Welcome to the second edition of our newsletter! 📰
In this issue you’ll meet Amy, one of our clinical nurses and hear about our new Down syndrome clinic.
Hear about our celebration of World Down Syndrome Day.
We will tell you about the hard work the research team has put into grant applications and other projects.
We hosted a special international guest speaker, Professor Joaquin Espinosa from Linda Crnic Institute for Down Syndrome, University of Colorado.
We will also share important information about professional development and conferences.
Amy is a clinical nurse, who has been working at Queensland Centre of Excellence in Autism and Intellectual Disability Health (QCEAIDH) since last year. Originally from Scotland, Amy has a nursing degree in learning disability.
Nurse Amy likes going for walks along the river, reading by the pool and keeping fit.
Nurse Amy helps with the coordination of the clinic and supports patients on their journey through the clinic. She works closely with our medical and allied health staff to help people with Down syndrome have better health and has developed lots of resources for patients to monitor their health—things like bowel and fluid intake monitoring, activity schedules and sleep charts.
Nurse Amy hopes that all her patients will have optimal healthcare and support throughout their lives— just like everyone else.
New Down syndrome clinic opens
QCEAIDH recently launched Queensland’s first and only dedicated Down syndrome clinic for adolescents and adults at Mater in South Brisbane. The clinic happens every two weeks.
The clinic helps adolescents and adults with Down syndrome who have complex mental health and / or physical health issues. People are referred to the clinic when things are not improving with their ordinary care.
Down syndrome is the leading genetic cause of intellectual disability in Australia. Our doctors and health practitioners have found several healthcare needs that are specific to people with Down syndrome, including Down Syndrome Regression Disorder.
We hope that by having access to all our clinicians in one place at the same time, we can achieve positive health outcomes for our patients. This also lets us try out a new model of care in our clinic, and we hope to expand this to other patient groups in the future.
The clinic allows people with Down syndrome to be seen by psychiatrists, psychiatry trainees, a general practitioner, nurses and allied health professionals all in the one place. They may see one or several of our health practitioners in a single clinic visit and receive resources to help them have better health.
Patients and their carers also leave the clinic with a summary page, which helps them remember what was talked about during appointments, and the things they need to do before they return to the clinic.
Celebrating World Down Syndrome Day
We held a morning tea with patients at the Down Syndrome Clinic to celebrate World Down Syndrome Day on Friday 21 March.
Welcoming international guest speaker Professor Joaquin Espinosa
Together with Mater Research, we recently hosted a seminar with special international guest speaker, Professor Joaquin Espinosa, from the Linda Crnic Institute for Down Syndrome, University of Colorado.
Professor Espinosa presented his research about Down Syndrome Regression Disorder and links to the immune and neurology system.
This event was attended by clinicians, scientists, researchers and stakeholders from around Australia. There is an event recording for clinicians and scientists interested in hearing this research.
Research update
EASY Health
EASY Health is our online learning course that’s positively changing the way health workers consider patients with intellectual disability and those on the autism spectrum. Currently featuring four modules, QCEAIDH has received an extension from the Department of Social Services to expand the roll out of this project.
Taking onboard stakeholder feedback, QCEAIDH is working with Queenslanders with Disabilities Network and Indelibility Arts to keep making engaging and meaningful education to help people with intellectual disability and those on the autism spectrum get better health care.
QCEAIDH also employs two staff members with lived experience of intellectual disability who work as research assistants on this project.
Medical Research Futures Fund applications
Dr Cathy Franklin, Dr Katie Brooker and members of the research team were part of several applications in the Medical Research Future Fund’s (MRFF) latest round, which had a special focus on improving the health of people with intellectual disability.
The applications focussed on increasing access to medical procedures, developing a tool to help health workers assess for mental illness in people with intellectual disability and research which supports further research into treatments that help people with Down Syndrome Regression Disorder.
We will keep you updated on the outcomes of the applications!
Conferences
National Centre of Excellence in Intellectual Disability Health 2025 Conference
The theme for this year’s conference is “Working together every step of the way”. The conference is in-person in Sydney and online on 3 and 4 July 2025.
It is open to a broad audience, including people with intellectual disability, their families and supporters, and health and disability professionals.
36th Annual National PANDDA Conference
The Professional Association of Nurses in Developmental Disability Australia (PANDDA) conference will be held in Brisbane on 30 and 31 October. The theme for this year’s conference is “Visibility and influence: nursing in the NDIS”.
Royal Australian and New Zealand College of Psychiatrists Annual Congress
Held on 4-8 May 2025 on the Gold Coast, the Annual Congress is open to psychiatrists, psychiatry trainees and other health professionals interested in mental health.
The theme for this year is “Bright Lights and Big ideas”. This is a general conference but there are several sessions on psychiatry of intellectual disability and autism in the programme. Dr Franklin, Dr Johnston, Dr McAuliffe, Dr Brooker and Ms Jenkins are presenting.
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