Negotiating the Labyrinth – One Family’s Journey to the NDIS
Image description: Young child looking through magnifying glass.
Written on behalf of MotHs by MotHs Treasurer, Dr Leslie Almberg: Neurodivergent mum
‘Disability’ is a loaded word…
For some, it smacks of slight, an othering, being designated as ‘less than’. For some, it’s a welcome relief allowing too-heavy burdens to finally be set down after being carried too long. Whatever feelings the label evokes, receiving financial assistance for necessary supports is a boon, but the route is poorly sign posted.
When our family ventured into multiple neurodivergent diagnoses, we had no clue where to find the labyrinth’s entrance, let alone what twists and turns to take or what lay on the far side. We didn’t have a playbook or know the lingo, so were easily swamped by lengthy lectures on the merits of self-managing versus plan management by well meaning acquaintances further along their journey. There were many false starts and more than a few tears.
We’ve learned a lot in the process of getting my daughter onto the National Disability Insurance Scheme. I share a few brief points to highlight inherent challenges, recognising everyone’s experience is different.
The diagnosis process for ‘invisible disabilities’ such as Autism Spectrum Disorder (ASD) and Attention Deficit (Hyperactivity) Disorder (AD/HD) is not straightforward, and those requiring fewer supports or with less common presentations easily slip through the cracks. Girls, in particular, are less likely to be correctly diagnosed due prevailing perceptions that these are male-specific conditions. From finding a sympathetic GP to linking into allied health professionals, the cost of diagnosis is prohibitive for many families who most dearly need the support.
Upon running the diagnosis gauntlet, there is the daunting task of actually applying for funding. Doing so requires high levels of literacy, organisation, and executive functioning, plus strong telephone communication skills and ample time. These are areas in which parents of ND children frequently face their own deficits. While support workers are available to help, simply finding them can take a bit of wizardry or dumb luck.
Furthermore, therapists in our area are grossly oversubscribed, with some waitlists upwards of a year. Finding someone with availability is no guarantee of fit and searching for a workable connection can feel like an exercise in madness in the midst of the additional-needs-child maelstrom. Sometimes, it all feels like too much. My advice to anyone beginning the process is to find others who have made it through to support and mentor you on your journey.
Image description: A road with painted yellow image of an older male holding a young female’s hand and an older female holding a baby.
There are, however, things that could smooth the path for families. Firstly, requiring maternal and child health nurses to have additional training in recognising the early indications of neurodiversity in children consistent with the current diagnostic criteria that they may advise primary carers what to discuss with their GPs. The persistent misconception that all children with ASD behave/communicate in the same way results in poor support for families where the presentation deviates from the model.
Secondly, providing clear resources in multiple formats (informational videos, visual guides, etc.) for new parents concerned about their children’s development explaining the diagnosis process, estimated costs, and sources of support. The reliance on jargon-heavy, text-only websites to provide various incongruent pieces of vital information fails to recognise that the primary carers of neurodiverse children are statistically more likely to have their own communication challenges requiring better accessibility.
Thirdly, there needs to be greater support through medicare for screening appointments with the host of health professionals required for a diagnosis. Out-of-pocket costs can quickly spiral into thousands of dollars before a diagnosis is reached. Providing incentives for metro-based practitioners to have day clinics in the area would reduce some of the burden on these families, who often must spend hours a day travelling to appointments with children who require routines and familiar surroundings more than others to function.
Finally, recognising ADHD as a condition requiring support under the NDIS would improve the lives, education and ultimate outcomes for many children and their families.
Image description: A silhouette of a child reading a book.