Module 1: Disability, Definitions and concepts of

disability

Inequality, and Disability in data collection

and analysis
Inclusion The extra costs of disability
Why do we need What are the source
data? of data?

• Situation analysis • Census

• Design of programs and policies • General surveys (Labor Force
Survey, Household Income and
• Monitoring Expenditures Survey,
• Evaluation Demographic and Health
Survey… )
• Disability surveys
• Administrative data
 Prevalence and
• How many people have a disability? What
patterns of are their characteristics? Where do they live?
prevalence

Disaggregation • What are the gaps in poverty, employment,

General data of outcome

indicators by
disability status
education, access to services, etc.
• Importance of additional disaggregation by
agender, age, location, ethnicity…

needs for What are the

environmental • Inaccessible infrastructure, inaccessible

disability barriers to
participation?
information, attitudes, laws and institutions,
unaffordability of services…

inclusive What are the

different support
• What kind of human assistance, assistive
devices, home adaptation (…) do people

policies requirements for need for basic survival and to overcome the
existing barriers to their participation?
inclusion?
Prevalence,
Patterns of
Prevalence, and
Disaggregation
of Outcome
Indicators
How many persons with disabilities?
According to the WHO/World Bank, 15 % of the population
worldwide, over 1 billion people
So why do we hear different numbers in national data? What is the
“correct” number?

1%
8%

15% 10%
 • In prior years, poor methods for collecting
Why do data
• Different thresholds are sometimes used for
reported what constitutes a disability
• Recent international efforts have led to an
prevalence improved methodology that is reporting
more consistent, comparable results (e.g.
rates vary so UN Washington Group on Disability
Statistics, WHO Global Burden of Disease
much? and Model Disability Survey)
 Human functioning is not a binary variable
• The Activity Limitation Score is
an index of a person’s ability to
do a wide range of various
activities
• Score of 0 means no difficulty
doing anything. Max score
Number of Children

means unable to do any activity

Unable to do • Where is the line that separates
any activities
No
Difficulties
people with and without
Activity Limitation Score disabilities?

7
Behind the numbers, a diversity of situations
and policy implications
Includes persons usually referred as having severe
disability which may requires significant support. In
2-4%
many countries those are the persons who may
received disability benefits

Includes also persons with significant disability who

7-10% would require some kind of assistance, assistive
technology and inclusive environment for daily
activities.

Includes also all persons with any kind of functional

15% limitations or impairment who would benefit from
assistance, inclusive environment

Not “persons with disabilities” but at times directly

More benefit from assistance or inclusive environment
e (pregnant women, people with injury or sickness…)
 In the past, disability data
Overview of the State was of poor quality and
of Data for Identifying varied dramatically
People with Disabilities
Recent international
efforts have improved our
ability to collect reliable,
meaningful disability data
 “Do you have a disability?”
Previous Survey • Stigma
Questions Greatly • Only severe conditions
• Can miss elderly
Undercount
People with “Do you have (medical condition)?”

Disabilities • Incomplete list of conditions

• Only those with education and access to
doctors know diagnosis
• Great variance among people with same
diagnosis
• Completely divorced from the environment
 • We want to ask questions that get at the
difficulty people have doing various activities
• e.g., Do you have difficulty walking?
• Want to ask across a range of activities, and
want to get the level of difficulty
Functional • We are concerned with what people can do,
not what people “have”.
Approach
Identifying people with functional limitations
who are at risk of not participating because
of environmental barriers
 Do you have a List of conditions Functional
disability approach

How you ask the Nigeria

.05
Colombia
1.8
Poland
10.0
questions matters! Jordan Chile UK
1.2 2.2 12.2
Philippines Uganda Brazil
1.3 3.5 14.5
Ethiopia Hungary Canada
3.8 5.7 18.5
13

• June 2001: UN International Seminar on the

Measurement of Disability
• WG established as a City Group under the aegis of the UN
Statistical Commission
• Country driven

The • Emphasis on testing and transparency

• Mission is to:

Washington • address the need for population-based measures of

disability
• foster international cooperation in the area of health
Group (WG) and disability statistics
• produce internationally tested measures to monitor
status of persons with disability
• incorporate disability into national statistical systems
 • Ask about difficulties in six core basic
activities
• Seeing, hearing, walking,
communicating, cognition, and self-care
• Initially designed for censuses
• Scaled responses
WG Short Set • For UNSD measure of disability
prevalence use “a lot” or “unable” but
possible to look at wider range
• Identify people at risk of social exclusion
• To be used to disaggregate indicators by
disability status
WG Short Set of Disability Questions
• Do you have difficulty seeing even if wearing glasses?
• Do you have difficulty hearing even if using hearing aid/s or are you deaf?
• Do you have difficulty walking or climbing stairs?
• Do you have difficulty remembering or concentrating?
• Do you have difficulty (with self-care such as) washing all over or dressing?
• Do you have difficulty communicating (for example, understanding or being
understood by others)?

