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IDEA (Intellectual Disability Exploring Answers) Database

IDEA is one of the few population-based resources in the world dedicated to intellectual disability. The IDEA database contains information on all children born in Western Australia since 1983 who have been identified with having an intellectual disability. Individuals with autism spectrum disorder, both with and without intellectual disability, are also included in the database. Deidentified information is accessed from the Department of Communities WA, the WA Department of Education, and the National Disability Insurance Agency (NDIA) to create the database. IDEA can be linked to other datasets to facilitate research into the determinants, outcomes and service needs of children and adults with intellectual disability. Researchers can apply for such linked data, available in a de-identified format under approval from an ethics committee.

Investigators

Helen Leonard, Jenny Bourke, Emma Glasson

Project description

The IDEA database is a population-based resource containing data on children born in Western Australia since 1983 who have been identified with an intellectual disability. IDEA data show approximately 2% of children (1 in 50) are diagnosed with an intellectual disability. Individuals with autism spectrum disorder, both with and without intellectual disability, are also included in the database and we have found a similar prevalence of one in 50 individuals diagnosed with autism. IDEA has supported a wide range of studies relating to risk factors for intellectual disability and outcomes for affected children and their families. Recent studies have investigated later neurodevelopmental outcomes for children with congenital heart defects and the impact of intimate partner violence on children’s outcomes. Previous research found that the earlier in pregnancy a child is born, the greater the risk of major disability or death, but that the risk is also influenced by other factors such as their Apgar score at birth, birthweight, sex and socioeconomic status. The longevity of IDEA now allows intergenerational perspectives. For example, one study found mothers with an intellectual disability were more likely to have pre-existing medical conditions and their infants more likely to be born preterm, indicating these mothers may need additional support in the antenatal and postnatal periods.

External partners

  • Department of Communities (formerly Disability Services Commission)
  • Department of Education WA
  • National Disability Insurance Agency
  • Stan Perron Charitable Foundation

Our Publications

Intellectual disability and autism prevalence in Western Australia: impact of the NDIS

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.

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Child protection involvement of children of mothers with intellectual disability

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.

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Maternal Alcohol-Use Disorder and Child Outcomes

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.

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