The Washington Group Questions are an approach to

measure disability in a certain population (Madans 2017). A

UN city group under the UN Statistical Commission, the

Washington Group has designed a number of data

collection tools to measure disability, including the

Extended Question Set on Functioning and the Short Set of

Questions on Disability. Lepra decided to use the

Washington Group Short Set (WG-SS), a list of six questions

looking at core functional domains that should be

integrated into existing surveys. It is important to emphasise

that the WG-SS is not designed as a tool for diagnosing an

individual’s ‘disability level’. Instead, it gives us an indication

of the possible impact of an individual’s conditions on

functional abilities (Washington Group on Disability

Statistics 2016), and can be used to estimate the prevalence

of these impacts within a population.

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?

a. No – no difficulty b. Yes – some difficulty c. Yes – a lot of difficulty d. Cannot do at all

Inclusion, in physical, social and economic terms, of people

with neglected diseases is at the heart of Lepra’s work. With

disability inclusion increasingly recognised as a cross-cutting

theme in international development and with the revision of

Lepra’s monitoring and evaluation strategy, the organisation

asked itself: how inclusive are Lepra’s projects? The projects

focus primarily on people with leprosy and lymphatic

filariasis. This gave the organisation a strong sense of

disability levels and the impact of disability among people

affected by these diseases. The WG-SS allowed Lepra to look

beyond the diseases of leprosy and lymphatic filariasis and

see how people with all sorts of functional abilities were

represented in their projects. The WG-SS further

strengthened Lepra’s data collection because the WG-SS self

-assessment of disability compliments conventional medical-

based assessment of disability in leprosy and LF cases.

Disability is defined differently in all three countries in which

Lepra currently operates. Consequently, India, Bangladesh

and Mozambique also have different estimations of

disability prevalence in their countries.

Bangladesh measures disability prevalence using the

Washington Group methodology, whereas India and

Mozambique do not, which shows in their national

estimates. In this context, introducing the WG-SS will give

Lepra a uniform measure of disability in their projects. It

was expected that evidencing disability levels will in turn

help Lepra and their beneficiaries in their advocacy efforts

towards disability inclusion, e.g. making disability

allowances available for people with neglected diseases.

Finally, there was a pragmatic consideration. Using the WG-

SS in monitoring and evaluation will enable Lepra to align

with disaggregation objectives pertaining to Sustainable

Development Goal 3 (Good Health and Wellbeing) and

required by an increasing range of donors, including DFID.

Global: 10-15% (World Bank 2011) India: 2.2% (Census of India 2011) Bangladesh: 9.1% (Bangladesh Bureau of Statistics 2011) Mozambique: 1.9% (World Bank 2011)

In April 2016, the WG-SS was integrated into a beneficiary

survey with the start of the Reaching the Unreached Project

in Bangladesh to pilot its use. The project will run until

March 2019 and is funded by UK Aid. Lepra’s beneficiary

survey collects data on core indicators for the principle

beneficiaries of the project: people affected by leprosy and

lymphatic filariasis. Leprosy and lymphatic filariasis often

cause disability and Lepra was aware that this would create

a bias in the responses to the WG-SS questions. To reduce

this bias and to alleviate concerns that the survey might

become too long with the addition of six extra questions,

Lepra integrated the WG-SS via a screener that worked as a

skip logic. A sample of 2,091 beneficiaries were asked: “Do

you have any difficulties doing certain activities because of a

different health problem” (i.e. different from leprosy and/or

lymphatic filariasis)? If they responded positively, they

would proceed to the WG-SS questions.

Before sharing the analysis of the first year results of the

WG-SS questions in Bangladesh, it should be noted that for

a variety of reasons WG-SS Question 2 (Do you have

difficulty hearing, even if using a hearing aid?) was not

included in the pilot. This omission has been addressed in

Year 2 of the project.

Analysis of the responses to the WG-SS questions showed

some surprising results. People affected by leprosy and

lymphatic filariasis can develop morbidities and disabilities

that affect visual, locomotive and self-care abilities. Higher

percentage scores in these categories were therefore

anticipated. Using the recommended cut-off point for

disability as ‘a lot of difficulty’ or ‘cannot do at all’ (Mont

2017), Lepra also found high percentage scores in

unexpected categories. Most notably, 13% of beneficiaries

indicated difficulty in remembering or concentrating and

10% had a communication disability. Such disabilities are

not associated with leprosy or lymphatic filariasis and were

therefore not traditionally an area of focus in Lepra’s

relations with beneficiaries.

