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Disability data is everywhere: how can it be effectively used for research and policy development

  • Writer: Sue Tape
    Sue Tape
  • 13 hours ago
  • 3 min read

Disability data often begins in childhood, and sometimes earlier, in the antenatal period. A child may not be developing in the same way as their peers or meeting milestones. It's at this point, that families, researchers, policy makers and service providers begin to explore how to best support the child. 


Families are often asked many questions. Forms are completed. Assessments begin.  

For people with disability, this marks the beginning of the data journey, with information being gathered at every stage of their life across multiple settings; maternal and child health, early childhood, schools, service providers, health services, and government agencies such as Centrelink and the NDIS.  


Sometimes data are collected to access disability supports and adjustments. Sometimes data are collected in the same way that all community members experience. Sometimes it's collected to provide accountability for government services. 


The longstanding challenge has been that these data have not been accessible, linked or available to use in research generation to improve the lives of people with disability and guide evidence-based policy development. 


This raises some important questions.

 

Who defines disability? Who decides what counts in the data? And, if disability data shapes policy, services and access to ordinary life, who should have agency and ownership over it? 


Australia is not short of disability data. But quantity does not always bring clarity. Are we asking the right questions? Are we collecting the right data? 


A real-world example


Think about how much data gets collected in ordinary life. Your supermarket loyalty card knows what you buy. Your phone knows where you go. Your streaming service knows what you watch. Your fitness app might know how well you sleep or how much you move.  


Each system holds part of a story about you. But none of them really know you. 

Your shopping history cannot explain whether you are caring for a sick family member. Your GPS cannot explain why you stopped working. Your streaming habits cannot tell someone whether you are lonely, thriving or excluded. 


Disability data can sometimes work like this too. 


Lots of information exists. Different systems hold different pieces. But unless the pieces connect, and unless people with disability help shape the questions, we risk mistaking fragments of information for the whole story. 


We still struggle to answer fundamental questions: 

  • How many people with disability are participating in everyday community life? 

  • What helps people feel safe? 

  • Where are people falling through the cracks?  

  • What are the intersecting factors that impact whether people with disability can live equitable lives? 

  • Which policies are improving lives, and which are unintentionally making things harder? 

  • What happens across a person’s whole life, rather than inside one system? 


And perhaps most importantly, who gets to define disability in the first place? 


Data reflects different approaches to, or models of, disability 


How we collect data reflects how we understand disability. 

  • In the medical system, data collection may focus on diagnosis or reducing impairments. 

  • In a functional model, it may focus on activity limitations and support needs, so people receive the right level of services. 

  • In a social model, it may focus on barriers and exclusions across systems, communities and daily life. 

  • In a human rights model, it may ask whether people can fully participate, exercise choice and self determination, and experience inclusion. 


These are not abstract debates. They shape research. They shape policy. They shape funding. They shape eligibility for certain types of disability supports. And they shape what gets measured and what is invisible. 


Continuing the conversation 


These questions sit at the centre of the NDRP Evidence to Action event 'Let's talk about disability data' (25 May).


Through real-world case studies and system perspectives, we will unpack the current data landscape, highlight gaps, and showcase approaches to designing and using data in more inclusive and meaningful ways to support robust research and policy development.


This session will help you identify data gaps, design accessible and inclusive research, and ensure your evidence can inform policy and practice. 


Resources to explore 


 
 

If you would like to provide input into the research agenda or any of the core activities outlined here, please subscribe to our mailing list and we will let you know the plan and process for collaboration. 

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