The Commonwealth and ACT governments are rolling out the NDIS in the ACT. The transition process puts young children with autism spectrum disorder (ASD) among the first NDIS participants and disrupts (cuts) a range of existing ACT Government services including:

• The Autism Service (TAS) – an assessment/diagnosis service, “family group program” and “therapy services”. see http://www.communityservices.act.gov.au/therapy_act/services/autism_services

• Autism Intervention Units (AIUs) – centre-based early intervention for children with “autism”: see http://www.det.act.gov.au/childrens_policy_and_regulation/guide_to_childrens_service/related_childrens_services#earlyinter

• various playgroups – see http://www.det.act.gov.au/childrens_policy_and_regulation/guide_to_childrens_service/related_childrens_services#actplay

The NDIS also replaces the Commonwealth Government funding for the Helping Children with Autism (HCWA) package (see http://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability/helping-children-with-autism).

Some existing disability supports are continuing, such as Carer Allowance (see http://www.humanservices.gov.au/customer/enablers/centrelink/carer-allowance/eligibility) for families of children with disability generally (not ASD specific).

In 2014, young children in the ACT who have been diagnosed with ASD typically access a complex bundle of services for their early intervention.

Service	Annual cost per child
HCWA Early Intervention	$6,000
Therapy ACT	$2,000-$8,000 (no real data on individuals)
Autism Intervention Unit (AIU)	~$18,000
Pre-school (support and inclusion support)	variable
Respite	variable (depends on negotiation skills)
Total	~$26,000+

Families of children with ASD have to navigate a complex service system where crucial elements are simply missing.

Note that Governments left families in the ACT to try to integrate all these service elements into a complete package for their child. Few families are able to bring these uncoordinated (sometimes uncooperative) services together into something resembling a “good practice” early intervention package for their child.

While the AIUs in the ACT fell well short of what the Commonwealth Government advises is “best practice” early intervention for children with ASD, they were among the better government funded Early Intervention services for ASD in Australia.

The NDIA's current plans for early intervention for children with ASD in the ACT leaves children with less than “good practice” early intervention and without any centre-base early intervention service in the longer term. In this respect, the NDIS is a step backwards.

The ACT Disability Minister, Ms Burch MLA, claims there “will be no gap in [EI] service” (WIN News 24^th Oct 2014) with the transition to the NDIS but only Aspect and Aspire are registered with HCWA to provide ASD-specific EI programs (and are not planning new service models); and none of the providers has experience with or has plans to deliver centre-based programs that could replace the existing AIUs in the longer-term. Even if an EI provider planned to offer a centre-based service, the NDIA's EI items do not fund centre-based EI services for ASD (see below).

As the Commonwealth rolls out the NDIS, it is de-funding and dismantling HCWA. It is cutting funding for HCWA's early services in the ACT: particularly, funding ceases for the ACT Autism Advisors (see http://www.autismaspergeract.com.au/advisors) and the Early Days program – families rate both these programs highly. The funding for these programs is being subsumed into the NDIS and the NDIA is making programs and services for ASD “disappear”. HCWA provides several services that families rated highly, especially families that are new to ASD or facing the prospect of their child being diagnosed with ASD. In its trial sites, the NDIS cuts initial disability services for families in the process of ASD diagnosis ... services that should be available to prepare families of children with ASD for their NDIS planning “conversation”.

The NDIS is replacing the existing HCWA advice on services for families with generic disability information on the NDIS website (see http://www.ndis.gov.au/document/540). This generic disability advice is not evidence-based for autism: it is incorrect advice and misinformation in relation to children with autism/ASD.

The NDIA espouses a generic “transdisciplinary” approach to early intervention. To our knowledge, the “transdisciplinary approach” that the NDIA prefers/requires does not rate a mention in any credible review of EI for ASD. There is no credible evidence base to support a trans-disciplinary approach to EI for ASD.

Searching PubMed for “autism 'early intervention' transdisciplinary” yields “No Items”.

This means that there is no evidence-base to use to use as a basis in training allied health professionals to deliver evidence-based trans-disciplinary early intervention for ASD.

Reviews of research into Early Intervention for autism have recommended consistently that children with ASD need intensive ASD-specific early intervention.

For example in 2006, the Australian Government commissioned and distributed advice on best practice early intervention for children with autism (download from here). It revised its advice in 2012 (links here … follow the link under 'Eligible Interventions' to Roberts, Prior, et.al. 2011 MS Word & PDF and the Guidelines for Good Practice 2012 MS Word & PDF).

