Workshop on Improving Disability Data for Policy
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Country Papers : Australia
ICF Australian User Guide and implementation of the ICF in Australia
Paper prepared for the UNESCAP Workshop on improving disability data for policy use
Australian Institute of Health and Welfare (AIHW)
This paper provides a brief overview of the ICF Australian User Guide and outlines current major ICF applications in Australia, including both national disability data collections and a range of other special applications. The paper is based on the ICF Australian User Guide (AIHW 2003a) and a number of Australian reports on disability data collections, disability statistics and needs for disability services in Australia.
1. ICF implementation activities in Australia
In Australia, there are a number of ICF implementation activities that have been conducted, or are under way.
The Australian Institute of Health and Welfare (AIHW) is the Australian Collaborating Centre (ACC) for the WHO family of international classifications. Development of the ICF Australian User Guide is one of a number of strategies used in the ACC to implement the ICF and to promote its use (see next section). Other main ICF implementation activities include:
2. What is the Australian ICF user guide?
Purposes of the user guide
The Australian User Guide for the ICF is a complement to the ICF. The purpose of the user guide is to promote the use of the ICF in Australia, by:
The guide is designed to help users relate the ICF framework and classifications to their own measurement purposes and decide at what level to use the classifications.
For whom is the user guide written?
The User Guide is designed for people:
Users could include: people with disabilities or advocates; policy makers in government or non-government organisations; health and allied health educators, practitioners and researchers; people designing data systems about services for people with disabilities; researchers in the fields of rehabilitation, human movement, social security, employment; and people designing surveys, clinical studies or assessment methods.
3. What is in the Australian ICF user guide?
The user guide contains information about practical use of the ICF in Australia, including information on current and planned applications of the ICF in Australia. The guide also provides the basis for establishing a user network, and a way of sharing experience and knowledge, and putting users in touch with one another. This section outlines some main contents of the guide.
Benefits of using the ICF for Australia
Why should we think about using the ICF? Section 3 of the user guide provides an overview of potential applications, past uses of the ICIDH (the predecessor of the ICF), and inquiries AHIW has received from people wishing to use the classification.
One example of the benefits is the added value of the ICF for Australian disability statistics. The disability field, like any major policy field, needs information to inform debates and decision-making about policy, desirable outcomes or resource allocation. Part of the information we need is quantifiable data-numbers.
Once we decide that we want numbers we then have to decide-What numbers? What do we want to count? Why do we want to count it? How can we go about getting reliable and valid data relating to what we want to count? These questions lead to important and complex conceptual challenges.
In 1995, 1997 and 2001 AIHW was asked by Australian governments to make some estimates of unmet need for disability support services in Australia (AIHW: Madden et al. 1996; AIHW 1997, 2002). AIHW produced a number of key findings and estimates of the need for services that were used to inform policy decisions and discussion, including the negotiations of the Commonwealth/State Disability Agreement and provision of new funding for services.
How were these estimates arrived at? The preparation of these estimates relied crucially on a small number of common concepts present in both the Commonwealth/State Disability Agreement (CSDA) and in the national population disability survey, conducted by the Australian Bureau of Statistics (ABS).
The target group for disability support services is defined in the Agreement in terms of specific impairments, reduced capacity for communication, learning or mobility, and the need for ongoing support-all concepts which can be mapped to the ICF.
While several data sources were used, the foundation stone of the AIHW estimates of unmet need has been the use in the ABS disability survey and the CSDA itself of similar concepts and terms-in particular, the focus on the need for assistance with activities of daily living. This commonality arose from the fact that elements of the ABS disability survey and the CSDA eligibility criteria could be readily mapped to a common framework-the internationally recognised concepts of the ICIDH for the 1997 study, and the ICF for the 2002 study (see Section 6).
ICF and the traditional approach to defining disability
The traditional impairment-focused approach often uses a non-comprehensive list of selected impairments as the criteria to define disability. Some countries in Asia and Africa have generally used survey screening questions that are impairment-focused and limited in scope (Chamie 1989); for instance, screening questions that might be targeted to identify people who have vision impairment, hearing impairment, paralysis or amputation.
The ICF provides a much more meaningful and comprehensive framework for defining and measuring disability, compared with the traditional approach. The experience of disability is often complex and multi-dimensional. In the ICF, functioning and disability are multi-dimensional concepts, relating to the body functions and structures of people, the activities they do, the life areas in which they participate, and the factors in their environment which affect these experiences. In the ICF, a person's functioning or disability is conceived as a dynamic interaction between health conditions and environmental and personal factors (WHO 2001).
