2. Sightsavers
• NGO founded in 1950
• Vision: a world where no one is
blind from avoidable causes
and where visually impaired
people participate equally in
society
• Eye health, neglected tropical
disease, education and social
inclusion programmes
• Empowerment and inclusion
strategic framework (2015)
3. Disability Disaggregation pilot
project
The objectives of this project are to:
• Understand whether people with disabilities are accessing
our services
• Build the evidence base on how to disaggregate routine
data by disability and share with others
• Ultimately make Sightsavers projects more inclusive of
people with disabilities.
Two projects, selected for their geographical and thematic
variety and opportunities to use new technology.
6. Methods
• WG Short Set of Questions integrated in to routine data
collection tools at hospital and primary care level centres –
paper and electronic systems
• Monthly reports developed and shared for analysis in excel
and Stata
• As this is a pilot we also collected data on:
Experiences of people involved in the project
Quality of the data collected
• Regular in-depth interviews and focus groups among staff
involved in pilot, data quality audits and patient exit
interviews
7. Washington Group
Introductory phrase: The next questions ask about difficulties you
may have doing certain activities because of a HEALTH PROBLEM.
1. Do you have difficulty seeing, even if wearing glasses?
2. Do you have difficulty hearing, even if using a hearing aid?
3. Do you have difficulty walking or climbing steps?
4. Do you have difficulty remembering or concentrating?
5. Do you have difficulty (with self-care such as) washing all over or
dressing?
6. Using your usual (customary) language, do you have difficulty
communicating, for example understanding or being understood?
Response categories:
a. No – no difficulty
b. Yes – some difficulty
c. Yes – a lot of difficulty
d. Cannot do at all
The recommended Washington Group
cut off is at least 1 c or d
8. Impact: Transformative effect
COMMUNITY
• Process described as ‘an open door’ by the community
• Lack of introduction of the questionnaire creates confusion in
community settings
• But… it creates expectations of services
SERVICE PROVIDERS
• Data collectors reported feeling ‘closer to the community’
• But… they feel that they have a responsibility to provide information
or referrals
• Community sensitisation now includes disability
• Services start thinking about inclusion and making adaptations
(referrals, wheelchairs…)
9. Impact: Comparability of data (India)
4.1%
3.8%
0.6%
7.5%
9.0%
17.5%
0% 5% 10% 15% 20%
2012 Census: Bhopal adults
Telengana*: Direct questioning
Pilot: Are you disabled?
Telengana*: WG severe or
completely limiting difficulties
Pilot: severe or completely limiting
difficulties (excluding seeing)
Pilot: severe or completely limiting
difficulties
* International Centre for Evidence in Disability (ICED), The Telengana Disability Study, India Country Report, London
School of Hygiene and Tropical Medicine (LSHTM) 2014 [available from http://disabilitycentre.lshtm.ac.uk]
10. Impact: Comparability of data
(Tanzania)
12.1%
9.5%
19.3%
0% 5% 10% 15% 20%
2008 Survey WG severe or completely
limiting difficulties
Pilot: severe or completely limiting
difficulties (excluding seeing)
Pilot: severe or completely limiting
difficulties
* International Centre for Evidence in Disability (ICED), The Telengana Disability Study, India Country Report, London
School of Hygiene and Tropical Medicine (LSHTM) 2014 [available from http://disabilitycentre.lshtm.ac.uk]
11. Impact: Comparability of data
(Tanzania)
0.30%
1%
1%
1.20%
0.90%
1.50%
0.90%
1.70%
3.40%
2.10%
4%
0.88%
2.20%
4.70%
4.40%
2.30%
14.60%
0.00% 5.00% 10.00% 15.00%
Others
Communication
Self Care
Remembering
Walking
Hearing
Seeing
Sightsavers
Pilot
2008 Disability Survey,
Tanzania Mainland
(rural)
2012 Census
(Ruvuma)
12. Commitment and Sustainability
AT PROJECT LEVEL
• Just the start of a process towards full inclusion – creates demand
• Services are being reviewed to improve the approach to be more
gender and disability inclusive
• Testing approaches to collecting disability data in other ways, e.g.
occasional monitoring
WHAT’S NEXT?
