Thinking about functioning and health The International Classification of Functioning, Disability and Health (ICF) and the WHO Family of International Classifications Ros Madden Australian ICF Disability and Rehabilitation Research Program Centre for Disability Research and Policy The complexity of disability › Tom Shakespeare is talking about ‘Re-imagining disability’ in 2009: http://vimeo.com/5161684 › Please watch the first 4+ minutes, when he speaks about - the variation in people’s ideas about disability and the value of all these ideas (rather than just one perspective) - how disability affects us all, and is on a continuum › The video is almost 30 minutes long and is about art and disability. › Further readings are in Tom’s book on ‘Disability rights and wrongs’ (see reference list) Recognising this complexity… … we will think about: 1. Why define and classify disability? 2. What is the international standard disability classification – the ICF? 3. How does the ICF relate to some of the major ideas about disability? 4. How does the ICF relate to health, the ICD and the family of international health classifications? 5. How can the ICF be used? These are the questions this lecture will discuss, and try to provide some ideas and answers … 3 1. Why define and classify disability? 4 http://unstats.un.org/unsd/demographic/sconcerns/disability/disab2.asp 5 Norway New Zealand Australia Uruguay Canada USA Spain Austria Sweden Netherlands Germany Colombia China Italy Egypt Philippines Malawi Japan Jordan Sri Lanka Libya Brazil Thailand Benin Algeria Sudan Lebanon Tunisia Bangladesh Syria Disability prevalence estimates across the world 35 30 Survey disability 25 20 15 10 5 0 CLASSIFICATION S … BUILDING BLOCKS OF HEALTH Definition and classification help us › Use a common, purposive language - across disciplines, systems and with the people concerned › Organise our thinking and planning › Gather and analyse relevant information › Carry out meaningful research › NOT about labelling people 7 Why a disability model and classification? › Model - To illustrate relationships among components › Definition - To contain the core ideas of a phenomenon - To ensure we are talking about the same thing - a common language › Classification - Assigns ‘things’ to separate and discrete categories, so as to group like with like - Forms the basis of statistical aggregation 8 Rachel Hurst, DPI, 1998 In a perfect world we would prefer to have no classification at all … However for the purposes of statistics, assessment for services … and above all for non-discrimination legislation, we do need to have definitions of who we are and of our situation and we reluctantly accept that this means some sort of classification or analysis of disablement. 9 Typically, classification is the placing of similar objects into groups Frequently, the objects are organized in a hierarchical structure: 2. What is in the international standard disability classification – the ICF? 12 Health as a global notion Health = Absence of disease Health = Complete physical, psychological, spiritual and social well being 13 Health ‘… health is both a matter of how long one lives and how well one lives (i.e. one’s level of functioning)’ (Üstün et al 2003) 14 Brief history › International Classification of Impairments, Disabilities and Handicaps (ICIDH) 1980 – published by WHO for trial purposes only › Developed to correspond to this broader interpretation of health, especially as more people live long term with chronic conditions, and as rehabilitation became more important › Some criticism e.g. that, while influence of environment was noted, no systematic classification › 1993 revision began: - Literature reviews to identify terms - Collaborative development - Testing e.g. for cross-cultural and linguistic applicability - Alpha and beta drafts for worldwide comments and trials › 2001 – ICF finalised and published 15 What is the ICF? › The international standard model, framework and classification for functioning and disability, published by WHO and endorsed by the World Health Assembly in 2001 › Functioning encompasses all human functions; at the level of the body, the individual and society › Functioning and disability: multi-dimensional experiences resulting from the interaction between people’s health conditions and their physical and social environment 16 ICF: Interaction of concepts Health Condition (disorder/disease) Body function & structure (Impairment) Activities (Limitation) Environmental Factors Participation (Restriction) Personal Factors 17 17 Definitions (1) › Body functions are the physiological functions of body systems (including psychological functions). › Body structures are anatomical parts of the body such as organs, limbs and their components. › Impairments are problems in body function and structure such as significant deviation or loss. 18 Definitions (2) › Activity is the execution of a task or action by an individual. › Participation is involvement in a life situation. › Activity limitations are difficulties an individual may have in executing activities. › Participation restrictions are problems an individual may experience in involvement in life situations. 