Jenny Bourke
Research Officer
BE MPH
jenny.bourke@thekids.org.au
Jenny has worked at the Institute in the field of intellectual disability and autism since 2002 and has been instrumental in establishing the IDEA Database. IDEA is a de-identified comprehensive database on children identified with intellectual disability or autism in WA. She has managed and coordinated the updating of the database over this time.
Jenny has been involved in many different studies investigating the determinants of intellectual disability and the outcomes for these children. She has authored a number of papers on the prevalence of intellectual disability in WA and provided data used as a basis of prevalence estimates for the AIHW Burden of Disease study.
In 2020, Jenny coordinated the addition into IDEA of information from the National Disability Insurance Agency to include individuals in WA who were receiving services through the NDIS for intellectual disability or autism. This has strengthened IDEA as a truly WA population-based database which provides the infrastructure for linked data projects in this often-neglected area of research.
Jenny has authored/co-authored over 60 papers related to her work.
Jenny received her Master of Public Health at UWA.
Projects
IDEA (Intellectual Disability Exploring Answers) Database
The IDEA database has information on all children born in Western Australia since 1983 who have been identified with an intellectual disability. IDEA is one of the only population-based resources in the world dedicated to intellectual disability. 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. From IDEA, it has been found that one in 50 children in Australia are diagnosed with intellectual disability. Additionally, individuals with autism spectrum disorder, both with and without intellectual disability, are also identified in the database and we have found a similar number of one in 50 are diagnosed with autism. IDEA can be linked by Data Services WA with other datasets, to facilitate research into the determinants, outcomes and service needs of children and adults with intellectual disability.
Published research
Intellectual disability and autism prevalence in Western Australia: impact of the NDIS
Estimates of the prevalence of intellectual disability or autism spectrum disorder may vary depending on the methodology, geographical location, and sources of ascertainment. The National Disability Insurance Scheme in Australia was introduced progressively from 2016 to provide individualized funding for eligible people with a significant and permanent disability.
Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience
Siblings of children with intellectual disability have unique family experiences, varying by type of disability.
Education and Qualifications
- BE (UWA)
- MPH (UWA)
Active Collaborations
- National Disability Insurance Agency, Department of Communities, WA Department of Education