University of Warwick
“Kids with Disabilities:
Definition, Classifications and Human
Rights"
Jerome E. Bickenbach
Schweizer Paraplegiker Forschung, Switzerland
Queen’s University, Canada, and
World Health Organization
University of Warwick
“Kids with Disabilities: Definition,
Classifications and Human Rights“
I.
Definitions of disability and classification of
disability: the road to WHO’s ICF and ICF-CY
II.
Human rights and disability (Convention on the
Rights of Persons with Disability – CRPD)
Research….
University of Warwick
“Kids with Disabilities: Definition,
Classifications and Human Rights“
I.
Definitions of disability and classification of
disability: the road to WHO’s ICF and ICF-CY
II.
Human rights and disability (Convention on the
Rights of Persons with Disability – CRPD)
Research….
The World Health Organization
Disability Odyssey 1976-….
From the puzzle of disability
to
INTERNATIONAL LANGUAGE OF FUNCTIONING
AND DISABILTY
ICF
Disability: dichotomous or
continuous?
NORMAL
DISABLED
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
UNStat prevalence of ‘severe disability’ for
selected countries
35
30
Survey disability
25
20
15
10
5
0
Social and legal definitions…
The term "disability" means, with respect to an individual(A) a physical or mental impairment that substantially limits one or more of the
major life activities of such individual;
(B) a record of such an impairment; or
(C) being regarded as having such an impairment.
''Disability'' means incapacity because of injury to earn the wages which the employee
was receiving at the time of injury in the same or any other employment
The term ''handicapped individual'' means any individual who has a physical or mental
disability (including, but not limited to, blindness or deafness) which for such
individual constitutes or results in a functional limitation to employment, or who
has any physical or mental impairment (including, but not limited to, a sight or
hearing impairment) which substantially limits one or more major life activities of
such individual.
The term ''functionally disabled'' means an individual who is determined to require
home- and community-based services…
Disability and Health
“…disability has nothing to do with the
body but everything to do with society.”
Mike Oliver, 1996
“…disability is a decrement of functioning,
and as such is a decrement of health.”
WHO, 2005
WHO’s
International
Public
HealthData
Agenda
WHO’s
Rationale:
Disability
for Disability
Information about
Disease prevalence
Injuries
Causes of Death
But also information about the
lived experience of health
…levels of functioning and disability.
INFORMATION GAPS
HEALTH SECTOR
Service needs
Intervention effectiveness
Service utilization patterns
Service models
Outcomes
Costs
Cost effectiveness
INFORMATION GAPS
SOCIAL SECTOR
Lost productivity and Disability
how big a problem?
Return-to-work policy
does policy work?
Anti-discrimination law
what effect does it have?
WHO’S
INFORMATION
WHO’sDISABILITY
Rationale: Disability
Data
AGENDA
DISABILITY
CONCEPT
CLASSIFICATION
ASSESSMENT
MEASUREMENT
ICIDH (1980)
ICIDH
ICF (2001)
Developed 1976
Published for ‘trial purposes’ 1980
ICIDH-1
ICIDH-2
‘Alpha’
‘Beta 1’
‘Beta 2’
1995
1996
1997
1999
Prefinal 2000
Item pool development; consultations;
Tasks to collaborating centres;
Drafting
Professional, NGO, governmental input;
Concept mapping, Cultural Applicability Research;
Field trials for validity, reliability and feasibility
Field trials and consultations through UN system
ICF Endorsed by the World Health Assembly
May 1, 2001
ICF
- Full version
- Short version
- CD-ROM
The
of disability’
Disability
The Debate
debate over
over ‘Models’
‘models of
Medical model
Disability is really about physiological and
psychological abnormalities (caused by diseases
disorders or injuries) that need medical treatment.
Social model
Disability is really about the social
disadvantages caused by the physical and social
environment that restrict the lives of people with
functional problems
The
of disability’
Disability
The Debate
debate over
over ‘Models’
‘models of
Medical model
Reduces disability to…
»problem located in the person
»body needs cure or corrected
»medical focus
»independent of environment
COMPROMISE?
»problem in the environment
»world needs to be changed
»social/political focus
»independent of functioning
Reduces disability to…
Social Model
The
of disability’
Disability
The Debate
debate over
over ‘Models’
‘models of
Environment
Person
Developing the ICF
ICF Model
Model
FUNCTIONING
BODY
IMPAIRMENT
ACTIVITY
PARTICIPATION
ACTIVITY
