NHMRC Partnership Project: Preventive healthcare for People with Intellectual Disability

Current project

Take part in our Health Information Study

We want to make it easier for people with intellectual disability to find and use information about staying healthy.

We would like to learn from people with an intellectual disability about their experiences getting, understanding, and using information about staying healthy. 

Your experiences will be used to help us improve healthcare for people with intellectual disability. 

Can I participate?

You can take part in this study if you:

  • Are 14 years of age or older.
  • Live in Australia.
  • Have an intellectual disability.
What will I do?

Taking part involves talking to a member of our research team in a one-on-one interview or a focus group. 

A focus group is when a group of people come together to share their experiences. 

You can choose if you prefer an interview or a focus group.

You can participate online or in-person at the UNSW Sydney campus. 

You can participate on your own or with a support person. 

How can I participate?

If you want to participate, please contact Maryann Barrington.

Email: maryann.barrington@unsw.edu.au

Phone: 02 9065 4445
 

About this project

Our Partnership Team is conducting a co-designed research project that aims to improve access to, and quality of preventive health care across the lifespan for people with intellectual disability.  

We are using a multipronged, mixed methods approach to identify the gaps in policy and practice across key areas of preventive health including for example: 

  • Tobacco use 
  • Alcohol and drug use 
  • Healthy diet  
  • Physical activity  
  • Cancer screening  
  • Immunisation 
  • Promoting and protecting mental health  

 

We will then use our findings to design and test a new model of preventative healthcare for people with intellectual disability. The diversity and skills of our partnership team will assist us to achieve all elements of the project. 

Background

Australians with intellectual disability represent a significant minority group who have very poor health status compared to the general population, and who experience poor engagement in preventive health care. The failure of current systems and services to address the specific health needs of people with intellectual disability is apparent to governments, policymakers, 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 NHMRC Partnership Project was awarded to Professor Trollor and a team of Co-Investigators and Partner Organisations which commenced in February 2022 and will run for five years to 2027.

Aims

In collaborating with relevant leads in government agencies, health service provision, public health, policy, disability services, and advocacy, our Project seeks to fulfill four main aims to: 

  1. map how preventative health care needs of people with intellectual disability are represented in Commonwealth, State/Territory, and International policies. 
  2. determine the reach and accessibility of preventive health strategies for people with intellectual disability. 
  3. determine the impact current participation in preventative health strategies have on health service usage and health outcomes for people with intellectual disability. 
  4. determine the feasibility of implementing change to enable people with intellectual disability to access and participate in preventative health care.

Project Information

What is preventive health care

  • Plain English summary of What is preventive health care (pdf) (word)

What is preventive health care: A 4-part Easy Read series

  • What is preventive health care (pdf) (word)
  • Preventive health checks (pdf) (word)
  • Types of preventive healthcare to stay healthy (pdf) (word)
  • Preventive health care to get better faster or not get worse (pdf) (word)

Partner organisations

The Department of Health, Queensland Health, Central and Eastern Sydney Primary Health Network, Western Victoria Primary Health Network, Australian Prevention Partnership Centre, Achieve Australia, Aruma, The Northcott Society, Inclusion Australia, The New South Wales Council for Intellectual Disability, Down Syndrome Australia, The Agency for Clinical Innovation, NDIS Quality and Safeguards Commission, The Australian Commission on Safety and Quality in Health Care, National Disability Services, Ageing and Disability Commission, Cancer Council of NSW, Cancer Institute NSW.

Staff

Investigators: Prof Julian Trollor. Prof Mark Harris, Prof Anne Kavanagh, Prof Karen Fisher, Dr Janet Long,  Dr Simone Reppermund, Dr Ben Harris-Roxas, Dr Catherine Spooner, Prof Anurag Sharma, Dr Chris Hatton, Dr Preeyaporn Srasuebkul, Paul Crosland, Jaithri Ananthapavan, Dr Jane Tracy, Prof Jenny Bowman, Prof Nick Lennox.

Project members: Tahli Hind, Susan AdrianMaryann BarringtonMichaela Kobor

Project Coordinator: Dr Janelle Weise  

For further information about the project, please contact Dr Janelle Weise. To contact Janelle, please email j.weise@unsw.edu.au.  

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