Azienda per i Servizi Sanitari n. 5 "BASSA FRIULANA" AREA DELLE CLASSIFICAZIONI

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1 European Seminar The EU Disability Strategy : New impetus for regional employment policies and the implementation of the UN Convention on the Rights of Persons with Disabilities 16 June Valencia (Spain) Use of the International Classification of Functioning, Disability and Health (ICF) as a conceptual framework and common language for disability policies and statistics Lucilla Frattura, M.D., Psychiatrist Head, Italian WHO-FIC Collaborating Centre Central Health Directorate, Friuli Venezia Giulia Region lucilla.frattura@sanita.fvg.it

2 Contents Azienda per i Servizi Sanitari n. 5 What is/are disability/disabilities ICF: general introduction why ICF is important what ICF allows regions to achieve how ICF would be applied in the context of employment policies To allow to make a bridge to the afternoon of the programme, where we will go into detail about regional policies relating to employment

3 About WHO-FIC Network and the Italian WHO CC WHO has designated a number of collaborating centres to work with it in the development, dissemination, maintenance and use of the WHO Family of International Classifications (FIC) to support national and international health information systems, statistics and evidence. Italian WHO-FIC collaborating centre is one of the 13 Centres supporting WHO The Network meets on an annual basis to discuss matters of mutual interest and to advise WHO. The Mission Statement of the WHO-FIC Network is to develop, disseminate, implement and update the WHO- FIC to support national and international health information systems, statistics and evidence.

4 What disability/disabilies is/are? UN Convention marks a paradigm shift in attitudes and approaches to persons with disabilities. UN Convention defines disability/disabilities as follows: Preamble of UN Convention states: Disability is an evolving concept, and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders full and effective participation in society on an equal basis with others Article 1 of UN Convention states: Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.

5 YES: UN Convention Terminology persons with disabilities Azienda per i Servizi Sanitari n. 5 NO: physically or mentally disabled handicapped

6 What is disability? : a methological issue Multiple axes = multi-dimensional by definition Interaction focused = dynamic and unique by definition To be considered as related to the context = Systemic by definition

7 What is disability? : a methological issue Such a definition allow us to outline the concept of disability, which, without questioning the physical/mental impairment (seen as a precondition), focuses on the consequences that people with disabilities face in their daily life because of the presence of barriers. The consequences, according to the UN definition, are negative and they regard the restriction to participation in life.. Disabilities = bad outcome

8 Some methodological consequences of UN definition Azienda per i Servizi Sanitari n. 5 From the public policy point of view, the disability indicator of a country, which should better be defined, would point out to what degree persons with impairments cannot participate in life. The more the disability, the more segregating a nation/region/town will be. In contrast, the less the disability, the more inclusive a nation/region/town will be. The aims of public policies are to fight disability and to have people with long-term impairments living without disabilities (=barrier-free EU)

9 Some methodological consequences of UN definition Azienda per i Servizi Sanitari n. 5 From the epidemiological point of view, people with disabilities will be the only excluded persons and the barriers will be the determinants/risk factors. From the public services point of view, the aim of individual intervention programmes will be to eliminate/reduce disability, whereas the objectives will be to introduce what the UN Convention calls reasonable accomodations. It follows that, from the moment a person with disabilities access the health care system, a new and careful identification of environmental factors will be undertaken with the aim to remove them (introducing reasonable accomodations)

10 Some methodological consequences of UN definition Azienda per i Servizi Sanitari n. 5 The UN definition of people with disabilities is thus that of a population in which disabilities has the value of an outcome. In the light of this definition and of its extraordinary implications at the political and practical level, it is necessary to undertake a careful identification of the population with disabilities and of the determinants/risk factors of this condition.

11 Open questions: How many are the persons with disabilities and how is possible to detect the barrier factors that are the cause of their condition? How can disabilities be described if not only the physical/mental impairments, but also the consequences of the interaction with the environment have to be considered? If a person with physical impairment fully participate, can that person be considered without disability? Is the International Classification of Functioning, Disability and Health (ICF) useful to identify the persons with disabilities? How should ICF be used? Is the ICF tool box adequate?

12 We are in need for a common framework A common framework for describing functional status information is needed in order to make information on health and disabilities comparable and of value. The World Health Organization s International Classification of Functioning, Disability and Health (ICF), which has been approved by all its member states, provides this common language and framework.