19 Definitions (3) › Environmental factors make up the physical, social and attitudinal environment in which people live and conduct their lives. These are either barriers to or facilitators of the person’s functioning. 20 The structure and codes of the classification: Chapters – Body functions ICF Contextual factors Functioning and Disability Body functions and Structures Body functions Activities and Participation Environmental factors Personal factors Body structures b1 Mental functions b2 Sensory functions and pain b3 Voice and speech functions b4 Functions of the cardiovascular, haematological, immunological and respiratory functions b5 Functions of the digestive, metabolic and endocrine system b6 Genitourinary and reproductive functions b7 Neuromusculoskeletal and movement-related functions b8 Functions of the skin and related structures The structure and codes of the classification: Chapters – Body structures ICF Contextual factors Functioning and Disability Body functions and Structures Body functions Activities and Participation Environmental factors Personal factors Body structures s1 Structures of the nervous system s2 The eye, ear and related structures s3 s4 Structures involved in voice and speech Structures of the cardiovascular, immunological and respiratory system s5 Structures related to the digestive, metabolic and endocrine system s6 Structures related to the genitourinary and reproductive system s7 Structures related to movement s8 Skin and related structures The structure and codes of the classification: Chapters – Activities and Particpation ICF Functioning and Disability Body functions and Structures Body functions Body structures Activities and Participation Contextual factors Environmental factors Personal factors d1 Learning and applying knowledge d2 General tasks and demands d3 Communication d4 Mobility d5 Self-care d6 Domestic life d7 Interpersonal interactions &relationships d8 Major life areas d9 Community, social and civic life The structure and codes of the classification: Chapters – Environmental Factors ICF Functioning and Disability Body functions and Structures Body functions Activities and Participation Contextual factors Environmental factors Body structures Products and technology Natural environment/human-made changes to the environment e1 e2 Support and relationship e3 Attitudes e4 Services, systems and policies e5 Personal factors Qualifiers › Numeric codes, after the neutral domains - Domains indicate the area of problem, qualifiers indicate extent of problem › Body function or structure – 5 point scale to show extent of impairment › Activities and Participation – 5 point scale showing difficulty/problem, depending on environment › Environmental factor – facilitator or barrier 25 Delineating Activities and Participation Four options shown in ICF annex 3 (there is a single list of domains but separate definitions): › distinct non overlapping sets of Activities (e.g. domains 1-4) and Participation (e.g. domains 5-9) › partially overlapping sets (e.g. Activities domains 1-6 and Participation domains 3-9) › consider all first and second level categories within a domain as Participation, and all categories at third or fourth level within a domain as Activities › a single fully overlapping list of categories - Now recommended by WHO 26 Australian qualifiers for Activities and Participation difficulty Activities (ICF generic qualifier) need for assistance (AIHW developed qualifier) extent Participation (ICF generic qualifier) satisfaction (AIHW developed qualifier) 27 Principles and features of the ICF ICF is interactive and probabilistic › Universality. Applicable to all people irrespective of health condition and in all physical, social and cultural contexts. The ICF concerns everyone’s functioning and disability, was not designed, nor should be used, to label persons with disabilities as a separate social group. › Parity - aetiological neutrality. There is not an explicit or implicit distinction between different health conditions, whether ‘mental’ or 'physical'. Knowing the health condition does not imply that disability is known. › Neutrality. Domain definitions are worded in neutral language, wherever possible, so that the classification can be used to record both the positive and negative aspects of functioning and disability. › Environmental Influence. The ICF includes environmental factors in recognition of the important role of environment in people’s functioning. Interaction with environmental factors – physical, social, attitudinal- is an essential aspect of the scientific understanding of functioning and disability. 