Further disaggregation by age, disease and gender allowed for

in-depth understanding of the disability prevalence found in

the survey. Age appeared an important factor in explaining the

high disability prevalence found among Lepra’s beneficiaries:

the 50-70 and >70 age groups scored worse across all function

categories. Nevertheless, prevalence of locomotive disability

was still high among 15-29 year olds (18%) and 30-49 year olds

(26%). The age of Lepra’s beneficiaries cannot have been the

only variable explaining the high prevalence of remembering

and concentrating difficulties. Even among 30-49 year olds this

prevalence was high at 12%, especially compared to the

national average of 0.32% (Bangladesh Bureau of Statistics

2011).

Analysing the results by gender showed that, with the

exception of the question on communication difficulties, the

general trend showed little difference in reported difficulties

between male and female beneficiaries affected by lymphatic

filariasis. However, a huge difference was observed between

men and women affected by leprosy.

Women affected by leprosy reported much more difficulty

in seeing, walking/climbing, remembering/concentrating

and most significantly in self-care. 28% of women reported

‘a lot of difficulty’ or ‘cannot do at all’ when asked about

their ability to carry out self-care, compared to only 9% of

men. This evidence supports research by other leprosy

agencies showing that women with leprosy carry a triple

burden, being discriminated against on grounds of gender,

disability and leprosy stigma. This leads to late detection of

leprosy and hence to higher chance of developing

disabilities (ILEP, 2015).

Comparing the results by disease and clinical assessment of

disability for both diseases provided more notable insights.

People with lymphatic filariasis reported higher levels of

difficulty than those with leprosy. It is interesting to

compare these results to the clinical assessments done for

each beneficiary to establish ‘disability level’ according to

WHO categories. For lymphatic filariasis, 13% of male and

female beneficiaries were categorised as having stage 3 or 4

disease, meaning that they can only do daily activities

assisted by a family member or have extreme difficulty

doing such activities. When compared to the WG-SS

responses, the percentage of beneficiaries reporting

difficulty with mobility is much higher (36% for women, 27%

for men). This result suggests that the clinical assessment

might be underreporting the level of difficulty actually

experienced by people affected.

The situation might be the opposite with leprosy, where a

Grade 2 identification means that the person has visible

deformity/damage and/or severe visual impairment. 35% of

female cases and 38% of male cases were identified as being

Grade 2. Nevertheless, only 15% of women and 11% of men

reported ‘a lot of difficulty’ or ‘cannot do at all’ with seeing.

The deformities of leprosy often affect feet, but despite 35-

38% of beneficiaries being Grade 2 patients, only 28% of

women and 23% of men reported difficulty with walking or

climbing. The assessment shows a discrepancy between

what clinical staff considers a disability and how affected

people perceive their disability. It also highlights that while a

person affected by leprosy or lymphatic filariasis might not

have a disability as a consequence of their disease, they

might still have difficulty with functional abilities due to

other causes.

Finally, Lepra analysed the WG-SS results by comparing

them to reported stigma experienced by the beneficiaries.

This analysis reinforced the importance of Lepra’s activities

to train affected people in self-care for social and economic

participation. The results showed a correlation between

never attending community events or never feeling included

at work/school and functional abilities. For example, among

people that never attend a community event, 48% indicated

not being able to do self-care at all.

The Washington Group advises against adding a screener,

and Lepra’s hardest lesson learnt is that this advice ought to

have been followed. Adding a screener to try to reduce bias

only ended up confusing the survey takers and might have

led to increased rather than decreased bias. This was partly

due to problems in translating the screener: “(...) because of

a different health problem?” was translated in Bengali as

“(…) because of your special health problem?”, with leprosy

and lymphatic filariasis being interpreted as ‘special

diseases’ in Bengali culture. The screener that tried to filter

out limitations in ability due to leprosy and lymphatic

filariasis therefore ended up asking precisely about

limitations due to these two diseases. Despite this

misinterpretation of the screener, the results are still of use

to assess inclusiveness for Lepra, as not all core function

domains are pathologically related to leprosy or lymphatic

filariasis.

