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Disability and Data © UNICEF Nepal/Database All Staff Meeting: 25 September 2020.
Disability and Data
© UNICEF Nepal/Database
All Staff Meeting: 25 September 2020.
• Defining disability is complex and multi-dimensional
• It is greatly influenced by cultural beliefs
• Definition of disability influences data collection and analysis
Defining disability
Absence of common understanding
The complexity of disability leads to definitional challenges:
– Different terms used with the same meaning
– Same term used with different meanings
© UNICEF Nepal/Database
MODELS OF DISABILITY
• Charity model • Medical model• Social model• Biopsychosocial model• International Classification of Functioning,
Disability and Health (ICF) & International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)
© UNICEF Nepal/Database
…can provide a window into understanding how attitudes towards disability and people with disabilities
are translated into ‘action’.
Models of disability…
How do people with disabilities interact:• with society? • with each other? • with the medical profession? • with the research community?
© UNICEF Nepal/Database
Charity model: History
• Originated from the work of people & institutions with good intentions to help people in need• Principal disability model up to World War II• Led to segregation of individuals with disabilities• The model is still used today, and organizations that implement this model often do not consult
individuals with disabilities in their efforts
Disability conceptualized within the charity model
• Disability defined in terms of charity and benevolence rather than justice and equality
• Persons with disabilities are seen as victims of circumstance, as needing help, care and protection and deserving pity
• Considered to lack the capability to help themselves• Disability lies within the individual
© UNICEF Nepal/Database
Medical model: History
• With the advent of modern medicine, disability, as a state or condition, came increasingly under the direction of the medical profession
• Most prominent after World War II when many veterans with combat-related injuries needed medical care and rehabilitation
Disability conceptualized within the medical model
• Characterization of normal vs. abnormal⁻ Focus on what a person cannot do⁻ Impairment to be treated
• Functional difficulties are seen as the result of a medical condition with an emphasis on cure (eradicate the cause) and rehabilitation (restore or substitute for the lost ability to function)
• Disability lies within the individual
Social model: History
• Political movement in the 1960s led by people with disabilities • Shaped legislation for children and adults with disabilities • Key in establishing Disabled Persons Organizations (DPOs)
Disability conceptualized within the social model
• Disability is conceptualized as the outcome of the interaction between a person with a functional difficulty and an unaccommodating environment that results in their inability to fully participate in society
• Disability occurs as a result of environments that do not accommodate differences in peoples’ capacities to function
Biopsychosocial model: Rationale
• The biopsychosocial model incorporates components of the medical and social models • A holistic model that includes both a dimension at the level of a person's body and a
dimension that is primarily a social phenomenon• As a result, addressing the needs of persons with disabilities requires medical and
rehabilitative interventions and environmental and social interventions to eliminate restrictions in participation in all arenas of life
Disability conceptualized within the biopsychosocial model
• Disability is complicated – incorporates a variety of different components: body functions & structure, limitations in activities (capacity) and restrictions in participation (performance), and also includes characteristics of both the person and their environment
• The language of disability is not specific
The International Classification of Functioning, Disability and Health (ICF)
• Adopted in 2001• Broad theoretical framework for
classifying health-related human functioning
• Realized the shift from medical model to biopsychosocial model
• First time disability was classified on the basis of functioning
⁻ Takes a holistic view
Disability conceptualized within the ICF
The International Classification of Functioning, Disability and Health, known more commonly as ICF, is a classification of health and health-related domains.
