Speaking Out for Autism Spectrum Disorder (SOfASD), the systemic advocacy group for autism in the ACT, sees from the Minutes of the ACT Legislative Assembly that on 18/11/2015 the ACT Government moved and passed a motion saying:

“That this Assembly:

(1)      notes:

           (a)     that Autism Spectrum Disorder (ASD) affects around one in 160 children, with boys four times more likely to be affected than girls;

           (b)     the importance of early diagnoses, early intervention therapy and support for ASD;

           (c)     the role of the National Disability Insurance Scheme (NDIS) and that the ACT will be the first jurisdiction to fully transition to the scheme;

           (d)     the new arrangements for support, including post school options, which will take place with the transition to the NDIS;

           (e)     that, as of September this year, 2176 ACT residents have plans and another 439 have been deemed eligible and are developing plans through the NDIS;

           (f)     the establishment of the Child Development Service which will commence in 2016;

           (g)     that the Education and Training Directorate has 27.5 Learning Support Unit Classes and 30.5 Learning Support Unit (Autism) Classes in ACT government schools; and

           (h)     the commissioning of an Expert Panel on Students with Complex Needs and Challenging Behaviour and the Government’s response, which will be made available on 18 November 2015, with future updates to the Assembly, and

(2)      calls on the Government to:

           (a)     continue the transition to the NDIS;

           (b)     continue to update the Assembly on the roll-out of the NDIS in line with previous resolutions of the Assembly, and

           (c)     write to the Australian Government to resolve, as a matter of urgency, how the NDIS will fund and support Information, Linkages and Coordination services.”—

SOfASD appreciates the attention to autistic people given in the ACT Legislative Assembly on this occasion.

However, SOfASD is concerned that the motion says “Autism Spectrum Disorder (ASD) affects around one in 160 children”. We don't know where you got this information. We believe your prevalence figure is wrong, that it is substantial under-represents the number of children with ASD in Australia and in the ACT.

The following table shows the number of autistic children in the ACT and how we've determined a lower bound for ASD prevalence for June 2015.

age (years)	ASD	population	prevalence		1 in x
0-4	50	26870	0.186%
5-9	272	23797	1.143%	1.425%	87	70
10-14	389	21469	1.812%		55
15	66	5741	1.150%		87

These data indicate that the rate of ASD in children in the ACT is more than double the rate you had in the motion you passed in the Assembly. This is not new information (see http://sofasd.org.au/d7/node/32).

Planning done on the basis of such a massive underestimate of the number of autistic children in the ACT would result in chronic under-resourcing and outcomes for children with ASD will continue to be largely inadequate.

These larger-than-expected autism rates are evident in the NDIS, where autism is currently the biggest primary disability among NDIS participants (see http://a4.org.au/node/1027).

Data for autistic children in Australia in 2015 are in the following table.

age (years)	ASD	population	prevalence		1 in x
0-4	5748	1538952	0.374%
5-9	29027	1522192	1.907%	2.060%	52	49
10-14	31840	1415903	2.249%		44
15	5569	287190	1.939%		52

Note that these two datasets show:

• ASD is diagnosed at a substantially lower rate in the ACT than the national rate. Either there are fewer autistic children in the ACT, which seems unlikely to us, or it is more difficult to get a diagnosis of ASD in the ACT, which would mean ASD is under-diagnosed in the ACT so some autistic children miss out on early intervention and other essential services and supports.

• children diagnosed with ASD in the ACT are likely to get their diagnosis later than the national average … which further reduces their access to and the benefits from effective early intervention and early education.

Your initial motion also says “with boys four times more likely to be affected than girls”. It would be safer to say “diagnosed” rather than “affected” because:

• we don't know whether all those “affected” by ASD are being  “diagnosed”; and

• there are emerging concerns that girls/women who are affected by autism are not diagnosed as reliably as males.

The Carer Allowance data from the Commonwealth Department of Social Services, regarded as the best available data on ASD in Australia, shows that while the ACT Government's noted “the importance of early diagnoses, early intervention therapy and support for ASD”, it did not translate that into policy or practice in the ACT. ASD diagnosis rates and the age of diagnosis are substantially below the national rates.

