By bobb |

The Join Standing Committee on the National Disability Insurance Sceme released its progress report (see link here 10Mb PDF). The report is about the first 12 months in the initial "trial" sites.

In relation to autism, the report says:

  • a mother reported "My daughter got mobility allowance. The mobility allowance has now been rescinded. It comes under the NDIA. ... " page 30

  • the father of a 23 year old man with autism, told the committee that he had commenced discussion with his NDIA planner to try and find long term supported accommodation. He recognised that while it is 'a slow process', '[I]t will happen eventually, hopefully'. page 71

  • The committee asked the NDIA's Chief Executive Officer, Mr David Bowen, if the Agency had plans to establish forums in trial sites to gain feedback from participants. He responded:

We will now start to extend out from that with mechanisms for this informal consultation. We would propose to do it with local groups. So, in South Australia, it would be appropriate to have one around autism, for example, because there are a lot of issues that are central around that. ...

page 82

  • Mr Jon Martin, CEO of Autism SA was asked about "the assessment tool" and is quoted on pages 117-8

    • Autism SA had "No formal role at all. We are involved in the trial site working party and have been allowed to comment on particular elements of both the eligibility criteria and the layered approach to the funding levels for the transdisciplinary package. But we feel that this has happened almost after the horse has bolted. ... a lot of information gathered [for HCWA] on best practice, how diagnosticians link with service delivery planning—all those kinds of things. That has not really been considered or incorporated, from our perspective, into the [NDIS] planning and assessment model." 

    • he thought [the NDIS assessment tool] was: "[A] very generic tool that is more geared towards people who are physically or cognitively disabled. It does not necessarily pick up on the sensitivities related to autism spectrum disorder."

  • The committee asked the NDIA if they were undertaking any work into the early childhood intervention issues. Ms Cairns responded stating that:

    Ongoing work is continuing between that part of the agency and the sector more broadly about establishing what the evidence base is, including some of the high-end, complex autism programs.

    page 118

  • ... South Australia also has the second highest incidence (26 per cent) of autism across the [four initial] trial sites. page 118

  • ... 10.5 per cent of children in South Australia with a primary diagnosis of autism have plans where the agreed costs of early intervention exceed the guidelines of $16 000. page 124

  • ... the NDIA noted that it is commissioning work on developing the guideline approach for autism. The Agency has engaged an internationally recognised epidemiologist and academic, Dr Katrina Williams, to convene a group of experts to update the research evidence for the management of autism. It told the committee that this work will lead to the development of more specific guidelines for needs assessment and reasonable and necessary interventions for children with autism. page 126

  • Mr Martin expanded on the advocacy role especially concerning autism advocacy services:

    At the moment we have block grant funding from the Commonwealth, individualised funding from the Commonwealth, block grant funding from the state, individualised funding from the state and individualised funding under an NDIS model. The autism adviser roles, for example, are funded by a block grant from the Commonwealth. We have been put on notice that it is highly unlikely that they will continue, though they have been an immense and very effective support for the autism community in assisting families—especially in the pre-planning process before families even get to the NDIA—through the process of getting to understand the diagnosis; working through the grief process with accepting a diagnosis; how families can tell their extended family members; how to support siblings of the person with the diagnosis through that process; and what kinds of supports and systems might be necessary to best move that family to a position where they are effectively integrating and supporting their son or daughter. So we would like that to continue, in terms of the autism adviser role, but, as I said, we have been put on notice that that is unlikely to continue.

    pages 128-9

  • the committee notes that the NDIS has indicated that it will be working closely with all stakeholders to continually improve processes and particularly the planning process in respect to children and autism. The planning conversation and draft plan need further consideration specifically as highlighted the inclusion of a cooling-off period and a right to appeal before a plan is implemented. page 129

  • It is evident to the committee that some plans, particularly some transdisciplinary plans, have been assessed strictly in accordance with the operational guidelines by planners and as such have excluded some participants from the supports they require. Where this is particularly a concern is in respect to children who quite clearly have permanent disability such as hearing loss, and where early intervention will provide cost-effective outcomes exactly as envisaged by the Productivity Commission, it is unacceptable. The committee was however encouraged by NDIA's acknowledgement at the hearing that:

    The guidelines…are not cast in concrete. Ongoing work is continuing between … the agency and the sector…about establishing what the evidence base is, including some of the high-end, complex autism programs … we have the evidence, I would certainly expect to see that we will get some further information and instructions out to staff, or in fact change the guidelines. We are clearly satisfied that the evidence means that the current guidelines are insufficient.

    page 130

  • The NDIA responded to a question on notice about how the three tiers (upper limit $16,000 for early intervention) in the NDIS Operational Guideline—Plan and Assessment—Supports in the Plan—Supports for Early Childhood were established. The NDIA did not answer. The NDIA did say "These are guides only ..." The answer also says "Information to planners is exactly the same as the information published on the NDIA website in Operational Guidelines on Early Intervention for children and in the Best Practice Framework for early childhood intervention". pages 201-2

  • Question 29 (page 203) is about autism and the $16,000 cap on early intervention ...  The NDIA's initial response says it 

    • "is engaging with experts in the management of autism" ... but as yet there is little sign that the NDIA is engaging parents who in Australia are the only real experts in the management of autism, especially in young children, since tertiary training and professional certification in autism is largely absent. Since the Government and the insurance sectors do not fund best practice early intervention for children with autism, the only practitioners with expertise are those funded privately by families who can afford it. In Australia, agencies like the NDIA usually seek advice from academics who do not have experience in the actual delivery or the outcomes for best practice for children with autism.

    • "does not have hard evidence of the inadequacy of the $16,000 benchmark" but they also lack evidence that the NDIA's benchmark is adequate ... and they deliberately omit that they have documentary evidence in the form of repeated expert opinion showing that the $16,000 limit is inadequate.  

  • The NDIA gave a revised response to Question 29 (pages 232-3) ... apparently, the NDIA rejects the plethora of previous reviews of early intervention for children with autism (see http://a4.org.au/a4/node/843) and insists on doing yet another review since previous reviews did not give the answer the NDIA wanted about best practice early intervention for autism. It does not matter that Australian[1] and overseas reviews all share the same conclusions; the NDIA insists on its own agenda for kids with autism whether it meets the needs of children with autism or not. 

The Committee asked some key questions. It is not clear that the Committee understands the answers they got and what they mean for people with autism.

The NDIA's answers to Questions 28 and 29 above mean that the NDIA chose to service autism on the basis of existing misinformation, ignorance and prejudice about autism in the wider disability sector. The NDIA requires its planners to assess what services are "reasonable and necessary" for people with autism without ensuring the NDIS planners are aware of the available research and best practice guidelines: NDIS planner have a much more difficult job than HCWA Autism Advisors but the NDIS planners, unlike the HCWA advisors, have little or no relevant experience or training relating to autism. The current NDIS design is particularly bad in relation to autism. 

1. from Prior, M., Sanders, M. R., & Sheridan J. (1997). Early intervention programs for children with autism. Perth, WA, Australia: Western Australian Disability Services Commission to http://www.dss.gov.au/sites/default/files/documents/09_2012/review_of_the_research_report_2011_0.pdf (2012) and the associated documents.