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The Journey Continues: What we are doing, and how you can be involved!
The Living Well with Global Developmental Delay project developed resources for young children with GDD and their families. This new project, funded by the Department of Health, Disability and Ageing, will focus on resources for children over the age of nine years, young people, and families. It will emphasise inclusion, rights, skill development and be co-designed with people with lived experience.
Families of children diagnosed with Global Developmental Delay (GDD) often describe their experience as a journey that evolves over time. An initial diagnosis of GDD often leads to other disability diagnoses. These may include Autism Spectrum Disorder, Intellectual Disability, Cerebral Palsy, Fragile X syndrome, and speech or language disorders. While many supports are available in the early years, access to clear, reliable, and practical information can diminish as children grow older. Parents, carers, and young people themselves frequently report feeling uncertain about what comes next—particularly during key transitions in education, services, and life stages.
This new project will expand the existing Living Well with GDD website to include accessible, evidence based resources for children over nine years of age and young people who were previously diagnosed with GDD, as well as their families, advocates, and professionals. The resources will reflect these pathways and support them as their understanding and support needs change.
The website will feature a broad range of resources, including:
- Plain language written information
- Learning modules focused on practical skills
- Case studies and lived experience stories
- Videos, animations, and blogs
- Links to relevant services and supports
All resources will be developed with careful attention to literacy levels, cultural and linguistic background, and diverse learning needs, ensuring information is usable and meaningful for a wide audience.
Why This Work Is Needed
Families consistently report that access to high quality information is critical to effective decisionmaking. This need becomes particularly urgent when children diagnosed with GDD either transition to a new diagnosis or, in some cases, may no longer be eligible for certain disability supports such as NDIS funding. These changes can lead to service disruption, emotional stress, and confusion for families.
Where no new diagnosis is made, families often seek guidance on how to continue supporting their child’s learning and development. When a new diagnosis is provided, families require clear information about what it means, what supports are available, and how their child’s future might be shaped.
Young people themselves also need access to reliable information as they grow older and take on a greater role in understanding their diagnosis, planning for adulthood, and advocating for their rights.
Feedback from parent working groups and focus group participants has highlighted a strong need for resources that:
- Extend beyond the early years
- Are practical and skills based
- Support capacity building for both children and families
- Address transitions across life stages
This project has been designed to meet these needs directly.
Supporting Key Life Transitions
Transitions are often described as some of the most challenging periods for children and young people with disability and their families. For this reason, the project will place a strong emphasis on providing information and resources to support:
- Primary to secondary school transitions
- Secondary school to post‑school pathways, including further education, training, employment, and community participation
Resources will be relevant across Australian states and territories and will emphasise inclusive education practices, rights awareness, and self advocacy. The aim is to support children and young people to develop independence and meaningful inclusion across all aspects of their lives.
Co‑Design at the Centre
Central to this project is a strong commitment to co‑design. People with lived experience of GDD and disability will be involved at every stage of the work—from shaping priorities to creating and reviewing content.
Two working groups will guide the project:
- A family working group, continuing the involvement of parents from the previous project
- A young people’s working group comprising individuals previously diagnosed with GDD, with representation from First Nations, rural, culturally and linguistically diverse (CALD), and LGBTQI+SB communities
To further strengthen disability leadership, the project will employ two project officers with lived experience of GDD and five young people to develop case studies. These case studies—shared through live or animated videos—will explore personal experiences, ambitions, challenges, and achievements. Lived experience stories are a powerful way for families and young people to see what is possible at different stages of life and to learn from others who have walked similar paths.
Get Involved: Lived Experience Opportunities Available
We are currently inviting applications and expressions of interest for the following lived‑experience roles:
- 2 × Project Officers (people with lived experience of GDD, employed one day per week)
- Case Study Participants (young people previously diagnosed with GDD)
- 6 × Young People’s Working Group Members
- Workshop Participants to contribute ideas and feedback through co‑design sessions
No prior research or project experience is required—your lived experience is what matters most. Flexible arrangements and accessibility supports will be available.
Apply or register your interest here.
Looking Ahead
The Living Well After Global Developmental Delay project aims to create a trusted, national online resource that families and young people can access when they need it—at any stage of life. By combining evidence based information with lived experience and inclusive design, the project seeks to empower children, young people, and families to navigate life after GDD with confidence, knowledge, and hope.
Matthew Breaden