My Health Choices My Way: How We Are Transforming Health Care Transitions for Young People with Intellectual Disability

Name: My Health Choices My Way: How We Are Transforming Health Care Transitions for Young People with Intellectual Disability
Start: 2026-04-22T22:00:00-0400
End: 2026-04-22T23:00:00-0400

Wed, 22 Apr, 10pm - 11pm EDT

Online Event

Disability Innovation Institute UNSW (DIIU)

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Description

About this webinar

When young people with intellectual disability turn 18, they have to move from children's health services to adult health services. This is called a health care transition, and for many young people, it goes badly wrong. Support can disappear overnight. Doctors don't always share information with each other. And the new system is often not set up to include people with disability properly.

My Health Choices My Way is a research program that is working to address this. It is funded by the Australian Government's Medical Research Future Fund and led by UNSW's Disability Innovation Institute.

We spent five years talking with over 100 young people with intellectual disability before we started. They told us two things matter most: being supported to make their own health choices, and being treated as a person, not just a diagnosis.

What makes this project different is that people with intellectual disability are not just research participants. They are researchers, decision-makers and leaders in the project from start to finish.

In this webinar, we will share:

What the problem is and why it matters
What we are going to do about it
How we are making sure the people most affected are leading the way

This session is for anyone who works in health, disability, education or advocacy, and anyone who believes young people with disability deserve better.

Our Speakers

Prof Iva Strnadová

Iva is Professor of Special Education and Disability Studies and Academic Lead Research at UNSW's Disability Innovation Institute. Ranked 4th in the world for co-production research with people with intellectual disability (Scopus), her work has pioneered transformative inclusive research methodologies across health, education and disability. She has authored more than 220 publications and holds Category 1 grants from the ARC, NHMRC and MRFF. Iva's co-production guidelines, accessed in 43 countries, have shaped how researchers and ethics committees approach inclusive research internationally.
A/Professor Elizabeth (Emma) Palmer

Emma is a Clinical Geneticist and associate clinical professor at UNSW who has spent over a decade working at the intersection of rare genetic disease, health equity and co-design. They developed Australia's first National Recommendations for Rare Disease Health Care, launched at Federal Parliament in 2024. Elizabeth is recognised nationally and internationally for co-designing person-centred models of care, including as Medical and Scientific Advisor to Rare Voices Australia and as an Advisor to a WHO taskforce on rare disease services. They were awarded the 2023 J Moss Award for outstanding work in the field of intellectual disability and is the 2026 global rare disease changemaker award from Rare Diseases International.
Julie Loblinzk Refalo OAM

Julie is an Adjunct Lecturer and Research Fellow at UNSW's School of Education, and one of only two people with intellectual disability in Australia to hold a Graduate Certificate in Health Sciences (Developmental Disability). With over 27 years of experience in disability advocacy, including as Executive Officer of Self Advocacy Sydney, Julie has been a Chief Investigator on 19 competitive research grants and has co-led major programs including GeneEQUAL ($1.56M) and ScreenEQUAL ($1.43M). She was awarded the Medal of the Order of Australia in 2024 for her services to self-advocacy and people with disability.
Skie Sarfaraz

Skie is a Wiradjuri woman, a Community Disability Team Leader and Lived Experience Researcher with intellectual disability. She brings deep expertise in co-design, self-advocacy and knowledge translation, grounded in her lived experience and her leadership role managing a team that supports staff members with intellectual disability and complex support needs. As Associate Investigator on the GeneEQUAL project since 2021, Skie has co-designed research, conducted interviews, analysed data and translated findings into accessible formats, contributing to four publications in high-impact journals. She has presented at the Human Genetics Society of Australasia and at Parliament House, and served as a Kindship Ambassador supporting parents and carers of children with special needs.