In 1978, researchers at The University of Queensland recruited a Brisbane-born group of babies with Down syndrome for a world-first study that would follow their growth and development from infancy to adulthood.
The study coincided with the end of the practice that saw these children routinely institutionalised, and therefore set out to follow the first generation of people with Down syndrome to be cared for by their families, educated at school, and eventually living in the adult community.
The researchers did not know it then, but their study would go on to become the longest running and most complete study of its kind anywhere in the world, winning many awards and receiving international recognition for its contributions to the world’s understanding of people with Down syndrome and how to best support them across their lifespan.
Now in its 40th year, the Down Syndrome Research Program, based at UQ’s School of Education, has debunked many myths about Down syndrome and led to the development of programs that are not only improving and enriching the lives of the people who took part in the study, but also the lives of many others with intellectual disabilities around the world.
The program began in Brisbane in 1978 when 41 children born between May 1976 and December 1978 were recruited for the world’s first long-term study into Down syndrome.
The Brisbane-born focus continued when a further 33 children born between January 1973 and December 1975 joined the study at a later stage. Together with other children (not necessarily Brisbane-born) and their families who were recruited at various stages to participate in specific projects, more than 200 families have contributed to the program of research over the past 40 years.
With the exception of those who have since passed away, the initial cohort of children continue to participate in the study today, now as adults, providing unique insights into the wellbeing and development of people with Down syndrome and the relationship with their parents and siblings.
Led by a team of researchers including the late Dr Pat Gunn, Dr Anne Jobling, Professor Monica Cuskelly (now at the University of Tasmania), Associate Professor Karen Moni, Dr Rhonda Faragher and Jan Lloyd (the program’s research manager), the program of research has encompassed many projects with many different cohorts over the years and has produced an astonishing body of publications about the participants’ cognitive and motor development, their temperament and family functioning, as well as aspects of their education and wellbeing.
Dr Faragher, the current Director of UQ’s Down Syndrome Research Program, says the research has debunked many of the myths about people with Down syndrome.
“This research has affirmed that people born with Down syndrome can look forward to a good life with the opportunity to make valued contributions to their families and the community in general,” Dr Faragher says.
“Through what we have learned about Down syndrome, our research shows how quality of life may be enhanced and how educators and therapists can best support growth and development across the lifespan."
“The negative outlook of the past has been changed for good!”
Program participant Hollie Symons reading with her mum.
Program participant Hollie Symons reading with her mum.
Supporting lifelong learning
One of the research program’s early focus areas was the ongoing development of language for people with Down syndrome. This aspect of the research work has continued through their early years and into adolescence.
The research has shown that the language and literacy skills of people with Down syndrome continues to develop and does not ‘plateau’ in early adolescence as was previously thought, disproving a common belief that was held by the educational community.
This led to the development of the award-winning Latch-On program, a two-year literacy and technology teaching and learning program for adolescents with Down syndrome and other intellectual disabilities.
Designed by Associate Professor Moni and Dr Jobling, the program enables young adults aged from 18 to continue their literacy development in a post-school environment, using digital technology to enhance literacy, self-confidence, independence and work placement opportunities.
Thanks to UniQuest, Latch-On was licensed to the Endeavour Foundation in 2004 and has been successfully delivered in Australia for more than 15 years. The program has also been licensed to organisations in Canada and Ireland, ensuring the program benefits individuals right around the world.
Associate Professor Moni says the program has been instrumental in helping people with Down syndrome engage more fully and independently in their communities.
“Our work has broken down some of the barriers that used to exist around the notion that young people with intellectual disabilities could not continue to learn new skills,” she says.
“Young adults with Down syndrome require continuing education in literacy and numeracy skills after they leave school to support their inclusion in their communities, and particularly with access to paid work.”
“We continue to be inspired by the enthusiasm, determination and successes of students who have attended our program.”
Forty years on from its inception, the Down Syndrome Research Program continues its important work. Many of the original researchers are still involved, having formed close relationships with the participants and their families over the years.
With the original cohort now in their 30s and 40s, the main focus of the research is now on adulthood, and particularly ageing and mental health issues.
“One of the issues at this life stage is mental wellbeing, and our current research efforts, led by Professor Monica Cuskelly, are focused on finding ways to support good mental health in these adults,” Dr Faragher says.
In 2018, Dr Patricia Gunn – one of the program’s founders and dedicated researcher – received an individual researcher award from Down Syndrome International. Sadly, Dr Gunn died four days before the award ceremony and Dr Monica Cuskelly accepted the award on her behalf.
The program, too, has received international recognition for its outstanding contributions towards Down syndrome research, receiving a Scientific Research award from Down Syndrome International in 2017.
Dr Faragher says the work undertaken by Dr Gunn and all of the other dedicated researchers over the years is just as important today as it was when the study began.
“This is the only program in the world that has been going for 40 years,” she says.
“Thanks to this body of research, babies born today with Down syndrome can look forward to dramatically different lives from those first participants in the longitudinal cohort."
“It’s important to recognise that the population of people with Down syndrome in Australia is growing, and the implications of that means that we’ve got to keep researching.”
A new study that is being undertaken in partnership with Down Syndrome Australia, Edmund Rice Education Australia and schools across the country is exploring the ways that teachers can adjust regular secondary mathematics to make it accessible for learners with Down syndrome in inclusive classroom settings.
The program has been generously supported over the years by the Michael Cameron Fund, which was established in 1985 by the family of Michael Cameron, who passed away at age seven. Michael was recruited at birth for the program.
The program has also been supported by partners including UQ, the National Health and Medical Research Centre and the Australian Research Council, as well as many generous donors.
Dr Faragher says the generosity of donors has been critical to the program’s success.
“Without our valuable donors, the team wouldn’t have been able to keep this program going for such a long time,” she says.
“The continued support from our donors and partners ensures many people with Down syndrome around the world will continue to benefit from this work.”
The story so far
1978: Initial cohort of babies and their families are recruited for the longitudinal study.
1982–83: A second cohort of children and their families are recruited for the study.
1998: Based on findings from the research, Associate Professor Karen Moni and Dr Anne Jobling develop Latch-On, a literacy and technology teaching and learning program for adolescents with Down syndrome and other intellectual disabilities.
2004: UniQuest licenses Latch-On to the Endeavour Foundation in Australia.
2008–10: Latch-On is expanded to Canada through licensing agreements with Down Syndrome Research Foundation and North Island Community College BC.
2011: The Latch-On program receives accreditation as a Certificate II in Literacy and Technology by the Queensland Department of Education – a nationally recognised tertiary qualification.
2012: Latch-on is expanded to Ireland through a licensing agreement with Down Syndrome Ireland.
2014: The Latch-On program receives two prestigious awards: a Business Higher Education Roundtable joint award with Endeavour and Down Syndrome Ireland for community engagement (highly commended), and the inaugural UQ Partners In Research Excellence Award recognising UQ’s long-term partnership with Endeavour.
2015: Latch-On is shortlisted in the national awards category in the AONTA adult education awards in Ireland.
2017: The Down Syndrome Research Program receives a World Down Syndrome Day award from Down Syndrome International, presented in conjunction with the World Down Syndrome Congress in 2018.
2018: The Down Syndrome Research Program celebrates its 40th anniversary.
2018: Dr Patricia Gunn receives an individual researcher award from Down Syndrome International.
Image: Program participant Kathleen Fleming with her mum. Words by Stacey King.