Everybody Counts: Learnings from data disaggregated by disabilities (DDD) pilot project

1Everybody Counts

Everybody Counts

Learnings from data disaggregated by disabilities (DDD) pilot

project

Archana Bhambal

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• Our vision is of a world where no one is blind from avoidable causes and where visually impaired people participate equally in society.

• We are an international organization working with partners in developing countries to eliminate avoidable blindness and promote equality of opportunity for disabled people

Sightsavers Vision and Mission

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Why Disability Disaggregation Data• WHO Global Action Plan 2014- 2019 talks about Universal

Eye Health ‘A world in which nobody is needlessly visually impaired, where those with unavoidable vision loss can achieve their full potential, and where there is universal access to comprehensive eye care services’

• MDGs talked about ’universal’Universal is incomplete without the inclusion of Persons with Disabilities (PWDs)• For SDGs – DDD is essential requirement for all

development Programme

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Disability Disaggregation Pilot Project

Project Objectives:

• To understand whether people with disabilities are accessing our services

• To build the evidence base on how to disaggregate routine data by disability and share with others

• To ultimately make Sightsavers projects more inclusive of people with disabilities.

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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)

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Washington GroupIntroductory 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 and d. Cannot do at all

The recommended Washington Group cut off is at least 1 c or d

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Patient exit interviewsDaily diary of data collectors

Spot checks

• Key actors and decision makers on disability

Sensitisation

• Washington Group (WG) questionnaire translated into Hindi

Tool finalisation• On WG

questionnaire and data collection

Staff training

• Quality control and process monitoring

Data Collection• Integration in

MIS and use for planning Inclusive Eye Health programmes

Analysis

Gather evidence about process and experiences of stakeholders

Process

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• Data collected on over 20,000 patients above age of 18 years in India; 51.9 percent were females

when we ask them directly if they are disabled (as in the nationl census)

when we exclude slight domain

Project clients reporting severe or completely limiting difficulties in atleast one domain

0% 5% 10% 15% 20%

0.8%

8.5%

16.7%

Results

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Useful lessons in 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.

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Further information:http://www.sightsavers.org/everybodycounts/

abhambal@sightsavers.orgpthivillier@sightsavers.org

Thank you!