Developing administrative data collections

Nicola Fortune
Australian Institute of Health and Welfare

The Australian Institute of Health and Welfare…

• a Commonwealth statutory authority
• we develop, collate, analyse and disseminate national data on health & welfare
• required to report each year to Parliament
• nationally significant data holdings protected by strong privacy legislation
• undertake commissioned work of national significance, where it is to be placed in the public domain
• Australian Collaborating Centre for the ICF and ICD

National data on disability and disability services & the AIHW role

• Develop, collate, analyse and report national data on disability and disability services:
  • Disability prevalence
  • Services and assistance: disability support services, income support, generic Services, informal care
• Outcomes for people with a disability

Administrative data collections—outline of presentation

• What are administrative data collections?
• The Australian disability services data collection
• Developing administrative collections
• An example: ‘Support needs’ data item based on the ICF

What are administrative data collections?

• Data collected in the normal course of service provision
• Not as resource-intensive as surveys
• Data are available on a regular basis (e.g. annually)
• Information only about people receiving services
• Information useful to a range of stakeholders, e.g. service providers, higher level bureaucrats, disability consumer groups, researchers

Commonwealth–State/Territory Disability Agreement (CSTDA)

• Agreement between Commonwealth, State and Territory government departments responsible for disability services
• National program of specialist support services for people with a disability who need support with self-care, mobility or communication

CSTDA definition of disability

• Attributable to intellectual, psychiatric, sensory, physical or neurological impairment, or acquired brain injury
• Likely to be permanent
• Substantially reduced capacity in self-care, mobility, or communication
• Requiring ongoing or episodic support

Types of services provided

• Accommodation support, e.g. group home accommodation, in-home support
• Community support, e.g. recreation programs
• Community access, e.g. day programs
• Respite, e.g. centre-based or in-home respite
• Employment, e.g. supported employment services

The Australian disability services data collection

CSTDA National Minimum Data Set (CSTDA NMDS)

• Data relate to any service funded under the CSTDA, and consumers
• An agreed minimum set of nationally agreed data items collected by all jurisdictions
• Agreed method of collection and transmission
• National data are collated and published each year by AIHW

History of the collection

• First collection in 1994
• Until 2002 it was based on a ‘snapshot day’ approach — data collected on services provided/received on 1 day of the year
• Then the collection was redeveloped
• Data now available on all people who receive a service at any time during the year

Data items on consumers

• Demographics (7 data items)
• Living arrangements (3 items)
• Work, income and funding (4 items)
• Carer information (5 items)
• Service user’s disability (5 items)
• Services received (7 items)

Uses of the data

• It allowed data on disability services to be compared nationally for the first time
• Used to
  • monitor trends
  • develop consumer profiles
  • respond to public enquiries
  • develop budget submissions for disability funding and planning

Examples of data provided by the CSTDA NMDS

• On the snapshot day in 2002:
  • 65,809 consumers received 77,382 services
  • 34% of consumers used accommodation support services (either in institutional or community settings)
  • 57% of consumers were male
  • Median age was 35.4 years for females and 33.2 years for males
  • Intellectual disability was reported by 61% of consumers as their primary disability

Accomodation support services: consumer age profile, 1999 and 2002

Who can benefit from the data?

People with disabilities:

• Better information about service accessibility, appropriateness, efficiency and effectiveness

Service providers:

• Better data to review and plan service delivery

Government:

• Better data for funding & service planning

Developing data items for administrative collections

• The recent redevelopment of the disability services collection provides a good illustration of important
  • structures
  • processes
  • considerations

Redevelopment of the disability services collection

• A response to changes including:
  • Changing services & service delivery
  • Increased need for consistent information to assist accountability, planning, and funding
  • Better technology to assist collection

Goal was to provide better information:

• about who is receiving CSTDA-funded services, what type and how much service
• about multiple service users
• about carers of service users
• for national, state/territory & local planning
• for comparison with other data collections (e.g. data on the Home and Community Care Program)

Purposes of the collection

1. To provide information for senior bureaucrats responsible for funding disability services, to inform policy and high level service planning
2. To provide information for other stakeholders: Service users and carers; Service provider agencies; Disability consumer groups; Other government departments (e.g. Treasury); The public; Researchers

Important components in the redevelopment process

• What do policy makers and stakeholders need to know?
• What data items will produce this information?
• Need for consensus and national consistency
• Consistency with key disability concepts and other data collections (via ICF and national data dictionary)
• Field testing of data items
• Good communications with stakeholders throughout the process

The role of ‘key players’ in the redevelopment process

• National Disability Administrators: responsible for making key decisions
• Facilitation and Implementation Group: provided advice and assistance
  • Included people from government departments, plus non-government and consumers representatives
• AIHW: managed the project

Information needs identified

• How many people were supported—and what were their characteristics and support needs?
• What was received— including some measure of ‘quantity’ of service provided by service type, e.g. staff hours?
• From whom was it received—details of the funded agency, e.g. size, staff profile and hours
• For how much (i.e. cost to government)?
• With what outcome?

The redeveloped collection:

• is an ongoing full year collection (rather than a 1 day snapshot)
• updated & added new data items to reflect changes in the field
• meets a range of information needs
• combines data collection with daily service operations
• is a minimum amount of data

A new data item on support needs of consumers

• The aim
  • To develop a standard indicator of support needs for national comparisons, i.e. a framework into which assessment information already collected by agencies can be mapped
  • Not to develop an assessment tool

How the new support needs data item was developed

• Considerations:
  • Must be comparable with disability population survey data
  • Must relate to existing data standards and current practice in assessing support needs
• Review of literature, data standards, and widely-used support needs assessment tools

Support needs data item

• ‘How often does the consumer need personal help or supervision with activities or participation in the following life areas?’
• Two dimensional information matrix:
  • Life areas (A & P chapter headings)
  • Level of support needed (based on Australian population survey measures

The support needs question

11. How often does the service user need personal help or supervision with activities or participation in the following life areas?

How often does the consumer need personal help or supervision with activities or participation in the following life areas?

Grouping the ‘life areas’

• Self-care, mobility and communication (ADL – Activities of Daily Living)
• Interpersonal interactions and relationships; learning, applying knowledge, and general tasks and demands; domestic life (AIL – Activities of Independent Living)
• Education; Community (civic) and economic life; working(AWEC – Activities of Work, Education, and Community Living)

Support needs of CSTDA consumers

• CSTDA consumers have high support needs:
  • 42% always need help / unable to do ADL
  • 48% always need help / unable to do AIL
  • 58% always need help / unable to do AWEC
• Highest support needs for consumers of accommodation support services, lowest for consumers of employment services

Percentage of consumers needing support in ADLs

Percentage of consumers needing support in AILs

Percentage of consumers needing support in AWECs

Support needs in different living arrangements

• For consumers living alone:
  • 17% were unable to do or always needed help with ADLs, 23% with AILs, 34% with AWECs
• For consumers living with family and/or spouse:
  • 38% were unable to do or always needed help in ADLs, 43% with AILs, 48% with AWECs