Review of 2021 Census Topics

Unpaid work/carers
The ‘unpaid work’ topic covers four components of unpaid work: unpaid domestic work; unpaid care of others due to disability, illness or old age; unpaid care of children; and voluntary work. This submission focuses on Question 49 of this topic (‘in the last two weeks did the person spend time providing unpaid care, help or assistance to family members or others because of a disability, a long term illness or problems related to old age?’), and how this is relates to estimates of informal carers.
Rearrange the order of questions
Some people who provide unpaid care for people with disability may not be identified as such because of the relative positioning of the questions on the need for assistance and those on the provision of unpaid care. Census questions about core activity need for assistance have been positioned in question numbers 20–23, while the questions about unpaid work have been positioned much further down in question numbers 48–51. Question 49 uses the words ‘a disability, a long term illness or problems related to old age’ to signify the reasons for the need for assistance with core activity that are included in Question 23 of the topic on need for assistance. Some people may not be able to follow the intended connection between the two questions/topics, given the relative position of the questions.
The AIHW suggest that the ABS consider rearranging the positions of questions for the two topics (need for assistance and unpaid work) to put the two sets of questions as closely as possible in the Census form, ideally sequentially. This would improve understanding of the intent of the questions and thus the identification of unpaid carers for people with disability.
 
Better align the concept/definition of a carer
The current version of Question 49 asks about assistance provided in the previous two weeks and does not directly define the type of assistance being provided. The reference time period (‘in the previous two weeks’) could also potentially exclude people who have been providing unpaid care of a person with disability but did not provide care during the two weeks before the Census date for various reasons.
The AIHW suggests the ABS better align the concept/definition of a carer of someone with disability, illness or old age to that used in the ABS Survey of Disability, Ageing and Carers (SDAC). For example, expand the reference time period for Questions 49 from ‘in the last two weeks’ to be consistent with the SDAC. The SDAC defines a carer as a person who provides any informal assistance, in terms of help or supervision, to people with disability or older people (aged 65 years and over). Assistance must be ongoing, or likely to be ongoing, for at least six months.
These changes are not intended to replace the highly valued ABS Survey of Disability, Ageing and Carers (SDAC) which collects more detailed information on carers, much like other ABS surveys collect more detailed information on other key population groups than is available in the Census.
Scope of this submission
Note that this submission focuses on improving the utility of the question on informal carers, and does not propose an intensity measure, even though that would dramatically improve the information on the capacity of the informal care sector.
Such a proposal is not included because we assessed that suitable measures would unlikely pass the criteria set out in this form. However, the AIHW would be very pleased to continue discussions with the ABS should such a proposal be considered suitably significant.

Detailed data on this topic are important for monitoring national initiatives related to carers, such as progress against the Integrated Plan for Carer Support Services (which will follow on from the previous National Carers Strategy) and priorities related to carers under the National Disability Strategy.
Informal carers play an important role in the lives of many people with disability, providing essential support either in place of, or in addition to, formal services. As such, the ability to identify informal carers of people with disability and examine the level of care they provide will also assist in monitoring and evaluating major national reforms to disability policy and service delivery, such as the National Disability Insurance Scheme (NDIS). For example, the level of support provided to people with disability not only affects the person with disability themselves, but can also significantly affect their informal carers. It can also have impacts on the broader system if the balance of supports is not right, with people potentially needing to seek additional support for either themselves or for the person they care for.

Detailed data on this topic are highly policy relevant and essential for understanding the carer population at small geographic areas, as well as for calculating estimates for small population groups, such as Aboriginal and Torres Strait Islander peoples and people from culturally and linguistically diverse backgrounds. These groups are not well enumerated in other key sources (for example, in the ABS SDAC).

Given the relative position of the current two questions/topics (need for assistance and unpaid work), some people might not readily see the intended connection between them. Changes to the positions of questions for the two topics to put them as closely together as possible in the Census form will improve understanding of the intent of the questions.

The unpaid work/carer topic has been included in a number of Censuses and is well accepted. The changes proposed would not affect this.

The proposed changes to the topic are minor and would not affect the ability to collect efficiently collect.

Given major reforms underway in disability and carer policy and service delivery, this topic will remain highly relevant in the future. There will be a need for time series data on this topic to monitor and evaluate how these reforms have influenced the lives of carers and the people they care for.

The changes proposed are not intended to replace the highly valued ABS SDAC which collects more detailed information on carers. The coverage of the SDAC, however, does not include people living in very remote areas and discrete Aboriginal and Torres Strait Islander communities and, as such, it may underestimate these important groups.