“Building the Evidence in Disability – New study suggests comprehensive methodology to assess disability”
© CBM / Wyatt
Sushma (right) has become a role model for children with disabilities, and says she hopes to motivate others to follow in her footsteps and speak up for their rights – in India
In order to improve the comprehensiveness and comparability of data on disability, CBM and the International Centre for Evidence in Disability at the London School of Hygiene & Tropical Medicine conducted a study to develop a comprehensive population-based survey methodology to assess prevalence of impairment and self-reported disability.
Few robust quantitative data on the magnitude and impact of disability on people’s lives are available globally.
“We always struggle to have reliable data on disability which is very much needed to inform our work. This comprehensive assessment tool helps us and others in gaining such data while also relating to the life realities behind the ‘figures’.” says Christiane Noe, CBM Research Manager.
In order to improve the comprehensiveness and comparability of data on disability CBM and the International Centre for Evidence in Disability at the London School of Hygiene & Tropical Medicine conducted a study to develop a comprehensive population-based survey methodology to assess prevalence of impairment and self-reported disability.
This methodology was field-tested in Telangana State, India and North West Region, Cameroon between 2013-2014.
Response to the World Report on Disability’s recommendation on improving data on disability
Amongst the limited evidence base that exists, different methodologies used in defining disability make comparison between countries and over time extremely difficult. The World Report on Disability and ongoing Post 2015 debates advocate for the collection of comparable and comprehensive data on disability also in view of monitoring the progress of the implementation of the Convention on the Rights of Persons with Disabilities (CRPD).
What did the study come up with?
The study suggests a 3fold-methodology to measure disability in a population, program or project:
- Self-reported disability based on activity limitation (e.g. “difficulty in self-care”) to identify the population with significant limitations in functioning
- Additional simple clinical screening for impairment where activity limitation is reported as present but not significant (e.g. “some difficulty” in one area) to identify the population with moderate impairments that may be disabling but may not be self-reported as significant
- Measure of (barriers to) participation in society (e.g. local school may not be accessible due to walking distance from the house or barriers in the environment) to identify and overcome disabling factors external to the individual
This comprehensive methodology is hence a very good and relatively cost-effective tool for assessing disability in a population, program or project. The obtained data helps to better plan and advocate for effective disability inclusion.
What Reports are available?
The study findings are available on the CBM and ICED websites in the following formats:
- Telengana Disability Study Country Report(PDF – 3.19 MB) – full country findings
- Telengana Disability Study Summary Report(PDF – 1.28 MB) – summary of country findings (also available in Telugu)
- North West Cameroon Disability Study Country Report(PDF – 4.75 MB) – full country findings (also available in French)
- North West Cameroon Disability Study Summary Report(PDF – 1 MB) – summary of country findings (also available in French)
- Building the Evidence Base in Disability Research Summary(PDF – 912 KB) – executive summary of research aims, methods and key findings in Cameroon and India
- Measuring Disability in Programs and Surveys(PDF – 1.43 MB) – summary of methodological recommendations for measuring disability in a comprehensive and comparable way
Please contact us if you require a WORD version of the documents for better accessibility.
Where do we go from here?
“Our study shows that disability is very common in both India and Cameroon, and that it has a large impact on the lives of people affected and their families. Information like this helps us to better support the full inclusion of people with disabilities.” says Dr Hannah Kuper, co-director of the International Centre for Evidence in Disability at the London School of Hygiene & Tropical Medicine.
The data on disability collected in the two study countries/states (North West Cameroon and Telengana,India) based on the comprehensive methodology will inform the local stakeholders to intensify efforts and advocacy for inclusive societies and services. This information is needed to effectively address restrictions in participation felt by people with disabilities including barriers in the built and natural environment and as a result of stigma, discrimination and lack of information.
Furthermore the methodology is recommended to be further applied and refined in different countries and settings. By this it will contribute to harmonising the availability of data on disability at the global level informing measures for disability inclusion. A next step for the research team is to address how this methodology can be adapted for mobile application via smartphone or tablet, further increasing cost-effectiveness and usability.
“We will now elaborate how to best integrate the new assessment tool into our work and also advocate for its wider use in order to improve the evidence in disability globally.” says Christiane Noe, CBM Research Manager.
For more information, please contact
- Christiane Noe, CBM Research Manager, Noe@cbm.org
- London School of Hygiene & Tropical Medicine press office: +44 (0) 207 927 2802 or firstname.lastname@example.org