Disability, Ageing and Carers (Survey of)

NAME OF ORGANISATION
Australian Bureau of Statistics (ABS)

OVERVIEW

This survey collected information on 3 population groups: people aged 60 years and over, people with disabilities and their carers. There are other sources of information about services provided to these groups, but this survey is the only source of information on the assistance requirements of those groups, the extent to which these requirements are met, and the characteristics of those with unmet need. It also provides information on participation in economic and community activities. The survey is the major source of national statistics on carers and primary carers: numbers and characteristics of carers, care relationships, activities for which informal care is provided, and, for primary carers, support available and required, and the effects of the caring role on their lives.

PURPOSE

Data were collected to enable government departments and community groups to plan for the future and develop relevant policies. The size and distribution of groups eligible for assistance under different program legislation is used by the Department of Health and Ageing, and Department of Families, Housing, Community Services and Indigenous Affairs as the basis for allocating and distributing program funds to State governments, and by State and Territory departments for service planning and fund distribution.

SCOPE

Output scope
Persons in both urban and rural areas in all states and territories, living in both private and non-private dwellings (including persons in cared-accommodation), but excluding:

• diplomatic personnel of overseas governments
• persons whose usual residence was outside Australia
• members of non-Australian defence forces (and their dependents) stationed in Australia
• persons living in very remote areas.

• persons living in Indigenous communities in non-very remote areas
• persons living in boarding schools
• persons living in gaols or correctional institutions.

Conceptual framework

The Survey of Disability, Ageing and Carers provides information about the presence of long term health conditions leading to impairment, limitation or restriction in the context of the person's environment. It uses as its conceptual bases the definitions of disability used by the World Health Organisation (WHO) in the International Classification of Functioning, Disability and Health 2001 (ICF). It provides a measure of a person's ability to perform Activities of Daily Living (ADLs) of self-care, mobility and communication, plus health care; and the instrumental activities of daily living (IADLs), home help, home maintenance, meal preparation, transport, self management and personal business affairs. Education and employment limitations are included. In 2003 information was collected on cognitive and emotional support. For those identified as having a disability the survey measures need for assistance and severity of specific limitations or restrictions (profound, severe, moderate, or mild core activity restrictions, or restricted participation in schooling and employment with or without core activity restriction or limitation). Assessment of need for assistance (because of disability) in the above activities, and the level to which this need is met, allows for a measure of unmet need.

Main outputs
Main data items

All persons - Disability status, age, sex, state or territory of usual residence, household and family variables.

All persons 15 years and over in households - educational attainment, current study, labour force status, income and main source of income, tenure type.

Persons with a disability - Need for and receipt of assistance, activities for which assistance needed, frequency of need, providers of assistance, employment and schooling restrictions, long-term health conditions, main health condition, impairment, activities in which difficulty experienced, ability to use, use and availability of public transport, participation in community activities, destination of journeys in previous fortnight, and mode of transport of most recent trip, use of concession cards for travel, whether has current drivers licence and frequency of driving.

Older persons - Activities for which help was needed, community participation, ability to use, availability and use of public transport, destination of journeys in previous fortnight, and mode of transport of most recent trip, use of concession cards for travel, whether has current drivers licence and frequency of driving.

Primary carers - type of care provided, duration of care and hours spent caring, support available, impact of caring role on labour force participation, relationships and well-being.

All carers - in - or ex-household care, type of care provided within household, age, sex and relationship of in-household recipients, type of restriction and main long-term condition of in-household recipients.

Main outputs
A summary publication, a user guide, and some thematic table sets:
Disability, Ageing and Carers: Summary of Findings (cat. no. 4430.0)
Disability, Ageing and Carers: User Guide (cat. no. 4431.0.55.001)
Caring in the Community table set (cat. no. 4430.0.55.003 and 4430.0.55.004)
Disability and Long-Term Health Conditions table set (cat. no. 4430.0.55.001 and 4430.0.55.002)
Standard table sets for States and Territories
Confidentialised unit record file
Information on the Internet.

Classifications

The collection specific classifications used in this survey are:

• Disability status
• Carer status
• Activity intensity of need, frequency of need, type of provider, and extent to which needs met.

Need for assistance relates to persons who have a disability or are aged 60 years and over, and who need help with specified activities because of their age or condition.

Unmet need for assistance relates to persons who have a disability or are aged 60 years and over, and who need help. A person is considered to have an unmet need if he/she requires help but is not receiving it, or the help received is insufficient to satisfy the person's needs for a specific activity

Disability

Disability was defined as the presence of one or more specified limitations, restrictions or impairments which had lasted, or was likely to last, for a period of 6 months or more. The specified limitations, restrictions or impairments were:

• loss of sight (not corrected by wearing glasses or contact lenses)
• loss of hearing, that restricted communication or resulted in the use of an aid
• speech difficulties
• chronic or recurring pain or discomfort causing restriction
• shortness of breath or breathing difficulties causing restriction
• blackouts, fits, or loss of consciousness
• difficulty learning or understanding
• incomplete use of arms or fingers
• difficulty gripping or holding things
• incomplete use of feet or legs
• a nervous or emotional condition causing restriction
• a restriction in physical activities or in doing physical work
• a disfigurement or deformity
• mental illness or condition requiring help or supervision
• long-term effects of head injury, stroke or other brain damage causing restriction
• receiving treatment or medication for another long-term condition or ailment, and still restricted in everyday activities
• any other long-term condition resulting in a restriction.
Disability status
• Has disability and profoundly limited in core activities
• Has disability and severely limited in core activities
• Has disability and moderately limited in core activities
• Has disability and mildly limited in core activities
• Has disability and not limited in core activities but
  restricted in schooling or employment
• Has disability and not limited or restricted in core activities,
  schooling or employment
• Has a long term health condition without disability
• Has no long term health condition.