SOfASD appreciates that the ACT is the first jurisdiction to implement fully the NDIS. We understand that the initial roll-out is a trial and efforts to improve the NDIS will continue for some time.

NDIS reports show that “autism and related disorders” is now the biggest primary disability group in the NDIS. Apparently, this came as something of a surprise to the NDIA: both its own estimates and the data from state/territory Governments for the trial sites substantially underestimated the number of NDIS participants with autism. This contrasts with the previous Helping Children with Autism package roll-out whose estimate, after discussions with ASD stakeholders, was remarkably accurate.

The NDIA rejected stakeholder advice that its initial estimates of the number of participants with autism/ASD were a major under-estimate.

SOfASD notes that neither the NDIS nor the ACT Government engaged ASD stakeholders at either the ACT or federal level in its NDIS planning process. A senior NDIS official recently committed to considering engagement with ASD stakeholders. The ACT Minister for Disability has demonstrated her substantial aversion to direct engagement with ASD stakeholders … though some informal contact has started with a mid-level official in the Education Directorate.

In relation to early intervention for children with ASD, we remain concerned that the NDIS which we understand is controlled to some extent through COAG and bilateral agreements, still (2.5 years into its trial) has not recognised the distinct nature of ASD and the distinct needs of autistic people … such as the distinct and diverse nature of early intervention for autistic children (see http://a4.org.au/node/843). Autistic children in the ACT cannot access best/good practice early intervention for ASD. While the services previously available were less than adequate, for many autistic children in the ACT who need early intervention the introduction of the NDIS resulted in a substantial step backwards. The the ACT Government refuses to acknowledge that the abolition of its Autism Intervention Units (AIUs) resulted in autistic children now being unable to access centre-based early intervention for their ASD.

SOfASD is not amused by the ACT Government seeking to take credit for the NDIS taking over post-school options. As the Productivity Commission observed, the system prior to the NDIS was largely inappropriate/dysfunctional. We need to see discernible results, beyond the basic NDIS reported numbers, before anyone can claim any real credit for post-school options for autistic adults in the ACT.

At 5/8 (62.5%) of the way into the ACT NDIS trial, there are 2176 ACT residents with NDIS plans and 439 preparing plans. That is 2615 of the 5000 expected, or 52.3% (without allowing for the under-estimate of ASD). While that's ahead of the NDIS trial site in South Australia, the motion omits that it's about 10% behind schedule.

SOfASD feels the proposed Child Development Service may well be an improvement … though we regard it as a partial fix and are yet to see stakeholder engagement.

In relation to education of autistic students in the ACT, there are clearly long-running issues. International attention from the boy-in-the-cage publicity may result in improvements, but the ACT Government can hardly take credit when action only arises as a result of adverse international publicity.

And after all that, the ACT Government has no idea how many autistic students is has … let alone what its education outcomes are for autistic students.

SOfASD will be commenting on the Expert Panel report and the ACT Government's response separately. Suffice it to say, the report is essentially as we expected when we raised concerns at the outset.

SOfASD certainly supports the ongoing roll-out of the NDIS … though we are concerned by its particularly poor or absent stakeholder engagement in relation to ASD, and the consequent poor policy and implementation that results from its disengagement with ASD.

SOfASD shares the ACT Government's concerns about the Information, Linkages and Coordination services element (ILC) of the NDIS. The NDIS shut down Autism Advisors in the ACT and South Australia and does not have a replacement. Families of young children who are newly diagnosed with ASD are denied an essential service and support. Basically, the ILC aspect of the NDIS has already failed the ASD community.

The motion omits other serious issues for autistic people in the ACT, such as the routine denial of services and supports for people with both ASD and mental illness, that your motion didn't mention. We would like to see the ACT Government make specific efforts to improve access for autistic people to dentists, GPs, Accident & Emergency, hospitals, supported accommodation, employment, etc.

As there is an ACT election due in the foreseeable future, and given the level of ASD in the community, we urge you to start now to develop autism policy to take into the coming election. SOfASD is happy to help political parties doing that.