LIMITATION
PARTICIPATION
RESTRICTION
DISABILITY
Developing the ICF
ICFModel
Model
HEALTH CONDITION
FUNCTIONING
BODY
IMPAIRMENT
ACTIVITY
ACTIVITY
LIMITATION
PARTICIPATION
PARTICIPATION
RESTRICTION
DISABILITY
CONTEXTUAL FACTORS
Developing the ICF
ICF Model
Model
Health Condition
BODY FUNCTIONS
& STRUCTURES
ACTIVITY
Impairments
Activity Limitations
Environmental
Factors
PARTICIPATION
Participation
Restrictions
Personal Factors
b 210
Seeing functions
Sensory functions relating to sensing the presence of light and sensing the form, size, shape and
colour of the visual stimuli.
Inclusions: visual acuity functions; visual field functions; quality of vision; functions of sensing light and
colour, visual acuity of distant and near vision, monocular and binocular vision; visual picture quality;
impairments such as myopia, hypermetropia, astigmatism, hemianopia, colour-blindness, tunnel vision,
central and peripheral scotoma, diplopia, night blindness and impaired adaptability to light
Exclusion: perceptual functions (b156)
b 2100
Visual acuity functions
Seeing functions of sensing form and contour, both binocular and monocular, for both
distant and near vision.
b 21000
Binocular acuity of distant vision
Seeing functions of sensing size, form and contour, using both eyes, for objects distant
from the eye.
b 21001
Monocular acuity of distant vision
Seeing functions of sensing size, form and contour, using either right or left eye alone,
for objects distant from the eye.
b 21002
Binocular acuity of near vision
Seeing functions of sensing size, form and contour, using both eyes, for objects close
to the eye.
b 21003
Monocular acuity of near vision
Seeing functions of sensing size, form and contour, using either right or left eye alone,
for objects close to the eye.
b 21008
Visual acuity functions, other specified
b 21009
Visual acuity functions, unspecified
ICF Definition of Disability
Interactive nature of disability
Disability is the outcome of an
interaction between intrinsic features
of the person and extrinsic features
of the person’s physical,
human-built, social and attitudinal
environment.
“The definition of disability: what is in a name?”
The Lancet Vol 368 October 7, 2006
Disability is a difficulty in
functioning at the body, person, or
societal levels, in one or more life
domains, as experienced by an
individual with a health condition in
interaction with contextual factors.
ICF
- Full version
- Short version
- CD-ROM
ICF Applications
Some examples
Actual and Potential
ICF as Model of Service Delivery
ICF is a model for information
and information systems
points of entry
throughput
outcome
surveys/questionnaires
assessments
clinical description
coding
crosswalking
storage
information retrival
analysis
evaluation
ICF as Model of Service Delivery
ICF is a model for interventions
and intervention planning
Acute Care
Acute Rehabilitation
Community Rehabilitation
IMPAIRMENT
ACTIVITY LIMITATION
PARTICIPATION RESTRICTIONS
ICF as Model of Service Delivery
ICF is a model for communication
between professions
ICF in legal language
Framework Directive Establishing a General
Framework for Equal Treatment in Employment
and Occupation
(Article 13, Treaty of Amsterdam, 1997)
Consistent definition of
‘disability’ across European Community for
anti-discrimination legislation
ICF and ‘participation gaps’
Participation gap analysis…
1. Measure levels of participation in non-disabled
population at work, in employment, education,
community life, etc.
2. Measure levels of participation for persons with
disability (stratified by type)
The difference is a ‘participation gap’
Needs assessment
Policy planning
Outcomes research
Cost-effectiveness
Trauma Recovery and Work Requirements
Injury
W
o
R
k
Work requirements WITHOUT
accommodations
Range of
Environmental modification
C
A
P
A
C
I
T
y
C
Work requirements
WITH accommodations
A
B
Time
ICF in practice
Gaps between Capacity and Performance
d450.12
.4
Walking
.3
.2
.1
.0
Performance
Capacity
= positive effect of environment
Walking performance is better than walking capacity – environmental assistance (e.g.
cane) improves performance
ICF in practice
Gaps between Capacity and Performance
d7400.31
Relating with persons in authority
.4
.2
.3
.1
.0
Performance
Capacity
= negative effect of environment
Relating performance is worse than capacity – attitudes of boss is environmental
barrier to relating to persons in authority
A common language for the health
of children and youth
Developing the ICF-CY: WHO work
group activities
1996-2001- Children’s task force in ICF development
