Intellectual Disability Data Linkage Projects

Past project

People with intellectual disability are a minority group who experience very poor mental health status, major barriers in access to mental health services and treatments, and an impoverished service system characterised by poor cross-sector coordination and poor preparedness of staff to meet mental health support needs.

An important first step in addressing such health inequities is to create capacity to interrogate epidemiological data and the Intellectual Disability Mental Health Data Linkage project aims to do this in NSW.

Over time we have coordinated the linkage of multiple datasets which have enabled us to build an epidemiological profile of the health and mental health of persons with intellectual disability. This has involved linking existing administrative datasets from the NSW State Government agencies of NSW Department of Family & Community Services - Ageing, Disability & Home Care (ADHC) and the NSW Ministry of Health. The project will also link with NSW Mortality data maintained by the NSW Register of Births, Death and Marriages (RBDM) and the Australian Bureau of Statistics (ABS). In recent times we have refreshed this linkage and linked to Commonwealth datasets of importance including MBS, PBS and other health datasets.

The analysis of linked health and disability service data has allowed us to develop our understanding of:

  • the health needs and service use of people with intellectual disability across the lifespan;
  • the correlates of mental illness and predictors of mental health outcomes;
  • the intersections that people with intellectual disability have with other sectors such as health, education and justice systems.