Dear Ms Burch MLA

Following the recent NDIS cover in the media, there are several issues I would like to talk about with you as the Minister responsible for the coming NDIS in the ACT. I am generally supportive of the coming NDIS but I have serious concerns about the roll out. In particular, I am concerned that the transition to the NDIS may not be well planned and that several crucial services that affect people with autism spectrum disorder (ASD) have or will fall through the cracks.

I met a couple of senior people in the NDIA on Tuesday. I asked them about the fact that the NDIS quarterly reports so far do not indicate that a single person with autism is shown as eligible in the first 6 months of the NDIS trials. The reporting shows 67% of people NDIS clients have an Intellectual Disability ... but it does not mention autism at all. It is unclear where people with ASD would appear in their reporting.

While I was with them, they looked at some of their internal reporting. They appeared surprised that autism/ASD may in fact be the biggest distinct disability group in the initial NDIS intake. It seems, they did not know this before; they had not noticed.

Similarly, the ACT's NDIS Expert Panel has no discernible expertise in autism/ASD. How can the NDIA and the ACT Government prepare for the NDIS without any meaningful consultation with the ASD community, one of the biggest client groups for the NDIS?

Already, we are seeing essential services for people affected by ASD disappearing with the arrival of the NDIS. For example, the contract for Autism Advisers in the ACT (and South Australia) has not been renewed: the Autism Advisers are a Commonwealth program that is falling through the cracks between existing services and what the NDIA sees itself as responsible for.

Since the ACT NDIS implementation process is not consulting the ASD community in the ACT, it is likely that there will be major service gaps here too. For example, it is unclear what will happen to autism/ASD diagnosis when the ACT Government shuts Therapy ACT down. Will the main autism/ASD diagnosis service in the ACT just cease to exist?

The newspaper reports say the ACT Government is shutting down its therapy services for school students with a disability ... but the NDIS does not cover education-related services. Surely this means some students with a disability will be worse off with the arrival of the NDIS ... but no one was supposed to be worse off with the NDIS. To my knowledge, there was little or no service for students with ASD anyway, so this isn't really a detriment for the ASD community. It seems however, that therapy services for school students with ASD will remain a massive service gap for students with ASD when the NDIS arrives in the ACT. People hope that the NDIS will close gaps like this, but there are already signs that it may not.

There are many more concerns relating to people affected by autism/ASD that I suggest you should be aware of.

Please can we meet to discuss these matters. I can be contacted by email or telephone.

regards
Bob Buckley
Chair, Speaking Out for Autism Spectrum Disorder (SOfASD) in the ACT
Convenor, Autism Aspergers Advocacy Australia (A4)

4/4/2014