Expert presentation by Ms. Judith Hollenweger, Head Priority Area Inclusive Education at the Zurich University of Teacher Education; Steering Committee member of the ICF Research Branch, WHO-FIC Collaborating Centre

Social Rights based Model
for Defining and Classifying Disability
Prof. Dr. Judith Hollenweger
Fourth Central Asian Forum on Child Protection
Dushanbe, 2nd August 2013

Overview
1. Approaches to «Disability»
2. ICF as an information system and a common language
3. Working together towards the realisation of rights
02.08.2013Social Rights based Model for Defining and Classifing Disability 4th Central Asian Forum on Child Protection 2

1. Approaches to Disability
A great many people think they are thinking when they
are really rearranging their prejudices.
William James

Charity Model
Well-being is in the hands of the gods or destiny
•Disability is a punishment or a tragedy
•Individual seen as needy, pitiful, even as blameworthy
•Salvation though mercy, love and care

Medical Model
Well-being is in the hands of the doctors
•Disability is a condition of the individual that can be treated
•Individual seen as being in need of a cure or management of illness
•It is the health professionals’s responsibility and potential to alleviate pain

Social model
Well-being is in the hands of society
•Disability is a societal problem solved through social action
•Individual seen as being a victim of social prejudice
•It is the society’s responsibility to eliminate barriers

Understanding «disability»
Disability can be understood by taking
•an economic perspective
•an educational perspective
•a human-rights perspective
•a socio-cultural perspective
•a health perspective
•…
Specific perspectives are assumed by specific groups and individuals. They guide
people’s thinking and actions. But for others they are the origin of prejudice.
It is time to move from “principlism” to “pragmatism”.
First step towards a common understanding is understanding one’s own thinking.

Social and human rights model
Well-being is in the hands of all of us and every one of us.

Disorder alone cannot predict functioning

Self-determination in defining «disability»?
0
5
10
15
20
25
30
35
Syria
Bangladesh
Tunisia
Lebanon
Sudan
Algeria
Benin
Thailand
Brazil
Libya
SriLanka
Jordan
Japan
Malawi
Philippines
Egypt
Italy
China
Colombia
Germany
Netherlands
Sweden
Austria
Spain
USA
Canada
Uruguay
Australia
NewZealand
Norway
Survey disability

Everything can make a difference!

If simple images …

…. have more than one side to them ….

… how much more complex would capturing «reality» be?

2. ICF as an information system and a common language
From many words arise just as many opportunities
for misunderstanding.
William James

Lack of common language at system level

What is disability?
Disability describes the situation of a person, not a fixed characteristic.
Disability is dependent on the expectations and requirements of the environment.
There are no «a priori» criteria to identify a person with disabilities – they are
«defined» as such. The path towards being identified as having a disability is
different in each country and even for each individual.
Any person in any moment of his or her life can have a health condition that in a
negative environment becomes a disability.
Disability is a difficulty in functioning at the body, individual or societal levels, in one
or more life domains, as experienced by an individual with a health condition in
interaction with contextual factors.
(Leonardi et al. 2006)

Need for an integrated understanding of disability
Human Functioning - not merely disability
Universal Model - not a minority model
Integrative Model - not merely medical or social
Interactive Model - not linear progressive
Parity - not etiological causality
Context - inclusive - not person alone
Cultural applicability - not western concepts
Operational - not theory driven alone
Life span coverage - not adult driven alone

ICF as information system: between knowledge and data
Identifying
concepts
Knowledge
Implicit knowledge embedded
in conceptual worlds,
knowledge basis
Giving meaning
to data
Explaining
concepts
Information
Articulated or verbalised
knowledge, embedded in
a structure or system
Understanding
data
Operationalising
concepts
Data
Atomised knowledge:
fixed representation
and interpretation
Reading data

ICF Model
Health Condition
Body Functions
and Structures
Activities Participation
Personal FactorsEnvironmental
Factors

Structure of the ICF and ICF-CYStructure of the ICF and ICF-CY
Classification
Parts
Components
Constructs/
qualifiers
Domains and
categories
at different levels
ICF
Part 1:
Functioning and
Disability
Part 2:
Contextual
Factors
Body Functions
and Structures
Activities and
Participation
Environmental
Factors
Personal
Factors
Change in
Body
Structures
Capacity Performance Facilitator/
Barrier
Item
levels:
1st
2nd
3rd
4th
Item
levels:
1st
2nd
3rd
4th
Item
levels:
1st
2nd
3rd
4th
Change in
Body
Functions
Item
levels:
1st
2nd
3rd
4th
Item
levels:
1st
2nd
3rd
4th

Body Component
Functioning from the perspective of the body and body systems
Body Functions are 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 or structure such as a significant
deviation or loss.

Activity and Participation Component
Functioning from an individual and societal perspective (life domains)
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.

Contextual Factors
Contextual Factors have impact on all components of functioning
Environmental Factors make up the physical, social and attitudinal environment in
which people live and conduct their lives.
Personal factors are also a component of contextual factors but they are not
classified in the ICF due to large social and cultural variance.

