The Intellectual Disability Health Data Portal allows you to view a regional profile of the demographics, health profile, health service use, and associated costs for people with intellectual disability in your area.
This information can assist you in preparing your service(s) and workforce to meet the health needs of people with intellectual disability in your district/network.
Why is this important?
Extensive peer reviewed research consistently demonstrates stark health inequalities for people with intellectual disability. This includes high rates of co-morbidity, early onset of frailty, high rates of potentially avoidable admissions, and premature death, often from potentially avoidable causes.
These inequalities featured prominently in the recent Health hearings of the Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability.
Routine data collected on health and health service usage patterns does not reliably identify people with intellectual disability, making it difficult for health service to understand and respond to the healthcare needs of this group.
This Portal uses innovative data linkage across multiple service systems to identify people with intellectual disability and provide you with health-related data on people with intellectual disability who live and access services in your LHD/SHN.
How do I use the Portal?
On the 'My LHD/SHN' page you will find a summary of some of the key health information about people with intellectual disability who access your LHD/SHN.
On the 'Reports' page you will be able to generate unique reports on the demographics, health profile, and health service usage of people with intellectual disability in your LHD/SHN.
These reports will allow you to compare the profile and patterns of health service usage of people with intellectual disability in your LHD/SHN to:
- people with intellectual disability across NSW,
- people with intellectual disability in similar metro/regional/rural areas, and
- where possible to the general population.
The Portal also contains resources to help you to build the capacity of your LHD/SHN to meet the health needs of people with intellectual disability.
Who can I contact for more information?
Please contact the Intellectual Disability Health Data Portal at IDhealthdataportal@unsw.edu.au
Acknowledgements
The Portal was developed with funding from NSW Ministry of Health.
We acknowledge the work of the project team involved in developing the Portal: Professor Julian Trollor, Dr Janelle Weise, Dr Preeyaporn Srasuebkul, Mr Lloyd Flack, and Dr Tony Florio.
We would also like to thank the work of UNSW IT for the development of the Portal.
The artwork is by Shai de Vletter-Sont, Blue Poodle and Spine. © Image copyright is owned by Shai de Vletter-Sont.
Data presented in the report is part of a project supported by the National Health and Medical Research Council Australia Partnerships for Better Health grant [ID: APP1056128; Title: Improving the Mental Health Outcomes of people with an Intellectual Disability].
We acknowledge all investigators and partner organisations who contributed to the project:
Chief investigators: Julian Trollor, Eric Emerson, Rhoshel Lenroot, Karen Fisher, Kimberlie Dean, Leanne Dowse
Associate Investigators: Eileen Baldry, Tony Florio, Grant Sara, Phillip Snoyman, Les White,
Project Staff and Students: Preeyaporn Srasuebkul, Erin Whittle, Simone Reppermund, Snow Lee, Bronwyn Newman, Theresa Heintze
Partner Organisations: Agency for Clinical Innovation – Intellectual Disability Network, NSW Department of Family & Community Services - Ageing, Disability and Home Care, NSW Department of Education, NSW Department of Justice - Corrective Services NSW, NSW Ministry of Health – Justice Health & Forensic Mental Health Network, Mental Health Commission of NSW, NSW Ministry of Health – Mental Health & Drug & Alcohol Office, NSW Ministry of Health - InforMH, Mental Health Review Tribunal, Council for Intellectual Disability, Inclusion Australia, National Disability Services, NSW Office of the Public Guardian, NSW Ombudsman