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Using a common framework of definitions and classifications can add value to many activities in the disability field and ultimately to the policies and services designed to meet the needs of people with a disability.
Gathering meaningful information
The disability field, like any major policy field, needs information. In debates about policy, desirable outcomes, or resource allocation, information is essential for effective decision-making and reform. And part of the information we need is quantifiable data-numbers. Numbers can paint part of the picture, tell part of the story-not the whole story, but a potentially useful part of the story.
Once it is decided that numbers are needed, various questions arise-for example: 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 that must be dealt with effectively if we are to gather valid and useful information.
An example: estimating unmet need
In 1995, 1997 and 2001 the AIHW was asked by Australian governments to make some estimates of unmet need for disability support services in Australia (AIHW 1997a, 2002b; Madden et al. 1996). Some of the key findings of the 1997 study were:
In 1996 there were an estimated 13,400 people with an unmet demand for accommodation, accommodation support or respite services.
There was an unmet demand for the equivalent of 12,000 full-time places for day programs.
The estimated costs to Australian governments of providing these additional services totalled $294 million annually, comprising $178 million for accommodation services and $116 million for day programs.
Additional future pressure on disability services was expected as a result of population ageing and the ageing of carers.
In 1993 there were an estimated 7,700 parents who were the principal carers of people with severe disabilities. About half of these parents had been providing this care for more than 30 years.
These estimates informed multilateral negotiations resulting in the provision by governments of an additional $519 million over the 2 years 2000-01 and 2001-02. The preparation of these estimates relied on a small number of common concepts present in both the Commonwealth/State Disability Agreement (CSDA) and in the main disability survey, now conducted every six years by the Australian Bureau of Statistics (ABS). In the Agreement, the target group for CSDA services was defined in terms of specific impairments, reduced capacity for communication, learning or mobility, and the need for ongoing support1. The concepts on which these definitions were based were similar to those used for gathering population data in the ABS survey.
While several data sources were used, the foundation stone of the AIHW estimates of unmet need was the use of similar concepts and terms in the ABS survey and the CSDA itself-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 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 (e.g. AIHW 2002b:24).
The use of a common framework, with its common definitions and classifications, thus helps to produce meaningful information for decision making and policy development-and increases the likelihood of improved outcomes for people with disabilities.
The value of consistency
A number of significant national reports have called for common data frameworks and definitions in the disability field. Why does consistency matter so much?
The effects of disability may be experienced in any aspect of the lives of people with a disability and their families. This means that definitions underlying data collections need to be not only clear and meaningful, but also holistic and consistent across all areas of life and all services. Otherwise, data cannot be used efficiently. Studies relying on the combined use of several data sets cannot produce the kind of detailed, authoritative findings that were possible in the study of unmet need discussed earlier in this section.
In a broader sense, consistent concepts and definitions would also lead to succinct, nationally consistent disability questions, identifiers and descriptors that could be used for generic services as well as for disability-specific services. We would then be able to, for instance:
estimate how many people with disabilities worked in various industries
estimate what use people with various kinds of disabilities make of health services
say how many children with various support needs were attending regular schools, or special schools or classes, in each state and territory
compare outcomes for people with similar disabilities and needs in different service types
compare access to facilities and services many people take for granted, for instance sporting clubs, radiology services (e.g. mammograms)
compare health outcomes for people with various disabilities and for people with no disability.
Identifying and evaluating outcomes
In any field, people need to identify and evaluate outcomes in order to achieve improvement. Having a common framework for analysing outcomes helps to provide a clearer picture of those outcomes across the entire field and indicate areas where improvement may be needed.
The concept of participation presented in the ICF has been used in Australia for this purpose. (AIHW 1997b:334-42; AIHW 1999:255-63). Population survey data were analysed to look at participation of people with a disability in relation to living arrangements and self-care; housing and homelessness; self-perceived health; mobility and transport; communication; social relationships and community life; time use and leisure; education; employment; and economic life. Findings included:
A decline in the proportion of people aged under 65 with a 'profound or severe core activity restriction'2 living in 'cared accommodation', from 9.9% in 1981 to 2.6% in 1998 (AIHW 1999:256). This trend, in line with Australian governments' explicit policy of de-institutionalisation, was accompanied by a large rise in the number and percentage of such people living in households, usually with families.
People aged 15 years and over with a disability tended to report lower levels of health than the general population. 'Poor health' was reported by 11.0% of people with a disability and 'excellent health' by 8.6%. In comparison, 4.0% of the general population reported 'poor health' and 19.5% reported 'excellent health'.
A total of 723,100 people of all ages with a disability needed assistance with mobility in 1998. Of these, 89.9% received assistance from informal care providers, 17.7% received assistance from formal services, and 7.9% did not receive the assistance they needed.
People with a disability had lower labour force participation rates (53.2%) than the general population (75.6%), and generally higher rates of unemployment (AIHW 1999: 261-2).
Achieving potential benefits of the ICF
So far in this section it has been said:
definition and classification in the ICF are not about labelling and assessment
to the extent that consistent disability definitions in Australia have been available, they have been put to good analytical use, in ways that can improve services for people with disabilities.
The goals of the ICF are broad and the aim is to make the classification meaningful to people with a disability, to those involved in making relevant social policy, and to a range of service providers and health-care workers. These broad goals have been set in recognition of the very wide interest in disability and the wide variety of potential uses and users. The more a conceptual framework is meaningful to a wide variety of people, the more 'validity' it may be supposed to have, and the more these different users will be talking the same language and working towards the same goals.
WHO and the Collaborating Centres have listened and responded to past criticisms of the ICIDH and have brought the ICF into line with newer visions, for instance, the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities and the social model of disability.
If it is desirable to see people with a disability, policy makers, therapists, physicians, employment agencies and others exchanging ideas in a more common framework, then it is worth spending some time trying to use the ICF as a common framework.
Rachel Hurst of Disabled Peoples International (1998) writes of her reasons for participating in the drafting of the ICF, despite the inherent challenges:
In a perfect world we would prefer to have no classification at all.However, for the purposes of statistics, assessment for services and programs and above all for non-discrimination legislation, we do need to have a definition of who we are and of our situation and we reluctantly accept that this means some sort of classification or analysis of disablement.
Good data are needed in the disability field. The potential reward of good data is better policy. Policy clearly drives data collection, and so it should, but relevant data inevitably inform policy development and evidence-based approaches to service and treatment development. Good data require well-defined data items, which are part of a meaningful, holistic framework. Otherwise there will only be bits and pieces of unrelated data.
1 The CSDA target group was people with a disability attributable to an intellectual, psychiatric, sensory, physical or neurological impairment or acquired brain injury (or some combination of these) which is likely to (a) be permanent and (b) result in substantially reduced capacity in at least one of the following: self-care/management, mobility or communication; and requiring ongoing or episodic support.
2 People with a 'profound or severe core activity restriction', according to the ABS survey, always or sometimes need assistance with self-care, mobility or communication (ABS 1999). 'Cared accommodation' includes hospitals, aged care homes and children's homes.
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