Note that the NDIA rejects the Commonwealth Government's advice on early intervention for autism/ASD (see http://a4.org.au/node/843); it claims the 2012 review is “out of date” (even though the conclusion of all such reviews are essentially unchanged for more than a decade and neither the NDIA nor the media have identified any significantly different results in recent research literature). The NDIA told the Senate Committee it commissioned Prof. Williams to do yet another review (see http://a4.org.au/node/869). In the meantime, Governments in the USA legislate to ensure early intervention for ASD is funded through both Medicaid and private health insurance (see http://a4.org.au/node/886).

The NDIA cut early intervention services for children with ASD in the ACT. The NDIA offers a child with ASD $8,000-$16,000 p.a. for early intervention for ASD ... which is a major reduction from the pre-NDIS funding level in the ACT and well short of funding needed to deliver best practice for ASD.

The NDIA's current offering for children with ASD in the ACT is described on pages 30-31 of its Support Clusters Definitions and Pricing for Australian Capital Territory (MS Word or PDF). This document “expects” children with ASD to fall into 3 categories: Level 1 (up to $8,000 p.a.), Level 2 (up to $12,000 p.a.) or Level 3 (up to $16,000 p.a.). Were the NDIA to listen to stakeholders it would know any such categorisation of children with ASD is extremely unreliable. The NDIA's approach will ensure sub-optimal outcomes for children with ASD.

The NDIS “expects” to fund a child severely affected by ASD in the ACT at least $10,000 below current funding level (at least $26,000 p.a.).

The NDIA's early intervention items that make up a child's NDIS funding for EI are:

Item	NDIA description	comment
16 002	early childhood interventions - travel time Group multidisciplinary early childhood interventions and family focussed information and training $168.26 per hour	The 'travel time' aspect is a mystery The group element lacks the intensity that most children with ASD need. The price per child for “group intervention” is the same as for “family focussed training” for an individual child. “Family focussed training” has relatively weak evidence (see the relevant Cochrane Review). $168.26 is well below what it cost Therapy ACT to provide such a service … according to their Annual Reports.
16 003	specialised group early childhood interventions Group based specialist interventions to assist a child with disability or developmental delay and their family in home, care, community and education settings. Maximum group of 4. $56.09 per hour	This lacks the program intensity that experts say is needed for good or best practice for ASD. This lack the initial centre-base intervention that many children with ASD benefit most from.
16 005	specialised individual therapy for early childhood Individual specialist interventions to assist a child with disability or developmental delay and their family in home, care, community and education settings. $168.26 per hour	Again, centre-based service is disallowed. … and the NDIA pays less than it cost the ACT Government to provide such a service.
16 006	transdisciplinary early childhood intervention A coordinated & integrated program where multiple professionals share responsibility in evaluating, planning & implementing supports to improve capacity of a child with disability or developmental delay & their family. Quote based on annual amount. $12,312 per year	The transdisciplinary approach/model lacks evidence for children with ASD. This item excludes centre-based EI.

The NDIA's approach to early intervention is especially bad for parent of children with ASD – see http://a4.org.au/node/892.

The AIUs cease operation at the end of the 2014 school year. The ACT Government says it hopes that the private sector will replace existing services with equal or better services … and that families will access these services using funds from the new National Disability Insurance Scheme (NDIS). The Government claims it will ensure suitable replacements are available in the ACT via the NDIS.

The ACT Disability Minister promised (at her workshop) that the AIU sites would be available to service providers. These sites allow EI programs that stage/progress students with ASD into Inclusive mainstream education. As yet, this promise in not a reality.

The ACT Government claimed it would bring various new EI providers into the ACT. The ACT Government and the NDIA “showcased” new and exiting EI providers at the recent Early Intervention Expo.

SOfASD went to the Expo and surveyed the providers at the Expo. The survey summary follows:

Provider	EI experience	Roberts & Prior awareness	EI offering	BCBA
Aspect	30+ years, ASD specific	Yes.	Building Blocks – centre- and home-based.	No. Increasing use of PBS
Aspire	Leader has 18 years experience, mostly ASD	Yes.	ABA home-based	coming
Cerebral Palsy Alliance	Yes little ASD specific	No.	Usually when autism a comorbidity and does not need heavy ASD-specific intervention	No
Life start	16 years not ASD specific	No.	NDIS key-worker model	No
Noah's Ark (from Victoria)	40 years not ASD specific	Yes.	Parent driven “24 hours” Trans-disciplinary/NDIS key-worker	No
Northcott	30+ years, ASD-specific since 2000	Yes? (thought P&R said 40+ hours per week)	NDIS key-worker model & DIR/Floortime	No

.

