Australian autism advocates express anger over proposed changes to the NDIS

The National Disability Insurance Agency (NDIA), which implements the National Disability Insurance Scheme (NDIS), recently published changes to its operational guidelines on the NDIS website about how people with autism are able to qualify for access to the scheme.
 
Although the NDIA quickly removed the document, claiming its publishing was a mistake, the proposed changes therein caused widespread anxiety and distress among people with autism.
 
The heart of the controversy was focused on the NDIS’s categorisation of people with autism. The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) lists three levels of severity for people with autism: level one, requiring support; level two, requiring substantial support; and level three, requiring very substantial support.
 
The NDIA document recommended moving people with level two autism from its List A, which guarantees automatic access to the NDIS, to List B.
 
‘If the changes went ahead as proposed, people with level two autism would not necessarily be denied access to the scheme,’ Katharine Annear, Chair of the Australia and New Zealand Autistic Self Advocacy Network (ASAN), told newsGP.
 
‘But being in List B would make it more difficult to apply for support in terms of the evidence required to prove functional impairment and daily support needs.
 
‘For families, this would mean extra assessments and reports at their own cost before entering the scheme. It would also mean the NDIA would have to spend more time assessing each application, which may lead to more delays in bringing participants on board.’
 
The NDIA explained in a statement that the changes were proposed in response to the Productivity Commission’s review of NDIS costs, which recommended monitoring the NDIA lists to ‘ensure they are working as intended’.
 
But advocates for the autism community believe the NDIA is attempting to reduce costs and ameliorate the effects of poor planning.
 
‘I believe it is a matter of cost cutting,’ Chief Executive Officer of Autism Awareness Australia (AAA), Nicole Rogerson, told newsGP. ‘The NDIA were not prepared for the number of participants with autism, but the numbers were always there – they just didn’t prepare and plan accordingly.’ 
 
Ms Rogerson also believes the proposed access changes for people with level two autism could affect the developmental future of children with the disorder.
 
‘Children with level two autism have the potential to make the most significant gains if we provide them with good quality, evidence-based early intervention,’ she said. ‘Most will go on to lose the debilitating aspects of autism and require significantly reduced support in the long run. They will go on to be tax-payers and return the investment to their fellow Australians.
 
‘If they miss out on the crucial funding under the NDIS, they won't have the opportunity to reach their best outcome.’ 
 
Ms Annear emphasised the further down-stream effects lack of NDIS access could have for people with autism.
 
‘Outcomes for people with autism in terms of community access, socialisation, independent living and access to employment are poor, not just in comparison to the mainstream population, but also in comparison to other types of disability,’ she said.
 
‘Failure to invest in this population will only create poorer outcomes and increase dependence on other forms of social support, such as Centrelink payments, homelessness services, mental health crisis services and the justice system, and put strain on informal supports.’
 
Ms Rogerson believes that such changes to the NDIS could also place additional demand on GPs.
 
‘If families aren’t receiving the support and services they need under the NDIS, they will most likely turn to their GP, adding unnecessary pressure and strain,’ she said.
 
‘GPs are also not included as part of the NDIS process in most cases, leaving them out of the loop when it comes to patient care.’ 
 
Although the changes posted to the NDIS website have been removed, the NDIA continues to review the way it categorises people with autism for access to the NDIS. As this process takes place, Ms Annear would like to see better connection between the agency and people from within the autism community.
 
‘More direct engagement with participants on co-design of appropriate pathways into the scheme, more expertise within the NDIA regarding ASD [autism spectrum disorder],’ she said. ‘And more investment in information linkages and capacity building projects designed to meet the needs of people across the lifespan, including appropriate supports in times of major transitions – such as school to work or family home to independent living – and better access to information about support for people to live, socialise, and work in the community.’
 
Ms Rogerson remains hopeful that the NDIA will live up to its stated goal of providing people with disability what they need to live an ordinary life.
 
‘We’d like to see them keep their promise and support all Australians with a disability, and not cut costs and amend policy midway through the rollout,’ she said. ‘It’s unfair to the autism community. 
 
‘Invest in our children and young adults now, give them the full opportunities they deserve, give their families the support they need and watch that return on investment in the future.’

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