An introduction to disability data in Aotearoa

Guest essay by Sam Murray and Phoebe Eden-Mann

Why is disability data important?

Good quality disability data is essential to ensure disabled people can fully realise their rights. Without disability data, we cannot shine a light on the inequality disabled people experience. We also cannot assess how effectively both the Government and the private sector are meeting the needs of disabled people and their whānau.

The government also requires disability data to report accurately on the disability action plans and the Disability Strategy, as well as to meet its international commitments under the Convention of the Rights of Persons with Disabilities, the Convention on the Rights of the Child, and the Sustainable Development Goals. All require data on disabled people in order to assess progress towards achieving their respective actions, objectives, articles and goals.

A brief history of disability data in Aotearoa

Emerging from the vacuum (before 1996)

Historically, the New Zealand government has had little interest in collecting statistics on disabled people. Between 1916 and 1996 no disability-related questions were included in the Census.

By the mid-1980s, the disability movement had grown in strength and the large residential institutions were slowly being phased out. As a result, the government began taking disability statistics more seriously. Between 1986 and 1993, the government commissioned a number of surveys from the research agency BERL, and from Stats NZ. These surveys gave wildly inconsistent results: reported disability prevalence varied from 14% to 40%.

With other methods proving unreliable, people in the disability community began to pressure the government to include disability questions in the Census. Stats NZ was reluctant to do this, citing Canadian experience that the inclusion of disability questions produced unreliable results without a follow-up survey, but unfortunately Stats NZ lacked the funding to perform the necessary follow-up surveys. Stats NZ approached IHC and CCS Disability Action to help fund the first follow-up survey, which went ahead in 1996.

The Disability Survey era (1996 to 2013)

The new post-Census follow-up surveys were collectively referred to as the Disability Survey, and reached two different groups: a larger private household survey, and a smaller survey of people living in residential facilities. Both surveys were used to estimate the prevalence of disability in New Zealand.

Disability surveys run after the Census in 1996, 2001, 2006, and 2013, and although flawed in some aspects, these surveys quickly became the preeminent source of disability data in New Zealand. Information we now take for granted – such as one in four New Zealanders being a person with a disability – came from these disability surveys. That data point is from 2013, the last year the Census follow-up surveys were run.

Back to the vacuum (2013 to 2015)

In 2012, the New Zealand government quietly cancelled the 2018 Disability Survey, without any notification or consultation with the disability community. The cancellation was not announced publicly until 2015, surprising both the disability community and people within government who relied on this data. Instead of running after every census, the survey would now only run after every second census: once every 10 years.

That same year, the Disability Data and Evidence Working Group was formed with a goal of improving data collection and statistics about disabled people. Some members of the working group only found out about the cancellation of the disability survey as part of the background reading for the Group’s work.

The cancellation was a sobering reminder that despite all the progress, there is a need for constant pressure and vigilance when dealing with government. The Office for Disability Issues and Stats NZ have acknowledged that they should have consulted with the disability community and have promised to do this in the future.

Where are we at now?

The Washington Group era (2015 to present)

The change to a 10-year cycle meant the next Disability Survey would not run until 2023, created a major gap in disability data and impacting the ability of disabled people, agencies, and advocates to access funding and make good decisions.

To help close this gap, Stats NZ added a short international disability question set into their regular household surveys. This question set is called the Washington Group Short Set of Disability Questions (WG-SS). The Washington Group is a United Nations Statistical Commission group made up of officials from a wide range of statistical agencies around the world.

The WG-SS was added to a range of government surveys, including:

  • The General Social Survey (From 2016)
  • The Household Labour Force Survey (June of every year from 2017 onwards)
  • Te Kupenga (2018)
  • The 2018 Census
  • The New Zealand Crime & Victims Survey (2018/19)
  • The Health Survey (2019/20).

In addition to the above, the 2020 Household Economic Survey added a longer Washington Group question set, the WG-SS Enhanced, and a module for children under the age of 5, the WG-CFM.

The use of Washington Group question sets has greatly increased the availability and range of disability data, especially regularly collected data. Unfortunately, the WG-SS collects data from a much smaller and less representative group of disabled people than the post-Census disability surveys. Relative to other disabled people, the following groups tend to be underrepresented in this data:

  • Disabled people under 65
  • People with learning disabilities
  • Neurodiverse people
  • People with lived experience of mental health conditions.

The smaller number of people identified with the Short Set also makes it difficult to break the data apart to look at groups, such as ethnic groups and young people with disabilities. The overrepresentation of disabled people over 65 in the data also causes issues. There are several reasons for this.

  • Many disabled people over 65 acquired their impairment after reaching the age of 65, because the disability rate rapidly increases over the age of 65.
  • Disabled people who acquire their impairment later in life are likely to have more wealth and other assets.
  • Our superannuation is higher than working age benefits and many older people in general own their house.

As a result, disabled people over 65 tend to be better off financially than younger disabled people. For example, in the General Social Survey 2018, disabled people under 65 were almost 2.5 times more likely to report not having enough income than non-disabled people under 65. By comparison, disabled people over 65 were only 1.5 times more likely to report not having enough income.

In common with non-disabled people, the experiences of disabled people under the age of 65 tend to get especially hidden in the WG-SS data for two further reasons: Disabled people over 65 are overrepresented in the Short Set disability data, and the low percentage of disabled people identified by the WG-SS data (especially younger disabled people) makes it difficult to accurately break down the data any further by age.

What comes next?

In our view, disability data needs to better reflect the diversity within the disability community. This means working with the disability community to develop questions that ensure a more representative group of disabled people can be included.

We particularly need questions that work for disabled Māori, disabled Pacific peoples, and younger disabled people in general. This may make it harder to compare Aotearoa data with data from overseas, and with our own historical data.

This may make some people hesitant, but in reality, our current comparisons are also misleading. Changing demographics and overrepresentation of older disabled people (age 65+) are causing issues already.

We believe the benefits of developing local disability questions that work for our communities is more important. Otherwise, we risk collecting more data, but failing to provide an accurate picture of the disability community.