Health and Access to Health Services for People with Disability in Australia: Data and Data Gaps.

The right of people with disability to enjoyment of the highest attainable standard of health without discrimination on the basis of disability is enshrined in the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Among its obligations as a signatory to the CRPD, Australia is required to collect appropriate information, including statistical and research data, to inform development and implementation of policies to give effect to the Convention. In this commentary, we first describe how the International Classification of Functioning, Disability and Health (ICF) conceptual model of disability can be operationalised in statistical data collections, with a focus on how this is achieved in key Australian data sources such that people with disability can be identified as a population group. We then review existing statistical data on health and health service use for people with disability in Australia, highlighting data gaps and limitations. Finally, we outline priorities and considerations for improving data on health and access to health services for people with disability. As well as conceptual, practical, and ethical considerations, a key principle that must guide future disability data development is that people with disability and their representative organisations must be involved and participate fully in the development of disability data and statistics, and in their use.

Disability-Related Questions for Administrative Datasets.

High rates of unemployment among people with disability are long-standing and persistent problems worldwide. For public policy, estimates of prevalence and population profiles are required for designing support schemes such as Australia's National Disability Insurance Scheme; for monitoring implementation of the United Nations Convention on Rights of Persons with Disabilities; and for monitoring service access, participation, and equity for people with disability in mainstream systems including employment. In the public sector, creating a succinct identifier for disability in administrative systems is a key challenge for public policy design and monitoring. This requires concise methods of identifying people with disability within systems, producing data comparable with population data to gauge accessibility and equity. We aimed to create disability-related questions of value to the purposes of an Australian state and contribute to literature on parsimonious and respectful disability identification for wider application. The research, completed in 2017, involved mapping and identification of key disability concepts for inclusion in new questions, focus groups to refine wording of new questions, and online surveys of employees evaluating two potential new question sets on the topic of disability and environment. Recommendations for new disability-related questions and possible new data collection processes are being considered and used by the leading state authority.

The ICF has made a difference to functioning and disability measurement and statistics.

AIMS: Fifteen years after the publication of the International Classification of Functioning, Disability and Health (ICF), we investigated: How ICF applications align with ICF aims, contents and principles, and how the ICF has been used to improve measurement of functioning and related statistics. METHODS: In a scoping review, we investigated research published 2001-2015 relating to measurement and statistics for evidence of: a change in thinking; alignment of applications with ICF specifications and philosophy; and the emergence of new knowledge. RESULTS: The ICF is used in diverse applications, settings and countries, with processes largely aligned with the ICF and intended to improve measurement and statistics: new national surveys, information systems and ICF-based instruments; and international efforts to improve disability data. Knowledge is growing about the components and interactions of the ICF model, the diverse effects of the environment on functioning, and the meaning and measurement of participation. CONCLUSION: The ICF provides specificity and a common language in the complex world of functioning and disability and is stimulating new thinking, new applications in measurement and statistics, and the assembling of new knowledge. Nevertheless, the field needs to mature. Identified gaps suggest ways to improve measurement and statistics to underpin policies, services and outcomes. Implications for Rehabilitation The ICF offers a conceptualization of functioning and disability that can underpin assessment and documentation in rehabilitation, with a growing body of experience to draw on for guidance. Experience with the ICF reminds practitioners to consider all the domains of participation, the effect of the environment on participation and the importance of involving clients/patients in assessment and service planning. Understanding the variability of functioning within everyday environments and designing interventions for removing barriers in various environments is a vital part of rehabilitation planning.

Testing and development of an instrument for self-report of participation and related environmental factors - Your Ideas about Participation and Environment (YIPE) among adults with brain injury.

PURPOSE: To examine the usability of the self-report instrument, Your Ideas about Participation and Environment (YIPE), among adults with a brain injury by exploring the value and acceptability of the instrument. METHODS: A qualitative descriptive research design was used for the purpose of testing and developing the YIPE for use among adults with a brain injury. The study involved administering the YIPE followed by in-depth interviewing about the experience of taking the instrument with seven adults with a brain injury, recruited through a community-based support service organization. A descriptive thematic approach was used to analyse the content of the interview data, categorize common ideas and identify areas for improvement within the instrument. RESULTS: Participants were generally positive about the importance of the participation and environment topics and willing to engage in self report. The YIPE (2012), resulting from changes made to the language and structure, was found to be more useable, valued and accepted by these participants than the previous version, YIPE (2011). CONCLUSIONS: The YIPE was found to be a useful tool among study participants. The YIPE topics were found to have importance and relevance when considering participants' satisfaction with areas of life and aspects of environment requiring change. More development of the tool is required in terms of the wording, format and method of administration to improve the overall usability of the instrument. Implications for Rehabilitation The preliminary results from this small sample study illustrated that people with brain injury were able to use an International Classification of Functioning, Disability and Health-based tool, and confirmed the importance of considering both participation and the environment together. People with cognitive impairments associated with brain injury reported on areas of everyday life where they were satisfied or dissatisfied. They related their satisfaction to environmental factors that were facilitators or barriers to valued everyday activities. The opportunity to choose important life areas promotes individuals' motivation to engage and enables service providers to tailor rehabilitation. In the course of the two stages of research, it was necessary to make minor modifications to the language, structure and scoring system of the tool, to simplify the task and shorten the time to interview participants.

