This toolkit was created in response to increasing interest and requests from persons with disabilities and their representative organizations from all over the world. The aim of this toolkit is to contribute to the growing global dialogue on the importance of data on persons with disabilities, specifically to provide some basic knowledge on data collection, analysis, and use of data for evidenced based advocacy to influence policy and decision makers. The toolkit discusses the use of the WG questions as best practices to be employed in data collections and disaggregating data by disability.
There is growing evidence that COVID-19 is disproportionally impacting the lives of people with disabilities. This includes evidence of the increased risk of severe outcomes of contracting COVID-19 amongst people with existing health conditions, including many people with disabilities. It also includes a wide range of other potential impacts such as: reductions or disruptions in non-COVID-19 health or rehabilitation services, the effects of shielding on isolation and mental health, the implications of social distancing on people who require carer support, and the impact on poverty, participation and wellbeing due to disrupted disability-inclusive development programmes.
Measurement of disability in research has historically been contested and a number of different tools exist. Clear guidance is needed on how to determine which tool to use to understand the situation of people with disabilities in different settings, and plan responsive and inclusive COVID-19 programmes and policies to support their needs. Good quality, comparable data on disability is essential for tracking the impact of the COVID-19 pandemic, as well as prevention and mitigation interventions, amongst people with disabilities. Such evidence is also imperative for tracking progress towards the Sustainable Development Goals, and UNCRPD compliance.
This evidence brief synthesises findings from a scoping review of ICF-compatible tools to measure disability in population-based surveys with a focus on LMICs (2018), protocols and research outputs from seven population-based surveys of disability across Asia, Africa and the Pacific, secondary analyses of the South African Census, US National Health Interview Survey and three Demographic and Health Surveys, reflections from global stakeholders in disability measurement (including the UN Flagship Report on Disability), and evidence compiled for the upcoming Global Disability Research Massive Open Online Course at the London School of Hygiene & Tropical Medicine
Led by The Asia Foundation (the Foundation) in Kabul, Afghanistan, the WHO’s and World Banks’ Model Disability Survey (MDS) was implemented in Afghanistan in 2019 to provide rigorous and current data for policy and action. Using an adapted MDS, the MDSA 2019 was designed and implemented to generate representative data at nationally and regionally representative levels.
A complex survey using multistage sampling was administered respectively to adult (18+ years) and child (2–17 years) populations; a total of 14,290 households were surveyed, representing 111,641 Afghans across the country. Separate survey tools were implemented for adults (157 questions) and children (53 questions). Three core tools were developed covering: 1) household characteristics; 2) adult disabilities (related to functioning, health conditions, personal assistance, assistive products and facilitators, health care utilization, well-being and empowerment); 3) child disabilities (related to functioning and health conditions)
Purpose: Translating the Neck Disability Index (NDI) into the Malay language (NDI-M); evaluation of psychometric properties in patients with neck pain.
Methods: The NDI-M was translated according to established guidelines. In the first visit, 120 participants completed the NDI-M, visual analogue scale (VAS) for pain and demographic details. 98 participants returned to complete similar questionnaires and the Global Rating of Change (GRoC) scale. The NDI-M was evaluated for internal consistency, test-retest reliability, content validity, construct validity and responsiveness.
Results: The NDI-M demonstrated excellent internal consistency (Cronbach’s α = 0.84) and good test-retest reliability (ICC2,1 = 0.79). Content validity was confirmed with no floor or ceiling effects. Construct validity was established revealing three-factor subscales explaining 68% of the total variance. The NDI-M showed a moderate correlation with VAS (Rp = 0.49, p < 0.001). Regarding responsiveness, a moderate correlation between NDI-M change scores and VAS change scores was found (Rp = 0.40, p < 0.001). However, there was no significant correlation between NDI-M with GRoC (Rs = 0.11, p = 0.27).
Conclusions: The NDI-M is a reliable and valid tool to measure functional outcomes in patients with neck pain. It is responsive in detecting changes in pain intensity during a patient’s rehabilitation journey.
On April 22nd 2020, the European Disability Forum organised the fourth of a series of webinars about the Innovation to Inclusion project (also called i2i programme).
Four speakers were invited to talk about Labour Market Data for persons with disabilities. After their presentation, there was some time for questions and answers.
- Mark Carew (Leonard Cheshire) spoke briefly about i2i’s approach to disability data and how i2i supports a good quality collection of disability data.
- Valentina Stoevska (Department of Statistics, International Labour Organisation) explained the objectives of the statistical data on the labour market characteristics of persons with disabilities. She talked about the use of Washington Group questions on the disability Labour Force Surveys. To conclude her presentation, Ms Stoevska briefly illustrated with some statistics the employment characteristics of persons with disabilities.