• India: Introduction of referral mechanism to other health structures
– case for Inclusive Eye Health
• Tanzania: Provision of referrals additional treatments in camps –
case for Coordinated Approach to Eye Health
• Ghana: Developing a methodology for Mass Drug Administration
13. Commitment and Sustainability
Project
level
Integration in
existing tools
Partners
continue to
collect data on
disability
National
level
Integration in
existing reporting
mechanisms
(where available)
Sharing and
disseminating
learning at
national level
SDG
indicators
?
14. Useful lessons in the SDG context
• Sensitisation and training ensure buy-in of the
stakeholders
• Different definitions of disability will give different results –
comparability of the data will be key.
• There is no single approach to data collection, it needs to
be adapted to each context.
• Integrate the questionnaire into existing practices to
improve efficiency and reduce workload and cost.
• Train people on how to analyse the data so they can use it
for planning and decision making – ownership.
• Developing a clear advocacy plan at the outset to make
use of the data, engaging policymakers.
Sightsavers are an international NGO founded in 1950
Our vision is a world where no one is blind from avoidable causes and where visually impaired people participate equally in society
We run programmes in eye health, neglected tropical diseases, education and social inclusion
Last year we launched our Empowerment and inclusion strategic framework. This outlines our rights-based approach of mainstreaming disability throughout our programming and operations, and it complements our other global strategies on eye health, education and research. It also explains our aim to support targeted interventions which redress the inequalities experienced by people with disabilities in the countries where we work.
The programmes are the Madhya Pradesh Urban Slum Eye Care Programme in Bhopal, India.
This was established as a new eye health programme, using a hospital and vision centre in urban slums.
For this project we had to translate the Washington Group into Hindi
Partners included a local community development organisation and an eye hospital
The national census asks the question: Are you disabled, Yes or No. The national prevalence rate is currently 2.1% (2011)
The legal definition of disability can confer benefits
The second programme is a Neglected Tropical Diseases Programme in Ruvuma, Tanzania
Trachoma surgeries taking place in rural area
Partners include the Ministry of Health and Tanzania League of the Blind
The national definition of disability is similar to the Washington Group and UN Convention on the Rights of People with Disabilities (UNCRPD)
Questionnaire is already translated – except the communication question
Not sure whether we will need this slide – depends on knowledge of the WG group
On this bar chart you can see how the data collected as part of our pilot compares to the 2012 census data and the Telengana study International Centre for Evidence in Disability in 2014 and the 2012 India Census.
The Telengana study and our pilot used the same methodology (1) the WG and (2) the direct question – which compares to the census data. We collected data for all adults coming to our services whereas they used an all-age population-based random sample, with nested case-control.
Levels of accessibility using the WG cut-off for the Telengana study and our services (minus seeing) compare quite well (7.5 and 9%).
They both give very different results from the census (4.1%).
The Telengana direct questioning and the 2012 census also compare quite well (3.8 and 4.1) however our pilot give much lower level of disability. Is this an indication that people responding to the direct questioning are so severely disabled and as such not accessing our services?
In Tanzania, our pilot also compares well to the results of the 2008 Disability survey in the region of Ruvuma.
The census report only provides disability per domains, so let’s compare this to our results…
On this bar chart you can see how the data collected as part of our pilot compares to the 2012 census data and the 2008 disability survey. All used the Washington Group short set of question to collect data. However
The census refers to disability before introducing the questionnaire
The disability survey ask the questionnaire to the head of household (not self-reporting) and the sampling was based on the 2002 census
Results from our pilot are very different from the census and more similar to the 2008 survey apart from the seeing question (that’s what we do) and the remembering question (age? Our median was 56).