Down syndrome (DS) was first described in 1866 and has one of the longest histories of documentation of any disability. Unfortunately, the misconceptions from the era when DS was called Mongolism, and when individuals were confined to institutions from birth with little stimulation, or health care, continue to this day. Once, opportunities to attend local schools, gain employment and live independently were rarely possible, unlike today. Now there is a new generation of individuals with DS who may experience life in new ways. The group of individuals born 1995-2012 are referred to as Gen Z . This research project, co-designed with young adults with DS, will examine adulthood for Gen Zs with DS through the lens of quality of life (QOL). Using a qualitative methodology, we will train research assistants with DS to conduct interviews and focus groups, which will generate data from across five sites that will be thematically analysed. This will lead to a more comprehensive, evidence-based perspective with implications for education, health and law. Through multi-format outputs, the research will inform national and international policy and practice, where assumptions of QOL affect decisions in contexts such as schooling, health care, prenatal testing, and employment.
Rhonda Faragher, PhD, is the Director of the Down Syndrome Research Program at UQ where she is an Associate Professor in Inclusive Education. She is a Trustee of Down Syndrome International and an Independent Director of Down Syndrome Australia. She is an appointed Board member to the Academy on Education, Teaching and Research of IASSIDD – the International Association for the Scientific Study of Intellectual and Developmental Disability, and the Co-Editor in Chief of the Journal of Policy and Practice in Intellectual Disabilities. Dr Faragher is a Fellow of IASSIDD and Senior Fellow of the Higher Education Academy. She has received a number of awards for her work including the 2020 University of Queensland Staff Award for Excellence in Community, Diversity and Inclusion, and a Commonwealth of Australia Endeavour Executive Award.
Jan Lloyd holds a PhD in the field of disability exploring the perceptions and experience of adults with intellectual disabilities and their families in relation to NDIS planning and an MPhil in computer literacy for young adults with intellectual disabilities. She has had experience as both a project manager and a researcher in ARC projects. She currently manages the DSRP, the Latch-On Program, and the LYLAC Research Project. Her research interests focus on contemporary social issues for adults with intellectual disabilities, giving her extensive experience in researching with this population. Many of the research projects on which she has been active involved interviews and focus groups with the adults. Communication can at times be difficult for some adults with intellectual disability and she has developed strategies to enhance their ability to participate. The development of these strategies was a key element in her PhD.
Ruth Faragher
Ruth Faragher is a Gen Z with DS and has been advocating for disability rights since her teenage years. She is a foundation member of Down Syndrome Queensland’s Advisory Network. Ms Faragher has been asked to speak at several international conferences, such as the World Down Syndrome Congress and in 2020 was an invited speaker for a webinar hosted by IASSIDD. She is a member of ASIC’s Expert Advisory Group as a person with intellectual disability and was selected for the 2021 Young Leaders Program run by Children and Young People with Disability Australia. She has completed the Queensland Certificate of Education and a Certificate III in childcare. Ms Faragher lives in a share house with her friend and likes public speaking, riding her bike, and listening to music on her phone. She likes talking to everyone with Down syndrome.
Bobby Pate
Bobby Pate is a Gen Z with DS who completed Year 12 with the award of the Queensland Certificate of Education. In 2020, he was an invited speaker for an international webinar on research findings from the DSRP in conjunction with Down Syndrome Awareness Month. Since completing secondary school, Mr Pate has been undertaking vocational training and has three part-time positions in open employment. He also competes in triathlons and particularly likes swimming and bike riding. At home, he enjoys cooking, and feeding and walking his dog. He is looking forward to moving into his own place. He likes talking to people and helping out with friends.
Rebecca Flanagan
Rebecca Flanagan completed year 12 at a secondary school in Brisbane. She has also completed two modules in a Cert II course in Horticultural Skills at TAFE. She worked for seven years at a large hotel chain and also for eight years as a customer service assistant at a retail store. She was employed to work as a research assistant on the Gen Z project.
Mia Johnston
Mia Johnston completed her Year 12 SACE certificate in 2018. Mia has lived in country SA, Central Queensland, Adelaide SA, Churchbridge, Saskatchewan, Canada and currently lives in Alberton, Queensland. Mia is very competent with computers and using social media. Mia worked as a research assistant on the Gen Z project at UQ.