Ros Madden

Eligibility, the ICF and the UN Convention: Australian perspectives

The UN Convention on the Rights of Persons with Disabilities, in Australia, acts as a philosophical and moral statement and framework guiding integrated and strategic policy across the nation. Broad policy agreement has been reached by governments, and both the government and non-government sectors are developing strategies for implementation or evaluation. There is however a need for a more integrated approach to disability policy and information, reflecting all three components of the Italian project:• legislation and a high level philosophical framework and policy guide;• a technical framework that can underpin specific policies and programs aiming to achieve the major goals; and ,• a language and set of tools, relating to both the above, that provide infrastructure for assessment methods and information systems.The International Classification of Functioning, Disability and Health (ICF) is the ideal tool to support the latter two components, consistent with the UN Convention. While the ICF has been used as the basis for national data standards, in population surveys and in the national data collection on disability support services, there is considerable scope for greater use of it, including using all domains of the Activities and Participation and the Environmental Factors component for policy, information and service provision, to advance a disability-inclusive society. Information available from the income support system and from generic services could be enhanced by reference to the ICF components. It would be of significant national value in Australia, especially as a ‘continuum of care’ is desired, if consistency of concepts and information were expanded across health and social welfare sectors. It would then be possible to obtain consistent data from health, aged care, disability and community services systems about key aspects of health and functioning, building a consolidated picture of access and experience across these sectors. Without attention to all three components of the Italian project and continuing effort to meet the challenges identified in this paper, it will not be possible to determine whether the goals of Australia’s National Disability Agreement or the ambitions of the Convention are achieved.

Fundamental questions before recording or measuring functioning and disability

Purpose: This paper seeks to contribute to thoughtful description, recording and measurement of functioning, by discussing some fundamental questions to consider before starting, framed as: why, what, how and who. Method: Generic literature on measurement methods and the more specialised literature on application of the ICF over the last decade inform the consideration of these questions. The context of recording or measurement is examined, including the moral and legal framework of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and the technical framework of the International Classification of Functioning, Disability and Health (ICF). Results: Whatever the setting in which describing, recording or measuring is being undertaken – in policy development, service planning and management, clinical management or population health monitoring – determining the purpose is the key starting point. Purpose (why) frames the consideration of content (what), method (how) and source (who). Many generic measurement methods can be applied in the disability field, but there are challenges particular to the field. The perspectives of people with disabilities and “patients” require consideration, especially with the trend to person-centred care and the social justice principles emanating from the UNCRPD. Conclusions: Considering these basic questions is a pre-requisite to meaningful recording and measurement of functioning and disability. Future challenges include: incorporating environmental factors into measurement; setting thresholds on the disability spectrum; and combining the views of the person concerned with those of various professionals. Implications for Rehabilitation Partnership with people with disabilities in their rehabilitation is based on their co-ownership with service providers of the questions that drive the assessment process. Asking basic questions of the assessment process – such as why, what, how and who – demystifies its intent and outcomes for people receiving rehabilitation services and contributes to genuine partnership in the provision of rehabilitation services. Validity of measurement depends on both the evidence for and the consequences of score interpretation. The consideration of these basic questions will contribute to the validity of rehabilitation assessment.

Community-based rehabilitation (CBR) monitoring and evaluation methods and tools: a literature review

Abstract Purpose: To identify and analyse tools and methods that have been reported in the literature for the monitoring and evaluation of community-based rehabilitation (CBR) programmes. Method: A literature review and descriptive analysis were carried out to scope CBR monitoring and evaluation methods and tools. A search was conducted using PubMed and Google Scholar databases, hand searches and reference lists. Reports were retrieved, screened and information was extracted and analysed against research questions. Results: There were 34 reports which met the inclusion criteria. Analysis of the 34 reports showed that most reports used demographic and programme data. A range of methods were used: interviews, focus groups and questionnaires being the most common. Apart from this, no common standardised procedures or tools were identified and there was not a standard approach to the inclusion of people with disabilities or other CBR stakeholders. Conclusions: The findings suggest that there would be value in creating resources such as guidelines, common processes and checklists for monitoring and evaluation of CBR, to facilitate efficient and comparable practices and more comparable data. This needs to be done in partnership with people with disabilities, CBR providers, partners and researchers to ensure that all stakeholders’ needs are understood and met. Implications for Rehabilitation While there is broad scope and complexity of CBR programmes, there needs to be consistency and a valid approach in the monitoring and evaluation methods and tools used by CBR programmes. The principles of CBR and CRPD require that monitoring and evaluation involve people with disabilities, CBR managers and staff not only as informants but also in the design and execution of monitoring and evaluation activities. The consistent use of appropriate and valid monitoring and evaluation methods and tools will contribute to developing a stronger evidence base on the efficacy and effectiveness of CBR.

New directions in health care and disability: the need for a shared understanding of human functioning

Objective: Human ‘functioning’ is about how people live on a day‐to‐day basis. This paper sets out the case for adopting a common language about functioning that would improve population health information and information sharing across health and community service systems.

Design and quality of ICF-compatible data items for national disability support services

Purpose. To examine the structure, distribution and interrelationships of International Classification of Functioning, Disability and Health (ICF)-compatible items in Australias national data collection about disability support services. Method. Rasch analyses were carried out on 93,000 records relating to people aged 15 to 64 years, receiving disability support services in Australia in 2003. The range of disabilities and services received was diverse. ‘Support needs’, in all nine life areas based on the ICF Activities and Participation domains, are recorded in the national data collection in one of the following three categories: ‘needs no help/supervision in this life area’; ‘sometimes needs help/supervision’; or ‘always needs help/supervision or unable to do activity’. Results: The results of the analysis demonstrate the value of the ‘support needs’ questions. The three categories of need for support were distinct and widely separated; the ICF domains were also found to be distinct. The results also showed that ‘support needs’ in one subset of ICF Activities and Participation domains could not be used to predict values in another subset. Conclusions. The two-dimensional question about ‘support needs’ offers promise as a general data capture tool for indicating ‘extent’ of disability. Caution should be exercised in the omission of any ICF Activities and Participation life areas for measurement in diverse populations.

Your ideas about participation and environment: a new self-report instrument

Abstract Purpose: To examine the meaningfulness, usefulness and acceptability of a new self-report instrument: “your ideas about participation and environment” (YIPE). Method: Cognitive interviewing was employed with 10 adults with disabilities to explore YIPE questions and formatting. Thematic content procedures were used in data analysis. The instrument was revised; participants were re-interviewed and data were re-examined. Results: Participants considered the YIPE as a helpful tool to assist with developing person-centred goals and communicating their needs to health professionals, thus establishing its meaningfulness. They believed it could be useful at various points in the intervention process (e.g. preparation, monitoring, and evaluation). Participants also endorsed the YIPE’s computer-based format, thus confirming its acceptability. Conclusions: The findings support the meaningfulness, acceptability and usefulness of the YIPE and consequently its potential for empowering service users and promoting person-centred care. Using the International Classification of Functioning, Disability and Health as the basis resulted in an instrument that was appropriate for understanding the interrelationship between participation and the supportiveness of the usual environment in which participation generally takes place. Implications for Rehabilitation The YIPE is a useful tool to assist with developing person-centred goals, communicate needs with health professionals and it can be used at various points in a therapy process (preparation, monitoring or evaluation). The interrelationship between participation and the environment is important to consider when measuring functioning. Self-report empowers people to play an active role in interactions with health professionals and promote their own care.