Children with cognitive disabilities missing in NDIS data

According to recent figures, about 250,000 children under the age of 15 participate in the National Disability Insurance Scheme (NDIS).

But a new scoping review out of the University of Adelaide has highlighted gaps in literature and research around the needs of children and adolescents.

Higher Degree by Research Candidate Mark Marveggio, School of Psychology, identified 29 studies covering the evaluation of NDIS eligible interventions with 1937 participants.

"Children and adolescents with cognitive disability represent 47 per cent of all NDIS participants," says Mark.

"The key principle of the NDIS is to provide capacity-building support to enable participants to enhance or maintain their functional capacity and carry out daily tasks.

"The aim of this review was to identify intervention research conducted within the context of the NDIS, and the gaps that are missing to enhance the NDIS and ensure best practice in the sector."

The findings were published in the Journal of Applied Research in Intellectual Disabilities.

"Almost 55 per cent of studies looked at intervention feasibility and acceptability," says Mark.

"Targeted interventions primarily focused on the need to foster independence in a child's personal activities of daily living and promote community participation, with promising results.

"Child and parent experiences of accessing NDIS-funded services and supports were also highlighted, including the ability to customise support plans to a child's needs but also the complex navigation of the system, which limited parents' choice and control in selecting disability services and providers needed for their child."

More than 60 per cent of the studies focused on daily living, which Mark said was not surprising.

"Daily living captures a broad range of fundamental skills required to independently care for oneself, but also represents the funding category in which most allied health therapies like physiotherapy, occupational therapy and speech pathology are listed within the NDIS," he said.

"Children with cognitive disabilities are also most likely to experience pronounced difficulties in the development of everyday functional, developmental, and coping skills at this stage of their life, hence the need for daily living support."

Community participation was the second greatest focus, but the review found NDIS funding appeared to have a smaller impact in this space compared to the influence of parental time.

"The studies we reviewed were a mix of quantitative and qualitative, which was valued because qualitative research offers insight into the experiences of individuals accessing supports as well as context that influences how an intervention works, or why," says Mark.

From the review, Mark found access, implementation, and experiences of the NDIS, as well as research into interventions for older adolescents and their families was a clear research gap.

"The findings also show parents with higher education levels, were better resourced, or had more established social and community connections and supports were more likely to feature in these studies.

"This highlights a need to ensure all participants have equal access to support."