The ICF Model – 2001
Disability conceptualized within the ICF
• Body functions and structures⁻ Physiological functions of body systems and anatomical parts⁻ Impairment seen as long-term characteristics in part of body
• Activity⁻ Execution of a task or action ⁻ Activity limitation seen as difficulty or inability in performing
functions of everyday living • Participation
⁻ Challenges in ability to engage in social, educational and work activities and roles
• Environmental factors include: ⁻ Physical, social, attitudinal aspects ⁻ e.g., climate, social structures, assistive technology
• Personal factors include:⁻ Background of an individual’s living situation⁻ e.g., gender, age, ethnicity
ICF: Children and youth
• ICF limited in its ability to classify children and adolescents • Modifications within each domain of the ICF to be relevant to infants, children
and toddlers⁻ e.g., acquiring language, engagement in play
• Developmental aspects included to account for rapid changes in childhood and adolescence
• Captures and operationalizes ⁻ Context of family ⁻ Change in participation from infancy to adolescence⁻ Change in nature and number of environments from infancy to adolescence⁻ Lag in function related to delay, not disability
• Ongoing influence of the environment on functioning, development and disability
Conclusions
• There is no single model or definition of disability and there is no measurement gold standard
• Our understanding of disability has changed:
⁻ From a charity definition – based on a conceptualization of people with disability as needing help, care and protection and deserving pity
⁻ From a medical definition – based on a medical condition as an individual pathology
⁻ To a concept based on the consequences of conditions or delays on functional ability and social participation
Opportunities
• Disability is no longer defined according to one’s physical impairment (the “what’s wrong with you?” approach)
• Equality, accessibility, inclusion and human rights become key elements to the definition of disability (the “what do you need to become a fully active participant in your society?” approach)
• Disability is thought of as a process rather than as a state or condition
• Approach to dealing with disability shifts from fixing or repairing a deficit (physical impairment) to the removal of barriers (including attitudinal), thus creating better access and improving social participation
• Domain of disability also shifts from the medical realm to the socio-environmental
Challenges
• To change our way of thinking of disability:
⁻ from a dichotomy: disabled versus not disabled
⁻ to a continuum: degree of activity limitation or degree of participation restriction that is distinct from medical diagnoses
• Then to develop indicators that reflect this continuum and can be used to disaggregate outcomes by disability status
© UNICEF Nepal/MICS6
UNICEF/WG MODULE ON CHILD FUNCTIONING:
Objectives of the module
• Primary purpose: to identify children with functional difficulties
• Rationale: In an unaccommodating environment, children with functional difficulties are at risk of experiencing limited social participation
• Aim:
⁻ To provide cross-nationally comparable data
⁻ To be used as part of national population surveys or in addition to specific surveys (e.g., health, education, etc.)
Rationale
• Child Functioning module was developed in response to an identified need for comparable data
• Development of the module after careful review of existing tools and the understanding that they did not conform with the current understanding of disability as occurring on a continuum
• Involvement of experts and rigorous cognitive and field testing to ensure construct validity and generalizability of the survey module across contexts and cultures
© UNICEF Nepal/Database
History
• WG Workgroup on Child Functioning was established in fall 2009 under the leadership of ISTAT (Italy) to develop and test a survey module specifically designed to capture child functioning
• UNICEF joined the Workgroup in early 2011
Group members
• National Center for Health Statistics – USA• UNICEF• National Institute for Statistics– Italy• Bureau of Statistics – Uganda• Ministry of National Economy – Oman• Sudan Central Bureau of Statistics – Sudan• Instituto Nacional de Estatistica – Mozambique• Institute of Population Research – China • Institut National de la Statistique – Cote d’Ivoire• General Directorate of Statistics – Togo• Croatian Institute of Public Health – Croatia
UNICEF/WG Module on Child Functioning
• to address the aspects of child development not addressed in short set and extended set of questions;
• Incorporate a fuller age range: different question sets for children age 2-4 and those age 5-17;
• To identify age-appropriate difficulties; [“Compared with children of the same age…”.]
