Ms Y Berry MLA
Minister for Education and Early Childhood Development
Australian Capital Territory Legislative Assembly
GPO Box 1020
Canberra ACT 2601

Dear Ms Berry MLA

Subject: recognise behavioural clinicians in the ACT

Thank you for your response (29/3/2017) to our emails.

SOfASD is disappointed that you chose to deny implicitly our request to meet (made in our letter 30/1/2017).

In your response, you wrote:

With a recent video, the National Disability Insurance Agency (NDIA) released a bit of information about its NDIS Early Childhood Early Intervention (ECEI) Approach as it affects autistic children. Regrettably, The NDIS ECEI Approach falls well short of best practice early intervention (EI) for autistic children.

Autism Aspergers Advocacy Australia, a national grass-roots ASD advocacy group known as A4, applauds the NDIA’s intention to help children with disability into EI as quickly as possible. However, A4 is concerned that the NDIS ECEI Approach:

• avoids diagnoses and does not recognise the distinct nature of ASD and the distinct needs of autistic children;

• does not provide the impartial and comprehensive advice that parents need so they can make informed choices about EI for their autistic children;

• rejects expert advice that autistic children need intensive individualised ASD-specific and comprehensive EI; and

• diverts families from effective (evidence-based best practice) EI for their autistic children.

RICK MORTON, Social Affairs reporter

The future of the $22 billion Nation­al Disability Insurance Scheme has been thrown into ­crisis after as many as 2000 people with serious mental health conditions and disabilities were shut out of the program in the ACT, the first jurisdiction to fully adopt the new model.

The territory scheme reached its “target” of 5075 clients within hours of full rollout on September 30. Newly eligible people have been turned away and told to wait for a vacancy, which is typically only available when someone in the NDIS dies.

The ACT is a test case for what experts say is likely to happen when the scheme in other states reaches maturity in 2019-20.

From: Karna

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. ...

Recently, Marymead distributed a message that said:

Autism sector advocacy - Camilla had spoken to Jon Martin from the Australian Autism Alliance, who informed that there there is now little representation on the Alliance of local peak bodies in ACT. He suggested speaking with the ICAN Network or the Autism Self Advocacy Network. It would be difficult to set up a peak body, as NDIS does not pay for sector-wide advocacy, and it is not funded by government. As the Autism Alliance is in its infancy stage, it is unable to support the establishment of an ACT peak body at this stage. Discussions were held about exploring options for an existing NSW peak body to expand its coverage to extend to the ACT.

The implied demise of SOfASD and ASD advocacy in the ACT are premature. The ASD community in the ACT can remain confident in representation from Speaking Out for Autism Spectrum Disorder (SOfASD), their existing well established systemic advocacy representatives. SOfASD continues to be a strong voice for autistic people and people living with ASD in the ACT (BTW there is no "NSW peak body" for ASD advocacy, particularly for systemic advocacy).