Strong Voices

People with intellectual disabilities make up a small percentage of people in New Zealand with disabilities. How small? No one really knows because no one is counting them properly.

This is why the 2023 Disability Survey being planned by Stats NZ is important – and why IHC has made a submission suggesting ways it can help people with intellectual disabilities to be seen and heard and counted.

The Disability Survey is the primary source for estimating how many disabled people there are in New Zealand. It also provides information on the experiences of disabled people, and how well they are doing across a range of housing, economic and wellbeing measures.

This is a once-in-10-year opportunity. The last Disability Survey was held in 2013 and IHC Advocate Shara Turner says it is still one of the primary sources of statistics we rely on to understand the lives of people in this demographic – together with an even older report, Health Indicators for New Zealanders with Intellectual Disability, published in 2011.

Shara says the present Disability Survey is more reflective of people with physical disabilities, who make up the majority of disabled New Zealanders. “We have a very small population of intellectually disabled people and their lives are very different.”

She says questions about transport are aimed at those with physical disabilities. “For us, accessibility is not about a ramp, it’s about how you get people to be able to afford to get on a bus.” When it comes to barriers to employment, the barrier for people might be more likely to involve the
interview.

“The types of modification that a person with an intellectual disability might need is having a job interview where the person can demonstrate what they can do.”

Data needs to be presented in a way that explains more about the people we represent. For example, talking about people over the age of 65 is not particularly relevant when the average life expectancy for people with intellectual disabilities is 59 years, around 20 years less than general population.

The Ministry of Education keeps no national records of the number of children with intellectual disabilities. “We don’t know enough about who is in any age group,” Shara says. Last year, when the Government decided to make KiwiSaver available early to some groups of people who had conditions associated with shortened life expectancy, IHC thought it made sense to also lower the
qualifying age for national superannuation.

“We wrote to [Minister for Disability Issues] Carmel Sepuloni to say can you make national superannuation available to people 40-plus? And they said no. There are no plans to do this,” Shara says. “Imagine if people with intellectual disabilities got super when they were 40. It’s a huge step up.”

Shara says the IHC submission on the 2023 Disability Survey suggests a number of ways the survey could better represent people with intellectual disabilities.

The Disability Survey will be run after the 2023 Census of Population and Dwellings. The survey always follows a census because census data is used to select and contact respondents. Around 23,000 adults and children, both disabled and non-disabled, will be interviewed for the survey.

Caption: Who’s counting? – The Disability Survey is a once-in-10-year opportunity to know more about people with disabilities. Photograph by Sharon McCutcheon on Unsplash