Four young adults with Down syndrome are taking part in an Australian research study — not as subjects, but as research assistants. The University of Queensland’s Down Syndrome Research Program (DSRP) is conducting a new study, Adulthood for Gen Zs with Down Syndrome, and what better way to conduct the study than by recruiting those with firsthand experience.
Associate professor Dr. Rhonda Faragher, the director of the program, is overseeing research assistants Rebecca Flanagan, Alana Pettigrew, Mia Johnston and Michael Cox.
“Unfortunately it’s unique that we’ve employed people with Down syndrome on a proper wage as research assistants… This employment strategy is absolutely because these individuals are doing work that we simply cannot do without their contribution. We need their expertise and working with this group of people has been just brilliant. They have really enriched the project in so many ways.”
The research project focuses on the lives of Gen Z individuals with Down syndrome and how their quality of life is compared to individuals with Down syndrome in past generations. The DSRP has conducted research in the Brisbane region for over 40 years, documenting trends within the Down syndrome community as individuals transitioned from living in secluded institutional settings, to living at home, going to school, and becoming active members of society.
“We wanted to know what adulthood was like for these young people who have been in inclusive education, and we suspect it’s very different from those born 40 years ago… [In the 1970s], if families chose to take those babies home, and it was against pressure to institutionalise them, they were told, ‘Well, it’s on your head.'”
Research assistant Rebecca Flanagan is enjoying the opportunity to be part of the project, and even had the opportunity to speak to the UN about it:
“I taught myself how to do Zoom and we spoke about what we did, what we were hoping for, what research [data] we were getting, how they reacted to our interviews.”
Though the study wraps up in May, the hope is that its findings will have a lasting impact in helping those with Down syndrome. To help educate those within the healthcare, education, police, and legal communities about how to support the Down syndrome community, the team will also be creating a variety of podcasts and lesson plans based on their findings.