Practical advice on getting started using the ICF
Section 4 of the Australian user guide gives some brief practical and general advice on getting started. It suggests a checklist of steps for new users.
(1) Start by reading Section 2 of the user guide to ensure a broad understanding of the ICF.
(2) Then think about how your ideas and information needs fit the ICF framework by answering the following questions:
(3) At what level do you want to use the ICF?
(4) What information is already available?
It is always worth investigating whether the information you need already exists.
(5) What can be learnt from other similar applications?
The user guide provides suggestions and relevant approaches to these issues. It also uses an example of getting started in the Australian education sector to illustrate the key steps for defining disability for policy use.
Other main contents in the user guide
The Australian user guide contains other useful information to help the users, for example:
The user guide also illustrates how users can record their experience and share knowledge in Australia.
The rest of this paper discusses some current major applications of ICF in Australia, and briefly outlines other special applications of the ICF.
4. The ICF and disability data elements in Australian national data dictionary
Australia has a broad policy on disability and requires a wide range of data to describe the status of people with a disability in the population and their access to services. The collection of national data on services provision and outcomes for people with a disability is challenging. In particular there is a need for better quality data from administrative sources. The administrative data should be comparable across time, across State and Territories, and across various health and welfare policy programs. Furthermore, the disability statistics from administrative sources should be able to be compared with population survey and census data on disability, for example, to estimate the need for services and access to services by particular population sub groups such as the Australian Indigenous population.
Use of the ICF framework for a wide range of data
Many different definitions of disability are used in Australia for various purposes. They range from broad inclusive definitions such as those for population survey and anti-discrimination legislation to more exclusive definitions, for example, definitions for disability pensions, care payments and disability support services. It has been recognised that the goal of disability data development was not to arrive at a single definition of disability but rather to define terms that could be used to relate definitions and data from different administrative systems to each other (AIHW: Madden & Hogan 1997).
The basics of good disability data are well-defined data elements based on consistent disability concepts and a common framework. After years of discussion, consultation, study and testing for disability data development, the ICF is accepted in Australia as a useful conceptual framework for national disability data. The data development process confirms that most of the main disability definitions used in Australia can be mapped to the ICF and that ICF is a useful base on which to draft data elements for national data dictionaries.
Working towards national consistency on data collections
To facilitate the development of data for reporting purposes, the relevant agencies of the Australian federal and State governments and two statistical agencies (the Australian Bureau of Statistics and the Australian Institute of Health and Welfare) have signed four national information agreements for the fields of health and welfare. The agreements provide structures and consultative mechanisms through which governments can work cooperatively, with a national perspective, to develop, improve, maintain and share national information on Australia's health and welfare.
One of the main products resulting from these agreements is the National Community Services Data Dictionary Version 3 (AIHW 2003b). The dictionary contains national information models, and associated data elements. It also provides a menu of major national collections in these fields.
The ICF and national disability data elements
Five disability data concepts and ten data elements are included in the National Community Services Data Dictionary, each accompanied by definitions and guides for use. The five disability data concepts are: Disability; Functioning; Activity-functioning, disability and health; Participation-functioning, disability and health; and Assistance with activities and participation.
The ten data elements are: Body functions; Body structures; Impairment extent; Activities and participation domains; Activity - level of difficulty; Participation extent; Participation - satisfaction with; Environmental factors; Environmental factors - extent of influence; and Disability grouping.
The disability data elements can be used to build specific purpose data collections containing data elements consistent with national standards; and relate two or more data sets by mapping existing data elements to the standard data elements.
5. Applying the ICF to a national disability service data collection
The Australian Commonwealth/State Disability Agreement (CSDA) Minimum Data Set (MDS) is the main administrative national data collection used in Australian disability services sector. The data contains information about services and service users under the agreement (AIHW 2003c). The first data collection was set up in 1994. After a process of redeveloping the existing data set, a new MDS was implemented nationally in October 2002. The data set comprises a set of data items and definitions as well as an agreed method of collection and collation.
The ICF was used when redeveloping the national disability data collection. In the case of developing possible new data items to describe the disability and functioning of service users, the ICF was used as a conceptual framework to organise thoughts and ensure that major areas of interesting are not omitted from the MDS (AIHW 2003d). The ICF Activities and Participation component and qualifiers were applied in two main areas of data redevelopment: support needs and participation outcomes. The next section gives a brief on the process of applying the ICF to develop the 'support need' framework.
