Stepping out in the world: the new adulthood for Gen Zs with Down syndrome

Researchers with Down syndrome gathered data on how young adults with Down syndrome experience their lives.

Expectations for young people with Down syndrome used to be very low: persistent myths and outdated views of the capacities of people with Down syndrome meant that opportunities to attend local schools, gain employment and live independently were rarely possible. This has changed. Now there is a new generation (Gen Z) of people with Down syndrome who may experience life in new ways. The group of people born between 1995 and 2012 are referred to as Gen Z.

This project was co-designed with young people with Down syndrome and involved 26 interviews and five focus groups with people with Down syndrome, to understand how they live their lives.
The research team had four Chief Investigators, two of whom were young people with Down syndrome.
It offered an additional four fully paid research assistant roles for individuals with Down syndrome.
All data were collected through interviews and focus groups that were led by trained research assistants with Down syndrome.
The project thought carefully about building capacity and leadership of the research team. The researchers were trained in leading interviews and focus groups, supported by the more senior researchers who had a track record in teaching and working with young people with Down syndrome.
All of the decisions were shared; the team met weekly to discuss the project and make decisions.

The research assistants said about their work on the project:

“Being a research assistant has made me feel brave.”
“I developed independence.”
“I liked being paid. I got purple streaks in my hair with my first pay.”
“I have learnt more about disabilities and more about chromosomes which I found interesting.”
“I feel included. I work with nice people.”
“I needed help with field work. I liked travelling.”
“I want to become more confident. I am learning.”

Emerging themes are:

Use of a wide range of technology. This generation use a range of different technology for a wide range of purposes.
Opportunities to take risks. Some participants were so supported that they did not have experience of getting lost or feeling unsafe. Others did and valued this. When participants needed help, most first turned to their mothers and next to support workers.
Role of support workers. We need to know more about this. Some support workers were invaluable in assisting participants to contribute. Some were regarded as friends (this is known in the research literature). There is a possibility that some were over-supported.
Health and fitness. Our participants were generally healthy and undertook a range of sport, exercise or fitness activities. Our research assistants were also interested in asking questions about this aspect of participants’ lives. One participant had Type 1 diabetes and managed his condition day-to-day, explaining his regime in the interview.
Most were underemployed. In agreement with national and international employment data of individuals with disability, our participants were keen to work and wanted to work more. Two were employed in their own businesses. A number had volunteer positions or worked part-time. It is unlikely our findings are a result of selection bias preferencing those who were available to participate in interviews because we could be flexible in our timings. For example, we interviewed one participant after he completed his day’s work at a dance company.
Quality of life. Our data indicate that our Gen Z participants are living a good life, full of meaning and purpose. The team is analysing the data through a quality of life lens, which is a prominent framework in intellectual disability studies.

This research will change how people understand the lives of young people with Down syndrome and start to tackle some of the barriers and attitudes that stand in the way of high expectations and better quality of life.

The outcomes of this research will be shared with the Down syndrome community, the research community, policy makers and professionals who interact with people with Down syndrome:

events and presentations to the Down syndrome community
podcasts, lesson plans and professional development resources for professionals who interact with people with Down syndrome
peer-reviewed journal articles and conference presentations to the research community.

In the media

Podcast

‘We’re awesome legends’: Global focus on UQ’s Down Syndrome research

Listen here

ABC 7:30

Study seeking to improve lives of people with Down syndrome

Watch here

Article

A great zest for life
Down Syndrome Research Program assistants paving the way for future generations

Read here

Article

Stepping out in the world: the new adulthood for Gen Zs with Down syndrome

Read here

Project Team

Investigators

Associate Professor Rhonda Faragher
Dr Jan Lloyd
Ms Ruth Faragher
Mr Bobby Pate
Ms Rebecca Flanagan
Ms Alana Pettigrew
Ms Mia Johnston
Mr Michael Cox

FREQUENTLY ASKED QUESTIONS

How can I get involved?

Soon we will hold consultation sessions to seek your ideas and feedback. Join the mailing list to be informed when these are happening. If you have a particular interest in an aspect of the work of NDRP, we would love to hear from you.

How will the stakeholder engagement happen given the disruption caused by COVID-19?

Stepping out in the world: the new adulthood for Gen Zs with Down syndrome

In the media

Podcast

ABC 7:30

Article

Article

Project Team

Investigators

Dr Jan Lloyd

Ms Ruth Faragher

Mr Bobby Pate

Ms Rebecca Flanagan

Ms Alana Pettigrew

Ms Mia Johnston

Mr Michael Cox

All from the University of Queensland