Strong Voices

The success of IHC’s foray into big data with the 2023 publication of From Data to Dignity: Health and Wellbeing Indicators for New Zealanders with Intellectual Disability, has led the IHC Board to approve funding for six additional research projects.

Using the Integrated Data Infrastructure (IDI), IHC will again partner with specialist research group Kōtātā Insight to gain insights into the intellectually disabled population of New Zealand.

The approval of these six research projects by the IHC Board marks a significant step forward in understanding and improving the lives of people with intellectual disabilities. The research projects span diverse areas from wellbeing indicators to justice system pathways, and are designed to provide comprehensive insights and advocate for better policy for people with intellectual disabilities.

IHC Director of Advocacy Tania Thomas tells us, “These research projects are a vital step forward in our mission to improve the lives of people with intellectual disabilities. By gathering and analysing comprehensive data, we can advocate more effectively for policies and support systems that work for the intellectually disabled community.”

What is the IDI?

The IDI is a linked research database. It holds data about people and households and life events like education, income, benefits, migration, justice and health. The data comes from government agencies, Stats NZ surveys and non-government organisations. It is linked or integrated to form the IDI.

Researchers use the IDI to gain insights into our society and economy. The research can help answer questions about complex issues that affect New Zealanders.  

The data held in the IDI is de-identified but is connected through a ‘spine’ that forms the conceptual centre of the IDI. Broadly, the target population for the spine is all individuals who have ever been residents of New Zealand. The spine aims to include everyone only once.  

Work on the following three projects has begun:

1. Update Wellbeing Indicators Report: Five Years On

The From Data to Dignity report used Census and other data from 2018. Now in 2024 we can update the indicators in that report with 2023 Census data as well as data from the 2023 Disability Survey.

This updated report will track changes in outcomes over time by comparing data from 2018 and 2023. It will focus on high-level results with breakdowns by sex and ethnicity for priority indicators or where significant changes are observed.

The project will also review the list of indicators to ensure they add value, potentially introducing new data on avoidable mortality and home ownership for people with intellectual disabilities. The 2023 Disability Survey, despite its limited sample size, will also be used to explore outcomes like subjective wellbeing, social connections and access to services.

2. Income, Poverty and Living Situation

The second project aims to better understand the living situations, incomes and material wellbeing of people with intellectual disabilities. Previous findings in the From Data to Dignity report highlighted that people with intellectual disabilities were more likely to live in low-income households and deprived areas, reporting poor housing and health. This research will delve into why people with intellectual disabilities are more prone to poverty than people who are not intellectually disabled and how their living situations affect their financial status.

This project will use the Household Economic Survey to examine the living and financial situations of people with intellectual disabilities and their families and whānau. This analysis will be complemented with interviews with people with intellectual disabilities and their families to provide nuanced insights into their circumstances.

3. People with Intellectual Disabilities in the Workforce

The third project will investigate the employment status of people with intellectual disabilities, building on findings in From Data to Dignity that show that 21 percent of the intellectually disabled population aged 18-64 is in paid employment. This project will analyse Inland Revenue and Census data as well as incorporating themes from interviews with people with intellectual disabilities.

The project will explore various aspects of employment for people with intellectual disabilities, including their earnings, hours worked, job types, employer sizes and urban versus rural employment rates. Additionally, it will examine job stability, health outcomes and the challenges faced by employed people with intellectual disabilities, such as overcoming hurdles, the impacts of benefit abatement rates and transportation issues.

The following projects are still in the planning stage and their focus may shift. Work will start on these projects in the second half of 2025.

4. Students with Intellectual Disabilities Attending Special Schools

The fourth project focuses on the life outcomes of students with intellectual disabilities who attended special schools. Previous research has indicated that most students at special schools have an intellectual disability, and IHC has concerns about their outcomes as they have been excluded from mainstream education.

Using IDI data, the project will track a cohort of students with intellectual disabilities who have attended special schools, comparing their outcomes with those of intellectually disabled students in mainstream schools. It will examine metrics like school expulsions, changes in schools, post-school transitions, tertiary education attendance, living situations and health outcomes.

5. Māori with Intellectual Disability

The fifth project will seek to highlight the life experiences of Māori with intellectual disabilities. It will focus on that population across a few domains, using existing data and collaborating with Māori researchers.

The project will combine quantitative and qualitative elements to gain a deeper understanding of the challenges faced by Māori with intellectual disabilities. This focused research is expected to provide targeted insights and recommendations for improving outcomes for this demographic.

6. People with Intellectual Disability: Pathways through the Justice System

The final project will explore the pathways of people with intellectual disabilities through the justice system as perpetrators and victims. Previous findings in From Data to Dignity indicated that people with intellectual disabilities had poor outcomes in the safety domain, being more likely to be victims of crime and to face convictions and imprisonment.

This research will compare the justice system pathways of people with intellectual disabilities with those of individuals without intellectual disability who commit similar crimes. The project will use data and interviews to understand the unique challenges faced by people with intellectual disabilities in the justice system. The study aims to identify potential areas for intervention and support to improve safety and justice outcomes for the intellectually disabled community.

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Caption: From left to right: Siobhan Vaccarino from Standards and Monitoring Services, Zandra Vaccarino from the NZ Down Syndrome Association and Shara Turner and David Corner from IHC at the Wellington launch of From Data to Dignity at Wharewaka Function Centre on 16 April 2024.