The National Disability Insurance Scheme (NDIS) kicks off in the ACT in less than two months but it is far from ready for people with autism spectrum disorder (ASD). The NDIS is extremely difficult for people with ASD to navigate.
NDIS eligibility criteria for ASD remain gobbledygook (see http://a4.org.au/node/794). Mr Buckley, who is Convenor of Autism Aspergers Advocacy Australia (A4) and Chair of Speaking Out for ASD (SOfASD) in the ACT, said “We raised concerns about NDIS eligibility criteria relating to ASD with the National Disability Insurance Agency (NDIA) and the ACT Government but as yet they made no discernible response. It is hard to have much confidence in an NDIS that people cannot understand and that does not appear prepared to address its most basic ASD-related operational problems”.
For children with ASD, the NDIS replaces the Helping Children with Autism (HCWA) package (see http://tinyurl.com/ncry45s). Introduction of the NDIS caused the Commonwealth to defund (not renew the contract for) its Autism Advisor service in the ACT that was part of HCWA. The Autism Advisor service is essential, especially for families of young children who are being or were recently diagnosed with ASD. In Australia, the burden of understanding clinical research then designing and managing a complex early intervention program for their child falls entirely on the family. Under the HCWA package, Autism Advisers give practical help to families starting on this difficult task. But the NDIA omitted this service from its transition arrangements in the ACT (in South Australia, their Autism Adviser contract runs for 12 months after the NDIS trial started).
“The NDIS is not yet designed for people with ASD”, Mr Buckley says. “Designers of the NDIS excluded ASD community representatives from the NDIS design process, and demonstrate dismal understanding of the needs of people with ASD. Their response is disappointing since a recent NDIA media release says ASD is one of their largest client groups” (see http://www.ndis.gov.au/quarterly-report-shows-participation-ndis-doubles...). The NDIS is not going as well as officials claim (see http://www.abc.net.au/news/2014-04-29/ndis-failing-to-deliver-disability...).
The ACT Government plans to shut down Therapy ACT, its early intervention units, respite services and group homes; expecting that non-government service providers to replace these disability services and supports using funding from the NDIS. “Experience shows that it's not that simple”, Mr Buckley says. “HCWA funding did not lead to substantial growth in services even when people understood the HCWA funding and service models beforehand. The NDIS startup in the ACT will be chaotic because service providers and the community do not have the information and forecasts that they need to plan expanded non-government ASD-related services.”
“With HCWA, the ASD community in the ACT had to create its own service consortium so families could access local early intervention services; but with the NDIS, new and existing providers lack basic information – and the NDIA and the ACT Government are just not responding. The relevant Ministers at both levels of Government refuse to even meet ASD advocates; they insist instead that ASD advocates communicate with them indirectly, via 'chinese whispers'”.
“Currently, families with a new ASD diagnosis need to understand the older HCWA scheme (that they won't ever access) before they even start to understand the NDIS. This is just silly”, Mr Buckley said (see http://www.ndis.gov.au/document/651).
“The ASD community knows non-government disability services cherry-pick better clients and those who are 'more difficult' miss out. Also, regulation prevents non-government services from responding in an emergency. The NDIA and the ACT Government need urgent input from the ASD community so that the NDIS can meet needs of a major client group as the scheme starts up in the ACT”.
Contact: Bob Buckley, A4 Convenor and SOfASD Chair.
7 May 2014