National Health & Medical Research Council Partnerships for Better Health Project, Improving Mental Health Outcomes for People with an Intellectual Disability

Past project
National Health & Medical Research Council Partnerships

Our Partnership Team conducted a research project with the aim to improve access to, and quality of mental health services for people with intellectual disability. Using a linked NSW Ministry of Health and Ageing, Disability & Home Care dataset, we integrated the data from our Partners to develop a comprehensive profile of mental ill health and service use in people with intellectual disability. Interrogation of these data identified the linkages and gaps between service sectors (mental health, disability, justice and education) and the benefit of cross-sector work including the impact of various initiatives in NSW in the area of intellectual disability and co-occurring mental ill health. We complemented our data driven approach with comprehensive analysis of policy relevant to intellectual disability mental health, to address key gaps in policy and policy development in this area. In addition, qualitative research with focus groups identified ways to improve the recognition of mental disorders among clinical, disability and education service staff. We worked with people with intellectual disability to identify and deliver means of improving access to mental health services and supports for people with intellectual disability. The findings developed an evidence base to guide the development of clinical services and policy for people with intellectual disability to meet their fundamental right to quality mental health support.



Australians with an intellectual disability represent a significant minority group who have very poor mental health status compared to the general population, and who experience exceedingly poor access to mental health services and supports. The failure of current systems and services to address the specific mental health needs of people with intellectual disability is apparent to governments, policy makers, clinicians, researchers and consumers and their support persons, and has provided a unifying platform for this Partnerships Project. The current situation is at odds with Australia’s obligations under the United Nations Convention of the Rights of Persons with a Disability (CRPD, ratified by Australia in 2008).

This National Health and Medical Research Council (NHMRC) Partnerships for Better Health Project grant to the value of $2.4M was awarded to Professor Trollor and his Team of Co-Investigators and Partner Organisations in 2013 and commenced in September 2014. It consists of cash and in-kind support provided by Partners and a co-contribution from the NHMRC which is based on the strength of the Partnership and integrity of the research strategy. The Project will run for four years to 2018 and promises some exciting developments in our understanding of mental illness in this marginalised population. It will significantly enhance the body of evidence on the access to, and uptake of, mental health services for people with intellectual disability who experience significant disadvantage in our current service system. The project also provides exciting career and PhD opportunities for those interested in this area.



In collaborating with key mental health, disability, education, justice and consumer agencies, our Project seeks to fulfil three main aims:

  1. To create an annualised linkage of administrative minimum datasets of our Partners to enable a detailed examination of mental health profiles and service utilisation, patterns of cross-sector service provision including specific gaps, the impact of recent service initiatives for people with intellectual disability, and to enable comprehensive development of intellectual disability mental health services in NSW.
  2. To analyse Commonwealth and State mental health policy to determine the current representation of people with intellectual disability and to establish strategies which will enhance intellectual disability mental health policy.
  3. To engage with stakeholders including consumers and support persons (including family and non-family carers), to inform improved recognition of mental ill health, accessibility of mental health services and mental health policy for people with intellectual disability across the lifespan and;
  4. Progressing to maturity a partnership which develops and applies an evidence based approach to intellectual disability mental health service development, policy and reform across the lifespan for people with intellectual disability.

We are very excited to be recipients of this grant and are enthusiastic to get the project under way.



Policy analysis: Summary for Policy Makers

Policy analysis: Summary for Service Providers

Policy analysis: Plain English Summary

Cohort profile: a data linkage cohort to examine health service profiles of people with intellectual disability in New South Wales, Australia

Making Mental Health Policy Inclusive of People with Intellectual Disability

Barriers and Enablers to Accessing Mental Health Services for People With Intellectual Disability: A Scoping Review

Current Representation of People With Intellectual Disability in Australian Mental Health Policy: The Need for Inclusive Policy Development

Representation of people with intellectual disability in Australian mental health policy





Staff and Partner Organisations

Project Members: Dr Preeyaporn Srasuebkul (senior data analyst), Erin Whittle (project officer), Dr Simone Reppermund (senior research fellow), Dr Tess Heintze (data analyst), Ms Snow LiMs Bronwyn Newman

Chief Investigators: Professor Julian Trollor, Professor Eric Emerson (University of Sydney), Professor Rhoshel LenrootAssociate Professor Leanne DowseProfessor Karen FisherAssociate Professor Kimberlie Dean

Associate Investigators: Professor Eileen Baldry, Professor Les White (NSW Ministry of Health), Dr Grant Sara (NSW Ministry of  Health), Dr Tony Florio, Dr Phillip Snoyman (Corrective Services NSW)

Partners: Mental Health & Drug & Alcohol Office - NSW Ministry of Health, Ageing, Disability & Home Care - NSW Department of Family & Community Services, Justice & Forensic Mental Health Network – NSW Ministry of Health, Agency for Clinical Innovation – Intellectual Disability Network, Mental Health Review Tribunal, NSW Ombudsman, Office of the Public Guardian, National Disability Services, NSW & National Council for Intellectual Disability, NSW Department of Education & Communities, Mental Health Commission of NSW

Project Coordinator: Dr Simone Reppermund

Further Information

For further information about the project, please contact either Dr Simone Reppermund, ph +61 (2) 9385 2578 or Professor Julian Trollor, ph +61 (2) 9065 8076.


3DN 2019 Federal Election Intellectual Disability Health Proposal.pdf

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