13 - Full version - Short version - CD-ROM

14 ICF as a common language Azienda per i Servizi Sanitari n. 5 The approval of the International Classification of Functioning, Disability and Health (ICF) by the World Health Assembly in May 2001 has marked a paradigm shift in the way health and disability are understood and measured. Until recently, health has only been seen as the opposite of death or disease. ICF has brought these concepts into a comprehensive whole of multiple dimensions of human functioning synthesizing biological, psychological, social and environmental aspects. ICF, thus, presents health and disability in a single spectrum.

15 ICF as a common language Azienda per i Servizi Sanitari n. 5 Formulating human functioning in multiple dimensions under a biopsychosocial view is not new to a number of medical fields, such as rehabilitative medicine, mental health, physical, occupational and speech and language therapy, and in nursing home and home care settings. What is new is that with the adoption of ICF we have a globally agreed-on conceptual framework and common language to document and code functional status information.

16 Disability and functioning in ICF: taxonomic and terminological issues Functioning is an umbrella term for body functions, body structures, activities and participation. It denotes the positive aspects of the interaction between an individual (with a health condition) and that individual s contextual factors (environmental and personal factors). Disability is an umbrella term for impairments, activity limitations and participation restrictions. It denotes the negative aspects of the interaction between an individual (with a health condition) and that individual s contextual factors (environmental and personal factors).!"

17 !"#$%&"'%&(')( (')(*"&+,"-"./(+%*()0%12'%"%3 POSITIVE ASPECTS FUNCTIONING BODY STRUCTURES AND BODY FUNCTIONS ACTIVITY!"#$%&%!"$%'( IMPAIRMENT ACTIVITY LIMITATION PARTICIPATION RESTRICTION NEGATIVE ASPECTS DISABILITY

18 Characteristics of Functioning in light of ICF # 45$($%6"7'%#$%.(1+%(,$(,'.5(,+77"$7('7()+1"-".+.'7 # # 8','*/(1+%()0%12'%('0.&"*$(.5"&("%.$7+12'%(9".5(.5$ $%6"7'%#$%.("%(+(1'#:-$.$-/(+0.'%'#'0&(9+/; # A%,+(5+B+%5+%1;</C',4/',2/5)6D.+/5'*+%2')%/)0/9'&+/-%5,-E+</'2/-/,;B'1-./1)%5'=)%/)0/-/46*-%/D+'%9

19 45$(.9'(:"--+7&(')(.5$(,"':&"1'&'1"+-(#'*$-(< ICF Teorical Guide Data collecting structure Model of Functioning and Disability CRPD moral compass Values Strategical Goals Specific Goals Classification and language

20 ICF conceptual model As a "second generation" classification, ICF is concept driven. Apart from classifying the universe of disability, ICF also provides a conceptual framework for understanding disability. At the core of the ICF concept of health and disability is the notion that disability is a multidimensional and universal phenomena placed on a continuum with health. Human functioning is understood as a continuum of health states and every human being exhibits one or another degree of functioning in each domain, at the body, person and society levels. ICF conceptualises disability not solely as a problem that resides in the individual, but as a health experience that occurs in a context. Disability and functioning are, according to the ICF model, outcomes of interactions between health conditions (diseases, disorders and injuries) and contextual factors. The bio-psychosocial model embedded in the ICF broadens the perspective of disability and allows medical, individual, social, and environmental influences on functioning and disability to be examined.

21 From ICIDH to ICF: functioning as interaction =>=!A/!"&$+&$(!(=#:+"7#$%.(!(!"&+,"-"./(!(A+%*"1+: The above figure depicts the components of the ICF in an interactive model. The health condition (a disease or disorder) may impact functioning at 3 mutually interacting levels: in relation to the body, at the level of activities, and at the level of participation in society. The way health condition impacts functioning should also be considered within the context of environmental and personal factors. =>?(

22 Goals and ICF applications The ICF can provide or underpin a descriptive profile of an individual's pattern of functioning at a single point in time, but not a 'yes' or 'no' answer about whether he or she is with disabilities. A decision about where to draw a line between no disability and disability depends on the purposes for doing so. Individual measures, surveys and other applications must be based on this understanding as well as the knowledge that there are multiple dimensions of disability, and potentially multiple perspectives to consider. Different measurement or policy purposes may result in different decisions about which aspects of disability to focus on and which thresholds are relevant and hence in different measures and estimates at individual or population level.

23 ICF conceptual model ICF is grounded in the principle of universality, namely that functioning and disability are applicable to all people, irrespective of health condition, and in particular that disability or decrement in functioning at one or more levels is not the mark of a specific minority class of people, but is a feature of the human condition, which is, epidemiologically speaking, over the life-span, a universal phenomena. ICF is committed to the principle of parity, which states that the functional status is not determined by background etiology, and in particular by whether one has a physical rather than mental health condition.