None of the providers present at the Expo plan to offer “best practice” early intervention for children with ASD in the ACT.

None of the EI providers at the Expo offers or expects to offer a centre-based EI service in the ACT. One of the few services offering centre-based service for autism (though not in the ACT) wrote …

While other Support Items indicate the preference of the NDIS to deliver therapy by the family in the home, AEIOU contends there is no evidence for the effectiveness of this approach for children with autism, particularly those with high needs. A recent Cochrane review, “…did not find statistical evidence of gains from parent mediated approaches in most primary outcomes assessed… other than positive changes in patterns of parent-child instruction … quality of the current evidence is low” (p. 2., Oono, Honey, & McConachie, 2013).

An Australian study of a 2 hour per week parent training program in Australia (Building Blocks, ASPECT, see Roberts et al., 2011) showed similar outcomes in the control and intervention groups, again suggesting a parent-mediated program does not yield significant benefits. The authors suggest, “The heterogeneity of the autism population indicates that a range of intervention options is necessary to meet the needs of children with autism and their families” (p. 1553).

(see http://aeiou.org.au/aeiou-ndis-philosophy).

Families of children in the ACT told the media that service providers simply are not ready … see http://www.communityservices.act.gov.au/disability_act/national_disability_insurance_scheme/early-intervention.

Behavioural intervention and support is an essential element of an individualised program for most children with ASD. Unfortunately, Australia lags a long way behind. Currently, no university in Australia offers training to become a Board Certified Behaviour Analyst (BCBA) – see http://www.bacb.com/ – two Universities in New Zealand offer training for this international qualification.

None of the EI providers currently has BCBA level behaviour support for or as part of their program (though Aspire expects it will have a BCBA by the end of the year … and expects its staff to train for a BCBA). Aspect and the Cerebral Palsy Alliance are aware that people with ASD often need strong behaviour elements in EI and later programs.

The providers present at the Expo (in alphabetical order) were:

1. Aspect or Autism Spectrum Australia: http://www.autismspectrum.org.au/ Offering “Building Blocks” which includes centre-based program elements.

2. Aspire Early Intervention: http://aspireearlyintervention.com/ is committed to ABA or EIBI early intervention for children with ASD. Aspire's expects its one of its senior staff to be a qualified BCBA before the end of the year … and requires staff members to undertake training for their own BCBA.

3. Cerebral Palsy Alliance: https://www.cerebralpalsy.org.au/ has pages on EI https://www.cerebralpalsy.org.au/services/for-children/early-intervention-supports/ and behaviour support (see https://www.cerebralpalsy.org.au/services/all-programs-and-services/behavior-support/) without knowledge of BCBA … good attitude. Good people to work with on multiple and complex needs.

4. Life Start: http://www.lifestart.org.au/ says on their website “The success of the program is based on the involvement of parents/carers in their child’s therapy which is referred to as Family Centred Practice.” http://www.lifestart.org.au/2014-04-10-05-35-14/early-childhood-intervention

5. Noah's Ark: http://www.noahsarkinc.org.au/ … is not very specific on their EI web page about what they do, see http://www.noahsarkinc.org.au/what-we-do/early-childhood-intervention-services-ecis/

6. Northcott: https://www.northcott.com.au/ uses “what's known as a Transdisciplinary Approach to deliver Early Childhood Intervention and Support Services.” see https://www.northcott.com.au/services/early-intervention … referred to Play and Language for Autistic Youngsters (PLAY) see http://clinicaltrials.gov/ct2/show/study/NCT01768806 (with no study results posted).

ASD is:

• a distinct disability type: children with ASD have distinct needs relating to ASD that the research evidence says must be addressed specifically to achieve better or best outcomes. Claims that evidence supports generic approaches to (programs for) early intervention for disability are false. The only evidence of effective programs for children with ASD is from programs that have significant ASD-specific elements in the programs. Fact: early intervention programs that do not include specific ASD-related elements are not evidence-based in relation to children with ASD.

• “delayed and different developmental”, ASD is not the total absence of development, so any report on or description of a program/intervention that says children with ASD merely improved or progressed (e.g. http://www.adhc.nsw.gov.au/__data/assets/file/0011/269984/ARTD_Final_Report_Exec_Summary.pdf or http://www.autismspectrum.org.au/sites/default/files/PDFuploads/Research%20Insights%20News%20Iss%202-LR.pdf) miss the point; which is whether the children with ASD progressed faster in their program, in the direction of appropriate functional development, than comparable children with ASD do without an intervention.

