A blog explaining how data can be a powerful tool for understanding the challenges and opportunities faced by people with disabilities in developing countries, and for improving their welfare and access to relevant services. High-quality disability data, when accessible and used effectively, can help communities and their advocates, policymakers and local officials better understand and prioritise interventions that benefit people with disabilities. However, it is unclear what data is currently available to these stakeholders, and how it could be improved to better support the inclusion of people with disabilities.
The Bond Disability and Development Group (DDG) has commissioned this learning paper to summarise discussions which took place at the DDG’s Data Lab workshop, held in London on 22 October 2019, and to be used as a reference document going forward. This first workshop focused on why organisations need to collect disability data; what tools are available and practical ways in which these can be used. This learning paper provides a summary of these discussions and can act as a guide and reference tool for organisations looking to be more inclusive in their programming, generally, and in their data collection practices, specifically. A number of case studies and numerous resource references are provided.
Background identification of children at risk of developmental delay and/or impairment requires valid measurement of early child development (ECD). ECD measurement tools were systematically assessed for accuracy and feasibility for use in routine services in low income and middle-income countries (LMIC).
Building on World Bank and peer-reviewed literature reviews, available ECD measurement tools for children aged 0–3 years used in ≥1 LMIC were identified and matrixed according to when (child age) and what (ECD domains) they measure at population or individual level. Tools measuring <2 years and covering ≥3 developmental domains, including cognition, were rated for accuracy and feasibility criteria using a rating approach derived from Grading of Recommendations, Assessment, Development and Evaluations
This K4D helpdesk research report seeks to explore the current (2018) situation of persons with disabilities (PWD) in Jordan. It presents recent data on the state of PWD in Jordan, such as data on access to basic services for PWD. It also considers the political, social, cultural, and economic context for PWD in Jordan. Finally, it explores laws and policies relevant to the rights of PWD in Jordan. It considers the situation for Syrian refugees with disabilities with regards to the above themes. Where possible, the report presents data disaggregated by age and gender
This desk-based research reports explores the experiences of people with disabilities of inclusion and marginalisation in North Africa, and whether this has had an impact on regional/national economies and wider prosperity.
Hearing loss is the fourth highest cause of disability globally, with an estimated annual cost of over 750 billion dollars. These facts are well known and have contributed to growing global consciousness on the need for accessible hearing care in all regions of the world. Looking forward however, the demand for hearing care is likely to grow significantly in coming decades. This report highlights the potential escalation of hearing loss to the middle of the century, and focusses on the factors responsible for hearing loss and the means to address them.
WHO estimates in 2008 found that 360 million people worldwide live with disabling hearing loss, including 32 million children and 180 million older adults. The most recent estimations place this figure at over 466 million people with disabling hearing loss in 2018. The main areas of the world affected by disabling hearing loss are the South Asian, Asia Pacific and Sub-Saharan African regions, with a prevalence rate almost four times that of the high income regions.
Measures to address these concerns deal with: prevention of infections in mothers and babies; chronic ear infections; noise exposure; and ototoxic hearing loss.
Public health aspects are highlighted.
Globally, Indigenous people, also known as First Peoples, have the poorest health outcomes of all population groups, resulting in significantly higher rates of chronic disease, ill-health, and disability. Recent research strongly suggests that Australian First Peoples and the Sami peoples of the Nordic region are positioned at opposite ends of the disability–health spectrum. Australia’s First Peoples, now experience the highest rates of disability in the nation’s recorded history, despite the significant government investment over recent decades in national Indigenous policy. Yet, Nordic Indigenous populations appear to have similar health outcomes and living conditions as the rest of the population in the region. In this paper, we compare some of the global assumptions of the two leading countries of the United Nations Human Development Index– Norway (ranked first) and Australia (ranked second)– and examine the ways in which such rankings act to hide the disparities of life trajectories and outcomes for Indigenous persons living with disability compared to the rest of the population in each country. The findings of the comparative analysis illustrate core areas for consideration when undertaking in-depth comparative research with First Nation’s peoples. This includes issues surrounding the differentiated political significance of national population data systems for local Indigenous peoples in their struggles for recognition, and the nuanced processes of population data categorisation that are developed as a result of First Nation’s localised struggles for recognition, respect and rights under processes of European colonisation.
Disability and the Global South, 2018, Vol.5, No. 2, 1450-1471
This report considers the progress being made to achieve older people's right to health amid the global drive towards universal health coverage. It explores how older people are currently accessing health services and what changes need to be made to improve on this. It considers the role of data in driving and informing changes to health systems and the services they deliver. Data must be collected with and about older people to ensure adequate evidence for service design and delivery that is targeted and appropriate. This report explores the adequacy of current data systems and collection mechanisms and how, alongside health systems, they must be adapted in an ageing world.
This report is supported by 12 country profiles (for Argentina, Colombia, El Salvador, Kenya, Lebanon, Moldova, Myanmar, Pakistan, Serbia, Tanzania, Vietnam and Zimbabwe; see Appendix 1). These provide national information on trends in the physical and mental health status of older people, and population-level information on access to UHC. The profiles are supplemented by data mapping, showing the national data available on older people’s health in the 12 profile countries, and revealing the data gaps. The data mapping results are available at www.GlobalAgeWatch.org.