28 Functioning & Disability are on a continuum for example in Seeing Functions 10/20 2/20 1/20 Mild-Moderate vision impairment: Needs eye glasses, contact lenses… Severe vision impairment: Needs operation Complete vision impairment (blind): Needs assistance – pension, device, assistant environmental modifications ICF explained in one minute › › http://www.youtube.com/watch?v=0Qn3OQvrkOs › 30 3. How does the ICF relate to some of the major ideas about disability? 31 Biopsychosocial model: blending medical and social models › personal problem and social problem › medical therapy and social integration › individual treatment and social action › professional help and group responsibility › personal changes and environmental changes › behaviour and attitude, culture › care and human rights › health policies and politics › individual adaptation and societal change 32 The UN Convention on the Rights of Persons with Disabilities Article 1: The purpose … is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. Article 19: Living independently and being included in the community: … the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community…: Article 25. Health: States parties are to … (d) Require health professionals to provide care of the same quality to persons with disabilities as to others, including on the basis of free and informed consent by, inter alia, raising awareness of the human rights, dignity, autonomy and needs of persons with disabilities … Article 31 Statistics and data collection › 1. States Parties undertake to collect appropriate information, including statistical and research data, to enable them to formulate and implement policies to give effect to the present Convention. The process of collecting and maintaining this information shall: - (a) Comply with legally established safeguards, including legislation on data protection, to ensure confidentiality and respect for the privacy of persons with disabilities; - (b) Comply with internationally accepted norms to protect human rights and fundamental freedoms and ethical principles in the collection and use of statistics. … 33 The UN Convention, ICF, services Article 19: Living independently and being included in the community ICF Participation: Involvement in 9 life areas ICF Environmental factors : physical, social and attitudinal Generic services: Health, Education, Housing, Income support Transport Disability support services: Provide support in any area of activities and participation; intervene in environment 34 The UN Convention, the ICF, and the service system UN Convention on the Rights of Persons with Disabilities - Normative legal and moral framework for policy Services - Defined by goals, target groups, products, eligibility, enabling the goals of the Convention to be achieved… ICF - Framework, language, and building blocks for information 35 Key readings › Jerome Bickenbach chapter in the Disability Studies book on your reference list › Tom Shakespeare Disability rights and wrongs › ICF Overview on http://sydney.edu.au/health_sciences/aidarrp/ › Suggested readings and discussion questions on your interactive website 36 4. How does the ICF relate to health, the ICD and the WHO Family of International Classifications? 37 WHO “Family” of International Classifications a suite of classifications for international use as meaningful information tools to capture the core health dimensions such as: › deaths, › disease, › disability and health › health interventions. WHO Family of Classifications RELATED Classifications REFERENCE Classifications DERIVED Classifications International Classification of Primary Care (ICPC) I nternational C lassification of D iseases The Australian Modification to ICD-10 ICD-10-AM International Classification of External Causes of Injury (ICECI) The Anatomical, Therapeutic, Chemical (ATC) classification system with Defined Daily Doses (DDD) ISO 9999 Technical aids for persons with disabilities – Classification and Terminology I nternational C lassification of F unctioning, Disability & Health I nternational C lassification of H ealth I nterventions (under development) International Classification of Diseases for Oncology, Third Edition (ICD-O-3) Application of the International Classification of Diseases to Dentistry and Stomatology, Third Edition (ICD-DA) Application of the International Classification of Diseases to Neurology (ICD-10-NA) Modern Health information Systems ICD ICF e-Health Record Systems Mappings/ ICHI Knowledge Representation Classifications Terminologies Population Health Clinical • • • • • Births Deaths Diseases Disability Risk factors Administration • Decision Support • Scheduling • Integration of care • Resources • Outcome • Billing Reporting • Cost • Needs • Outcome 5. How can the ICF be used? 41 ICF application worldwide › Surveys – national and international › National data collections › Health measurement and assessment › Rehabilitation management, evaluation and casemix › Research into functioning and disability › Education: assessment and planning › Social security systems › Community care and support 42 World Report on Disability › UN Convention as framework - a broad view of disability › ICF as