Question response categories: No difficulty, Some difficulty, A lot of difficulty, and

Unable to do.
Source: http://www.cdc.gov/nchs/citygroup.htm
 • Cognitive and field testing in low, middle and
high income countries and in countries in
every region
• Incorporated into many national surveys and
Testing and surveys conducted by international agencies

use of WG • Recommended by UN Statistical Division for

use in censuses, and endorsed by many
questions international and bi-lateral aid agencies
• Can provide internationally comparable
estimates of prevalence and for
disaggregating outcome indicators, such as
the SDG indicators
 • Functional approach is consistent with social
model framework and CRPD
• Tested and used successfully in many
countries
• Designed to be internationally comparable
Advantages • Identifies most people with disabilities
• Can easily be added to existing censuses and
surveys or to project based data.
Recommended
for Can be added to existing tools that will already
be used for producing SDGs, allowing for
disaggregating disaggregation with no new statistical
infrastructure. For example, censuses, HIES,
SDGs DHS, LFS, etc.
 • Not appropriate for children under age 5,
and misses some children with
developmental issues
• Misses those with psychosocial issues that
Shortcomings do not affect communication or self-care
• Does not capture environmental barriers
• Does not capture age of onset
 WG Extended Set includes questions:

• to get at psychosocial issues

• to get at the use of assistive devices

UNICEF/WG Children questions

• two modules, one for age 2-4 and one for age
5-17

Washington • get at full range of childhood disability

• Finalized and now in MICS

Group actions to Environment

fill the gaps • UNICEF/WG educational environmental module

(being tested)
• ILO/WG employment – basic questions being
tested, more extended set under development
 Many more questions on
detailed aspects of
functioning and participation

Questions on the existence of

WHO Model barriers in various sectors
Disability Survey
Many more questions on the
use of assistive devices
 Advantages
• More extensive information
• Ability to create a detailed range of functioning
Model
Disability Limitations:
• Complicated statistical procedures to draw
Survey threshold for identifying someone with a
disability
• Too resource intensive for inclusion in censuses
and ongoing household surveys used to generate
SDGS, like DHS, LFS, HIES, MICS, etc.
 SINTEF, a Norwegian consulting firm
has conducted extensive disability
surveys in southern African
countries and Nepal

Other data tools More and more countries are

conducting national disability
surveys (e.g., Tanzania, South Africa,
Vietnam, Thailand, Canada) many of
which incorporate the WG questions
as part of their survey
Beyond
Disaggregation
 • Prevalence and patterns of prevalence
• The level of support that people need to
participate
• Environmental data to identify barriers
Data needs that need to be removed
for designing • Physical
• Informational
policies • Attitudinal
• Institutional
Data on For what activities is support
Support needed?
Needs

What type of support is needed,

for example assistive devices,
personal assistance, sign
language interpretation, etc.
Example: Percentage of the
Chilean adult population with Shopping or going to the 35.6
disabilities that use assistance doctor
to undertake daily activities, Going outside the house 28.8
by type of activity, 2015 Walking or climbing steps 25.3
(Chilean MDS)
Doing housework 25.2
Note that support needs can increase if
Dressing 16.3
the person is working Caring for and supporting 15.8
others
Getting in and out of bed 14.7
Toileting 9.8
Feeding oneself 7.5
 Sources of personal
supports in Chile Son or daughter 38.1
Spouse or partner 29.9
Other relative 11.0
Here is were some of the indirect costs of Parent or parents-in-law 10.4
disability sometimes arise
Sibling or sibling-in-law 4.4
Caring for and supporting 15.8
others
Domestic servant or home 3.5
health care worker
Other non-relatives 2.9
 You told me that you use assistive products. Do you use any assistive products to get
around, to do self-care or to support (parts of) your body?

If yes… Which ones do you use?

INTERVIEWER: SHOWCARD 06. More than one option
Example of can be selected. If the respondent has difficulties
MDS answering, read aloud the items in the list below.

Question on 1 Canes or Sticks 8 Therapeutic footwear; diabetic, neuropathic,

Assistive 2 Crutches, axillary or elbow
Devices 3 Orthoses, lower limb, upper
limb or spinal
4 Pressure relief cushions
5 Prostheses, lower limb
6 Rollators
7 Standing frames, adjustable
orthopaedic
9 Tricycles
10 Walking frames/walkers
11 Wheelchair
12 Incontinence products, absorbent
13 Other assistive product

In addition to these, do you think you need other assistive products to get around, to do
self-care or to support (parts of) your body?
More than one option can be selected. (same list as in previous question)
Environmental Barriers
To design policies we must look at environmental
barriers.
Disability Prevalence Disability Poverty gaps

Why are the

prevalence patterns
different than the
poverty gap patterns?

Because of different
barriers in different
regions
 • Which of the following would make it more likely for
[you/him/her] to seek and/or find a job?
• Check all the response categories that apply and add
other measures under response category 7.

