Pauline Thivillier, Sightsavers' Monitoring Officer, presents on our disability disaggregation pilot. More here: http://po.st/e8eRjn

1. Initiatives for SDG
Data:
Disaggregation of
Data by Disability
in Eye Health
Projects
Pauline Thivillier, Monitoring Officer

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:
• Expand how we disaggregate data in order to include
people with disabilities
• Share our experience of disaggregation with others
• Advocate for the need to collect data specifically around
people with disabilities
Two projects, selected for their geographical and thematic
variety and opportunities to use new technology.

4. © Sightsavers
Pilot projects
• New eye health programme
• Urban slums (Hospital and
Vision Centre)
• Partners: local community
development organisation
and an eye hospital
• India Census 2011: 2.1%
prevalence of disability in
MP (Q: ‘is X disabled?’)
• Legal definition (medical
certification)
• Translate WG in to Hindi
• Electronic tool (HMIS)

5. © Sightsavers
Pilot projects
• Neglected tropical
disease project
• Rural area
• Partner: Ministry of
Health
• National definition of
disability similar to
CRPD and WG
• WG Questionnaire
already translated
(except communication
question)
• Paper tools
Tanzania: Songea

6. Methods
• WG Short Set of Questions integrated in to routine data
collection tools
• Data is analysed in excel and Stata (Data Analysis &
Statistical) software
• 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, 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

8. Impact: Transformative effect
Collecting data on disability creates demand for more inclusive
services.
COMMUNITY
• Process described as ‘an open door’
• But… it creates expectations of services
• Community sensitisation now includes disability
SERVICE PROVIDERS
• Data collectors reported feeling ‘closer to the community’
• But… they felt that they had a responsibility to provide
information or referrals
• Service providers started thinking about inclusion and making
adaptations (referrals, wheelchairs…)

9. Impact: Transformative effect
AT NATIONAL LEVEL
• Data collected is linked to national management information
systems (Tanzania)
• Data is compared to available sources
12.1%
9.5%
19.3%
0% 5% 10% 15% 20%
Tanzania 2008 Disability Survey severe
or completely limiting difficulties*
Tanzania Pilot: severe or completely
limiting difficulties (excluding seeing)
Tanzania Pilot: severe or completely
limiting difficulties
*Tanzania Disability Survey Report 2008, First Round

10. Impact: Comparability of data
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)**
*Tanzania Disability Survey Report 2008, First Round (http://www.nbs.go.tz/tnada/index.php/catalog/5)
** Tanzania 2012 Census (http://www.nbs.go.tz/)

11. 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]

12. Commitment and Sustainability
AT PROJECT LEVEL
• Data on disability is still being collected
• Testing data disaggregation in Mass Drug Administration (new
pilot in Ghana)
• Services are reviewed to be more gender and disability
inclusive – Inclusive Eye Health Pilot in India
AT NATIONAL LEVEL
• Continue to link the data collected to national management
information systems (new Ghana pilot)
• Learning is shared with governments and National Statistical
Offices

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
• There is no single approach to data collection – context
specific
• Integration of the WG questionnaire into existing practices
can improve efficiency and reduce workload and cost
• Different definitions of disability give different results and
affect the comparability of the data
• Sensitisation and training of stakeholders ensure buy-in
• Training stakeholders on data analysis ensure ownership
• Promotion of the project to governments to ensure data is
used for decision making

15. Further information:
http://www.sightsavers.org/
everybodycounts/
pthivillier@sightsavers.org
Thank you!