technical standard and statistical framework 2 43 Estimating prevalence Using international surveys and studies: › Disability multidimensional experience. Interactive & varies with the environment › Disability on a continuum: The need to set thresholds › More than a billion people with disability (15% of world’s population) - significant difficulties in their everyday lives › Some 110 to 190 million people (12%) encounter very significant difficulties in their daily lives. WHO: World Report on Disability 2 44 ICF and disability statistics in Australia › Data items in national data collections - ABS disability, ageing and carers survey - Census in 2006 - Disability support services - Other administrative collections › National analyses of need for disability support services: comparable data on supply & demand › Framework for biennial reports to Parliament 45 Aboriginal and Torres Strait Islander people: disability and age 30.0 25.0 Total population 2003 Per cent 20.0 Indigenous population 2002 15.0 10.0 5.0 0.0 0-14 15-24 25-34 35-44 45-54 55-64 65-74 75-84 Age group (years) 46 Participation › Social life - Family and friends the main focus - ‘Severe’ disability related to less participation › Education - Trend towards ‘mainstream’ schooling - Less likely to have completed Year 12 › Employment: low rates of participation and higher unemployment › Relationships, communication, mobility, community, domestic life - difficulties Source: AIHW 2005 47 Support needs: in the national disability services statistics How often does the service user need personal help or supervision with activities or participation in the following life areas? - Needs no help/supervision; - Sometimes needs help/supervision; - Always needs help/supervision - No help if uses aids All ICF activities and participation domains used (at high, usually chapter level) Relates to ICF, ABS population survey, is robust - Thousands of outlets & many assessment tools - able to use it - Enables supply and demand to be compared - Useable by thousands of large and small disability service rpoviders 48 Access: comparing administrative and population data based on ICF › 50% of people using disability support services, 2007-08 needed support with self care, mobility, communication, compared to 4% of general population of same age 100% 80% Not known Never Sometimes Always 60% 40% 20% 0% Self care, Interpersonal, Education, work, mobility, learning, general community life communication tasks 49 Benefits of using ICF › ICF provides a common language about functioning to - Promote consistent understanding across professional services and with the people concerned - Deliver a common basis for measurement - Structure outcomes definition for interventions - Underpin consistent data across time and place › ICF concepts and ethical principles for use – e.g. involve the person in use - align with the UN Convention 50 References and links Anderson P, Madden R. 2010. Design and quality of ICF-compatible data items for national disability support services. Disability and Rehabilitation, 2011; 33(9):758-769 Australian ICF Disability and Rehabilitation Research Program http://sydney.edu.au/health_sciences/aidarrp/ Australian Institute of Health and Welfare (AIHW) 2003. ICF Australian User Guide. Version 1.0. Disability Series. AIHW Cat. No. DIS 33. Canberra: AIHW. Australian Institute of Health and Welfare (AIHW) 2005. Australia’s Welfare 2005. Canberra:AIHW Australian Institute of Health and Welfare 2009. Disability support services 2007–08: national data on services provided under the Commonwealth State/Territory Disability Agreement. Disability series. Cat. no. DIS 56.Canberra: AIHW AIHW. National data standards for disability http://meteor.aihw.gov.au/content/index.phtml/itemId/320319 Hurst R 2003. The international disability rights movement and the ICF. Disability and Rehabilitation Vol 25, No, 11-12, 572-576 UN Convention on the Rights of Persons with Disabilities http://www.un.org/disabilities/convention/about.shtml Shakespeare T 2006. Disability Rights and wrongs. Routledge. Oxford. UK Ustun TB, Chatterjee S, Bickenbach J, Kostanjsek N, Schneider M 2003. The International Classification of Functioning, Disability and Health: a new tool for understanding disability and health. Disability & Rehabilitation, 2003: 25, 11–12, 565–571 Wade DT 2005. Describing rehabilitation interventions. Clinical Rehabilitation 2005; 19: 811 -818 WHO 2001: International Classification of Functioning, Disability and Health. Geneva: WHO. http://apps.who.int/classifications/icfbrowser/ http://www.aihw.gov.au/disability/icf/index.cfm World Health Organization and World Bank 2011. World Report on Disability. Geneva: WHO http://www.who.int/disabilities/world_report/2011/report/en/ World Health Organization 2013. How to Use the ICF—A Practical Manual for Using the International Classification of Functioning, Disability and Health; WHO: Geneva, Switzerland. http://www.who.int/classifications/drafticfpracticalmanual.pdf 51