2002-2005- WHO ICF-CY work group meetings (Africa, Europe,
North America, Asia)
2006- November WHO-FIC approves ICF-CY
2007-October- ICF-CY ”launch” in Venice
With support from NCBDDD/CDC
Assistance of Dutch, Nordic, North American and
Australian WHO Collaborating Centers
Developing the ICF-CY
•
•
•
•
•
Consistent ICF framework & structure
Definitions expanded and clarified
Inclusion/exclusion criteria expanded
Inclusion of concept of ”delay” in qualifier
New content added to unused codes at 4, 5 and
6 character level
• Majority of new content in Activities &
Participation
Characteristics of the ICF-CY
• Derived from ICF main volume
• Documents nature and form of child functioning
as developmental precursors of those in adults
• Recognizes child as a “moving target” –physical,
behavioral, psychological change with age
• Yields indicators of functional risk factors for
prevention and early intervention
• Continuity of ICF-CY to ICF documentation in
transitions across child to adult services
• Provides Common Language!
Some early research applications...
Surveillance example: North Carolina
School Youth Risk Behavior Survey (YRBS)
• Middle school students: N=2333, N=2553
• Three disability indicators ( BF/AP)
– A disability can be physical, mental, emotional or
communication related. Do you consider yourself to
have a disability? (BF)
– Are you limited in any way in any activities because
of any impairment or health problem? (A&P)
– Because of any impairment or health problems, do
you have any problem learning, remembering or
concentrating? (A&P)
•
(Simeonsson, RJ, McMillen, J, McMillen, B & Lollar, D. (2003). APHA.
San Fransisco, 2003).
NC YRBS: Findings
• Students with disabilities at higher risk
– Less likely to have seen health care
provider in last 12 mo.
– More likely to feel sad and hopeless
– Less likely to perceive self as healthy
– More likely to have considered suicide
– Less likely to perceive QOL as good
• Students in “unsure” category also at
higher risk on many of the same
indicators
Health informatics: Swedish Child
health data project
• Project targets:
• 1. Identify health related information to be
recorded for every child in child health and
school health services
• 2. Recording of information in electronic health
record and managed within/across service
sectors
• 3. Develop information technology needed to
support this system within service sectors
Health informatics: Tennessee Child
Health Profile project
• Cooperative project of universities and
state Tennessee
• Strategies:
– A. establish electronic health record
to integrate data sources across
state
– B. Create Child Health Profile of
health indicators based on ICF-CY
– C. provide secure access for parents
and service providers on child health
status
Policy formulation: special education in
Japan
The Applied use of ICF: Focus on
Support of Children with
Disabilities. (2005)
2nd Ver. The Use of ICF/ICF-CY:
from Attempt to Practice –
Focus on Special Need
Education –(2007 ),
Manuals for use of ICF with
children and youth.- Published
by National Institute of Special
Education (NISE) Japan,
NISE has established a project
"Developmental Research on the
use of the ICF-CY for
Educational Policy (2006-2008)
Clinical use of ICF-CY: clarifying
diagnoses of children
• Same
diagnoses may differ in functional characteristics(e.g. ADHD, mental retardation, autism)
•Different diagnoses may share functional
characteristics- (e.g. Fra-X, Rett Syndrome, ASD)
•Problem of co-morbidity
–assumes distinct and unique nature of manifested
characteristics
– but may reflect “successive” or “concurrent”
manifestation of single, global underlying process
(Knapp & Jensen, 2006)
• Need to “break apart the phenotype” and recognize
importance of “environtype” and “trajectory type” in
recommendations for DSM- V (Jensen, Knapp & Mrazek,
2006)
University of Warwick
“Kids with Disabilities: Definition,
Classifications and Human Rights“
I.
Definitions of disability and classification of
disability: the road to WHO’s ICF and ICF-CY
II.
Human rights and disability (Convention on the
Rights of Persons with Disability – CRPD)
Research….
UN Convention on the rights
of the child
•
•
•
•
•
•
•
•
•
Integrity as a person:
Articles 1-3
Inherent right to life/survival:Article 6
Identity
Articles 7-8
Family environment:
Article 9, 18
Right to be heard
Article 12,13
Protect from exploitation:
Articles 19, 32 34
Protection in institutional care: Article 20, 25
Education
Article 22
Highest allowable health
Article 24
Convention on the Rights
of Persons with Disabilities
Convention Timeline





