Submission to Inquiry into Thriving Kids Initiative
Submitted by Helen Said, Melbourne
Please consider this submission to the Thriving Kids inquiry. I am a diagnosed Autistic and mother of adult Autistic offspring, one of whom has a formal Autism diagnosis and attended early intervention services (before NDIS came into being).
I am from a CALD (Culturally and Linguistically Diverse) background and have co-authored university research papers on the needs of CALD families with Autistic children (see links at the end of this submission). I advocate on matters relating to CALD Autistics within Autism organisations, as well as political policy formulation bodies. I am also a private tutor, a former school integration aide, former public transport disability services officer and former disability community support worker. It is important to note that the views expressed here are my own, based on my lived experience, and do not represent the views of any organisation.
I welcome the introduction of the Thriving Kids Initiative, on the proviso that no child with seemingly “mild” or “moderate” Autism be prevented from accessing NDIS funding for services which are critical to their health and development.
The last time an Autistic family member, with low support needs, was fitted for orthotics for flat feet, it cost us, as a single mother family, over $500. The orthotics are vital for preventing pain and tiredness and being able to participate in fitness activities or even regular shopping. On this occasion, we were able to be reimbursed through NDIS funds (after some assertive advocating), however I am concerned that working class families will once again be subject to prohibitive expenses if Autistics with low or moderate support needs are prevented from accessing NDIS.
As a CALD Autistic research subject, I have participated in a PhD student’s research project about Autistics with Development Co-ordination Disorder, (DCD, sometimes known as dyspraxia). This is a hereditary trait that affects me and some other family members, and is quite common amongst Autistics. During my research interview, I pointed out that DCD has wide ramifications for children who get left behind in obtaining basic fitness, as well as the recreational and social opportunities inherent in playing sport. I have discovered, through my lived experience, that the effect is magnified in CALD Autistic children with DCD. CALD families sometimes come from cultures which place less emphasis on sport, who may be less aware of how their children are being further marginalised within Australian society when they struggle to participate, or less able to help their children deal with this disadvantage.
Access to specialised help, such as exercise physiology and occupational therapy, is costly and could be prohibitive to newly arrived migrant families. I envisage that the Thriving Kids programs could be very helpful in improving overall strength and fitness, however children with motor planning disabilities or fine motor issues need more individual attention from qualified experts. It is hard to see how a general service, like Thriving Kids, could provide a sufficient level of ongoing individual attention and expertise. While wealthy families will be able to afford extra therapies, poorer families, which includes many CALD families, will get less, and their Autistic children will once again be consigned to lifelong disadvantage.
Research is uncovering more hidden disabilities, for example prosopagnosia (face blindness), and topographic agnosia (difficulty navigating and recognising landmarks). Autistics like myself, with high academic abilities, sometimes struggle with these seemingly easy tasks. These hidden disabilities seem more prevalent amongst Autistics. Further research may suggest psychological techniques to
help overcome these issues, or there may be a technological solution in the future. Without access to NDIS funding to access these services or technologies, many clever children with an otherwise bright future would be less able to become fully employed in occupations where they could one day give back to the Australian community.
Many Autistics with low or moderate support needs have mental health issues, because we live in a world that wasn’t designed for us. Despite numerous inquiries and much talk, access to affordable mental health support remains limited. It is doubtful that Thriving Kids could provide the same level of one-on-one confidential therapies that are currently available through NDIS.
While working as an integration aide, I came across CALD children who had a low level of difficulty in a number of areas, but did not have enough disadvantage in any one area to qualify for extra assistance. An example was a CALD child, who didn’t speak English at home but was born in Australia, so missed out on English as a Second Language support. The child had hearing difficulties, seemed quite socially isolated and was falling behind academically, but wasn’t disabled enough in any one area to pick up school integration funding either.
This is what happens when allocating extra assistance is reduced to a tick box exercise rather than a human needs framework. This is the danger that I see in making a blanket decision that Autistic children with low or moderate support needs be prevented from accessing the NDIS system. While I welcome a Thriving Kids service, it cannot meet all of the individualised support needs of the wide spectrum of Autistic children. NDIS funding should remain an option, for Autistic children with low or moderate support needs, to equitably meet individual issues and address hidden disability.
Chinese families Autism research:
https://www.sciencedirect.com/science/article/pii/S1750946723001277
South Asian families Autism research:
https://www.sciencedirect.com/science/article/pii/S1750946724000837
Early intervention
https://www.sciencedirect.com/science/article/pii/S3050656525001270