Streamlining collection of personal characteristics

Most of the data provided to DARU for the Disability Advocacy by the Numbers report was drawn from the ‘Individual Advocacy’ part of the QDC. These questions provided information on the personal characteristics of people receiving advocacy services.

Organisations are significantly underreporting many of these characteristics. For example, organisations do not report:

  • The gender of 47 per cent of their clients (figure 1)
  • The age of 43 per cent of their clients (figure 2).

Similarly, the data does not allow us to identify the proportion of clients for whom Aboriginal or Torres Strait Islander status or cultural and linguistic diversity was not recorded. However, we expect there may be similar or greater levels of under-reporting of cultural status. This means that the estimates we have provided of the proportion of people from Aboriginal or Torres Strait Islander background, or from culturally and linguistically diverse backgrounds may be too low.

From the data we have on age and gender, we can see that there had been an improvement in recording people’s age and gender in the most recent financial year. However, around 30 per cent of people continue to have no gender recorded, along with 26 per cent for age.


Figure 1: Number of people with no gender recorded, quarterly, 2012-16


Figure 2: Number of people recieving disability advocacy services with no age group reported



Only request personal data for people receiving individual support

Option for discussion
  • Only collect personal characteristics of people receiving individual disability advocacy support

In recording the personal characteristics of people receiving advocacy support, it is currently unclear which people disability advocacy agencies are including in their reporting. In some cases it appears organisations may be reporting characteristics for more people than they report providing individual advocacy services to. In other cases, organisations identify the personal characteristics of fewer people than they report providing individual advocacy services to.

While the questions on personal characteristics appear under the heading ‘Individual Advocacy’, it is unclear whether organisations are reporting only individual services, or including people participating in self-advocacy or group advocacy activities as well.

DARU is aware organisations can only report data they collect. We understand most advocacy organisations collect information on people’s personal characteristics during ‘intake’ processes, where people are asked or assisted to provide personal information when they begin receiving an individual disability advocacy service. This process may or may not occur for people participating in group activities or self-advocacy support.

By more clearly limiting questions to people receiving individual advocacy support, organisations may have greater clarity about the information they are to provide.


Collect information on non-responses

Option for discussion
  • Provide options for recording when personal characteristics are not present, or are not identified

A possible explanation for some under-reporting is that organisations are not recording the information in the first place. The data provided do not allow DARU to distinguish between instances where data is not recorded in the first place, as opposed to when data is not reported to the funding body. The distinction is important as it helps identify the causes of under-reporting.

For example, some agencies may not ask people whether they are identify as an Aboriginal and/or Torres Strait Islander person. In other cases, people may choose not to disclose their status, and not wish to answer the question. In these circumstances, organisations may not report the number of people from an Aboriginal or Torres Strait Islander background because they have no data to report.

For example, an alternative set of questions could be:

  • Number of people who identify as being Aboriginal and/or Torres Strait Islander
  • Number of people who identify as not being Aboriginal and/or Torres Strait Islander
  • Number of people whose Aboriginal and/or Torres Strait Islander status is unknown.

This would allow a more accurate estimate of the proportion of people who identify as Aboriginal and/or Torres Strait Islander, as those who status is unknown could be excluded from the estimate.

Similar changes could be made to other questions about personal characteristics.


Clarify gender and sexuality data

Option for discussion
  • Clarify whether the intention is to collect data on sex, gender identity, or sexuality, and revise this question accordingly

Currently, the QDC form requests data on whether people’s gender is “male”, “female” or “other (e.g. transgender)”. It is unclear whether this a person’s self-identified gender or the gender ascribed by an advocate.

Many transgender people clearly identify as male or female, even if this gender identity is different from their sex at birth. Some may object to the suggestion that transgender people belong in a gender category of ‘other’. Other people, who may or may not be transgender, may choose not to identify as male or female.

It is unclear whether the question is attempting to identify a person’s gender identity, or whether it is attempting to identify whether a person is cis-gendered or trans-gendered, or if they are intersex. The intention of the question should be clarified, and amended accordingly.

A related question is whether a person’s sexuality is an appropriate personal characteristic to record. While the current question appears to attempt to identify transgender people, it does not ask for reports of a person’s sexuality. It should be considered whether or not this an appropriate variable for reporting.


Consider appropriate age categories

Option for discussion
  • Consider recording more evenly spaced age ranges

The QDC form requests age ranges of varying lengths: from as small as a five year age span from 0-5, to a 40 year age span from 25-64, to the open-ended 65+ category. This makes detecting differences in the age compositions of clients over time more difficult, as significant changes in people’s ages can be masked by very wide age categories.