In search of an integrative measure of functioning.

International trends towards people-centred, integrative care and support require any measurement of functioning and disability to meet multiple aims. The information requirements of two major Australian programs for disability and rehabilitation are outlined, and the findings of two searches for suitable measures of functioning and disability are analysed. Over 30 current measures of functioning were evaluated in each search. Neither search found a generic measure of functioning suitable for these multibillion dollar programs, relevant to a wide range of people with a variety of health conditions and functioning experiences, and capable of indicating support needs, associated costs, progress and outcomes. This unsuccessful outcome has implications internationally for policy-relevant information for disability, rehabilitation and related programs. The paper outlines the features of an Integrative Measure of Functioning (IMF) based on the concepts of functioning and environmental factors in the International Classification of Functioning, Disability and Health (ICF). An IMF would be applicable across a variety of health conditions, settings and purposes, ranging from individual assessment to public health. An IMF could deliver person-centred, policy-relevant information for a range of programs, promoting harmonised language and measurement and supporting international trends in human services and public health.

The relevance of the International Classification of Functioning, Disability and Health (ICF) in monitoring and evaluating Community-based Rehabilitation (CBR).

PURPOSE: To examine the relevance of the International Classification of Functioning, Disability and Health (ICF) to CBR monitoring and evaluation by investigating the relationship between the ICF and information in published CBR monitoring and evaluation reports. METHOD: A three-stage literature search and analysis method was employed. Studies were identified via online database searches for peer-reviewed journal articles, and hand-searching of CBR network resources, NGO websites and specific journals. From each study "information items" were extracted; extraction consistency among authors was established. Finally, the resulting information items were coded to ICF domains and categories, with consensus on coding being achieved. RESULTS: Thirty-six articles relating to monitoring and evaluating CBR were selected for analysis. Approximately one third of the 2495 information items identified in these articles (788 or 32%) related to concepts of functioning, disability and environment, and could be coded to the ICF. These information items were spread across the entire ICF classification with a concentration on Activities and Participation (49% of the 788 information items) and Environmental Factors (42%). CONCLUSIONS: The ICF is a relevant and potentially useful framework and classification, providing building blocks for the systematic recording of information pertaining to functioning and disability, for CBR monitoring and evaluation. Implications for Rehabilitation The application of the ICF, as one of the building blocks for CBR monitoring and evaluation, is a constructive step towards an evidence-base on the efficacy and outcomes of CBR programs. The ICF can be used to provide the infrastructure for functioning and disability information to inform service practitioners and enable national and international comparisons.

Counting disability: global and national estimation.

PURPOSE: How many people with disabilities are in the world? How is disability defined? How can we measure disability in an accurate and comparable way? These are some of the key questions which the recently published World Bank/WHO World Report on Disability (WRD) addresses. METHOD: Multiple data sources and methods were used by WHO and the World Bank to estimate a global figure, with the ICF as the underlying data standard. Key international data sources were the World Health Survey of 2002-2004 and the 2004 updates from the Global Burden of Disease study. The World Report on Disability also includes a compilation of country-reported prevalence from census and surveys. This paper presents and discusses key findings of the Irish National Disability Survey (2006) to illustrate the value of the ICF framework for disability statistics and most especially the environmental factors component. RESULTS: The World Report estimates that globally one billion people or 15% of the world's population experience disabilities. Between 110-190 million people (2% of the world's population) experience severe or extreme difficulties in functioning. Definitions and measures of disability vary widely across countries. The Irish Disability Survey shows the substantial impact of environmental factors on people's functioning. For example, attitudes, and the presence or absence of facilitating equipment, support services, flexible working arrangements and transport significantly affect participation of people with disabilities in Irish society. CONCLUSIONS: To improve the quality of disability information, the World Report recommends the use of a common definition and concepts of disability based on WHO's International Classification of Functioning Disability and Health (ICF). Furthermore, disability measurement needs to apply a multidimensional approach, in particular, measuring disability in terms of the level of difficulty a person is experiencing in multiple areas of life, rather than head counting severe impairment types in a dichotomous way. Environmental factors have significant effects on individual functioning and should be considered as an integral part in disability measurement.

How much does intellectual disability really cost? First estimates for Australia.

BACKGROUND: Given the paucity of relevant data, this study estimates the cost of intellectual disability (ID) to families and the government in Australia. METHOD: Family costs were collected via the Client Service Receipt Inventory, recording information relating to service use and personal expense as a consequence of ID. Government expenditure on the provision of support and services was estimated using top-down costing. RESULTS: A total of 109 parents participated. The cost of ID in Australia is high, especially for families. Total economic costs of ID are close to $14,720 billion annually. Opportunity cost of lost time provided 85% of family expense. A comparison of family expense and social welfare benefits received suggests that families suffer considerable loss. This may impact on families' physical and emotional wellbeing. CONCLUSIONS: Monitoring of changes in expenditure is required. Policies should ensure that money devoted to ID is allocated in a rational, equitable, and cost-effective manner.