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).
Autism advocacy in the ACT has a strong history. Autism advocacy in the ACT has had a substantial independent voice for almost 20 years; a voice that is separate from service provision and has contributed substantially to local achievements such as:
- introduction of LSU-As in ACT schools (1998)
- creation of Autism Aspergers Advocacy Australia (A4) to advocate nationally ... and A4 had
- Asperger's Disorder/syndrome made eligible for Carer Allowance (child) and
- a major role in the creation of the federal Helping Children with Autism (HCWA) package.
A4 continues to advocate systemically for a better NDIS, improved education and employment for autistic people, human rights and many other policy and program improvements. A4 and SOfASD have very clear understandings of territory and federal issues.
- the ACT Government funded AAACT's family support officer following strong representation from the ACT systemic advocacy group (not from AAACT). AAACT's family support officer is the only direct support that the ACT Government provided to support the ACT's ASD community.
- SOfASD has raised concern over the ACT's lower than average diagnosis rates for ASD (see http://sofasd.org.au/d7/node/32 and http://sofasd.org.au/d7/node/142)
- the systemic advocacy group was the first to suggest that the ACT should have a comprehensive diagnostic service for children with disability, developmental delay, etc. The Child Development Service that started in January 2016 is the ACT Government's first step in that direction.
- the SOfASD website shows strong interest having behaviour professionals in the ACT ... to support education and other disability services. For example, SOfASD has raised concerns that the ACT Government's response to the much-publicised boy-in-the-cage embarrassment is not effective for the particular child or for the ASD community in general.
- SOfASD is working with A4 to improve the quality of information about ASD services and supports.
SOfASD has strong links with A4 and other national advocacy groups. A4 represents ASD in Disability Australia and AFDO. These are peak disability bodies. They are funded by the Commonwealth Government.
SOfASD and A4 also have links to Disability Advocacy Network Australia (DANA).
It is easy to find SOfASD on the internet: Google shows SOfASD on the first page if you search for autism advocacy Canberra (or Australian Capital Territory).
Be assured, SOfASD is ensuring systemic advocacy for autistic people is alive and well in the ACT. Government does not act, services never improve, unless there is strong and persistent pressure from the community.