As Disability Advocacy by the Numbers reports, the majority of people are reported to fall into the 25-64 age category, which is unsurprising given its wide span. Consideration could be given to whether smaller age spans could be considered, which would provide greater analytical value.


Revise questions about cultural status

Option for discussion
  • Consider asking clearer questions about cultural status, such as country of birth or language spoken at home.

The current QDC form requests organisations to report the number of people who “were from a culturally or linguistically diverse background”. No further information is given on how this criterion should be assessed. It is possible organisations may interpret this question in different ways.

The concept of “cultural and linguistic diversity” is generally applied to a group of people. For example, if residents of a particular suburb come from many different countries, speak different languages and have different faiths, the community can be said to be culturally and linguistically diverse.

It is less clear that the concept can be applied to an individual. A person has their own individual cultural heritage, language and faith. An individual person does not have a ‘diverse’ background. It is also unclear how an organisation should assess this feature. It is not clear whether people are asked about their cultural identity, or whether advocates determine whether they believe people fall into this category.

This question also does not have clear benchmark for comparison. Disability Advocacy by the Numbers reports 10.2 per cent of people receiving advocacy services were reported to be from culturally and linguistically diverse backgrounds. However, we cannot say whether this is ‘high’ or ‘low’, as there is no established measure for this criterion for the general population, or for people with a disability.

Consideration can be given to requesting different information that can be more easily compared to available benchmarks. For example, the number of people born outside Australia, or the number of people who speak a language other than English at home.


Change the way geographic location is recorded

Option for discussion
  • Change the method of recording geographic location to be less onerous and more consistent

The QDC form requires organisations to identify both the DHHS region and the local government area of people receiving advocacy services. This requires working out which of the 79 local government areas the person resides in, and further determine their DHHS region. The example given in the QDC form shows both the DHHS division and local area (there are currently 4 divisions and 17 local areas). Data for this question were not provided to DARU for inclusion in Disability Advocacy by the Numbers.

This method of reporting is very onerous. It requires an organisation to undertake a great deal of investigation to ensure they are correctly reporting a person’s location. It is possible that this may result in organisations underreporting or not completing location data in the QDC.  Consideration should be given to finding an easier way to report a person’s geographic location.

One simple method could simply be to provide a list of people’s postcodes, not linked to any other identifying information. Using this, more detailed work could be during data analysis to present geographic information, rather than requiring organisations to undertake this work.


Review the appropriateness of disability type categories

Option for discussion
  • Review the appropriateness and method of reporting types of disability

The current QDC form collects two different sets of information about disability types. It asks organisations to list any specific diagnostic groups they provide advocacy for.

It also asks organisations to specify the number of people in each of the following disability categories:

  • Acquired Brain Injury | Physical Disability
  • Autism Spectrum Disorder | Psychiatric Disability
  • Deafblind | Speech Impairment
  • Deaf/hearing impaired | Vision Impairment
  • Intellectual disability | Undisclosed
  • Neurological disability | Other

DARU has not been provided with the responses to either question. We observe that there is some overlap between the two questions. We also note that the disability categories substantially overlap. For example, a deafblind person obviously also experiences both hearing and vision impairments, and may also be impaired in their speech. A person with an acquired brain injury may experience many different impairments, including to vision, hearing, intellect, neurology, speech and behaviour.

It is unclear whether placement in these categories is self-reported by people receiving disability advocacy, or whether they are assigned to categories by disability advocates.

It is also not clear that every person receiving a service has a disability, or identifies as having a disability. It is possible some services provide advocacy services for parents, relatives, companions, families or carers of people with disability, or to people who require assistance, but do not consider themselves as having a disability.

The purpose of documenting the number of people with different impairments is unclear. One possibility is to determine whether people with particular kinds of impairments are less likely to receive support from disability advocacy organisations. If this is the case, then some benchmark is required to determine an appropriate level of access. It is unclear whether the current set of categories matches to any available set of benchmarks.

Consideration could be given to whether it is appropriate to collect information on the types of disabilities people have. If so, the categorisation of impairments should be comparable to an established benchmark.


Consider submitting disaggregated data

Option for discussion
  • Consider submitting disaggregated data

The current method collects data in aggregate from each organisation. This means organisations provide the number of people they assist and the type of issues presented, but does not allow them to be cross-referenced. This means, for example, that the data cannot be disaggregated to determine whether men and women approach organisations for different advocacy issues.

It would be possible for organisations to report disaggregated data, which would allow for a richer and more meaningful examination of the experiences of different groups. However, this type of reporting would likely be significantly more onerous for organisations to complete. While the information would be de-identified, and not include personal details like names and addresses, the privacy implications for people and organisations should also be considered.