Spotlight: Improving health care for people with Down syndrome in Australia
September 4, 2024
In our ongoing commitment to supporting an informed community, this article highlights some of the key healthcare and research initiatives that are making a significant impact on the lives of people with Down syndrome and intellectual disabilities.
These initiatives are not only paving the way for better health and medical care but are also promoting inclusive research practices that ensure the voices of those with lived experiences are heard and valued.
We have also included some links to DSA resources and information on health care that have been developed in collaboration with our State and Territory member organisations that you might like to explore.
National Roadmap for Improving the Health of People with Intellectual Disability and the Centre of Excellence in Intellectual Disability Health
At the forefront of this effort is the National Roadmap for Improving the Health of People with Intellectual Disability. This roadmap outlines a comprehensive plan to address the systemic health inequities faced by people with intellectual disabilities. Down Syndrome Australia is actively involved in the implementation of this roadmap, ensuring that the voices and needs of the Down syndrome community are represented. You can read more about the Roadmap here:
One of the key initiatives of the National Roadmap is the National Centre of Excellence in Intellectual Disability Health (The Centre). This hub of innovation and expertise is dedicated to advancing research and medical practices to improve the health outcomes of individuals with intellectual disabilities. The Centre’s strength lies in its collaborative approach, bringing together experts from various fields to tackle complex health challenges. Many people with an intellectual disability, including people with Down syndrome, have a range of health conditions that impact their lives. The Centre considers these intersecting health factors to support people who have co-occurring conditions.
Funded by the Department of Health and led by globally recognised leaders, The Centre actively includes individuals with intellectual disabilities in its initiatives. Down Syndrome Australia (DSA), a founding member of the consortium, plays a vital role in this effort, particularly in promoting the inclusion of people with Down syndrome in co-designed projects.
National Research Initiatives
Across Australia, several research initiatives are dedicated to enhancing healthcare for individuals with Down syndrome. Institutions like the Telethon Kids Institute and the University of Queensland Down Syndrome Research Group are at the forefront, conducting groundbreaking research that addresses key health concerns. Other notable programs include the Mater Intellectual Disability and Autism Service (MIDAS) and specialised sleep studies conducted by the University of Queensland. These efforts are crucial in developing tailored healthcare strategies that meet the unique needs of the Down syndrome community.
Ongoing Health Programs
Supporting the health of individuals with Down syndrome requires consistent and specialised care. One of the key tools in this effort is the Comprehensive Health Assessment Process (CHAP), designed for annual GP health assessments. This tool includes targeted questions to identify and manage health conditions commonly associated with Down syndrome, ensuring that individuals receive comprehensive and proactive care.
Down Syndrome Australia’s Health Ambassador program also makes strides in educating healthcare professionals about the importance of inclusive communication. This program, along with the support from State and Territory Down syndrome organisations, is crucial for building capacity and fostering professional development in healthcare practices related to Down syndrome.
Other significant projects include those of NSW Council for Intellectual Disability and the University of NSW 3DN
Multidisciplinary Care and Data Initiatives
Multidisciplinary medical clinics, available in several states and territories, provide essential care models that bring together various healthcare professionals to address the complex needs of individuals with Down syndrome. While there is always room for improvement in accessibility, these clinics represent a significant step forward in integrated care.
Data is also playing a pivotal role in understanding and addressing the needs of the Down syndrome community. The National Disability Insurance Scheme (NDIS) provides de-identified data that is used to inform policy and practice. Additionally, the Australian Government’s National Disability Data Asset aims to fill existing data gaps, offering a more comprehensive understanding of the challenges faced by people with disabilities.
Resources:
At the national body for Down syndrome in Australia, DSA also leads several projects in collaboration with our State and Territory members, that provide information, and build skills and knowledge for people with Down syndrome and their families.
You might like to check out these resources:
Resource Hub
The Resource Hub is regularly updated with new information.
You can read about the latest on Down Syndrome Regression Disorder.
The Resource Hub also contains a wide range of topics, including information on health such as:
- Easy Read on Coeliac Disease. This was developed by Down Syndrome Australia’s Health Ambassadors.
- Information on Prenatal – Down Syndrome Australia
- And information for medical professionals, such as Down Syndrome: The Essentials (unimelb.edu.au)
Down Syndrome Australia’s Health Apps:
DSA also has two apps: The Good Health App and Health Record App.
These are available to Download free on the Apple Store. Keep an eye out as the apps will soon be available in the Google Playstore!
Voice
The Voice journal comes out twice a year and explores a range of topics. A recent Voice issue on Ageing Well has lots of useful information and shares stories on ageing well:
Online self-paced courses and videos:
DSA’s Pathways to Independence project has released a range of self-paced courses for people with Down syndrome, including one on staying healthy:
You can also check out the video on staying health on the Down Syndrome Australia YouTube channel:
Want to know more?
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