The good and the bad of disability data

Disabled persons advocate, Roger Loveless, left, and CCS Disability Action senior policy analyst Sam Murray.

Data is boring, but important! Disability data is no exception. Complete, accurate, and robust disability data is what government needs to make good decisions around disability policy.

All too often, however, the stories of disabled people, and their whānau are not heard.

Quality disability data must acknowledge the human aspects of disability. This means looking beyond the figures that are easy to measure.

We need to value the hidden costs of disability as an important piece of the puzzle.

Quality disability data is also an important tool that the disability community needs to hold the government, society and the private sector to account.

In recent years, there has been good and bad news with nationally collected disability data.

The bad news: Back in 2012, the 2018 Disability Survey was cancelled. Since 1996, the Disability Survey had been held every five years. The next Disability Survey is planned for 2023, which is 10 years after the 2013 Disability Survey.

This is far too long. The Disability Survey is an essential source of disability data because it interviews a large number of people and includes in-depth questions on disability. It is vital that the Disability Survey switches back to at least a five-year cycle.

The good news: A growing number of regular surveys now include disability questions. These surveys provide a regular source of disability data but come with some caveats.

These surveys use fewer disability identification questions than the Disability Survey. This means the variety of impairment types covered is smaller. Fewer disabled people are also identified in this data.

As a result, the data is less reliable and tends to bounce around between years. In addition, it is difficult to break the disability data down by ethnicity, impairment type, and/or gender. This makes it hard to explore the diversity of experiences in the disability community.

The data from regular surveys is best used to look at broad trends over time. For example, we can look at the Household Labour Force Survey. The June edition of this survey has had disability data since 2017.

Since 2017 there has been no real change in employment outcomes for disabled people aged 15-to-64. The employment rate for disabled people aged 15-to-64 is still under half that of non-disabled people in that age group.

A big challenge with disability data is understanding the effects of age. The disability rate rapidly increases over the age of 65. This means many disabled people over 65 have acquired their impairment after reaching the age of 65.

They will still experience many of the same barriers as other disabled people, especially around access. They, however, are likely to have more wealth and other assets.

As a result, disabled people over 65 tend to have better outcomes than younger disabled people.

For example, in 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 than non-disabled people over 65.

This can become a real issue because of the big differences in median age between disabled people and non-disabled people. Because so many disabled people are over 65, disabled people have a much higher median age than non-disabled people. In New Zealand, people over 65 often score better on poverty, home ownership and wellbeing measures than younger people.

With all-ages disability data, we are comparing a population with many people over 65 with a younger population. This can hide the inequality experienced by disabled people who have had their impairment from an early age.

This problem may get worse with our ageing population. For now, the best we can do is to look at younger age ranges in the data. In the future, we need data on the specific experiences of people who have had an impairment from an early age. The 2023 Disability Survey may help here, but we still need far more regular data.

Another major gap is data on the financial and time costs disabled people and their whānau experience. There has been some work done on this over the years, but again we still lack a regular and reliable source of data on this.

This is important because the government often does not understand the true depth of financial and time costs disabled people face. The often-large gap between the government’s support and those costs is largely hidden.

We need in-depth analysis of the hidden costs of disability. This includes looking at:
• The value of unpaid family and whānau support
• The amount disabled people and their whānau spend privately on equipment and support
• The opportunity costs caused when disabled people and their whānau cannot fully engage in society, for example, through lost employment or volunteering opportunities.

If we could better show the true depths of the costs, this could lead to increases in support.

Despite the challenges, slow progress is being made. The upcoming Household Economic Survey release will have disability data for the first time. You can now access disability data across a wide range of areas on a regular basis.

We still need a regular Disability Survey however to provide a much more detailed picture than provided by these regular surveys.

The Disability Survey allows us to explore the diversity of experiences within the disability community and identify the benefits of initiatives such as Enabling Good Lives.

You can find most of the recent disability data on the Statistics New Zealand pages below. Look under latest information releases and latest publications: www.stats.govt.nz/topics/disability.

Surveys that now have disability data are:
• General Social Survey (2016 and 2018)
• Household Labour Force Survey (June of every year from 2017 onwards)
• Te Kupenga (2018)
• 2018 Census
• New Zealand Crime & Victims Survey (2018/19)
• Health Survey (2019/20)

* Roger Loveless is an advocate for disabled persons, an MDANZ member, and a local advisory committee member for CCS Disability Action Bay of Plenty. He has a lived experience of disability.
Sam Murray is a senior policy analyst for CCS Disability Action and is based in Dunedin.

* This story was originally published in the Autumn 2021 edition of In Touch magazine.

For more information please contact:

Melanie Louden
Communications and Marketing Advisor
Muscular Dystrophy Association of New Zealand
027 509 8774
melanie.louden@mda.org.nz