ILO/WG • Getting higher qualifications/training/skills

• Availability of suitable transportation to and from

Example from workplace

• Help in locating appropriate jobs

Labor Force • Greater belief that someone will hire me

• Availability of assistive devices, such as a wheelchair, or

Survey special technology to help with my difficulties

• A workplace/a work schedule that is more
accommodative
• Other: Please specify _________________
 GENERAL Yes or No If not, what plans are
there to increase
accessibility?
Is the road leading to the school accessible to a student
in a wheelchair, including during the rainy season?
Example from Fiji
Are there steps leading up to the main entrance?
Education If yes, is there a proper ramp in good condition usable

Management by a person in a wheelchair?

Information System Is the main entrance to the school wide enough for a
person in a wheelchair to enter?

Is the main assembly area accessible to students

with disabilities?
Is the first aid / sick room accessible to students with
disabilities?

Is the library accessible to students with disabilities?

Are recreational areas accessible to students with
Disabilities?
Signage (tactile markers, clear signs): Are children
with seeing and hearing difficulties able to navigate
independently and safely around the school?
Emergency situations: In the school policy and
procedures, are students and staff with disabilities
specifically considered?
 • Those barriers and supports requirements
From support generate disability related costs
• Need for estimation of current household
requirements expenditures related to disability and the
costs required for equal participation
to benefit • With these data it is possible to assess the
current adequacy of cash benefits and the
adequacy relevance of kind support
 • Barriers to access social protection
• Knowledge of the existence of social protection
Additional programs.
• Knowledge of how to apply for benefits

Data Needed • Whether application methods were accessible

– both physically (e.g., accessible offices) and
informationally (e.g., sign language
for Inclusive interpretation and Braille)
• Whether disbursement methods were
Social accessible
For example, in a special survey done in two states of
Protection India, the World Bank found that over 60 percent of
people with disabilities were not even aware that
there was a cash benefit for which they could be
eligible.
 How Disability assessment and
disability registry can help?
• Many countries are revising their disability assessments and are
developing data base
• For instance, Armenia is in the process of revising their procedures for
determining eligibility for disability benefits
• Moving from medical to functional model
• But, collecting data on people’s functioning and their environments
beyond what is needed for disability determination can be used to
assess the gaps in available services needed to support inclusion.
• It can help designing, planning, costing and budgeting expansion and
diversification of support .
• So administrative data can be used not only to keep track of what is
happening, but to plan for how to improve the system
 Administrative • Inputs – financial,
data can
provide physical, and human
information on • Outputs – structures,
the
implementation
materials, and
Data for of policies institutions

monitoring and
improving • Provides data on
Example:
implementation Education
Management
facilities, materials,
and human resources
Information
Systems
• Should be linked to
budget information
 • To be fully effective, an evaluation plan must
be put into effect before a policy or a
program begins
Data for • Evaluation needs
• Outcome indicators that are SMART:
evaluation specific, measurable, available, relevant,
and timely.
• Baseline data
• Proper comparison or control groups
 Data on people

• Prevalence rates, and patterns of prevalence by region and

personal characteristics
• Disaggregation of outcome indicators to identify disability gaps
in employment, education, civic participation, etc.
• Support needs and disability extra costs

Summary: Data on the environment

What kind of
• What are the barriers to participation?
• What are the facilitators to participation?

data do we Data on policy efforts

• What are the systems and services in place? How are they
delivering?
need? • What are the resources allocated and actually spent? Is this the
most cost-effective way?

Making the national statistical system inclusive

• Incorporating a consistent approach to data collection across

censuses, surveys, and administrative data
Data sources
Advantage and limitations of different data
sources.
 What data sources can give us…with disability
identification questions

Census Labor force HIES DHS MICS Disability Administrative

survey specific data
survey
Prevalence Working age Children
Inequalities in Within programs
outcomes
Barriers ILO/WG
Support module
requirements
Disability extra
costs
 Administrative data can also
be very important for all data
purposes: justification, policy
development, monitoring,
and evaluation
Administrative
data The Fiji Education
Management Information
System (FEMIS) provides a
good example
 Instruments: What censuses, surveys or administrative data
Instruments sets in your country are used to report on the SDG indicators
for goals 1 through 8
First
assignment Disability: Identify what questions, if any, these instruments
Disability have to identify people with disabilities

For you
country of Barriers and
support
Barriers: Determine iI any of these instruments ask questions
to identify barriers to participation and support
requirements

residence or
work
Fill in Fill in the following templates
Assignment 1:
Name of Most Sample size – Questions used Are there any Are there any
census, survey recent and if it is to identify questions to identify questions to identify
or year nationally, people with environmental support
administrative regionally, disabilities barriers to requirements? (Y/N)
data set and/or participation? (Y/N)
provincially
representative
 Thank You

And on to the third part of the module:

The extra costs of disability