24 F-2+/ G-2+5

25 Why icf is useful? Azienda per i Servizi Sanitari n. 5 While collecting information about disability may be useful, use of the ICF provides a framework for standardizing that data collection so that it will have less error and bias and be more useful when shared with other users. Having a standardized description or summarization of disability, through a classification, enables such information to be formatted and transmitted efficiently for sharing with other, multiple users around the world. The ICFclassification standardizes the structure of the information and the elements of that classification can be used to summarize a range of information. Utilizing a classification adds value to the description of certain current sets of characteristics that need organizing in order to be interpreted clearly.

26 ICF applications Applications at population level: Health and disability data collection in surveys of general and specific populations: ICF provides the conceptual framework and item pool for Multi-Country Studies (e.g. the Global Study on Ageing - SAGE [3]), the World Mental Health Survey (WMHS) [4], the World Health Survey (WHS) [5], the WHO Multi-Country Survey Study (MCSS) [6] as well as national surveys (e.g. Ireland [7],Chile [8], Mexico [9]). Data compilation and analysis: ICF-based disability prevalence and multi-domain functioning levels at global and regional level are presented in the upcoming WHO World Report on Disability and Rehabilitation. At regional level, projects like "Measurement of Health and Disability in Europe (MHADIE)" applied the ICF in their analysis of population health and disability data. At country level, the ICF is used to facilitate the harmonization and comparability of data sets (e.g. Australian Health Data Dictionary).

27 Disability Statistics and Information System Azienda per i Servizi Sanitari n. 5 Monitor the application of UN convention Survey Administrative data sources

28 ICF applications Applications at health and social service level: National legislation: the ICF model and definition of disability is used as the reference standard for health- and disability-related legislation. In Germany, for example, the 9th Basic Social Law (SGB IX) uses ICF as reference for regulating the entitlements and service provision for people with chronic disease and disability. Service provision: the ICF is used in documenting and coding the functional status information for purpose of assessing patient needs, planning health and social care and for measuring the changes brought by interventions across a multitude of dimensions from body functions to personal activities, societal participation and environmental factors.

29 ICF applications Azienda per i Servizi Sanitari n. 5 Disability certification: various countries have or are in the process of implementing projects where ICF is used in assessing the disability status of individuals in order to determine their eligibility for health, social, or educational services. The move to an ICF approach is driven by a broad consensus that disability should be understood as the result of a complex interaction between a person and his or her environment and not as a characteristic of an individual. Consequently, it could be presumed that eligibility should also take into account the functioning of the persons in their environment and move beyond using only onedimensional, deficit-oriented diagnostic or body impairment labels.

30 ICF applications Azienda per i Servizi Sanitari n. 5 Development of disability survey modules & question sets: the ICF framework and taxonomy is used to derive disability question sets for international and regional projects including the WHO health and disability survey module, the EUROSTAT Survey Module on Disability and Social Integration", and the Washington Group on Disability Statistics. Policy development and monitoring: international treaties and initiatives like the Millennium Development Goal (MDGs) or the UN Convention on the Rights of Persons with Disabilities (CRPD) as well as national health and social policies are setting targets and indicators. For guiding policy development and monitoring, its implementation need to be matched with data sources. Pilot projects are currently exploring the use of the ICF framework and coding system for monitoring policy implementation by linking policy targets and indicators with the respective data sources.

31 ICF based assessment tools To support the implementation of ICF, a wide range of application tools and training materials have been developed over the past years. For standardized cross-cultural measurement of health status, WHO has developed a new version of the Disability Assessment Schedule (WHODAS 2.0) as a general measure of functioning and disability that reflects major life domains as classified in the ICF Another instrument is the ICF Checklist, which is a practical translation of the ICF for clinical practice. ICF core-sets ICF based common assessment framework

32 Italy and ICF based policies Implementation of disability evaluation protocols based on the biopsychosocial model and the descriptive structure of the International Classification of Functioning, Disability and Health (ICF) ( ) ICF 4 Programme consisting of two projects: Development of disability evaluation protocols based on the descriptive structure of ICF and Services for work and social inclusion of disadvantaged people with the help of SPL, ongoing at the national level and led by Italia Lavoro S.p.A., according to the mandate from Direzioni Generali del Mercato del Lavoro e delle Politiche Sociali (2010-ongoing). Implementation of evaluation tools based on ICF Direzione Centrale Salute Regione Autonoma Friuli Venezia Giulia, ongoing at the regional level and led by the WHO Italian Collaborating Centre for the Family of International Classifications (2010-ongoing). Azienda per i Servizi Sanitari n. 5

