To the inquiry into the Thriving Kids Initiative,
Thank you for the opportunity to provide feedback. I am the mother of an autistic child (diagnosed as Level 2) and a speech pathologist who primarily works in early intervention with children with developmental disabilities in Western Australia, and therefore I will be both personally and professionally impacted by the changes associated with the Thriving Kids Initiative.
I feel that Thriving Kids has the potential to support children who were not recognised as requiring support under NDIS, which is positive. There are children with neurodevelopmental conditions, such as Developmental Language Disorder (DLD) and ADHD, who currently often miss out on NDIS funding despite their diagnoses being associated with significant lifelong functional impacts, and who have the potential to benefit from Thriving Kids if it is implemented well. Every day at work, I see children and their families who desperately require support but are unable to access it through any of the currently available channels without significant financial impact, simply because they do not have the ‘right’ diagnosis (i.e. one that is recognised as a permanent disability), or because there are not enough providers who are trained to deliver these services. This means that, for many families, appropriate assessment and therapy is not viable, and this has a compounding impact as the child grows, impacting their mental health, self-esteem, emotional wellbeing, learning, employment and independence. It is essential that the government invests in funding for these families, which should include investment in university training programs for allied health professionals, as well as paying these professionals adequately to ensure that a career in allied health is sustainable. These investments will ensure that there are more suitably qualified professionals available to support families in need.
I have concerns that Thriving Kids may fail to reliably differentiate between the vast spectrum of strengths and challenges that are encapsulated under the umbrella of ‘mild and moderate developmental differences’. Every family that enters my clinic has a different story, and although there can be common threads that result in a shared diagnosis, these children all have vastly different support needs. For example, I can see a child with ‘mild’ or ‘moderate’ autism (assuming this refers to Level 1 and Level 2 autism) who can communicate verbally but is still not toilet-trained at 9 years of age and who relies on nutritional supplements due to a significantly restricted diet, while another child has an associated language impairment that impacts their ability to get their basic wants and needs met outside of the home environment, or becomes ‘catatonic’ (i.e. unable to move or talk) due to the sensory overwhelm associated with daily routines, such as showering or having their hair cut. As a personal example, my own son is cognitively gifted and, to a casual observer, seems highly verbal and very bright, but he currently eats less than 8 foods, is not toilet trained, cannot easily have a back-and-forth conversation with others, and earlier this year, was unable to leave the
house for several months due to an inability to cope with the sensory overwhelm of winter weather (i.e. clouds, wind and rain). Support needs vary between children, but a child’s capacity also fluctuates, which means that their support needs can look significantly different across time. My son was diagnosed with autism at 2.5 years of age and has benefited immensely from the early intervention supports he has received under NDIS. The NDIS has allowed families like mine to access individualised support from experienced professionals to positively support a person’s functioning at home and in the community. Despite this, my son is an individual with a lifelong neurodevelopmental disability that cannot be ‘cured’. He is autistic – it is who he is - and although he has some incredible strengths, he also has a disability that presents ongoing challenges in a world that is not designed for brains like his. My son’s support needs have increased over time, particularly since commencing school, and I am concerned that the new Thriving Kids Initiative will fail to provide the ongoing support that he will require in some capacity across his lifetime.
I am also concerned that Thriving Kids may rely too heavily on prescriptive programs that fail to provide the highly individualised and responsive support that children with developmental differences really require. My son has benefited from therapy that can be adapted and differentiated to support his functioning, in a way that is meaningful for him and for our family, over time and across environments.
I am therefore asking Thriving Kids to:
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Clearly define what is meant by ‘mild’ and ‘moderate’ developmental differences as these terms appear to rely on diagnostic models that are constantly evolving and clearly impact who will be considered most appropriate for this initiative.
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Ensure that children and families have choice and control over their funding so that children can receive tailored support that responds to their changing needs.
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Ensure supports capture the wide range of functional impact, including communication, social and community participation, feeding, toileting, sensory processing, interoception, mental health, behaviour, emotional regulation, learning, and access to respite and family/carer supports.
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Invest in funding for service providers to ensure that they can manage community demand in a way that ensures vulnerable, at-risk families do not miss out on vital services.
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Invest in university training programs and employment of allied health professionals, including adequate pay, to ensure that the demand for these services can be more reliably met.
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Ensure that supports do not ‘disappear’ once children are 8 years of age, particularly given many of these developmental diagnoses are lifelong and therefore require support across the lifetime.