Adoption by the United Nations General
Assembly - 13 December 2006
Opened for signature - 30 March 2007
Entry into force - 30 days after 20th ratification of
Convention/10th ratification of Optional Protocol
Convening of the Conference of States Parties –
4-7 November, 2008 (New York)
Election of the experts to the Committee on the
Rights of Persons with Disabilities –
4-7 November, 2008 (New York)
Convention on the Rights of Persons with Disabilities
Why a Convention?

A response to an overlooked development challenge:
approximately 10% of the world’s population are persons
with disabilities (over 650 million persons).
Approximately 80% of whom live in developing countries

A response to the fact that … Persons with disabilities
continued being denied their human rights and have
been kept on the margins of society in all parts of the
world.
The Convention sets out the legal obligations on States
to promote and protect the rights of persons with
disabilities.
It does not create new rights.
Convention on the Rights of Persons with Disabilities
Purpose of Convention (Article 1)
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
Convention on the Rights of Persons with Disabilities
What’s unique in the Convention?



Both a development and a human rights
instrument
A policy instrument which is cross-disability and
cross-sectoral
Legally binding
Convention on the Rights of Persons with Disabilities
What is Disability?


The Convention does not explicitly define disability
Preamble of 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 the 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’.
Convention on the Rights of Persons with Disabilities
What is Disability?

Disability results from an interaction between a noninclusive society and individuals:
 Person using a wheelchair might have difficulties
gaining employment not because of the wheelchair,
but because there are environmental barriers such as
inaccessible buses or staircases which impede access
 Person with extreme near-sightedness who does not
have access to corrective lenses may not be able to
perform daily tasks. This same person with
prescription eyeglasses would be able to perform all
tasks without problems.
Convention on the Rights of Persons with Disabilities
General Principles (Article 3)








Respect for inherent dignity, individual autonomy including the
freedom to make one’s own choices, and independence of
persons
Non-discrimination
Full and effective participation and inclusion in society
Respect for difference and acceptance of persons with
disabilities as part of human diversity and humanity
Equality of opportunity
Accessibility
Equality between men and women
Respect for the evolving capacities of children with disabilities
and respect for the right of children with disabilities to preserve
their identities
Convention on the Rights of Persons with Disabilities
Rights in the Convention








Equality before the law without
discrimination (article 5)
Right to life, liberty and security
of the person (articles 10 & 14)
Equal recognition before the law
and legal capacity (article 12)
Freedom from torture (article 15)
Freedom from exploitation,
violence and abuse (article 16)
Right to respect physical and
mental integrity (article 17)
Freedom of movement and
nationality (article 18)
Right to live in the community
(article 19)









Freedom of expression and
opinion (article 21)
Respect for privacy (article 22)
Respect for home and the family
(article 23)
Right to education (article 24)
Right to health (article 25)
Right to work (article 27)
Right to adequate standard of
living (article 28)
Right to participate in political
and public life (article 29)
Right to participation in cultural
life (article 30)
Convention on the Rights of Persons with Disabilities
Optional Protocol

