Today marks International Day of People with Disability (IDPwD), a United Nations initiative that encourages communities around the world to deepen their awareness, understanding and acceptance of people with disability.
At The Kids, this day resonates strongly. Empowering children with disability is an important pillar in of our vision for a healthier, fairer future for every child. With around one in ten children in Australia living with a disability, the need for evidence-driven support, inclusive services and equitable healthcare has never been more important.
The 2025 IDPwD theme, Fostering disability-inclusive societies for advancing social progress, reflects the heart of our Child Disability team’s work. Their research is helping children with disability live rich, fulfilling lives, strengthening their ability to participate fully in their communities, and ensuring they and their families have a voice in shaping the care and support they receive.
Read on to learn more about some of the research we are doing to improve the health and happiness of children living with disability.
HEALTHCARE-SAVVI: Sorting, Applying, and Verifying Valid Information
Earlier this year, Dr Thom Nevill – a research officer in our Child Disability team – led a project to better understand how parents and their children navigate and make sense of healthcare information.
Through in-depth interviews with 23 parents and approximately 15 teenagers and young people with intellectual disability, the team explored how families manage their health information, access resources, and make informed decisions about health care.
“This research is identifying challenges and opportunities for improving support systems, ensuring that needed information is presented in a way that is clear, accessible, and empowering. Data will form the platform for a program to support parents being more ‘HEALTHCARE-SAVVI’,” Dr Nevill said.
The Child Disability team has started co-designing an online health literacy support resource for parents with parents and members of advocacy and support organisations.
Assessing online health literacy resources for people with intellectual disabilities
Following on from the Healthcare SAVVI project, our Child Disability Team sought to determine what online health information is available to people with intellectual disability and the families and caregivers who support them. They wanted to know whether the resources people find on the internet are clear, accessible and genuinely useful.
To do this, they conducted a broad online search of real-world materials such as websites, guides and organisational resources.
They then mapped and described what they found, looking at factors like readability, format and suitability for the intended audience. This gave them a clear picture of what’s available today and where important gaps still exist.
Empowering kids to make health care decisions
Dr Jess Keeley is leading a project designed to help children with an intellectual disability have greater involvement in their healthcare decision-making.
In a recent study, 54 families were interviewed to understand how young people with an intellectual disability are currently involved in healthcare decision-making. The findings revealed a wide spectrum from passive involvement (where parents simply inform the child of decisions made by others) to active involvement (where the child makes decisions themselves).
Together with parents, our Child Disability team is now co-designing training modules and resources to better equip carers with the tools to support their children to have greater involvement in their healthcare decision-making.
“Having the parents developing this resource with us is really important; it helps us to create something that can have real impact,” Dr Keeley said.
Supporting the mental wellbeing of children with intellectual disabilities and their caregiver
Child Disability team Senior Research Officer Dr Jacinta Saldaris is leading a program of research focused on improving the mental health and wellbeing of children with intellectual disability – empowering the child and their family.
Earlier this year, Dr Saldaris and her team interviewed 34 caregivers about their children (aged 6-18), to explore the day-to-day challenges that impact their child’s mental wellbeing, but also supportive strategies.
“We began each interview by defining what mental wellbeing looks like for their child, then explored situations that led to emotional or behavioural dysregulation, strategies that supported mental wellbeing, and gaps in current support,” Dr Saldaris said.
“During our interviews, we also talked about caregiver mental health, as many caregivers of children with intellectual disability experience mental health difficulties.”
The team is now moving into the next phase of the project: co-designing an online resource with caregivers, children and professionals to support the mental wellbeing of children with intellectual disability, including access to information and strategies.
They will also co-design modifications to an existing online mental wellbeing intervention for caregivers that encourages social support and storytelling.
“We want to develop resources that consider both the child and the parent, recognising the strong influence they have on one other,” Dr Saldaris said.
Quality of Life Inventory (QI-Disability)
Led by Professor Jenny Downs, researchers at The Kids proudly developed the Quality of Life Inventory-Disability (QI-Disability), a parent-reported outcome assessment of quality of life for children and adolescents with intellectual disability aged 3 to 18 years.
The inventory contains 32 items in six domains, including Physical Health, Positive Emotions, Negative Emotions, Social Interactions, Leisure and the Outdoors, and Independence.
Using best practice methodologies, development was based on interviews with families to understand quality of life and design the measure and “think aloud” interviews with parents to make sure that the measure was clear and relevant to parents. QI-Disability was then tested with a large group of families to confirm that it accurately measures what it is designed to measure and that it was reliable.
QI-Disability is now used widely to understand and improve quality of life for children with disability. Pharmaceutical companies use it in rare disease clinical trials, it is a component of major international rare disease registries, and clinicians use it in hospitals and therapy settings to guide clinical care. Some parents even use QI-Disability scores to help plan daily routines that best support their child’s wellbeing.
QI-Disability has been translated into multiple European and Asian languages, including Spanish, French, Italian, Danish, Japanese and simplified Chinese.