Using the ICF to develop a 'support needs' framework
The CSDA MDS contains an indicator of disability support needs. The Australian National Disability Administrators were interested in developing high-level support needs indicators, to which the data items collected in 'local language' in each State or Territory could be mapped. The aim was not to standardise the assessment of individuals at local level but to clarify the concepts used to describe people's support needs so that information gathered during assessment could be mapped up to a national indicator or indicators and used for national comparison. Therefore, the ultimate objective was to develop options for a summary of ratings or indicators of support needs, taking consideration of a number of requirements, namely that the framework should:
The ICF provides a framework rather than a universal definition. In the process of redevelopment, the ICF domains and scales were used as a central comprehensive framework and ABS survey measures were used to indicate support needs in each domain. The review of existing assessment tools confirmed its usefulness as a framework for support needs in the collection.
All chapters within the Activities and Participation component of the ICF are included in the support need framework. The support needs scale relates directly to the population disability survey, enabling comparison with population data (Table 1).
Table 1: Support needs framework or 'information matrix'
How often does the service user need personal help or supervision with activities or participation in the following life areas?
Source: CSDA NMDS Service User Form, 2002
6. Applying the ICF to a national study on unmet need for disability services
This section uses an example of a national study on unmet need for disability services to show that applying the ICF framework to disability data collections from various sources may greatly facilitate policy decision-making and service planning.
AIHW was commissioned by the Australian National Disability Administrators to conduct a project on unmet need for disability services (AIHW 2002).
Using the ICF framework to maximise the comparability of various disability data
The study on unmet need for disability services relied on a combination of various data sources including population disability surveys and administrative data collections on disability. Use of the ICF framework and its major concepts has promoted the comparability of these various disability data. In order to estimate the unmet need for disability services, the ABS disability survey data were used as a starting point to provide baseline estimates-potential target population for disability services. The data from States and Territories' registers of unmet need for services are used more directly as a parallel source of data to estimate unmet need. Then these two primary data sources, together with other data, are compared and combined to arrive at consolidated estimates of unmet need. This process of estimation, verification and cross checking using multiple disability data sources would not be possible if the ICF framework and its major concepts had not been used in the development of these data collections.
The comparability of the service data and the population disability survey data enables a comparison of the profile of support needs for disability service clients and the profile of needs for 'potential clients' based on analysis of the population disability data. As discussed in the previous section, the CSDA MDS data on support need are framed around the ICF domains for activities and participation, and record the assistance needed in ways that promote comparability with population disability data and with common assessment tools in the Australian disability field. The ABS population disability surveys have, since starting in 1981, attempted to relate conceptually to the ICF as it emerged, and its predecessor, the International Classification of Impairment, Disabilities, and Handicap (ICIDH), for the same comparability purposes.
Using the ICF to create a relationship framework for support needs and type of services
The data on support needs in CSDA MDS are about an individual's overall support needs for particular activities or participation such as self-care or mobility, rather than their support in terms of specific services required such as accommodation services. This is also true for the population disability survey data. Thus, a key step in the unmet need study was to create a relationship framework that can relate support need with activities to service needs, considering the desired or reasonably expected practice in the disability field. The ICF broad domains for activities and participation have been used to guide the construction of this relationship framework. The framework is developed to allow population disability data, CSDA MDS data and the CSDA targe group and CSDA service types to be related (Table 2).
Table 2: Relating ABS population data to the need for CSDA services
(a) The life domains in the left-hand column are as listed in the ICF, the International Classification of Functioning, Disability and Health (World Health Organization 2001).
(b) Activities of daily living (ADLs), as mentioned in CSDA target group definition, are highlighted in bold.
7. Other applications of the ICF in Australia
This section outlines some other current applications of the ICF in Australia. More information can be find in the ICF Australian User Guide (AIHW 2003a). Addresses for correspondence relating to these applications are included in the user guide.
The use of ICF framework in an allied health outcome measure: Australian Therapy Outcome Measures (AusTOMS)
Rehabilitation services often involve many professions working with the same client. Without a common language and measurement for describing outcomes, clinicians are hampered with sharing information about client progress across disciplines. Even clinicians within the same profession often use different language to relate goals and outcomes. The AusTOMS project aims to develop a valid, reliable and clinically relevant measure to reflect the outcomes of therapeutic input provided by clinicians in the allied health disciplines of speech pathology, occupational therapy and physiotherapy.