Creates additional functions for the Committee on
the Rights of Persons with Disabilities:


Individual communications: Committee considers
communications from individuals or group of individuals
claiming to be victims of a violation of the provisions of the
Convention by a State Party of the party to the Protocol
Inquiries: Committee member may conduct an inquiry on a
State Party, following information received indicating grave
or systemic violations of the Convention by State Party
Convention on the Rights of Persons with Disabilities
Convention and children…








Preamble
Article 3 General principles
Article 7 Children with disabilities
Article 18 Liberty of movement and
nationality
Article 23 Respect for home and the family
Article 24 Education
Article 25 Health
Article 30 Participation in cultural life,
recreation, leisure and sport
Convention on the Rights of Persons with Disabilities
On children…

Preamble
(r) Recognizing that children with disabilities
should have full enjoyment of all human rights
and fundamental freedoms on an equal basis
with other children, and recalling obligations to
that end undertaken by States Parties to the
Convention on the Rights of the Child,
Convention on the Rights of Persons with Disabilities
On children…

Article 3 General principles
The principles of the present Convention shall be:
…
(h) Respect for the evolving capacities of
children with disabilities and respect for the right
of children with disabilities to preserve their
identities.
Convention on the Rights of Persons with Disabilities
On children…

Article 7
Children with disabilities
1. States Parties shall take all necessary
measures to ensure the full enjoyment by
children with disabilities of all human rights and
fundamental freedoms on an equal basis with
other children.
2. In all actions concerning children with
disabilities, the best interests of the child shall be
a primary consideration.
Convention on the Rights of Persons with Disabilities
On children…

Article 7 Children with disabilities
3. States Parties shall ensure that children with
disabilities have the right to express their views
freely on all matters affecting them, their views
being given due weight in accordance with their
age and maturity, on an equal basis with other
children, and to be provided with disability and
age-appropriate assistance to realize that right.
Convention on the Rights of Persons with Disabilities
On children…

Article 18 Liberty of movement and
nationality
…
2. Children with disabilities shall be registered
immediately after birth and shall have the right
from birth to a name, the right to acquire a
nationality and, as far as possible, the right to
know and be cared for by their parents.
Convention on the Rights of Persons with Disabilities
On children…

Article 23 Respect for home and the family
(c) Persons with disabilities, including
children, retain their fertility on an equal
basis with others.
3. States Parties shall ensure that children with
disabilities have equal rights with respect to
family life…. States Parties shall undertake to
provide early and comprehensive information,
services and support to children with disabilities
and their families.
…
Convention on the Rights of Persons with Disabilities
On children…

Article 23 Respect for home and the family
4. States Parties shall ensure that a child shall
not be separated from his or her parents against
their will, except when competent authorities
subject to judicial review determine…that such
separation is necessary for the best interests of
the child. In no case shall a child be separated
from parents on the basis of a disability of either
the child or one or both of the parents.
…
Convention on the Rights of Persons with Disabilities
On children…

Article 23 Respect for home and the family
5. States Parties shall, where the immediate
family is unable to care for a child with
disabilities, undertake every effort to provide
alternative care within the wider family, and
failing that, within the community in a family
setting.
Convention on the Rights of Persons with Disabilities
On children…

Article 24 Education
2. In realizing this right, States Parties shall
ensure that:
(a) Persons with disabilities are not excluded
from the general education system on the basis
of disability, and that children with disabilities are
not excluded from free and compulsory primary
education, or from secondary education, on the
basis of disability;
Convention on the Rights of Persons with Disabilities
On children…

Article 24 Education
(c) Ensuring that the education of persons, and
in particular children, who are blind, deaf or
deafblind, is delivered in the most appropriate
languages and modes and means of
communication for the individual, and in
environments which maximize academic and
social development.
Convention on the Rights of Persons with Disabilities
On children…

Article 25 Health
1. ..
(b) Provide those health services needed by
persons with disabilities specifically because of
their disabilities, including early identification and
intervention as appropriate, and services
designed to minimize and prevent further
disabilities, including among children and older
persons;
Convention on the Rights of Persons with Disabilities
On children…

Article 30 Participation in cultural life,
recreation, leisure and sport
5.
(d) To ensure that children with disabilities have
equal access with other children to participation
in play, recreation and leisure and sporting
activities, including those activities in the school
system;
Convention on the Rights of Persons with Disabilities
University of Warwick
“Kids with Disabilities: Definition,
Classifications and Human Rights“
I.
II.