Body Functions and Body Structures
Mental functions
Sensory functions and pain
Voice and speech functions
Functions of the cardiovascular,
haematological, immunological and
respiratory systems
Functions of the digestive, metabolic
and endocrine systems
Genitouriary and reproductive functions
Neuromusculoskeletal and movement-
related functions
Functions of the skin and related
structures
Structures of the nervous system
The eye, ear and related structures
Structures involved in voice and speech
Structures of the cardiovascular,
haematological, immunological and
respiratory systems
Structures related to the digestive,
metabolic and endocrine systems
Structures related to the genitouriary
and reproductive systems
Structures related to movement
Skin and related structures

Activities and Participation – Life Domains
1 Learning & Applying Knowledge
2 General Tasks and Demands
3 Communication
4 Movement
5 Self Care
6 Domestic Life Areas
7 Interpersonal Interactions
8 Major Life Areas: Education, Work and Employment, Economic Life
1 Community, Social & Civic Life

Environmental and Personal Factors – Contextual Factors
1. Products and technology
2. Natural environment and human-made changes to the environment
3. Support and relationships
4. Attitudes
5. Services, systems and policies
Personal factors may include gender, age, social background, past and current
experiences, ethnic background, profession. They are understood as the
particular background of an individual’s living situation in relation to functioning

Lack of common language at individual level

ICF as a tool to bring together «fragmented» information
Body Functions
and Structure
Activities Participation Environmental
Factors
Mental Functions
Sensory Func-
tions and Pain
Voice and
Speech
Functions
Functions of the
cardiovasc ...
Functions of the
digestive ...
Genitourinary
and .....
Neuromusculo-
skeletal and
movement ...
Functions of Skin
and ....
Learning and Applying
Knowledge
General Tasks and
Demands
Communication
Mobility
Self Care
Domestic Life
Interpersonal Interactions
and Relationships
Major Life Areas
Community, Social and
Civic Life
Products and
Technology
Natural and
Human made
Changes to
Environment
Support and
Relationships
Attitudes
Services,
Systems and
Policies
Child Psychiatrist
Family
Therapist
Social
Worker
Teacher
Special Educator
Pediatrician
Speech Pathologist

Different domains can be selected as fit-for-purpose

Functioning as a continuum

How to use it? Real life is not a list ….

…. but capturing everything is not feasible!

Rights-based approach: Start with «Participation»

Participation is «Involvement in Life Situations»
«Participation as being engaged…»
− Behavioural engagement (positive conduct, involvement in learning and academic
tasks, participation in school-related activities)
− Cognitive engagement (self-regulation, flexibility in problem-solving, coping strategies)
− Emotional engagement (affective reactions such as interest, happiness, identification
with teachers and peers)
… «in typical routines in typical settings…»
… «that are directed towards personally and/or socially meaningful goals.»
Demonstrate and experience competence (e.g. cognitive, communicative,
manual, emotional, etc.)
Demonstrate and experience autonomy (e.g. direct attention, self-regulate
behaviour to carry out complex actions, taking decisions on one’s life)
Demonstrate and experience belonging (e.g. show interest in others, be
motivated to consider suggestions of others, feeling accepted and welcomed)

Bringing together proximal and distal perspectives
Time
Space/Context

Functioning is always contextualised

Functioning takes place in social situations

Understanding life situations requires going …

… beyond the information given.
Body functions and
body structures
Activities
Participation as…
carrying out tasks in current environment
involvement in life situations
involvement in major life domains

Personal situatedness
ICF: Interplay between functioning and personal factors
Where a person stands in his or her life.
Individual life situation.
Past experiences are linked to present sense of own capabilities and what a person
thinks is feasible to achieve.
Learning as overcoming problems of action – may be focussed on different
objectives than adults think.
Agency and communion required to promote development.

Different personal situations across childhood
ICD-10
H55 Nystagmus and other irregular eye
movements
ICF
Seeing functions
Prognosis at age 1:
Will be “legally blind” with all its implications
for watching, learning, moving around…
Participation in Education?
Participation in Mobility?
Participation in Domestic Life?

At age five
Prognosis proofed to be wrong.
Problems
Speech Development
Motor Development
Hyperactivity
Attention and interests on things
Easily out of control
Sleeps badly, cries a lot
A difficult child?
A disabled child?
A sick child?

At age 15
Many problems disappeared, but new ones emerged:
General tasks and demands
Interpersonal interactions and relationships
Major life areas: Education
Community, social and civic life

Social situatedness
ICF: Interplay between functioning and environmental factors
The ability to engage in acts of communication and participate in social practices
within a community.
As communities of practice, we create spaces and places for functioning.
Everything in the person has to be first lived between persons.
Much more than «social determinants of health»
 Activity Theory (Engeström 2001) can be used for better understanding.

