Intellectual Disability Mental Health (IDMH) Data Linkage Project

Current project

People with intellectual disability (ID) 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 IDMH Data Linkage project aims to do this in NSW. It seeks to build an epidemiological profile on the health and mental health of persons with ID by 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).

The analysis of linked health and disability service data will allow us to develop our understanding on:

  • the mental health profile of people with ID across the lifespan;
  • the correlates of mental disorders and predictors of mental health outcomes;
  • the intersections that people with ID have with the health sector;
  • whether or not the current health and disability service systems are meeting these needs;
  • identifying discernable patterns of service use with the view to improving those service pathways engaged;
  • the impact of any funding initiatives, policy developments or staff education/ training programs targeting this population group.

For historical reasons, mental health supports for this population lie in a ‘no-man’s land’, between disability and health services, and this reinforces ‘asiloing’ of expertise, fosters inter-agency disputes regarding service provision and limits the capacity for holistic mental health intervention. Furthermore, there is limited data that examines the prevalence and impact of mental disorders, the impact on support persons, and the direct cost to health services. This linked data will provide us with an evidence base that hitherto did not exist in NSW, from which we can advocate for improved services for this population.

A pilot of the project has been performed between Ambulatory Mental Health data and the Disability dataset in a small test area of Sydney, with some interesting results.

Watch this space for related publications.

Further Information

3DN Strategic Planning Day 2014

Presentation by Sophie Howlett