Strong Voices

The last time we had comprehensive information on the health of New Zealanders with intellectual disabilities was a Ministry of Health report in 2011.

That is about to change. After hearing there was no plan to update the Health Indicators for New Zealanders with Intellectual Disability report, IHC has commissioned a research team to do the job.

Kōtātā Insight researchers Luisa Beltran Castillon and Keith McLeod will be working inside a massive and very private database at Stats NZ, known as the Integrated Data Infrastructure or IDI, which links the information that government agencies hold about New Zealanders. There is information about nine million people in the database, mostly from the 1990s and 2000s, including temporary migrants, deceased people and other historic data.

Not only have the researchers been asked to report on the latest health status of people with intellectual disabilities but also to produce data relating to a range of issues affecting their lives, such as education and training, justice, housing, income and work.

The IDI holds microdata about people and households – about life events, education, income, benefits, migration, justice and health. The microdata comes from government agencies, Stats NZ and non-government organisations.

Access to the IDI is restricted to authorised researchers working on authorised projects, and all the information is anonymised before researchers see it to guard the privacy of individuals. Stats NZ has had to give permission for the project, which is scheduled to start in early December and be completed by mid-2023.

In 2011, Health Indicators for New Zealanders with Intellectual Disability reported that males with intellectual disabilities had an average life expectancy of 59.7 years – 18 years less than all New Zealand males. Females had an average life expectancy of 59.5 years, about 23 years less than all New Zealand females.

We don’t know what the average life expectancy is now. We also don’t know if it’s still the case that people with intellectual disabilities are 1.5 times more likely to be treated for certain chronic health conditions, 1.5 times more likely to have chronic respiratory disease, 1.5 times more likely to have cancer and twice as likely to have coronary heart disease – and over four times more likely to have public hospital admissions that could have been avoided.

IHC Advocacy was told by the Ministry of Health that the work of updating the report now belonged with Whaikaha Ministry of Disabled People. IHC realised that it could be some time before the new ministry was able to do this.

IHC Director of Advocacy Tania Thomas says having accurate data enables good planning to meet the needs of people with intellectual disabilities. It helps central and local government and disability support providers to set priorities.

“It points to the places we are getting traction against the United Nations Convention on the Rights of Persons with Disabilities. It helps us see what we should be doing more of in support of disabled people.” Tania says it also shows where there is unfair treatment in the intellectually disabled population compared with the general population.

IHC Advocate Shara Turner says the research will provide invaluable knowledge on if and how the health of intellectually disabled New Zealanders has improved or worsened since 2011. She says New Zealand has recently been told by the United Nations that it needs a comprehensive plan for improving the health of intellectually disabled people.

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

Caption: The project team, from left, IHC Advocate Shara Turner, IHC Self-Advocacy Coordinator David Corner, and Kōtātā Insight researchers Keith McLeod and Luisa Beltran-Castillon.