Strong Voices

Researchers working for IHC are now finalising a report that for the first time in years presents a much clearer picture of what it means to have an intellectual disability in New Zealand.

IHC has been frustrated for a long time about the lack of information collected by the Government on the lives of people with intellectual disabilities. If people are invisible, then it’s easy to overlook the services and support they need to live good lives.

IHC Director of Advocacy Tania Thomas says we can’t keep guessing what people need. She has called for the Government to place greater value on gathering and collating solid information about the needs of disabled people.

She says good data helps us see what more we should be doing in support of disabled people. It shows where there is unfair treatment in the intellectually disabled population compared with the general population. And it helps New Zealand meet its obligations under the UN Convention on the Rights of Persons with Disabilities.

IHC commissioned research team Kōtātā Insight to dig into a huge database to try to find out more. The decision was made after hearing that neither the Ministry of Health nor Whaikaha, the new Ministry of Disabled People, had any plans to update the Health Indicators for New Zealanders with Intellectual Disability report, now 12 years out of date.

The researchers have combined statistical data from the Integrated Data Infrastructure (IDI), one of the more comprehensive linked datasets in the world, with the lived experience of intellectually disabled people.

Their research covers a wider scope, reaching beyond health into many areas of the lives of intellectually disabled people.

The IDI holds de-identified data on individuals and households in New Zealand, collected from government agencies, surveys and non-governmental organisations. It allowed researchers to identify intellectually disabled people and examine wellbeing across health, employment, income, education, crime and child welfare. This large dataset also allowed the researchers to explore diversity within the intellectually disabled population.

There is information about nine million people in the database, mostly from the 1990s and 2000s, including information on temporary migrants and deceased people and other historical data.

Researcher Keith McLeod says the project was an eye-opener for him. “It made me think about things I hadn’t thought about – how we support people as they age and the role of government.”

Colleague Luisa Beltran-Castillon says she was pleased that in drawing the data from the IDI, they were able to tell more of a story about people’s lives, not just their health. “I could see a story of how people lived,” she says. The report reveals who people with disabilities live with, where in the country they live and what factors influence these things.

IHC Advocate Shara Turner, who has been working with Kōtātā Insight, says the research sheds light on the experiences of a group of New Zealanders who are too often made invisible by policy. “The results can be used as evidence for advocates and policy makers to design and prioritise more effective support, as well as enabling the country to better report on progress against the priorities in the UN Convention on the Rights of Persons with Disabilities.”

Shara says not much has improved for people with intellectual disabilities, and certainly not in terms of money in their pockets in the past 20 years relative to the cost of living. The personal allowance for people living in residential care was $45 a week in 2003. In 2023 it was $75. “Things aren’t great, but there are things we can do.”

Shara will be presenting the results of the research at the Australian Social Policy Conference in Canberra in September and at the Delivering Disability Services Conference in Auckland in October.

The Kōtātā Insight report is the first effort at providing a comprehensive set of monitoring indicators that report on the lives of people with intellectual disability. The database can be used for further research and the code developed can be used to update the indicators in the future.

The researchers plan to provide a final report with data and analysis that becomes a valuable resource across the sector. Luisa says that as well as the report they will be creating a data set that can be picked up and interrogated by other disability researchers. Keith says the computer code developed for the research will also be freely available to other researchers.

Caption: Hutt Valley woman Heather McGregor at home with her housemates and IDEA Services support worker. If people are visible in government policy and planning, it’s easier to provide the services and support they need to live good lives.

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