Expert presentation by Ms. Judith Hollenweger, Head Priority Area Inclusive Education at the Zurich...

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

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15

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25

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35

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Ban

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Tun

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Leba

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Sud

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Alg

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Ben

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Phi

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nes

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land

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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

Identifyingconcepts

KnowledgeImplicit knowledge embedded

in conceptual worlds,knowledge basis

Giving meaningto data

Explainingconcepts

InformationArticulated or verbalised

knowledge, embedded ina structure or system

Understandingdata

Operationalisingconcepts

DataAtomised knowledge:

fixed representationand interpretation

Reading data

ICF Model


Health Condition

Body Functions and Structures

Activities Participation

Personal FactorsEnvironmentalFactors


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 andrespiratory 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 andrespiratory 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 Functionsand Structure

Activities Participation EnvironmentalFactors

Mental FunctionsSensory Func-

tions and PainVoice and

SpeechFunctions

Functions of thecardiovasc ...

Functions of thedigestive ...

Genitourinaryand .....

Neuromusculo-skeletal andmovement ...

Functions of Skinand ....

Learning and ApplyingKnowledge

General Tasks andDemands

CommunicationMobility

Self CareDomestic Life

Interpersonal Interactionsand RelationshipsMajor Life Areas

Community, Social andCivic Life

Products andTechnology

Natural andHuman madeChanges toEnvironment

Support andRelationships

AttitudesServices,

Systems andPolicies

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-10H55 Nystagmus and other irregular eye movements

ICFSeeing 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.

ProblemsSpeech DevelopmentMotor DevelopmentHyperactivityAttention and interests on thingsEasily out of controlSleeps 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 demandsInterpersonal interactions and relationshipsMajor life areas: EducationCommunity, 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

OutcomeSense,

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

MeasuringCollecting

AnalysingUnderstanding

PlanningDeciding

ActingImplementing

ControllingEvaluating

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

Sys

tem

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Thank you for your interest and attention.

Prof. Dr. Judith Hollenweger

Zurich University of Teacher Education

Priority Area Inclusive Education

[email protected]


Expert presentation by Ms. Judith Hollenweger, Head Priority Area Inclusive Education at the Zurich...

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