Rapid Assessment of Disability Sally Baker Manjula Marella Co-authors: Alexandra Devine, Tanya Edmonds, Beth Sprunt, Kathy Fotis and Jill Keeffe

Disability Inclusive Development – where’s the data? Achieving Article 32 of the UNCRPD is hampered by gaps in evidence. Challenges include: – limited existing disability data; – limited knowledge of how to include people with disability and their priorities across the program cycle; and – lack of mechanisms to support design and measurement of effectiveness of disability inclusive development activities.

Prevalence of disability Source: UNESCAP (2012) Disability at a Glance. Based on data submitted by governments.

Comparison of types of question Samoa Census 2006: 1.2% Vanuatu Census 2009: 12%

The Washington Group questions: – enable capture of disability prevalence data at the population level. – Can be used to understand how particular issues are experienced by people with disability at the population level, e.g.: Health issues Education levels Poverty

But how can organisations design development programs which meet the priorities of people with disability at the local level?

Enter the RAD… A tool was needed that could: – Identify people with disability, – Determine quality of life, and – Determine barriers which impede access to the community. This data could be used by development organisations: – As baseline data, – To inform the design of disability inclusive development programs, and – to contribute to evaluation.

The methodology: Review and analysis of existing tools, including the Washington Group, ICF questions, WHOQOL, Kessler scale, PedsQL 4.0 and UNICEF 10Q. Focus group discussions and in-depth interviews with people with disability in Bangladesh. Review of drafts of the tool by advisory committees in Bangladesh, Fiji and Australia. Validation in Bangladesh and Fiji.

People with disability as participants in the research Participants in advisory committees in Bangladesh, Fiji and Australia. Employed as data collectors in Bangladesh and Fiji.

The RAD survey: 2 questionnaires – Household questionnaire – Individual questionnaire Demographic information Self-assessment of Functioning Rights awareness Well-being Access to the community – Particular items were removed or rephrased after being found to be psychometrically invalid.

Self-assessment of functioning 15 items related to 8 domains: vision, hearing, communication, mobility, fine motor skills, cognition, appearance and mental health. In the last 6 months, have you had difficulties seeing, even if wearing glasses? – Yes/no – How often? Some of the time Most of the time All of the time

Well-being 16 items related to quality of life and activity limitation In the last 6 months, how often has your opinion been counted in the family? 1.All of the time 2.Most of the time 3.Some of the time 4.Never 5.Don’t know/can’t remember

Access to the community In the last 6 months, to what extent could you access …… as much as you would have needed/liked? Which of the following have limited your ability to …..? Lack of information about …. opportunities No …. facilities in the area Physical accessibility of ….. facilities Negative attitudes towards you Cost Difficulty getting to …. facilities from home Family has difficulty assisting you to participate in …. Which of these has limited your participation in ….. the most?

Access to the community Health Family decision making Assistive devices Rehabilitation services Water and sanitation Social activities Religion Government and social welfare DPOs Education Disaster management

Bangladesh RAD Survey To estimate the prevalence of disability and its impact in Bogra, Bangladesh, using the RAD questionnaire. Two-stage cluster random sampling – Compact segment sampling 66 clusters Of 2315 adults living in 931 households, 1855 (80%) individuals were recruited.

Findings from Bangladesh N= (10.5%, 95% CI: 8.78, 12.24) participants reported difficulties with functioning. Prevalence of disability extrapolated to Bogra district: 8.91% (95%CI: 7.34, 10.58) Difficulties most frequently reported – Seeing (5.5%) – Hearing (2.7%) – Mobility (2.3%) Psychological distress – 5.3%

Sample (n = 1855) Prevalence (95% CI)Adjusted OR (95%CI)* Gender Female10.26 (8.23, 12.28)1 Male10.88 (8.56, 13.20)0.97 (0.48, 1.94) Age (years) (0.97, 4.45) (3.00, 6.98)2.04 (0.90, 4.67) (7.08, 14.03)4.86 (2.17, 10.89) (9.44, 17.47)6.49 (2.97, 14.19) ≥ (20.66, 29.64)9.15 (4.11, 20.41) Socio-economic status Rich8.17 (5.16, 11.19)1 Middle7.57 (5.46, 9.67)1.15 (0.65, 2.05) Poor14.59 (11.58, 17.60)2.11 (1.25, 3.56) Education 10 years or more6.48 (3.52, 9.45)1 5-9 years6.80 (4.56, 9.05)1.08 (0.47, 2.45) 1-4 years11.29 (8.02, 14.56)1.17 (0.50, 2.71) None14.58 (11.61, 17.55)1.00 (0.45, 2.25) Occupation Housewife/working8.70 (6.83, 10.56)1 Not working39.84 (31.11, 48.57)3.99 (2.19, 7.28)

Well-being and Access to community People with disability had poor well-being scores (0.69, SD 1.25 logits) compared to the controls (1.67, SD 1.24 logits), p< Also had poor access to community compared to the controls (p<0.01).

Conclusions from Bangladesh study Poor socio-economic status, old age and unemployment were independent predictors of disability supporting the previously established evidence on the relationship between poverty and disability. Participation in the community is associated with gender and disability. Data from RAD survey was useful to assess disability in terms of activity limitation, participation restriction and the contextual factors.

Towards implementation of the RAD A manual was prepared to provide information on the principles of RAD and guide implementation of the RAD survey. A toolkit comprising questionnaires and the manual was launched last year.

Further research needed Further validation of children version of RAD Awareness of rights Further testing is needed to investigate – Application of RAD in disability inclusive development programs – Responsiveness of RAD to identify change in participation after an intervention

Current applications Philippines – W-DARE ADRA - to improve access to quality sexual and reproductive health (SRH) programs for women with disability in the Philippines. Fiji – AQEP : To identify children with disabilities among those who are not attending school in the communities surrounding five inclusive education demonstration schools. India – CBM India funded project in Andhra Pradesh and Uttarakhand.

Future plans Developing a RAD Consortium to share learnings from application of RAD in different settings Investing in software development to improve data entry and analysis and therefore improve usability of RAD Investing in regional RAD trainers

Acknowledgments The research is funded by the Australian aid program through an Australian Development Research Award. International Centre for Diarrhoeal Disease Research, Bangladesh (icddr,b) The Pacific Eye Institute, Fiji