About Early Intervention for ASD –

1. Inclusion is not Early Intervention for ASD. For the ~75% of people with severe or profound ASD, Inclusion is a) a goal (not a method), and b) a setting for a child with ASD to generalise skills (usually first learned in a less distracting setting). The evidence is clear that many children with ASD placed/included in mainstream setting fare quite poorly; and despite ongoing challenges, no one has evidence that even Supported Inclusion is often effective as early intervention for children with ASD. In fact, far too many parents report that their child with ASD was “damaged” through inadequately supported Inclusion (resulting in increased stress, anxiety, bullying or even abuse). Inclusion for children with ASD needs much more careful delivery and monitoring than is usually available/provided.
   See also http://a4.org.au/node/743

2. The parent/family centred approach to EI for ASD, espoused by the NDIA, is not supported by evidence. The parent/family-centred model disrespects and undermines families, especially mothers who feel guilty if their child does not experience best outcomes. Advice to families: do not judge yourself harshly - treating ASD is very difficult and sorry to say major success (for severe or profound ASD [74% of diagnoses]) is unlikely; and do not let anyone judge you, especially anyone who knows less about autism than you do (most people including most health professionals).

3. trans-disciplinary EI for ASD, espoused by the NDIA, is not supported by evidence.

4. very few allied health professionals in Australia are trained adequately in EI for ASD … the workforce required to deliver EI for ASD does not yet exist in Australia – see http://a4.org.au/node/837

5. There are big issues with service/program fidelity. For example, Therapy ACT said a) it did not use ABA, and b) that it did PECS. Since PECS is a 5-stage program where every stage is purely ABA discrete trial, it is completely impossible to do PECS without doing ABA. So these contrary claims show that TACT simply did not know what it was doing: it was not doing PECS (and TACT's positive behaviour support (PBS) practices more resembled ABA that they knew). This lack of program fidelity will be a major challenge for EI under the NDIS.

6. EI for ASD is not expensive: so far 30+ states in the US have legislated to require private health insurance to cover treatment for ASD (see http://www.autismhealthinsurance.org/37-states-now-require-autism-health-insurance-mandates). Cost predictions were massively exaggerated, up to 1,000 times higher than actually came about. No private health insurer in the US is going broke paying for EI for ASD … quite the reverse, see http://www.nytimes.com/2014/09/04/us/health-care-spending-to-rise-federal-experts-predict.html

7. EI for ASD is an investment in the future: one report said “every dollar spent on early intervention [generally] saved $10 per year after that”. It is truly remarkable that the Government has never asked for a proper cost-benefit analysis of EI for ASD; the only possible conclusion is that Government just does not want to know.

The truism that “no one approach/model suits all children with ASD” leads to a plethora of misinformation. Providers of EI for ASD often suggest "it will be best for your child to start with our program first and see how it goes" without any real basis for deciding. Families should make their own decision and start with the approach that they believe is most likely to work best for their child (though this may be influenced by NDIS funding and service availability).

Most providers enthusiastically (and very unprofessionally) bag each other's programs ... yet they lack sufficient knowledge (of programs other than their own) to make professional comment. Families should ignore what any provider says about another providers' programs unless the professional can show clear evidence that they really have the knowledge to make any such criticism ... families should regard a professional bagging any other EI program as a clear demonstration of their propensity for unprofessional conduct.

The existing research does not show that if method A does not suit a particular child with ASD then there is some other method B that works better for that particular child and their ASD. The evidence does not show that there is a method that works or works best for every child with ASD … nor do the researchers or reviewers offer an approach to finding a best approach to EI for ASD for an individual child. This is a serious omission from all research reviews.

Evidence is never good enough to satisfy researchers. In their reviews, researchers always reach the self serving conclusion that more research is needed.

Researchers simply do not appreciate that parents have to act immediately on the best available information; parents/families cannot wait for definitive results as that never come. Anyone commissioning a new review of EI for ASD should ensure that it delivers advice on how families should proceed with EI for their child given the current state of research.

Basically, the NDIA and the ACT Government are not ensuring, in the transition to the NDIS, that children with ASD can access centre-based Early Intervention for ASD, as was previously provided for some children in the ACT. The NDIA rejects expert advice on Early Intervention for autism. The long-term cost to the community of refusing/failing to ensure children with ASD access best practice Early Intervention for ASD is enormous.