IDEA (Intellectual Disability Exploring Answers) Database

This is the first published paper from the multi-disciplinary team working on the NHMRC Synergy grant funded ‘WAACHS Linked Data Study’. The original WAACHS study included a large population- representative sample of 5289 Aboriginal children living in Western Australia in 2000. Linkage of these data with government administrative datasets as well as the IDEA database, enables description of child health outcomes for the WAACHS children with and without disability from birth into adulthood along with other outcomes including child protection and juvenile justice involvement. The paper provides a baseline and starting point for focussed analysis on many sub-topic areas including disability.

Using information from the IDEA database, current estimates of the prevalence of intellectual disability in WA were just over 2% and for autism a similar 2%. This showed a sharp increase in prevalence of autism since the introduction of the National Disability Insurance Scheme which provides individualized funding for eligible people with a significant and permanent disability.

Congenital heart defects are the most common type of birth defect with a prevalence of 8-12 per 1000 livebirths in WA. Whilst significant improvements in survival have been achieved, there is growing evidence that deficits in neurodevelopmental and intellectual outcomes are common in a large proportion of children with congenital heart defects. Through linkage to the IDEA database the risk of intellectual disability in children with congenital heart defects was able to be estimated.

Craniofacial anomalies are a heterogeneous group of structural birth defects resulting either from disturbances in craniofacial development or as a secondary feature to other congenital conditions. Accurate knowledge of the relationship between craniofacial anomalies and intellectual disability and autism spectrum disorder is essential to improve services and outcomes. The aim of this paper was to describe the association between craniofacial anomalies, intellectual disability and autism spectrum disorder using linked population data.

We investigated the involvement of child protection with children of mothers with intellectual disability. We found that for non-Aboriginal children, the risks of child protection involvement and placement for those born to mothers with ID were 7 times and 12 times higher than those of mothers without ID. The risk was lower for Aboriginal children, at 1.8 and 1.9 times, respectively.

Little is known about why some children with intellectual disability or autism are being hospitalised for their dental care and others are not. Children with an intellectual disability or autism born 1983-2004 and aged up to 18 years were identified through linkage to the IDEA database. All hospital admissions for relevant dental diagnoses and factors associated with having a dental hospitalisation were investigated.

This study identified mothers with an intellectual disability through linkage of the IDEA database and the Midwives Notification System. The study aimed to investigate the sociodemographic characteristics, the perinatal and child health outcomes compared to a comparison cohort.

This study investigated child outcomes for mothers with an alcohol-related diagnosis. The likelihood of any negative outcome was about two and a half times that of mothers without a diagnosis. The odds were about 5 times for mothers who received an alcohol-related diagnosis during pregnancy.

This study aimed to describe the long-term neurodevelopmental and cognitive outcomes for children born preterm. We estimated the probability of disability-free survival up to age 25 years by gestational age.