33 ICF implementation in Italian public policies carried out by the Italian WHO-FIC CC Azienda per i Servizi Sanitari n Friuli Venezia Giulia 2010 N: 298/1051 N: Friuli Venezia Giulia 2011 Tot:

34 ICF and employment in Italy An national programme is in progress on the evaluation of functioning/disability of disabled persons in order to include them in a working setting. The ICF and labour policies project represented the first Italian experience of implementation of systematic adoption of ICF by a Ministerial body, the agency Italia Lavoro. The aim of the programme is to study the conditions necessary for the inclusion of disable people in a work setting by using evaluation tools based on ICF (Worker Protocol, Company Protocol) in a sample of 220 persons and 220 companies. The Who Italian Collaborating Centre participates in the project by offering training and methodological support to Italia Lavoro. Azienda per i Servizi Sanitari n. 5

35 ICF- based worker assessment tool The dedicated ICF-based worker checklist was developed on the basis of the ministerial schedule for the evaluation of PwD and the WHO s ICF checklist, a list of 128 ICF categories employed during ICF s field trial. Standardized linking rules were followed to identify concepts contained in the ministerial schedule. The final ICF-based worker checklist was composed of all ICF categories contained in the standard ICF checklist and of the ICF categories linked to the ministerial schedule.

36 ICF and employment in Italy ICF and labour policies project s results represented the first step towards the development of an ICFbased system to be used not only for evaluating functional profiles of PwD looking for a job, but also to evaluate companies environments. Matching person s features with a company s requirements is the key factor for a successful work placement, and the common language provided by the ICF might facilitate such a matching process. The implementation of the ICF tool to realise the targeted employment of people with disabilities started in 2004 and it represents a work in progress. The proposed ICF-based worker checklist for the evaluation of a PwD looking for a job needs to undergo an extensive field trial to evaluate its applicability and feasibility. Azienda per i Servizi Sanitari n. 5

37 News on ICF and welfare policies in Italy A new web application called Electronic biopsychosocial folder was developed for the systematic and codified collection of social and health information relating to each individual receiving care from the integrated system of social health services. The application is based on a new use of the ICF and on the use of the available health terminologies and nomenclators. Its development was guided by an ad hoc biopsychosocial evaluation protocol tested at two different times involving more than 1200 patients.. It allows: a) the retrieval of data already present in the single information systems; b) the generation of new data, as foreseen by the evaluation protocol; and c) the management of an individualized project of intervention.

38 ICF is flexible Azienda per i Servizi Sanitari n. 5 The ICF is a very flexible classification; it can be used for simple or complex classification activities. However, that inherent flexibility yields situations in which a user might not be able easily to determine which components of the ICF should be used, or in what types of applications. That flexibility also makes it impossible to answer the question about how to apply the ICF in my context with any generic response: there is not a one-size-fits-all answer to that question. Instead, fitting form to purpose must be your essential guideline to utilize those components of the ICF that most suitably fit the purposes of your own applications. about the ICF conceptual framework and ICF coding, other resources exist, such as the WHO ICF elearning Tool, the Australian ICF User s Guide, and the Swiss Paraplegic Institute s ICF Case Studies.

39 Conclusions Azienda per i Servizi Sanitari n. 5 ICF puts the notions of health and disability in a new light. It acknowledges that every human being can experience a decrement in health and thereby experience some disability. This is not something that happens to only a minority of humanity. ICF thus mainstreams the experience of disability and recognizes it as a universal human experience. By shifting the focus from cause to impact it places all health conditions on an equal footing allowing them to be compared using a common metric the ruler of health and disability. Since its publication in 2001, the ICF has been gradually implemented in a variety of settings and sectors.

40 The potential role of ICF in Monitoring the UN Convention on the Rights of Persons with Disabilities The ever-expanding literature on ICF implementation suggests that the ICF model of functioning and disability potentially offers more than merely a guide for structuring disability data. But its data structuring is essential for a scientifically sound CRPD monitoring process. At the same time, the ICF exemplifies in its model of functioning and disability the so-called biopsychosocial concept of disability, in which disability is a multidimensional concept that constitutes the outcome of interactions between intrinsic features of the person and the person s physical, built, attitudinal and social and political environment.

41 ICF role in UN Convention monitoring ICF can play two very important bridging roles in the monitoring process, one scientifically technical, the other more political but, from the standpoint of the future of the realization of rights for persons with disabilities, essential. This remark is purely conceptual and there is much work ahead to ground this conjecture empirically. But the conjuncture is plausible.

42 Thank you for your attention!