• Rely on proxy respondents: questions would be designed for the children’s mother or primary caregivers
Domains
• Questions ask about difficulties the child may have in doing certain activities
• Questionnaires for children 2-4 and 5-17
• Response categories are:
❑ No difficulty
❑ Some difficulty
❑ A lot of difficulty
❑ Cannot do at all
• Comparison with children of the same age used when functioning can be observed in other children, and is relevant, to avoid false positives
Content and structure
Conclusions
• Questions carefully drafted to reflect multitude of domains and reduce risk of missing out children with different functional difficulties
• Domains are not meant to be looked at in isolation
• Questions carefully tested and cut-offs selected to reduce risk of false positives
• Not recommended to reduce number of questions, change response categories, modify content or change cut-offs
© UNICEF Nepal/Database
• The CRPD and its Optional Protocol were signed on 03 January 2008, and
ratified on 07 May 2010
• The rights of persons with disabilities is ensured in the Constitution of Nepal
• Prior to and following ratification, many policies were adopted to protect the
rights of persons with disabilities in Nepal
History of the Convention on the Rights of Persons with Disabilities (CRPD) in Nepal
Many of the policies from 1990s have since been reviewed, repealed and replaced by newer laws and policies ensuring greater protection and more progressive rights for PWDs
Disabled Persons Protection and Welfare Act
1982
Education Act,
Children’s Act 2048
1992
National Policy Plan of Action,
Disabled Persons Service National Policy
1996
Local Self-Government Act
1999
Constitution of
Nepal
2015
National
Disability Act
2017
© UNICEF Nepal/Database
Photo / Graphic
Disability in Nepal
• Key Drivers: Disasters and conflict, other drivers include road
accidents and chronic diseases
• Higher levels of disability in the lowest income quintile
• Geographic dispersion: More cases in Southern Nepal and
Mid-Western Nepal
• Preventability: One third of disabilities are a result of disease
or a lack of access to healthcare, and may be preventable
1.94% 34%of total population of most cases ofhas a disability disability are congenital
10.6% 30.3%of all children (2-17) of all disabilitieshave at least one may be preventablefunctional limitation.
Source: Ministry of Women, Children and Senior Citizens, Annual Report 2074/2075, Kathmandu, 2075.
Distribution of disability card.
Female Male Total
1 Complete Disability (Red) 16,951 24,071 41,022
2 Severe Disability (Blue) 34,365 47,827 82,192
3 Moderate Disability (Yellow) 31,093 45,492 76,585
4 Mild Disability (White) 20,577 30,960 51,537
102,986 148,350 251,336
Fiscal Year 2074/2075
(2017/2018)
Total
Types of disability card
distributedS.No.
Classification of disability according to disability Act, 2017
Persons with disabilities based on the problem and difficulty in bodily part or system:
1. Physical disability: …2. Visually impaired disability: …
a. Sightlessness: …b. Low vision: …c. Total blindness: …
3. Hearing impaired disability: …a. Deaf: …b. Partially deaf: …
4. Hearing and visually impaired disability: …5. Voice and speech-related disability: …6. Mental or psychosocial disability: …7. Intellectual disability:8. Hemophilia-related disability:9. Autism: …10. Multiple disability: …
MULTIPLE INDICATOR CLUSTER SURVEY – Round 6, 2019
KEY FINDINGS- FUNCTIONALITY
EMBARGOED until official released by the Government of
Nepal
Children with functional limitations/disability
10.611.8
10.19.3
11.9
10.4 10.2
12.0
PERCENTAGE OF CHILDREN OF AGES 2-17 WITH
AT LEAST ONE* FUNCTIONAL LIMITATION • 10.6 % of children (2-17 years-
old) have at least one functional
limitation. Functional limitations
include hearing, vision,
communication/comprehension,
learning, mobility and emotions.
• Bagmati has the lowest rate
(9.3) of functional limitations
among children, while
Sudoorpaschim reported the
highest (12.0) but there is no
significant variance in the rest of
the Provinces.
