Autism in the Eyes of the NDIS
It is about time the NDIA (National Disability Insurance Agency) took a deeper look at Autism and the ways that families can be better supported, listened to and understood. This latest bit of news is encouraging for all individuals and families living with Autism Spectrum Disorder!
Having a child with autism brings challenges that can’t be seen, understood or properly supported for so many families. It is one of the diagnoses we at RippleAbility like to refer to as an “invisible disability”. We hear so frequently that families struggle to break down the barriers and stigmas that come along with caring for a child with unique abilities - that sit outside what is considered ‘normal’ and that can’t be seen with the naked eye.
Autism Spectrum Disorder (ASD) characteristically brings challenges, of a wide variety, to a person’s ability to communicate effectively and socialise in a meaningful and easily interpreted way. One in every 100 people is diagnosed on the spectrum. It is a very important disability that has been, to date, under-serviced and ‘boxed-in’ by the NDIA.
Until recently the NDIA was exploring the option to put in place indicative funding bands on the capacity building budget for NDIS participants living with autism. This would have meant that all people accessing the NDIS, with an autism diagnosis, would have had a capped funding amount pre-determined by the NDIA. This assumption would have been incredibly detrimental to so many individuals because it is ludicrous to assume that every person living on the spectrum has the same capacity support needs. It is a SPECTRUM for a reason: the variation of needs are immense and each individual should always be independently assessed, and likewise supported.
Thankfully the NDIA sought feedback on this proposed restriction to funding and the outcome has been positive for all families and individuals living with autism. The response to the NDIA for feedback was a fantastic example of how many people stand to benefit from a well thought out autism NDIS plan. In total, 448 people provided online submissions: 375 responses were from individuals, and 73 responses were from organisations.
The final decision is that:
“The NDIA will not progress with indicative funding bands for capacity building funding for children with autism at this time.”
They realised that there needs to be a greater understanding of autism and what is being done within the sector to ensure that best practice standards are being implemented; informed by strong evidence and the ongoing study of individuals living with ASD.
Families asked the NDIA to consider the following:
That every person with autism and their family is different
More support needed to be provided to assist individuals to learn social/behavioural and coping skills
A child needs to be considered as PART of their family, life events, and changes have to be taken into consideration when funding is allocated
Families living with multiple disabilities have complex situations that require a greater depth of support
Recognise that the NDIS is just one part of a larger support system
The language of the NDIA needs to be less clinical, deficit-based, culturally insensitive and more inclusive and written in plain English for all to understand.
There were also a lot of themes that trended through the feedback. We see this so often in RippleAbility, so many of our families express the same concerns- so you are not alone!
Everyone everywhere is struggling to attain an autism diagnosis
They feel isolated and would like to be able to connect with other families that have kids on the spectrum
Families expressed the need for information to be provided much earlier on; that is both accurate and impartial
A great number of people are unsure about what professional roles are and how they benefit their child- and there is a shortage of available help across the sector
These are not quick-fix issues, a lot of work needs to be done to combat these systemic problems. However, the fact that they’re being considered is heart-warming!
So what comes out of this study then, you ask. Well, the NDIA has promised the following three improvements:
They will update their Operational Guidelines to reflect the need to be more accommodating for ASD individuals and their families.
A concerted effort will be made to produce a variety of “would we fund it” examples, on commonly requested items and how the decision is made at the NDIA end on what is reasonable and necessary.
Improvements will be made to the Early Childhood Provider Report form so that it is more accessible and supportive of each individual needs and requests.
There are a few exciting things in the pipeline to assist families to understand how to navigate the NDIS with an ASD diagnosis. A guide on how to understand supports and interventions for children on the autism spectrum will be released sometime this year, allowing families to see demonstrated best practices based on researched evidence. There is also the promise of a digital resource that allows families to feel better supported to best use their NDIS plans.
It can be exhausting being part of the “invisible disabilities” club… having to constantly validate your actions, explain your reasoning and advocate till you're so thinly spread you feel as though you might snap if you breathe too deeply. Living with ASD is difficult - without the NDIA making it harder. This is positive news, fingers crossed it stays this way.
If you are struggling in your NDIS journey and need some practical advice on how the ensure your child with ASD is properly supported, or you just need someone to talk to, reach out to us today and we will do our very best to help you in your experience.
We at RippleAbility see you, and we hear you…and we are here for you. Always.
If you’d like to have a look at the report I am referring to, check out this link: https://www.ndis.gov.au/community/we-listened/interventions-children-autism-spectrum-consultation-summary-report
