Improving long-term health outcomes for people with intellectual disability

The Australian Government is investing more than $5 million in four research projects to improve the long-term health outcomes of people with intellectual disability.

The Hon Mark Butler MP
Minister for Health and Aged Care

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Audience:
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The Australian Government is investing more than $5 million in four research projects to improve the long-term health outcomes of people with intellectual disability.

Funded by the National Health and Medical Research Council (NHMRC), the research will develop the evidence base for future policies, interventions and other initiatives to improve the quality of life of people with an intellectual disability.

A key factor in each of the projects is the involvement of people with intellectual disability, their families and carers in the design of the research and implementation. 

The projects focus on:

  • supporting general practice nurses to do health assessments with their patients with intellectual disability
  • models of care to ensure appropriate, timely diagnoses and access to high-quality health and disability services for Indigenous children with intellectual disability
  • improving accessibility to genetic tests and genetic counselling for people with intellectual disability
  • access to primary care services to prevent hospitalisations.

The outcomes of the research will reduce the number of avoidable presentations to emergency departments and the number of preventable and prolonged hospitalisations.

Quotes attributable to Minister Butler:

“People with intellectual disability must have access to the care that meets their needs and supports them to lead healthy and active lives.”

“It’s so important that, along with their families and carers, they are involved in research that will find better ways to deliver that care.”

Quotes attributable to NHMRC CEO Professor Anne Kelso AO:

“This research will provide support for health professionals to help them deliver quality care for people with intellectual disability.

“NHMRC is proud to support research that will have a positive impact on people’s health and wellbeing.”

Title

Summary

Administering Institution

Chief Investigator

Budget

Bridge to Better Health: A Cluster Randomised Controlled Trial for Capacity Building in Intellectual Disability Health for General Practice

The research will improve preventive health outcomes for people with intellectual disability by supporting general practice nurses to do health assessments with their patients with intellectual disability. Additionally, it will provide access to a specialist intellectual disability nurse, training on conducting a health assessment, intellectual disability health training and access to online resources. This intervention is designed to be able to be rolled out nationwide and will be evaluated using a randomised trial.

The University of Queensland

Dr Catherine Franklin

 $1,497,939

Equitable access to health and disability services for Aboriginal and Torres Strait Islander children with intellectual disability

This project will improve the health and wellbeing of Indigenous children with intellectual disability by recommending effective models of care to ensure appropriate, timely diagnoses and access to high-quality health and disability services. National Disability Insurance Scheme data and interviews with families, adolescents with intellectual disability, and healthcare and disability services will be analysed to identify barriers and facilitators to meeting the healthcare needs of Indigenous children with intellectual disability.

University of Melbourne

Professor Sandra Eades

$792,020

GeneEQUAL: equitable and accessible genomic healthcare for people with intellectual disability

The GeneEQUAL team will talk with people with intellectual disability, their families and with their doctors about genetic tests and genetic counselling. The project will write guides and resources so that genomic healthcare includes everyone respectfully, helps people make healthcare choices and helps people understand about their health conditions.

University of New South Wales

Dr Elizabeth Palmer

$1,556,865

Reducing potentially preventable hospitalisations and building health literacy for children and adolescents with intellectual disability

Children with intellectual disability have high health care needs but access to primary care services can be hampered by difficulties they and their carers face day to day, leading to potentially preventable hospitalisations. The research will examine use of health services in hospital and primary care settings for these children, the enablers, and barriers to using primary care services, and how health service use can be optimised for better care and be available across the community.

University of Western Australia

Associate Professor Jenny Downs

$1,537,414

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