Internal and external discussions of the first year results of

the WG-SS highlighted the need to make sure that proper

referral systems are set in place. While Lepra does not have

the capacity or intention to provide a range of disability

services, Lepra staff and survey takers should at the very

least have knowledge of where and how to refer

respondents expressing a need for support. Failing to link to

this referral system would not only be unethical. It might

also raise expectations among beneficiaries that, if they are

not met, it could ultimately affect beneficiary participation

in Lepra’s projects.

Mental health problems are associated with negative

impacts on memory or concentration (Burt, Zembar et al.

1995). The 13% prevalence of memory or concentration

disabilities might therefore be an indication of mental health

problems among our beneficiaries. Additional research by

Lepra shows that around 50% of people with leprosy and

lymphatic filariasis will develop mental health problems, with

disability as a major risk factor in developing these problems.

Lepra needs to include

the four Washington

Group questions on

mental health in future

surveys to better

understand how such

issues are affecting our

beneficiaries.

The Washington Group defines disability through a method

that looks exclusively at impairments to body functioning.

Lepra uses a holistic approach in their programmes and

recognises that disability cannot be reduced to functionality

only. The ICF (International Classification of Functioning,

Disability and Health) model recognises that limitations to

activities and restrictions to participation are equally

important in defining disability (World Health Organisation

2013). By only considering impairments, the Washington

Group risks presenting disability as a static measure that

doesn’t show how the impact of impairments to bodily

functions might be mitigated by effective assistive devices or

a person’s strong social capital. Our analysis of the WG-SS

results by level of stigma experienced and gender shows

that these factors influence disability.

Following the success of the pilot, Lepra will be including

the WG-SS questions (including Question 2) in all their

future beneficiary surveys. Future surveys will also include

four questions on mental health that have been finalised by

the Washington Group in 2017, as mental health is

becoming an increasing concern in Lepra’s work.

The insights from this pilot and from future surveys deepen

Lepra’s understanding of the functional abilities of their

beneficiaries and how these abilities might affect both a

beneficiary’s participation in a project as well as his/her

daily life in general. The analysis will be used to inform

project design and implementation. Health education and

disease awareness is a key part of Lepra’s work. As 10% of

beneficiaries are considered to have a communication

disability, the usual project outreach activities through large

group sessions might not be sufficient to engage with this

group. Lepra needs to find new ways of making sure their

health messages reach all intended beneficiaries.

More data collection and the ability to disaggregate data by

disability strengthens the evidence base for Lepra’s

advocacy work at local, national and international level. For

example, people affected by lymphatic filariasis in India

struggle to be considered as disabled by local governments,

and therefore lack access to welfare benefits. The results

from Lepra’s analysis support the organisation’s efforts to

get access to such benefits for many more beneficiaries.

Bangladesh Bureau of Statistics (2011). Report of the Household Income & Expenditure Survey 2010. Dhaka, Bangladesh, Bangladesh Bureau of Statistics.

Burt, D. B., et al. (1995). "Depression and memory impairment: A meta-analysis of the association, its pattern, and specificity." Psychological Bulletin 117(2): 285-305.

Census of India (2011). Measurement of Disability through Census - National Experiences: INDIA. India, Office of the Registrar General & Census Commissioner.

ILEP (International Federation of Anti-Leprosy Associations) (2015). Triple Jeopardy: Tackling the Discrimination Facing Girls and Women with Leprosy, ILEP.

Madans, J. H. (2017). Disability Measurement and the Washington Group on Disability Statistics. International Training Workshop on Disability for NGOs, London, UK.

Mont, D. (2017). The Importance & Feasibility of Disaggregation by Disability Status. International Training Workshop on Disability for NGOs, London, UK.

Washington Group on Disability Statistics (2016). "Short Set of Disability Statistics." Retrieved 18th May, 2017, from http://www.washingtongroup-disability.com/washington-group-question-sets/short-set-of-disability-questions/.

World Bank (2011). World Report on Disability. Washington DC, World Bank.

World Health Organisation (2013). How to use the ICF: A practical manual for using the International Classification of Functioning, Disability and Health (ICF). Exposure draft for comment. Geneva, Switzerland, World Health Organisation.

Photography by Lepra and Peter Caton

2017

Lepra 28 Middleborough Colchester, CO1 1TG United Kingdom