The rollout of the National Disability Insurance Scheme has transformed the Australian funding landscape for individuals with disability and their families. But it has also allowed waste, rorting and - if it's possible to believe - discrimination.
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This week's announcement of the new members of the National Disability Insurance Agency board this week, with Kurt Fearnley its first board chair with a disability together with a new chief executive Rebecca Falkingham will provide a fresh start for the agency. With now five members with a disability - it's clear that this is a board that intends to get things done.
The new leadership will, however, have its work cut out. Since its introduction, we have seen countless examples of this discrimination and failure in the NDIS.
One example, and there are many, has been the postcode effect whereby families living in areas of disadvantage (lower socioeconomic areas) have lower plan amounts compared to those from more affluent areas - a clear example of double disadvantage.
The brainchild of the Labor government, and some would argue one of prime minister Julia Gillard's greatest legacies, the NDIS will be 10 years old in mid-2023. Surely the time for teething problems are over?
We established the Victorian Autism Specific Early Learning and Care Centre at La Trobe University (also known as the Margot Prior Early Autism Centre) in 2010, prior to the NDIS.
It provides evidence-based supports for early learning and care for very young autistic children within both inclusive and specialised autism settings and children thrive equally in both settings enabling parents to have choice and control.
We also know that ready access to quality supports from early in life increases the likelihood of autistic children accessing mainstream education and needing fewer supports by school age.
We recently examined the cognitive and behavioural profiles of our young clients at intake into our service who were funded under the NDIS (individualised funding) and compared them to those children who had accessed the centre when it received (non-individualised) block government funding.
We wanted to determine the profiles of these autistic children were impacted by the different funding schemes and they were not.
However, when we compared the parents' parental mental health and quality of life under the two funding models we found that - while parental quality of life was similar - the parents of autistic children funded under the NDIS reported significantly higher levels of stress and depression at intake.
Having to secure funding for their child means wait times, uncertainty and sometimes even discrimination and rejection - often reported by families accessing our service following introduction of the NDIS. It is especially noteworthy that 55 per cent of children accessing funds from the NDIS are autistic.
When the centre was established over a decade ago, we were federally funded to provide services for 20 autistic children, with the majority attending the Centre full time. We now provide services for over 40 children, and they come to us three days a week.
The only way we can make inroads into our waiting list of between 180 and 200 children is to have more children attending our service, but for less time. And less time is also what is afforded by their NDIS plans!
It's no wonder then that parent's of autistic children are stressed to the point of desperation - ironic that it by a system designed to make their lives and those of their loved one easier.
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We are, however, hopeful for better outcomes for autistic people and their families following the bipartisan support for a national autism strategy. And at a state level, it is heartening to know that the South Australian government has committed to placing educators with expertise in autism into every school- much needed given every classroom in Australia has at least one autistic child.
Indeed, in Victoria, 3.2 per cent of school students are autistic. And thankfully, here, there is also bipartisan support for the Victorian autism state plan.
I have no doubt that, under Bill Shorten, there is huge willingness to improve the NDIS, to weed out its failings and to introduce new measures to ensure that individuals and families living with disability are better served.
Indeed, a new oversight committee has been announced to assist with the thousands of appeals over funding packages.
Moreover, it is clear that the lived experiences of families accessing the NDIS will inform its revision with clear commitment to co-development. Indeed, a national autism strategy, done right and co-designed by those with lived experience, may also impact the approach to autism by the NDIA.
Fix the way the NDIA approaches autistic individuals and their families and you might fix the system in total. And it may just work the way it was always planned to.
- Professor Cheryl Dissanayake is the founding director of the La Trobe University's Olga Tennison Autism Research Centre.