DisabilityCare (NDIS) start: with serious initial concerns relating to people with autism/ASD

DisabilityCare, the renamed and emerging NDIS, "launched" in a number of locations (states?). Now we start to see how it is being implemented. Our hope is that the scheme will be genuinely person-centred: that is, it will focus on identifying and meeting the needs of each person (individual) with a disability. Our particular concerns relate to people with autism spectrum disorder (ASD). However, we have several concerns with the scheme's initial implementation. We are concerned that

  • the gatekeepers for the scheme have little training and limited knowledge/understanding of autism and the needs of people with autism spectrum disorder(s).
  • already, the scheme is finance-centred rather than person-centred (as it is meant to be).

In the Welcome message on its website (see http://www.disabilitycareaustralia.gov.au/), DisabilityCare claims:

DisabilityCare Australia is the national disability insurance scheme. This is the new way of providing individualised support for eligible people ...

So the challenge is for DisabilityCare to deliver on its claim to be a "new way of providing individualised support". In effect, it says the new scheme will not be just the old scheme revamped (painted over) ... or worse. At this stage we know relatively little about how DisabilityCare will function. All we can see is the initial activity at the launch sites. Under "what we do", DisabilityCare's website says:

We provide information and referrals, links to services and activities, individualised plans and where necessary, supports over a lifetime.

The phrase "where necessary, supports over a lifetime" appears last ... like it's an afterthought. Yet the other items are features (key elements) of the old dysfunctional disability service and support system that DisabilityCare is meant to replace.

Gatekeepers of concern

It is not clear to us how eligibility for support through DisabilityCare is determined. DisabilityCare has not shown how it will reduce 680,400 Australians with severe or profound disability under age 65 years (estimated by the ABS) to the 460,000 Tier 3 clients that DisabilityCare expects to support. Note that the ABS estimate of the number of people with severe or profound disability due to autism was 47,800 in 2009 ... which is over 7% of Australians under 65 years of age with severe or profound disability, and over 10% of the number or people with a disability who are expected to be eligible for (receive) Tier 3 support from DisabilityCare. Data indicate the number of people with severe or profound disability is relatively stable, but the number of people with autism has at least doubled every 5 years for the last two decades. At these rates, people with autism could well make up 20% of DisabilityCare's clients by 2014. It seems DisabilityCare is unwilling to accept such an analysis or that autism issues may be much more significant than they currently recognise. At this stage, DisabilityCare's Eligibility and Assessment tools are undisclosed (the documents are "secret bureaucrats' business"). We are not aware that the gatekeepers (DisabilityCare's planners) have much knowledge of people with autism or understanding of their needs. We doubt they have any relevant training — so what they do know is most likely myth and misinformation (which are the foundations of discrimination and prejudice). There is no visible process to ensure an effective transition of the knowledge and skills of FaHCSIA's existing Autism Advisor services transition to DisabilityCare; it seems existing corporate knowledge will dissipate with the transition from HCWA to DisabilityCare. Already, we have deeply disappointing reports of DisabilityCare planners, who lack understanding of autism/ASD, blocking access to essential services. We are concerned by informal reports of DisabilityCare planners, with no discernible professional training or qualifications in autism/ASD, making their own assessments of a child and questioning (rejecting) the Government's own advice on best practice early intervention for children with autism or that is included in individual reports and from allied health professionals. So far, DisabilityCare's gatekeepers show all the hallmarks of stepping backwards 20-40 years in relation to services for people with autism spectrum disorders. Perhaps, if DisabilityCare decides to communicate with the autism community, significant improved processes for people with autism spectrum disorders could be in place relatively quickly.

Finance-centred disability care

While the responsible politicians and senior bureaucrats insist repeatedly that the scheme is "uncapped", the DisabilityCare website shows that service price limits were set from the very beginning (see http://www.disabilitycareaustralia.gov.au/providers/pricing-and-payment-...). The signs are that DisabilityCare is a finance-centred or "rationed system" ... that DisabilityCare from the outset fails to start as a person-centred system. For example, DisabilityCare seems to have a $16,000 limit on early intervention. It is not clear (to us) whether this limit is per year or over a person's lifetime. The Government advises families of children diagnosed with autism that the available evidence clearly shows that a child with autism needs at least 2,000 hours of intensive ASD-specific early intervention (1,000 hours per year for at least two years). So DisabilityCare expects the average cost of intensive ASD-specific early intervention is $8 per hour ... yet DisabilityCare's hourly rates, in the same document, is over $160 per hour. How does any of this make sense? NDS, a peak body for disability service providers, already raised its initial concerns (see below) and would like to hear more from its members.

Conclusion

We can but hope that DisabilityCare will recognise its initial problems, especially in relation to people affected by autism, and will move quickly to improve how it functions.

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