IDEA (Intellectual Disability Exploring Answers) Database
Dates of project
January 2002 - present
Customer
Department of Communities (formerly Disability Services Commission)
Key researcher/s involved
Associate Professor Helen Leonard, Jenny Bourke, Professor Carol Bower
Partner organisations
Department of Communities, Department of Education WA, National Disability Insurance Agency
Project description
Intellectual disability is a neglected area of public health, with often sparse and inaccurate estimates of prevalence. There are differing criteria for inclusion and, in many cases, the cause of the condition is unknown. Establishing reliable data, from multiple sources, is critical to ongoing population-based ascertainment of intellectual disability. This database provides an infrastructure that facilitates the planning of services for people with intellectual disability. It also provides a foundation for research with the ultimate aim of implementing preventive strategies.
Since 2002, the Child Disability team at The Kids Research Institute Australia have been engaged by the Department for Communities (formerly Disability Services Commission) to build on the existing Western Australian Intellectual Disability Database to improve data and thus maximise the ascertainment of intellectual disability in Western Australia. The IDEA database is a de-identified repository of data on all children born in Western Australia since 1983 who have been diagnosed with an intellectual disability. Up to the end of 2020 there were 25,184 eligible individuals with intellectual disability born in WA since 1983. Additionally, 5294 individuals diagnosed with autism without intellectual disability were identified.
Linkage to other databases provides the potential to access socio-demographic, perinatal and clinical information for the population with an intellectual disability, and for ascertainment to include children with intellectual disability identified through the education system. Additionally, in 2020 the database was able to increase the ascertainment sources to include individuals receiving services through the National Disability Insurance Scheme.
By improving the quality of data and how intellectual disability is ascertained in Western Australia, we are in a better position to investigate risk factors and neurodevelopmental outcomes among children with intellectual disability. This helps inform preventive strategies and planning of service provision to support people with intellectual disability and their families.
The IDEA database continues to be maintained at The Kids Research Institute Australia, to ensure ongoing population-based ascertainment of intellectual disability from providers of clinical and educational services and as a resource for data linkage studies with specific interest in children with intellectual disability or autism in their cohort.