoryCT
To: BERRY <BERRY@act.gov.au>
CC: Ms Emma Davidson MLA <davidson@act.gov.au>, barr@act.gov.au



 

Dear Minister Berry MLA

Thank you to your prompt (15/4/2021) reply to my letter to Minister Davison MLA (10/12/2020) in relation of the CDS service for diagnosing autistic children in the Australian Capital Territory.

I notice that your response does not address the key concern in my original email: that the NDIS is rejecting diagnoses from the ACT CDS autism diagnosis service. Apparently, it does not concern you or your Government that the NDIS is refusing autistic children access to the Scheme thereby denying these vulnerable children essential early intervention that is their right under international conventions, albeit not a right under Australian law.

I also notice that your letter says that in the ACT "currently children typically wait 12-18 months  from acceptance to referral to offer of appointment with a psychologist to undertake a diagnostic assessment". The best advice is that autistic children need intensive ASD-specific early intervention for at least 2 years. The earlier their intervention starts the better so a 12-18 month delay waiting for diagnosis is extremely detrimental. My 28 year old son with severe autism, who was fortunate enough to get belated (hence sub-optimal) early intervention, currently has an NDIS Plan with funding close to the average for his age, that is in the region of $130,000 p.a.. My friend's son, who is similarly autistic but did not get good practice early intervention when he was young, has an NDIS Plan valued at 3-4 time the cost of my son's NDIS Plan (I'll let you do the sums). Best-practice early intervention for autistic children is extremely cost effective and it relies on timely diagnosis.

With increasing ASD diagnoses, substantial amounts of tax-payers money are involved.

Currently, the NDIS funds early intervention for autistic children up to when they start school, that is around 6 years of age. But autistic children cannot access best-practice early intervention for their autism spectrum disorder (ASD) until they get their diagnosis. Your 12-18 month delay waiting for an autism diagnostic assessment denies many autistic children timely access to essential and effective early intervention. And the cost to the community of their missing out is enormous. The cost to autistic individuals and their families is immeasurable.

I am extremely disappointed to hear that you and your Government regard your 12-18 month delay in the diagnosis process is acceptable. This means your Government denies many autistic children in the ACT any chance to access essential and effective early intervention for their ASD.

If you feel that the ACT could and should do better than this, perhaps we can discuss what is needed and how it might be achieved. Please feel free to call me on 04xx xxx xxx or via email.

Bob Buckley

Chair, Speaking Out for Autism Spectrum Disorder (SOfASD)

a voice for people living with Autism Spectrum Disorder in the ACT

Please note SOfASD's policy on unanswered questions.

SOfASD recognises and respects the Ngunnawal people as the traditional custodians of our region, and for their continuing culture and contribution to our community.

On 15/04/2021 4:22 pm, BERRY wrote:

Good afternoon,

 

Please see attached letter from Minister Yvette Berry.

 

Kind regards,

 

Brooke Hendry | Office Manager

Phone: +61 2 6205 0233

 

 

Office of Yvette Berry MLA | Member for Ginninderra

Deputy Chief Minister

Minister for Education and Early Childhood Development

Minister for Housing and Suburban Development

Minister for the Prevention of Domestic and Family Violence

Minister for Women

Minister for Sport and Recreation

Phone: +61 2 6205 0233 | Email: berry@act.gov.au

Facebook | Twitter | www.yvetteberry.com.au

 

 

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