Definitions of disability and classification of
disability: the road to WHO’s ICF and ICF-CY
Human rights and disability (Convention on the
Rights of Persons with Disability – CRPD)
RESEARCH…
Potential research areas for Kids with Disabilities in a
human rights context
ICF-CY opportunties:
Clinical research
i) core set development and
validation
ii) linking rules
iii) assessment tool
development
Potential research areas for Kids with Disabilities in a
human rights context
ICF-CY opportunties:
Health systems and public health
i) population disability statistics
ii) ‘horizontal’ epidemiology
iii) children health systems
research:
coherence across
continuum of care
iv) public health:
Potential research areas for Kids with Disabilities in a
human rights context
ICF-CY opportunties:
Health and social policy
i) ‘burden’ estimations of
childhood
diseases
ii) intervention planning
iii) community-based
programming
iv) education planning
Potential research areas for Kids with Disabilities in a
human rights context
CRPD opportunities:
Monitoring ‘progressive realization’:
Targets, indicators, data stream
Child-sensitive monitoring
protocols…
Potential research areas for Kids with Disabilities in a
human rights context
CRPD opportunities:
Translation to domestic legislation:
evidence-base policy with a
‘moral compass’
Potential research areas for Kids with Disabilities in a
human rights context
CRPD opportunities:
Theory:
with
i) Balancing universalism of rights
cultural differences
ii) ‘Equality’ analysis
University of Warwick
“Kids with Disabilities: Definition,
Classifications and Human Rights“
Thanks for listening….…
“Human Rights Approach” to Disability
Disability social policy, law, administrative or service
delivery governed by principles that…
 Policy, laws, services governed by human rights that
are universal, inalienable, indivisible, interdependent,
interrelated.
 The primary responsibility for the legal imperative to
respect, protect and fulfill human rights rests on
government officials.
 This is a matter of legal obligation and moral duty not
charity or benevolence.
Urban Jonsson “Human Rights Approach to developmental Planning” UNICEF 2003
Gruskin et al. “What Constitutes a Rights-based Approach? Definitions, Methods, and Practices,”
UNAIDS Issue Paper 2004
“Human Rights Approach” to Disability
Disability social policy, law, administrative or service
delivery governed by principles that…
 The government must discharge its obligation to
secure rights both transparently and with the full
participation and collaboration of people with
disabilities.
 Governments are responsible and accountable not
only for outcomes (practical realization of rights) but
also for the manner or process in which their
decisions are made.
“Human Rights Approach” to Disability
Disability social policy, law, administrative or service
delivery governed by principles that…
 Because rights are indivisible and interrelated, the
implemention of one right will often entail the
implementation of other rights, therefore government
responsibility is systemic across all areas of policy
subject to human rights.
 The human rights approach is not a matter of political
rhetoric but concrete change that directly benefits
people with disabilities (therefore the government is
required to set specific goals and targets for achieving
rights and monitoring and evaluating progress.)
“Human Rights Approach” to the right to health
“It establishes specific governmental
accountabilities for promoting population health by
articulating a right to health and related rights. It
broadens the arena in which health is pursued by
including various rights to a broad range of
environmental, legal, cultural, and social
determinants of health. It emphasizes the
importance of setting specific goals and targets for
achieving the rights that bear on health and then
monitoring and evaluating progress towards those
goals and targets. It insists on good governance,
and so it stresses the importance of transparency
and inclusion or participation in efforts to secure
these rights.”
N. Daniels, Just Health (Harvard UP, 2008)