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 …
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1. Why define and classify disability?
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http://unstats.un.org/unsd/demographic/sconcerns/disability/disab2.asp
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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
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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
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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
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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.
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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?
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Health as a global notion
Health = Absence of disease
Health = Complete physical, psychological, spiritual and social well being
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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)
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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
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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
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ICF: Interaction of concepts
Health Condition
(disorder/disease)
Body function &
structure
(Impairment)
Activities
(Limitation)
Environmental
Factors
Participation
(Restriction)
Personal
Factors
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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.
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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.
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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.
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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
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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
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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)
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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.
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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
›
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3. How does the ICF relate to
some of the major ideas about disability?
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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
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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. …
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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
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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
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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
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4. How does the ICF relate to health, the ICD and the
WHO Family of International Classifications?
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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?
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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
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World Report on Disability
› UN Convention as
framework - a broad
view of disability
› ICF as technical
standard and
statistical framework
2
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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
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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
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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)
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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
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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
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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
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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
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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
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