Disabilityrelated models and classifications Evolution and applications Aida

Disability-related models and classifications Evolution and applications Aida Hakimi Osmanbegovic , Handicap International

The WHO Classifications International classifications • Evaluating the state of health in populations • Providing a scientific basis for consequences of health conditions • Creating tools for describing and collecting data about the health of populations : – – establishing a common language to improve communications permitting comparison of data across: Ø countries Ø health care disciplines Ø services Ø time - to provide a systematic coding scheme for health information systems

Moving from a classification of the causes of death to a classification of illnesses (1893 -1948) • 1893 : Bertillon classification: international nomenclature of the causes of death • 1946 : ICD (10 th revision on 1990): International Statistical Classification of Diseases & Related Health Problems – Death statistics – Illness statistics

Moving from a classification of illnesses to a classification of disabilities (1948 – 1980) 1950 : epidemiological transition in industrial countries The medicinal improvements: • • • Reanimation Neonatology Surgery Rehabilitation Pharmacology The effects of this: - Decrease in infectious diseases - Increase in chronic diseases and problems - Ageing populations

First classification of handicaps (WHO 1980): ICIDH Proposition of Philip Wood (1970 -1980) adopted by WHO for an experimental trial 3 levels in the development of handicaps Disease or disorder Impairments Disabilities Handicaps

Critiques of ICIDH • Classification founded on the “medical model” : – Linear causality from impairment to handicap – Description of handicaps: insufficient – Absence of an environmental dimension • Handicaps are described in a negative way

International conceptual evolution in the field of disabilities 1. Evolution of international norms - Before 1975: UN recommendations based on rehabilitation - Since 1980: a shift from rehabilitation to human rights - International year of Persons with Disabilities (1982) - Decade of Persons with disabilities - World program actions for Persons with Disabilities - Standard rules for equal opportunities for Persons with disabilities - Convention on the Rights of Persons with Disabilities (13 th of December, 2006) 2. Evolution of practices and social representation of disabilities a- Emergence of the Independent Living Movement (USA 1960) b- Diffusion of the model and extension of the ILM in the world c- Development of a theory of the social model of disabilities 3. Evolution of the political representation of people with disabilities - 1993: Creation of the European Forum of persons with disability - Lobbying: UN, WHO, European Council, European Parliament: - Nothing about us without us - Consultative status of Persons with disabilities NGOs

Models of Disability: 1 - Individual Model Disability as an individual pathology 2 variants Biomedical approach: - Prevention: intervention, prenatal diagnosis, eradication of the causal disease - Treatment: recovery by medical or technological Means, - Society’s responsibility: recovery of Handicapped person Functional approach: Prevention: early diagnosis and reeducation Treatment: means of functional rehabilitation Society’s responsibility: To improve the daily lives of persons with disabilities by means of compensation. 2 - Social Model Disability as a social pathology “It is society that disables us, not our impairments. ” 2 variants Environmental approach: - The handicap is a consequence of the absence of environmental planning - Treatment: make the environment accessible - Society's responsibility: identification and elimination of the architectural, economic, social and psychological barriers Approach based on human rights: - The handicap results from social organization problems and connection problems between the society and the individual - Treatment: Reformulation of the political, economic and social “rules” - Society's responsibility : Reducing the inequalities in rights and permitting, ensuring access to full citizen rights

Systemic Model of Disability (P. Fougeyrollas RIPPH/SCCIDIH, Canada, 1998 , J. Sanchez CTNERHI 1989, 2002) - TRT: individual and collective An independent life in an accessible society = Environmental + Individual approach + Human Rights - Society's responsibilities: identifying and eliminating individual difficulties and social and psychological barriers

Interaction of Concepts - 1998: DCP = Explanatory model of the causes and consequences of disease, trauma and other disruptions to a person’s integrity or development based on the anthropological model of human developpement Patrick Fougeyrollas and Co (RIPPH, Quebec) - 2001: ICF as the New Member in the WHO Family of international Classifications - to provide a scientific basis for consequences of health conditions - to establish a common language to improve communications • to permit comparison of data across countries, health care disciplines, services • to provide a systematic coding scheme for health information systems

A comprehensive model • The DCP is a global approach which considers disability not as a fixed “state” but as a process which limits the person’s activities. • In this model, the “disability” is differentiated from the “handicap” by the social variable that separates the two. • The “handicap” is considered as a disturbance in a person’s life habits as a result of interaction between personal factors (impairment or disability) and environmental factors (obstacles). It’s a relative “situation” which varies according to the context and the environment, but which can also be modified by reducing impairment (medical care) and develops capabilities (rehabilitation) as well as adapting the environment (policies, elimination of physical obstacles).

DCP: based on the Model of human development Every human being develops himself in an interactive model Personal factors (PF) (intrinsic) Environment Factors (EF) (extrinsic) Interaction Social participation Illustration of the dynamic of the interactive process between PF and EF that determines the performance of habits life realization depending on the age, gender, socio-cultural identity of the individual

Disability Creation Process The disability is not considered as a fixed state but an unsatisfying process that places the person in a situation of handicap Risk factors Cause Envrionmental Factors Personal Factors Organic systems Integrity Impairment « A life habit is a daily activity or a social role promoted by the person or his socio -cultural context according to his/her characteristics (age, sex, cultural identity). Capabilities Facilitator capacity Obstacle incapacity Interaction Life Habits Participation handicap Situation The HS is the partial or non-achievement of life habits resulting from the interaction between personal factors and environmental factors.

Interaction of Concepts ICF 2001 Health Condition (disorder/disease) Body function&structure (Impairment) Activities (Limitation) Environmental Factors Participation (Restriction) Personal Factors

Synthesis DCP ICF Health Condition (disorder/disease) Risk Factors Cause Personal factors Organic system Environmental Factors Capabilities Facilitator Interaction Life habits Participation Handicap Situation Obstacle Body function & structure (Impairment) Activities Limitation Environmental Factors Participation (Restriction) Personal Factors

DCP Application: Individual plan of intervention To extract the information Risk factors Impairment Capabilities/ Disabilities to select the USEFUL information Request, expectation, desires Life habits Environment Surveys Syntheses and formulation of the handicap situation INDIVIDUAL PLAN OF INTERVENTION Synthesis document) Coordination of goals to reach The plan of the team Intervention

ICF APPLICATIONS IN POLICY MAKING • Assessment of population health • Impact of disability – economic – social • Evidence-base for policy makers on different policy interventions – responsiveness of services – efficiency – performance assessment

ICF-based tools In France: the new disability policy defined by the law n° 2005 -102 is partially based on the ICF concepts. The law attempts to reduce the activities limitations or the restriction of participation by: - A better accessibility - Collective and individual compensations A multidisciplinary team assesses the compensation needs for a person with disability on the basis of: - His or her life objectives (life project) - Defining references by the law Using the GEVA (guide for multidimensional assessment of compensation needs of person with disability) for: - Assessment the different dimensions of the disability of the person - Analysis compensation needs - Elaborating a compensation plan the team proposes a personalized plan of compensation of the disability