“This article systematically reviews the evidence on the prevalence and risk of disabilities among children and adults living with HIV in sub-Saharan Africa. The article concludes that HIV is widespread in sub-Saharan Africa and the evidence suggests that it is linked to disabilities, affecting a range of body structures and functions. More research is needed to better understand the implications of HIV-related disability for individuals and their families as well as those working in the fields of disability and HIV so that appropriate interventions can be developed”
Tropical Medicine & International Health
This report presents a summary of the findings of a study that developed and tested a best-practice population-based survey methodology to estimate the prevalence of disability in children and adults in India, and compared the extent to which people with and without disabilities access key mainstream services and opportunities including health, education and livelihoods in Telengana State, India
This report presents the findings of a study that developed and tested a best-practice population-based survey methodology to estimate the prevalence of disability in children and adults in Cameroon, and compared the extent to which people with and without disabilities access key mainstream services and opportunities including health, education and livelihoods in north west Cameroon
This report presents a summary of the findings of a study that developed and tested a best-practice population-based survey methodology to estimate the prevalence of disability in children and adults in Cameroon, and compared the extent to which people with and without disabilities access key mainstream services and opportunities including health, education and livelihoods in north west Cameroon
This research summary report presents of methodological recommendations for measuring disability in a comprehensive and comparable way
This report presents the findings of a study that developed and tested a best-practice population-based survey methodology to estimate the prevalence of disability in children and adults in India, and compared the extent to which people with and without disabilities access key mainstream services and opportunities including health, education and livelihoods in Telengana State, India
“The study investigated HIV testing prevalence and factors associated with the utilization of voluntary HIV counselling and testing (VCT) services among individuals with disabilities in Addis Ababa. The analysis was based on a survey of 209 men and 203 women with disabilities, aged 15–49, who had ever heard about HIV and AIDS in four sub-cities in Addis Ababa. HIV testing prevalence was 53.2%, with no significant difference between males and females. Comprehensive HIV knowledge, living with spouse, and religious affiliations positively predicted utilization of VCT services among participants. Living with both parents and having physical or mental/intellectual disabilities were negative predictors of VCT services utilization. More research on the predictors of utilization of VCT services by gender and urban/rural divides are needed among people with disabilities”
AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, Vol 26, Issue 10
Of all groups of youth, the group about which we know the least are youth with disabilities. In transition between childhood and adulthood, these are the years when all young people go through physical and psychological maturation, are expected to complete their education, acquire skills and assume a social identity that will enable them to fully participate in their communities and societies. This working paper discusses the issues faced by young people with disabilities and what is known and not known about this distinct age group
Working Paper 23
This report highlights the critical role data and monitoring play in realising children’s rights. It presents an updated compendium of statistics and data (which has been produced thirty years after the initial report) relating to the position of children throughout the world but particularly within the Global South. The data indicators cover a vast range: from demography, health and education, to rate of progression, child mortality, and disparities by household wealth. It emphasises that credible data, disseminated effectively and used correctly, make change possible to target interventions that help right the wrong of exclusion by identifying needs, supporting advocacy, gauging progress and holding duty bearers to account
WHO factsheet on spinal cord Injury (SCI) presents key facts related to spinal cord injury (SCI). It includes the following details: background information; prevalence; demographic trends; mortality; the health, economic and social consequences of SCI; prevention; improving care and overcoming barriers; and WHO response
Fact sheet N°384
This article presents the results of the first scoping review to examine the extent, nature and range of disability among people living with HIV in HIV hyper-endemic countries. The studies indicate that people living with HIV experience a variety of disabilities. Impairments in body structure/function comprise the majority of data, with particular focus on mental function. Data on activity limitations and participation restriction were limited, however, they were recorded. They indicate severe impact on people’s life and possible adherence. The review argues that the time has come to elevate the focus holistically on health and life-related consequences of living with HIV and to integrate disability into the discussions and approaches to HIV care
World Journal of Aids, Vol 3, No 3
This study estimated disability prevalence among adults at global, regional and country levels using internationally comparable disability data and measure. The authors conducted a retrospective analysis of data from the World Health Survey (WHS) (2002-2004) for nationally representative samples of civilian, non-institutionalized populations in 54 countries. A disability was measured as having at least one severe or extreme difficulty with bodily functions (seeing, concentrating) and activities (moving around, self-care) based on an individual’s self-reports
In the 54 countries under study, severe or extreme functional or activity difficulties are highly prevalent. For all countries, disability prevalence is estimated at 14% for all adults. Low and middle income countries have higher disability prevalence compared to high income countries. Among subgroups, disability prevalence stands at 12% among working age adults and 39% among the elderly. Women have higher prevalence than men.
Disability is found to be highly prevalent among adults, with an estimated global prevalence at 14%. Disability deserves enhanced policy attention and resources in public health and international development
Discussion Paper No: 2013-06, Forthcoming in Disability and Rehabilitation
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