There are more than 5.3 million reasons why data matters in New Zealand. Data impacts everyone, every day and all the time.
For IHC New Zealand, whose mission is to advocate for the rights, inclusion and welfare of people living with intellectual disabilities, data can change lives.
“For this community it isn’t just numbers on a spreadsheet, it’s evidence for better healthcare, better support, and longer lives for people with intellectual disability,” says IHC Senior Advocate Shara Turner.
In their latest advocacy report, From Data to Dignity 2026, IHC uses data sourced from Stats NZ’s Integrated Data Infrastructure (IDI) to provide comprehensive data-driven comparisons of outcomes for New Zealanders with intellectual disabilities.
The IDI is a large research database that holds de-identified micro-data about people and households, connecting data from different subject areas so complex issues can be studied by organisations like IHC.
IDI data has helped IHC, along with organisations like New Zealand Down Syndrome and People First, communicate the need for action, inclusion and real-world outcomes for people with intellectual disabilities.
Access to the data held in the IDI and reports like From Data to Dignity, can illuminate trends and support organisations to make systemic change.
New Zealand Down Syndrome National Executive Officer Zandra Vaccarino became an advocate when her son Vincenzo was born, now 31 years on, she has dedicated her life to working with the Down syndrome community.
“My lived experience of having a son and daughter-in-love (law) with Down syndrome informs my practice and systemic advocacy,” says Zandra.
“I am empowered and inspired by the wisdom, knowledge and experience of our members with Down syndrome, their parents, and whānau.”
Although Zandra’s connection to the recent report is close to home, she says the value it holds can be significant.
“Having robust data shifts conversations from emotion to reality. It transforms lived experience into credible proof, strengthening advocacy and demonstrating that these issues are not isolated personal concerns, but systemic ones,” says Zandra.
Stats NZ encourages community and research organisations, like IHC, to make use of the IDI for public good.
“The insights they can generate from the IDI are hugely important for communities and positive outcomes for the people of New Zealand,” says Stats NZ General Manager Simon Ross.
“Researchers are encouraged to involve communities in shaping the work, maintain ongoing dialogue throughout the process, and ensure findings and data are shared back in ways that are accessible and beneficial to those communities.”
People First NZ Ngā Tāngata Tuatahi, a Disabled People’s Organisation welcomes the research and access to integrated data for research. National Chairperson Desrae Turvey says, “The data shows the hard reality for people with learning disability in New Zealand, and that we have a lot more work to do to improve things.”
National Funding and Project Manager Sandy Ryan, believes in the power data has in decision making.
“The only way you can get change is with data and evidence. Anecdotes are important, but data demonstrates the inequities people with learning disability face so clearly, and that is confronting for funders” says Sandy Ryan.
The data assists People First NZ to advocate for the rights of people with learning disability, provide access to courses and resources for self-advocacy.
IHC, NZDS, and People First NZ all agree, data is powerful because it turns individual experiences into undeniable evidence, helping people secure resources, influence decisions, and create meaningful, large-scale change.
“Data from the IDI helps us tell the story that our families and advocates have experienced for years, that the disadvantage experienced by people with intellectual disability is measurable and preventable,” says Shara.
“The value of linked administrative data is that it allows us to see how systems interact over a lifetime, and where people with intellectual disability are falling through the cracks.”
The IDI is New Zealand’s largest research database. It combines data from across Government agencies, Stats NZ surveys and non-government organisations allowing researchers to better understand outcomes over time. For more information visit Integrated Data Infrastructure | Stats NZ on our website. If you want to read about how we are modernising the IDI to ensure organisations like IHC continue to have access to the best available data, read our recent article here.
Picture provided by Shara at IHC:
IHC staff at the From Data to Dignity 2026 launch from left to right – Janine Stewart Director of the Office of the Chief Executive, Andrew Crisp CEO, Tania Thomas Director of Advocacy, David Corner ONZM National Self Advocacy Advisor, Shara Turner Senior Advocate.