Core activity limitation

Core activity limited was identified if a person had a limitation in performing certain specific tasks associated with the activities of daily living listed below, because of their disability.

• Self-care: showering, bathing, dressing, eating, toileting, bladder or bowel control.
• Mobility: moving around away from the home/establishment, moving around at home/establishment, getting into or out of a bed/chair, walking 200 metres, walking up or down stairs without a handrail, using public transport, or bending to pick up something from the floor.
• Communication: understanding or being understood by strangers/family/friends in the person's native language.

Specific limitation restriction

Specific limitation or restriction corresponds with the concept of 'handicap' used in previous disability surveys and includes core activity limitations and:

• Schooling: unable to attend school, attended a special school, attended special classes at an ordinary school, needed time off school or had difficulty at school because of a disability.
• Employment: permanently unable to work, restricted in the type of work could do, often needed time off work, restricted in the number or hours could work, would require an employer to make special arrangements, or limited in prospects of obtaining/keeping/changing jobs.

Level of severity of limitation

Four levels of severity (profound, severe, moderate and mild) were determined in the survey for each of the three areas of core activity limitation: self-care, mobility and communication. These levels were based on the person's ability to perform tasks relevant to these three areas and on the amount of help required. For each area of core activity limitation the levels of severity are as follows:
• Profound - personal help or supervision always required (households) or occupant cannot perform tasks without help or supervision (establishments)
• Severe - personal help or supervision sometimes required. In establishments severe handicap was only determined for verbal communication.
• Moderate - no personal help or supervision required but the person has difficult in performing one or more of the tasks
• Mild - no personal help or supervision required and no difficulty in performing any of the specified tasks but the persons uses an aid. In addition (for the household component only) any person having difficulty with walking 200 metres, walking up and down stairs without a handrail, or picking up an object from the floor was determined to have a mild handicap.
People with a schooling or employment restriction also had a specific limitation or restriction, but the level of severity was not determined.

The highest level of severity in any one of the areas of self-care, mobility or communication determines the severity of total limitation.

Carer status
• Primary carer and other carer
• Primary carer only
• Carer but not a primary carer
• Not a carer
A Primary Carer is a person who confirms that they provide the most informal care on a regular basis to a person needing assistance with self-care, mobility or communication because of disability or old age.

Comments and/or Other Regions

The survey covers persons in both urban and rural areas in all states and territories, except for those living in very remote areas. The exclusion of these persons will only have a minor impact on any aggregate estimates that are produced for individual states and territories, with the exception of the Northern Territory where such persons account for over 20% of the population.

Data for individual Statistical Local Areas (SLAs) cannot be released, but if clients wish to specify their own aggregations of SLAs, limited data can be provided on that basis. Data for other regions (for example according to categories of the Accessibility and Remoteness Index for Australia (ARIA), or similar) may also be available.

COLLECTION FREQUENCY
3 Yearly

Frequency comments

There were 7 years between the Survey of Handicapped Persons (1981) and the Survey of Disabled and Aged persons (1988). Subsequent Surveys of Disability, Ageing and Carers (1993, 1998, 2003 and 2009) have been conducted on either a five or six yearly cycle. The next survey is due to be run in 2015.

COLLECTION HISTORY

Disability information was first collected in a Monthly Population Survey (MPS) supplementary survey in 1967, and twice more as an MPS supplementary through the 70's. It was later collected in a series of Special Supplementary Surveys in 1981, 1988, 1993, 1998 and 2003, expanding its populations of interest in 1988 to include older people and principal carers. Following consultation with users, changes to the criteria for identifying disability were made to the 1998 and 2003 SDACs.

In 2009, a change was made to the identification of the primary carer population. In 2003, primary carers were identified by asking a responsible adult to complete screening questions on behalf of the household, as to whether anyone provided assistance with communication, mobility or self-care to members of the household. The identified person was then personally interviewed and asked to confirm that the nominated recipient of that care was the person they provided the most care for. If they indicated that this was the case, they were recorded as a 'primary carer'. The person who was receiving the care did not contribute to the identification process. In 2009, this identification process was expanded to include members of the household who the recipient of care identified as their main care provider.

The survey is now on a six yearly cycle, with the next collection due in 2015.

DATA AVAILABILITY
Yes

Data availability comments

Publication - Disability, Ageing and Carers, Australia: Summary of Findings (cat. no. 4430.0)

Expanded confidentialised unit record file (cat no. 4430.0.30.001)