Documentation for the Workshop / Country Papers : Australia

Questionnaire on administrative sources of national disability data

Prepared for UNESCAP Workshop on improving disability data for policy use
23–26 September 2003, Bangkok, Thailand

Country: Australia

1. Overview of administrative sources

a. List the names of the different registers and the ministry/organisation responsible for them

There is a range of administrative data collections containing information about disability in Australia. These collections are organised by Commonwealth State and Territory departments with responsibilities for disability support services, income support programs, aged care services, employment and education services. Data from these services are outlined and included in the biennial report to the Australian parliament (AIHW 1999, 2001 and 2003c).

These collections include:

National data on disability support services (CSTDA NMDS—see following);
various databases of the Department of Family and Community Services;
Home and Community Care (HACC) Minimum Data Set (MDS); and
residential aged care data collections.

The Australian Commonwealth Government is the main source of income support to people with a disability and their carers in Australia. The databases of the Department of Family and Community Services include information on recipients of disability-related pensions and benefits, such as the Disability Support Pension, Sickness Allowance and Mobility Allowance and Carer Payment. Data on recipients include demographic characteristics, impairments and medical conditions.

The Commonwealth Department of Health and Ageing is responsible for the HACC MDS collection. The HACC MDS collection contains information about the users of HACC funded services and the amount and type of services they receive from the HACC program.

The residential aged care data are collected by the Commonwealth Department of Health and Ageing. The data includes information about all residents admitted to a residential care facilities (nursing homes and hostels).

There are some registers focusing on specific areas such as birth defects and spinal cord injury. These registers contain information mainly about people with specific impairment or medical conditions. The Australian Spinal Cord Injury Register contains information about people treated in hospital spinal units, for example, people discharged from the spinal units with a neurological deficit such as quadriplegia or paraplegia.

The rest of this reply will focus on the CSTDA NMDS which is the main administrative source on disability support services in Australia.

The Commonwealth-State/Territory Disability Agreement (CSTDA) is an agreement between the Commonwealth (Federal), State and Territory governments. This agreement, most recently sighed in 2003, places responsibility for planning, policy setting and management of disability employment services with the Commonwealth, whilst the States and Territories are responsible for all other disability services. Advocacy, print disability and information services are considered shared responsibility under this agreement. Services provided under the CSTDA are designed for people who need ongoing support with everyday life activities.

The Commonwealth—State/Territory Disability Agreement National Minimum Data Set (CSTDA NMDS) is a set of nationally significant data items that are collected in all Australian State and Territory; with agreed methods of collection and data transmission. The data set was first developed in 1993 and 1994 jointly by all States and Territories, the Commonwealth and the Australian Institute of Health and Welfare (AIHW), as a 'snapshot' collection on selected day on the year. The data collections are conducted under the auspices of the National Disability Administrators (comprising the heads of government disability services throughout Australia). After a process of redeveloping the existing data set, a new CSTDA NMDS was implemented in October 2002. The new collection moved from a 'snapshot' collection to a full-year collection.

b. What purpose do they have?

The CSTDA NMDS is a policy relevant collection. The purpose of the collection is to collect and collate national data relating to disability services under the CSTDA and their users, and to facilitate the exchange of information between jurisdictions by the design and use of standard core data items and agreed definitions. Under the CSTDA, the Disability Administrators in all Australian jurisdictions are responsible for agreeing on the definitions and overseeing the collection of nationally consistent data on disability services. The CSTDA NMDS is a key way of fulfilling this responsibility, and of reporting publicly on what was, in 2001–2002, a program of $2.7 billion (Australian).

c. How often are they updated? (continuously, annual, ad hoc, etc)

The first data collection was undertaken in 1995. The 2002 collection was the eighth annual collection and the sixth fully national collection. It was also the final collection conducted on a 'snapshot' basis (that is, on a single day during each year). The newly developed collection was implemented nationally in late 2002. Future data from this collection will provide a picture of the services and their users over the full year.

Data are collected by each State and Territories and sent annually to the AIHW that collates and manages the national collections.

2. Brief summary of registers

a. Describe what information on disability is collected

The data provide details of the service outlets providing CSTDA-funded disability services and the numbers of consumers using the services and some of their characteristics. Information on disability includes: disability groups (e.g. 'intellectual', 'physical', 'vision' and 'hearing'), the need for personal help or supervision in the areas of self-care, mobility, communication, interpersonal interactions and relationships, learning, applying knowledge and general tasks and demands, education, community and economic life, domestic life and working. Information about service consumer's carer arrangements, living arrangements and details on services received is also collected.

b. What uses are given to the data and who are the users?

Since its inception the data have been used for a wide range of purposes such as to:

monitor trends in services and service user profiles;
support planning for future service delivery;
respond to public enquires about services or service users;
respond to ad hoc data requests from specific services or areas; and
substantiate budget submissions relating to disability funding.

For people with disabilities, the data are useful for evaluating the accessibility, appropriateness, efficiency and effectiveness of CSTDA funded services. This should lead to improved services and outcomes.

The collection provides a wide range of users with essential information about disability services and the people who use services. These include, for example, governments at all levels, CSTDA-funded agencies, service users and non-government organisations (such as carers associations).

c. Were users involved in deciding what information to collect?

The users have been involved in deciding what information to collect since the initial development of the collection.

The process of redevelopment focused strongly on asking policy makers and other stakeholders about their main information needs. Input was also sought from government departments responsible for CSTDA-funded services, CSTDA service providers, service users, non-government organisations, carers, peak organisations and anyone else interested in disability services field. The methodology employed throughout the redevelopment gave them the opportunity to comment, participate in and test the redeveloped collections. This process of extensive consultation and field testing aimed to ensure that the CSTDA NMDS reflected the information needs of the disability field.

d. What definition of disability is used?