0.4 0.3 0.40.8 0.5 0.7 0.6 0.5 0.8 0.8
0.3
10.5
2.4
0
2
4
6
8
10
12
Percentage of children aged 5-17 years with functional difficulty in the domain of:
National: Percentage of children age 5-17 years with functional difficulty in at least one domain:
13.2%
11.7
10.8
8.2
11.5
10.2 10.1 10.3
8.88.3
10
8.7
2.92.3
1.9
2.92.3
1.9
2.9
1.1 1.30.8
1.8
0
2
4
6
8
10
12
14
Age ‘5-9 ‘10-14 ‘15-17 Mother'seducation
None Basic (1-8) LowerBasic (Gr
1-5)
UpperBasic (GR
6-8)
Secondary(Gr 9-12)
LowerSecondary(Gr 9-10)
UpperSecondary(GR 11-12)
Higher
Percentage of children age 5-17 years who have functional difficulty by domain, Nepal, 2019
Anxiety Depression
1.7
13.2
10.6
0
2
4
6
8
10
12
14
% of children age 2-4years with functionaldifficulty in at least
one domain
% of children age 5-17 years with
functional difficultyin at least one
domain
% of children age 2-17 years with
functional difficultyin at least one
domain1
Percentage of children age 2-4, 5-17 and 2-17 yearswith functional difficulty, Nepal, 2019
8
2 1 2 2 2 2 1
26
13 1313
1516
10
12
24
10
1211
1213
89
0
5
10
15
20
25
30
Has functionaldifficulty
Has nofunctionaldifficulty
No information Poorest Second Middle Fourth Richest
Mother's functional difficulties (age 18-49 years) Wealth index quintile
Percentage of children age 2-4, 5-17 and 2-17 years with functional difficulty in at least one domain, Nepal, 2019
Children age 2-4 years Children age 5-17 years Children age 2-17 years
Child Functioning (2-17 years): Inequalities
Female, 11 Urban, 10Richest, 9
Higher, 6
Male, 11 Rural, 11 Poorest, 11
None, 13
0
5
10
15
20
25
Sex of child Area Wealth Quintile Mother's education
Pe
rce
nt
Disability in CFT
Properties of the sample: Persons with disabilities14% of households have members who have functional limitations – prevalence varies by income group, province and place of residence. 1 in 5 family members with functional limitations are children.
18%
15%
12%
10%
12%
Below 10K 10-20K 20-30K 30-50K 50K+
12%
16% 15%
12% 12%
21%
12%
Pro
vin
ce 1
Pro
vin
ce 2
Bag
mat
i
Gan
dak
i
Pro
vin
ce 5
Kar
nal
i
Sud
urp
asch
im
10%
13%
15%
14%
14%
Metropolitian City
Municipality
Rural Municipality
Sub-Metropolitian City
All
• Families belonging to low income groups, living in
Karnali or in rural municipalities, are more likely to
have someone with functional limitations.
% REPORTING FUNCTIONAL LIMITATIONS BY INCOME GROUP
% REPORTING FUNCTIONAL LIMITATION BY RESIDENCE
Ages of household members with
functional limitations N
Below the age of 2 18
Between 2 and 5 38
Between 5 and 18 173
Above the age of 18 879
% REPORTING FUNCTIONAL LIMITATIONS BY PROVINCE
21%
29%28%
19%
15%
8%
No earnings <10K 10-20K 20-30K 30-50K 50K+
Percentage of households reporting receiving financial/material assistance by province Percentage of households reporting receiving financial/material
assistance by income group
15%
24%
19%
28%
0%
5%
10%
15%
20%
25%
30%
No disability Disability
% r
ecei
vin
g as
sist
ance
Disability Status
No Loss Loss
Percentage of households receiving financial/material assistance by disability & income loss
SOCIAL PROTECTION
47%
26%
21%
21%
18%
12%
9%
6%
Province 2
Sudurpaschim
All
Province 5
Karnali
Province 1
Bagmati
Gandaki
21% of respondents reported receiving financial/material assistance from the government since lockdown.
© U
NIC
EF
Nepal/2015/N
Shre
sth
a
39
THANK YOU!
© UNICEF Nepal/Database