Measuring outcomes not only includes an assessment of impairment but also functional and social limitations. The project team, in consultation with clinicians, considers that the ICF framework and key concepts are relevant to all the three disciplines in Australian clinical context. Applying the ICF framework and key concepts across disciplines will also enable comparisons of outcomes across these disciplines.
The AusTOMs tools use the ICF as the basis for the headings and concepts of three out of four 'domains'. The AusTOMs tools can be used to measure changes in clients' impairment, activity limitations and participation restrictions as well as wellbeing/stress. Each domain is rated on an ordinal scale with six defined points, where 0=most severe, and 5= no difficulty. Each domain is independent of the others. A client may show no progress in one domain, while demonstrating great progress in another.
The project at La Trobe University has been carrying out in four stages. The final version of the tools will be published. More details can be found in the ICF Australian User Guide.
Contact: Jemma Skeat, Research Associate, School of Human Communication Sciences, Latrobe University.
Address for correspondence: J.Skeat @ latrobe.edu.au.
The ICF and classification for disability athletics
Sport plays an important role in the lives of people with a disability. It provides valuable means of enhancing health and opportunities for recreation, social interaction, and the pursuit of athletic excellence. Four major disability classification systems are currently used in disability athletics at the Paralympic Games and many other national, state and local level competitions throughout the world. The general purpose of disability sports classification systems is to define eligibility and ensure that competition among eligible athletes is fair.
A module for a unified disability athletics classification is provided by an Australian researcher, Sean Tweedy, at the School of Human Movement, University of Queensland. The module analyses the purpose, structure and language of the four current disability athletics systems using the ICF. It then establishes a rationale for a single, unified system based on the language and structure of the ICF. It also provides examples of how the ICF can be used to improve a unified disability athletics classification.
The analyses of the current systems indicate that the criteria for defining eligibility by health conditions/impairment type lack clarity and effectiveness due to the use of terms that are not standardised. The standardised language of the ICF would eliminate such ambiguities, reducing both the likelihood of confusion and opportunity to challenge decisions based on the criteria. The ICF codes could be used to help define eligibility. Codes b710-b799 (Neuromusculoskeletal and Movement-Related Functions), s110-s199 (Structures of the Nervous System), and s710-s799 (Structures Related to Movement) best describe the populations covered by the four current systems and would be most appropriate starting point.
There are obvious discrepancies and gaps in the rationale establishing minimal disability criteria between the current systems. The module suggests a need for documentations of a sound rationale and description of minimum disability criteria stated in terms consistent with the ICF.
Contact: Sean Tweedy, Research Fellow, School of Human Movement, University of Queensland.
Address for correspondence: seant @ hms.uq.edu.au.
The ICF and oral health
Oral diseases have a substantial impact on well-being of individuals and population due to several special features of structure and function of the month. Gary Slade and Anne Sanders of the Australian Research Centre for Population Oral Health provided recommendations for assessment of oral health using ICF framework. These recommendations were based on a review of the conceptual and methodological approaches to measuring oral health within the evolving frameworks of the ICF and its predecessor ICIDH, and recent findings from national surveys conducted in Australian and the UK populations.
The ICF/ICIDH has been a major driving force in a revolution in the conceptual basis and empirical methods for evaluating oral health. In last decade, significant progress has been made in measuring oral health within an ICF/ICIDH framework. This progress has extended beyond the confines of a clinical focus on disease and tissue destruction and aims to document the full impact of oral disorders on the populations. Specific references to the oral cavity within the current ICF classification occur for seven body functions (b28010, b5100-b5105) and five Body Structures (s3200-s3204). The mouth and face are involved directly in six forms of Activities and Participation (d330, d5201, d550, d560, d5701, d7105).
These conceptual developments were matched by a surge in developing instruments to measure oral health and its consequences. Oral Health Impact Profile (OHIP), which consists of 49-items (questionnaires), was developed in Australia. The OHIP is one of the few comprehensive measures of oral health that incorporates the social dimension of health thoroughly. It has used the ICIDH conceptual framework and remains well aligned to the new concepts of the ICF. A shorter, 14-questinnnaire version of OHIP has also been developed and has been used in two recent surveys of samples representative of the adult populations in Australia and the UK.
New work is starting to develop measures suitable for children and other population subgroups. Additional work is needed to move beyond classification and quantification in population health surveys to evaluate interventions that may improve health outcomes captured in the ICF framework.