Opportunities to participate – towards which goal?
tools and artefacts
Subject
Rules Community Division of labour
Object
Outcome
Sense,
meaning

3. Working together towards the realisation of rights
A problem well put is half solved.
John Dewey

Action towards human rights
Progressive realisation
•Transforming the rhetorical aspirations of CRPD and CRC into concrete results
•Realistic understanding of the restraints states confront when satisfying their
human rights obligations
Awareness of cirumstances
•Requires flexibility to changing circumstances
•Situational differences affecting the distribution of resources
Negotiation
•Universal human rights are said to be ‘non-negotiable’, but….
•… negotiation is the primary political mode of the realisation of human rights.
Bickenbach 2009

Need for an integrated view for action
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

Synchronise problem-solving processes
new
situation,
problem

A vision of future participation to guide action
02.08.2013Social Rights based Model for Defining and Classifing Disability 4th Central Asian Forum on Child Protection
Services, Schools,
Professionals
Goals and Contents
of Education
A shared vision of
future participation
51

Capturing problems using the ICF-CY
Different expertise – different perception of problem:
Which problems of children with disabilities are you most aware of?
Which problems of children are you able to address best?
Different expertise – different approaches to capturing problems:
A child comes to your school / our office / classroom / clinic for the first time
•What do you do first?
•Which questions do you ask the parents?
•How do you gain an understanding of the situation of the child?
•Do you apply a method or a procedure in such situations?
new
situation,
problem

Collecting, measuring and documenting
Mapping functioning and disability as it is related to:
•Disorder (functioning of children with HIV/AIDS, Cerebral Palsy, Autism)
•Disability (functioning of children with Intellectual Disabilities)
•Participation (functioning essential for survival, child development, education)
Applications:
•Disability Module of UNICEF (10 questions)
•ICF-Checklists and Questionnaires (0 to <3, 3-6, 6-12, >13)
•Functional Profiles
•Observation forms to capture Activities and Participation
Requirements:
•Expertise to adequately map test results, observations, etc. to ICF-CY codes
•Expertise to adequately represent severity levels by using the qualifiers
measuring,
collectingmeasuring,
collecting

Intermezzo on «Observation»
Playing basketball
Count how many times the players wearing
white pass the ball.
Available at: http://www.youtube.com/watch?v=vJG698U2Mvo

Using ICF to understand complex situations
Developing a shared understanding of complex situation:
•Dynamics of functioning at body, person and societal levels
•Linking ICF-based information with information on risk factors, case history
•Integration of information from different data sources
Applications:
•Using a procedures to integrate information from different sources
•Documenting outcome of interdisciplinary meetings
•Prioritizing further discussions based on an coherent and integrated problem
description
Requirements:
•Expertise to judge relevance and select information to understand situations
•Willingness to deal with diversity of thinking and understanding problems
analysing,
understanding

Using ICF for setting goals
Developing a shared vision of future functioning:
•Present functioning is projected into the future
•Necessary adaptations or changes in the environment are considered
•Different perspectives from different players can be integrated
Applications:
•Understand the visions and objectives of different players
•Reach a common vision that can be pursued in different contexts
Requirements:
•Expertise to judge impact of functional limitations on future functioning
•Knowledge related to developmental processes and dynamics
•Willingness to integrate knowledge and expertise
planning,
deciding

Using ICF for planning and decision-making
Solving problems and making decisions as they relate to:
•Medical indications, social indications, educational indications
•Identify targets, develop visions of goals, check availability of resources
•Contextual considerations related to collaboration practices, available expertise
Applications:
•ICF-based eligibility procedure developed in Switzerland
•Individual educational plans (Veneto, Italy)
•School-based collaborative assessment meetings (Zurich, Switzerland)
Requirements:
•Ability to consider and synthesize information related to a complex situation with
expertise on carrying out interventions and knowledge of their likely effect
•Openness to considerations and values of other stakeholders - negotiation
planning,
deciding

Using ICF for evaluation
Content and level of functioning as targets of interventions
•Need to operationalise functioning in a way which allows to measure impact of
interventions
•Need to relate environmental changes (interventions) to functional outcomes
•Monitoring potential negative effects on other aspects of functioning
Applications:
•Next meeting starts with an evaluation of goals and means
•Revision of the interventions with regard to their effectiveness
Requirements:
•Expertise to identify relevant content from ICF as targets and us adequate
measurements
•Expertise to reliably observe, measure or otherwise capture changes
planning,
decidingcontroling,
evaluating

Linking participation to services, systems and policies
Chronological Perspective
Measuring
Collecting
Analysing
Understanding
Planning
Deciding
Acting
Implementing
Controlling
Evaluating
Policies
Organisations
Services
Participatory relationships as mediators between opportunities and person
Participation of Child and
Youth
European Agency for Development in Special Needs Eudcation, 2011
Systems
Perspective

Thank you for your interest and attention.
Prof. Dr. Judith Hollenweger
Zurich University of Teacher Education
Priority Area Inclusive Education
judith.hollenweger@phzh.ch

Expert presentation by Ms. Judith Hollenweger, Head Priority Area Inclusive Education at the Zurich University of Teacher Education; Steering Committee member of the ICF Research Branch, WHO-FIC Collaborating Centre

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Expert presentation by Ms. Judith Hollenweger, Head Priority Area Inclusive Education at the Zurich University of Teacher Education; Steering Committee member of the ICF Research Branch, WHO-FIC Collaborating Centre

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