The collection includes a range of data items to describe the functioning and disability profile of CSTDA service. The ICF provided a useful framework for the data development of this collection. Two key data items on disabilities are: 'disability group' and 'support needs'.

'Disability group' is the name given to the common terminology used in the field to group disabilities. The grouping is a broad categorisation of disabilities in terms of the underlying, health condition, impairment, activity limitations, participation restrictions and environmental factors. Thus, 'disability group' is a one-dimensional representation of a multi-dimensional concept, 'disability'.

Service users were also asked to nominate a 'primary' disability group and any number of 'other ' significant disability groups. 'Primary disability group' is that disability group that most clearly expresses the experience of disability by a person. The primary disability group can also be considered as the disability group causing the most difficulty to the person. 'Other significant disability group(s) is defined as disability group (s) (other than that indicated as being 'primary') that also clearly express the experience of disability by a person and/or cause difficulty for the person.

Information about 'support needs' have been included in the collection to provide a national indicator of disability support needs. 'Support needs' are defined as the need for personal help or supervision with activities or participation in each of the life areas (see Question 2a).

e. Are the definitions used in the register(s) compatible with survey or census definitions?

The definitions used in the NMDS collection conform to those of the National Community Services Data Dictionary. Definitions of key disability data items are also designed to be comparable with those of the Australian Bureau of Statistics population disability surveys, in particular the data items on individual support needs.

3. Coverage

a. What population is covered in the register(s)?

The collection covers disability support services receiving some funding under the CSTDA and users of those services. It does not include services that do not receive CSTDA funding—for instance, many services in the areas of rehabilitation, hearing services, aids and appliances—or those funded solely through the Home and Community Care (HACC) Program. It excludes residential aged care services, hospitals and any services that receive no government funding.

b. How complete is the coverage? (who is included? who is missed out?)

There are some variations between the States and Territories in the services included under the CSTDA. Therapy services are not included separately in the collection by all States and Territories, although some therapy services may be included as a component within other service types. Not every State or Territory includes psychiatric services or early childhood intervention services.

Before the implementation of the full-year data collection, the data had only been collected, since 1994, on one 'snapshot' day in the year and had been therefore not been able to represent the full picture of disability services and their users. Full-year data will be available from 2002–2003.

c. How is/are the register(s) evaluated for completeness?

No evaluation for completeness of the data collection has been conducted. However, when the full-year data are available, some evaluation may be carried out as part of the assessment of data quality.

d. Manner of updating the register(s)? (automatic from computerised form, from paper form, other?)

The collection of information uses both computerised and standardised paper forms.

4. Highlight some of the strengths and limitations of your administrative register(s)

Some of the strengths of the CSTDA NMDS include:

the ICF was used as a conceptual framework in the process of the redevelopment, in particular the development of data items relating to support needs;
the newly developed NMDS conforms to national data standards and various data developments in the community services field; and
the NMDS contains a range of collection materials such as Data Guide, Data Dictionary, Network Guide, Data Transmission and Technical Guide and Training materials.

These strengths enable collections of complete, nationally comparable data on disability services funded under the CSTDA. The move from a 'snapshot' day collection to a full-year data will provide a profile of all people receiving a CSTDA funded service in a financial year and will significantly increase the power of the information collected.

The collection also contains a statistical linkage key. The linkage key has been an invaluable tool with the collection, not only for its original purposes of removing double counting and enabling more precise estimates of client numbers to be made. It also enables analysis of patterns of multiple service use to be carried out. Moreover, the linkage key can identify some data inconsistencies in near-marching records, thereby enabling data quality to be enhanced.

One of the limitations of the collection is that it cannot meet all the information needs sought by the policy makers. A notable example of information needs not met by the collection is the issue of unmet needs for services. This issue was raised in the process of redevelopment and various options were carefully considered. There were further discussions of the process of estimating unmet need in a recent AIHW study on this topic, including a discussion on the possible further development of registers and waiting lists to produce the data aligned to the CSTDA NMDS services data (AIHW 2002).

References

Australian Institute of Health and Welfare (AIHW) 1999. Australia's welfare 1998: services and assistance. Canberra: AIHW.

Australian Institute of Health and Welfare (AIHW) 2001. Australia's welfare 2001. Canberra: AIHW.

Australian Institute of Health and Welfare (AIHW) 2002. Unmet need for disability services: effectiveness of funding and remaining shortfall. Cat. no. DIS 26. Canberra: AIHW.

Australian Institute of Health and Welfare (AIHW) 2003a. Australia's national disability services data collection: redeveloping the Commonwealth-State/Territory Disability Agreement National Minimum Data Set (CSTDA NMDS). Cat. no. DIS 30. Canberra: AIHW (Disability Series).

Australian Institute of Health and Welfare (AIHW) 2003b. Disability support services 2002: national data on services provided under the Commonwealth/State Disability Agreement. AIHW cat. no. DIS 31. Canberra. AIHW: (Disability Series).

Australian Institute of Health and Welfare (AIHW) 2003c (forthcoming). Australia's welfare 2003. Canberra: AIHW.

Australian Institute of Health and Welfare (AIHW) 2003d (forthcoming). National community services data dictionary Version 3.0. Canberra: AIHW.

Data on each annual collection have been published by the AIHW. For more information see the AIHW web site (www.aihw.gov.au). A subset of the data is also available for interragation on the web site as interactive data cubes (www.aihw.gov.au/disability/datacubes/).

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