Contact: Gary D Slade and Anne Sanders, Australian Research Centre for Population Oral Health, The University of Adelaide.
Address for correspondence: gary.slade @ adelaide.edu.au
The ICF and Rett Syndrome study
Rett syndrome is a relatively rare but serious brain disorder most often affecting girls. In most cases there is a loss of communication and hand skills and the development of unusual hand movements. In the long term, most children are no longer able to talk and many find it difficult or are unable to walk.
The Australian Rett Syndrome study started in 1993. The main purpose of the project is to define a population based cohort, which can be used for subsequent clinical and epidemiological studies and followed prospectively. Baseline data on communication, mobility, symptoms and classification have been gathered since 1993. In 2000, data have also been collected on functional ability in daily living, behaviour, hand function, medical conditions, and use of health and education services.
The project investigates environmental factors such as equipment and support available to individuals and families and social capital of the communities in which they live is likely to be integral to understanding the effect of this disorder. The ICF framework is used as a conceptual framework and connections for investigating the broad aspects of disability and functioning associated with Rett syndrome, and to identify those factors determined to be most beneficial and cost effective in optimising health, function and quality of life for the affected child and family.
Contact: Helen Leonard, Head, the Australian Rett Syndrome Study, Telethon Institute for Child Health Research.
Address for correspondence: rett @ ichr.uwa.edu.au
The ICF and speech pathology
The Communication Disability in Ageing Research Unit (CDARU) has been using the ICF and its predecessors in the education of speech pathologists and audiologist, in clinical practice with older people with hearing impairment and aphasia, and mostly as a research tool.
The conceptual framework of the ICF is introduced to speech pathology and audiology students and used to frame discussions about communication disability, particularly in relation to speech pathology and audiology assessments and treatments. The framework is used in more detail in a series of aphasia management lectures and in a module about ageing and aged care.
In clinical practice, in order to guide students (and many clients) to think more broadly than the impairment-level, the Participating in Choice (PIC) approach was developed. The PIC approach to clinical management begins with an unstructured interview with the client about his or her communication needs. The main question is "What do you hope to achieve by coming to speech therapy?" The client's goals are then classified according to the ICF components.
In research in communication disability, a number of publications of the CDARU team have used the ICF as a conceptual framework or have investigated the validity of the classification scheme.
Contact: Linda Worrall, Director, Communication Disability in Ageing Research Unit (CDARU), The University of Queensland.
Address for correspondence: l.worrall @ uq.edu.au
The ICF and accident compensation in Australia
Individuals who sustain an injury in Australia may be eligible for a variety of benefits under Accident Compensation, a set of statutory and common law systems generally under the jurisdictions of States and Territories (as distinct from the Commonwealth). More than $10 billion per annum (about 1.5% of Australian GDP) is collected in premiums and paid in benefits under various schemes and insurance.
John Walsh's paper briefly describes the Australian accident compensation system, with particular emphasis on its process of impairment classification, assessment, and entitlement to damages. It argues that this process is fundamentally flawed, and suggests that the framework provided by the ICF may provide a starting point for future development. The main challenge for the use of ICF will be in the transition from a 'framework' to the development of assessment instruments suitable for use at an individual claimant level (e.g. for body structure and function, activity, and participation). Such instruments will be necessary in providing an improved allocation of resources for accident compensation and other statutory entitlement systems.
Contact: John Walsh, Actuarial, PricewaterhouseCoopers.
Address for correspondence: john.e.walsh @ au.pwcglobal.com
The ICF and classification of support needs
A collaborative 3-year project is currently under way between the University of Sydney and the Royal Rehabilitation Centre Sydney (RRCS), a well established leader in innovative (and state-wide) rehabilitation and disability services, and the Centre for Developmental Disability Studies (CDDS) an independent research and training unit whose mission is the creation and dissemination of knowledge about developmental disability.
The project is developing an innovative, rigorous and robust system of identifying and classifying support needs based on the ICF conceptual framework. The aim of this new system for support needs assessment and classification is to reliably identify the type and intensities of support needed taking into account the complex interactions which characterise disability. A valid system will address the limitations of existing instruments that either over-estimate (lack of sensitivity) or under-estimate (lack of specificity) the support needs of people with a wide range of disabilities in varying situations.
The proposed project is expected to demonstrate:
Contact: Prof Trevor R. Parmenter*, Director, Centre for Developmental Disability Studies.
Address for correspondence: trevorp @ med.usyd.edu.au
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