When advocating for people with a disability in Australia, one becomes indurated to the disappointments provided by the Government. We were treated to another example this month, writes Dr James Best.
Dr Best believes if children with Level 2 ASD are removed from the NDIS automatic qualification list, already strained families will face more red tape before they can access the scheme.
A 2011 Productivity Commission inquiry recommended a new national scheme to provide insurance cover to all Australians in the event of significant disability, noting that the funding of the scheme should be, like Medicare, a core function of the Federal Government.
Thus, the National Disability Insurance Scheme (NDIS) was born.
In its original report, the Productivity Commission (the Commission) noted such a scheme would ‘generate substantial net benefits, including efficiency gains and cost savings’. That is, it was not only fair, it made financial sense.
The Commission was asked to conduct a progress review in 2017. It noted that NDIS costs were broadly on track with long-term modelling, but there was unanticipated demand for services for children with autism.
The 2017 report went on to say:
The NDIA [National Disability Insurance Agency] maintains a list of conditions (List A) that allows for streamlined entry into the NDIS … the NDIA did point to Autism Spectrum Disorders [ASD] as potentially representing a difficulty for List A … A process for quickly changing the lists as new information comes to light is necessary, as is transparency about what is on the lists and why changes are made.
Individuals with Level 3 and Level 2 ASD are currently in List A and allowed streamlined access to the NDIS. But earlier this month the NDIA accidentally released new advice to providers, indicating that Level 2 ASD would be scrapped from the ‘automatic qualification’ list.
The media obtained of this information and the NDIA’s communication was hastily withdrawn, but the intent was clear. Families with a child with Level 2 ASD, often already straining under significant emotional and financial pressures, will have to jump through more hoops to be allowed access to the scheme.
Autism advocacy organisations heard this news via the media. So much for transparency around the changes.
To families living with autism, this felt like a punch to the face. To me, someone whose practice is dominated by individuals on the autism spectrum, it was all too familiar. The expense of supporting young people with autism was underestimated, so now comes the cost-cutting.
The current Diagnostic and Statistical Manual of Mental Disorders (DSM-5) criteria for ASD classifies individuals into three levels according to severity. People with Level 1 ASD are those ‘requiring support’, without which they will have noticeable impairments in social functioning and communication. Those previously labelled as having Asperger’s syndrome generally fit into this category. Individuals with Level 3 ASD are those ‘requiring very substantial support’, who have severe deficits. Many have little or no speech and behaviours that markedly interfere with functioning in all spheres of life.
Enter Level 2 ASD, individuals ‘requiring substantial support’. It is this level of autism for which the NDIS has apparently whipped away the welcome mat. It is this level of autism that has come under attack in some sections of the media as not being ‘disabled enough’. It is this level of autism that has been described by some commentators as ‘mild’.
Well, maybe it’s just me, but I would have thought that if an individual receives a diagnosis from a paediatrician or multidisciplinary team that has determined they require ‘substantial support’, that would mean the individual, you know, requires substantial support.
Level 2 ASD is the type with which most GPs would probably identify in their practices. Level 3 ASD patients present less regularly and often have multiple diagnoses. Level 1 ASD often goes undiagnosed, at least until late childhood, when mental health issues become prevalent.
It is children with Level 2 ASD who present to GPs for care plans, and referrals to speech therapists, occupational therapists and paediatricians. They may or may not require special education, but they always require substantial support – by definition.
What these young people also have, however, is potential, provided they receive the right supports. Despite their communication and social impairments, their rigidities and obsessions, they often also have untapped abilities. We all know this and many of us would have witnessed it with our patients.
Autism does not necessarily go hand in hand with intellectual disability, and all Australians should want these young people to be given a chance to contribute to society.
Ask a teacher of kids with Level 2 ASD whether these children need extra resources if they are to learn. Ask a parent of a child with Level 2 ASD, such as myself, about the huge challenges and costs involved. Ask a diagnosing paediatrician how seriously they take the term ‘requiring substantial support’.
But also ask whether people with ASD have the potential to contribute to our society. They deserve NDIS support and they deserve that chance.