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For years, conversations about disability in Aotearoa have relied on subjective information: stories, experiences, and professional judgements. Those voices are vital and provide good qualitative data but too often they can be dismissed as anecdotal, emotional, or isolated. The real problem has been simpler than that: we have not had the quantitative data- and like it or not -that was usually promotes change.
That is why IHC’s work using the Government’s Integrated Data Infrastructure (IDI) is so significant.
The organisation’s first report in 2023 was ground-breaking- the first of its kind to use linked government data to track life outcomes for people with intellectual disabilities across multiple systems. For the first time, we could see a national picture rather than fragments held by individual agencies.
The power of the IDI lies in its ability to connect what have traditionally been separate silos: health, education, income, housing, justice, and social services. Individually, each dataset tells only part of the story. Together, they reveal patterns that have long been suspected but rarely proven.
And what is emerging is deeply concerning.
The data shows increasing rates of injury, diabetes, and dementia among people with intellectual disabilities. Emergency department use remains high, alongside significant levels of injury related hospitalisation particularly among disabled women. These trends point not simply to poorer health outcomes, but to systemic failure in prevention, early intervention, and equitable access to care.
The first report also highlights evidence of barriers to ACC access. Despite higher rates of injury, claim rates are lower for those with intellectual disabilities. That gap matters. ACC is designed as a universal system, yet the data suggests it is not functioning equitably for everyone it is meant to serve.
Education findings are equally troubling. There is a concerning rise in young people with intellectual disabilities not receiving an education that accommodates their specific needs.
Housing data reveals another pressure point. People with intellectual disabilities are experiencing growing housing stress, with increasing placement on social housing waiting lists. The impact is particularly stark for disabled Māori and Pacific children, where disability intersects with existing inequities to compound disadvantage early in life.
None of these findings will shock families, providers, or disabled people themselves. Many have been describing these realities for decades. What is different now is that this evidence sits inside government’s own data.
Because data changes the conversation from “we think” to “we know.”
This is why the second report is so significant. It moves us beyond a one-off snapshot and toward ongoing visibility. It signals that outcomes for people with intellectual disabilities are measurable, trackable, and therefore the responsibility of the systems that shape them.
Just as importantly, this data enables smarter planning. It helps decision-makers strike the right balance of mainstream and specialist services. This means providing both services that integrate disabled people into mainstream services (health, education, housing, employment) and providing specialist disability services when and where they are genuinely needed. Without this level of insight, people with intellectual disabilities can be made to cope with ill equipped mainstream environment that are driven by a simplistic “everyone must be treated the same” ideology that doesn’t take into account the diverse spectrum of needs.
Good quantitative data does three things: it makes inequity visible, it enables better decisions, and it creates accountability. Without it, disabled people remain statistically invisible and invisibility is where inequity thrives.
The second report will be available from 7.00am Tuesday 17th February on www.ihc.org.nz
Jonny Wilkinson is the CEO of Tiaho Trust – Disability A Matter of Perception, a Whangarei based disability advocacy organisation.