- Robert Buluma (Governance, Peace and Security statistics of the Kenya National Bureau of Statistics) briefly provided some information on the development of a disability monograph.
- Anderson Gitonga (United Disabled Persons of Kenya (UDPK)) spoke about the importance of the meaningful participation of persons with disabilities in data gathering and touched upon the technical working group that has been formed in Kenya.
Previous phases of trachoma mapping in Pakistan completed baseline surveys in 38 districts. To help guide national trachoma elimination planning, this work was carried out to estimate trachoma prevalence in 43 suspected-endemic evaluation units (EUs) of 15 further districts. A population-based trachoma prevalence survey was planned for each EU. Two-stage cluster sampling was employed, using the systems and approaches of the Global Trachoma Mapping Project.
Ophthalmic Epidemiol. 2020 Apr;27(2):155-164
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 opinions expressed are those of the authors and do not necessarily reflect the views or policies of the UK government or members of the Inclusion Works consortium.
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.
The International Organization for Migration's Displacement Tracking Matrix (10M DTM) and Humanity & Inclusion (HI) joined efforts to undertake an assessment of the level of access to services and the barriers faced by persons with disabilities within Wau Protection of Civilian Adjacent Area site (PoC AA or PoC site). The study, based on data collected in February 2019, aims to improve the knowledge base available to the humanitarian community about access to services by persons with disabilities living in the PoC site. It provides a quantitative estimate of the prevalence of disabilities among the IDP population and an assessment of the barriers faced by persons with disabilities in accessing humanitarian services across sectors. It also seeks to empower persons with disability living within the PoC site, giving them the opportunity to express their concerns and preferences with regards to possible solutions and targeted interventions.
The aims of this study were to determine the prevalence of disability in the adult Moroccan population, and its distribution according to socio-demographic characteristics and geographical regions. A national survey was conducted in 2014, including a sample of 47,275 adult participants drawn from 16,044 households from urban and rural areas proportioned to population size. The sample’s socio-demographic characteristics were collected in face-to-face interviews. The data were then screened for disability using the Washington Group Short Set of Questions on Disability.
Journal of Rehabilitation Medicine. 2019 Oct 29;51(10):805-812.
The World Health Organization (WHO) estimates that 466 million people were living with disabling hearing impairment in 2018 and this estimate is projected to rise to 630 million by 2030 and to over 900 million by 2050. However, these projections are based on a hearing impairment classification that does not fully reflect the provisions of the International classification of functioning, disability and health for assessing all forms of functional impairments. The case is made for a review of the concept of disabling hearing loss adopted by WHO after the recommendation of the Global Burden of Disease (GBD) Expert Group on Hearing Impairment in 2008.
Bull World Health Organ. 2019;97(10):725-728
Background: There is increasing interest in the collection of globally comparable disability data. Context may influence not only the rates but also the nature of disability, thus locally collected data may be of greater use in service delivery planning than national surveys.
Objectives: The objective of this article was to explore the extent to which two areas, both under-resourced but geographically and socially distinct, differed in terms of the prevalence and patterns of disability.
Method: A cross-sectional descriptive survey design was utilised, using stratified cluster sampling in two under-resourced communities in the Western Cape, South Africa. Nyanga is an informal urban settlement in Cape Town and Oudtshoorn is a semi-rural town. The Washington Group Short Set of questions was used to identify persons with disabilities (PWD), and a self-developed questionnaire obtained socio-demographic information.
Results: The overall prevalence of disability was 9.7% (confidence intervals [CIs] 9.7–9.8) and the proportion of PWD was significantly different between the two sites (Chi-Sq = 129.5, p < 0.001). In the urban area, the prevalence rate of any disability was 13.1% (CIs 12.0–14.3) with 0.3% (CIs 0.1–0.6) reporting inability to perform any function at all. In contrast, the semi-rural community had a lower overall prevalence rate of 6.8% (CIs 6.0% – 7.8%) but a higher rate of those unable to perform any function: 1% (CIs 0.07–1.4). Disability was associated with gender, age, unemployment and lower income status in both areas.
Conclusion: Deprived areas tend to show higher disability prevalence rates than the National Census estimates. However, the discrepancy in prevalence and patterns of disability between the two under-resourced areas indicates the need for locally specific data when planning health interventions.
African Journal of Disability, Vol 8, 2019
Evidence suggests that people with disabilities are the most marginalised and vulnerable group within any population. However, little is known about the extent of inequality between people with and without disabilities in contexts where the majority of persons experience extreme poverty and hardship. This includes in Liberia, where very little is understood about the lives of disabled people in general. This study uses a multidimensional wellbeing framework to understand perceived relative inequality associated with disability by assessing several facets of wellbeing across and within households containing disabled members (N = 485) or households with no disabled members (N = 538) in Liberian communities (Total individuals surveyed, N = 2020). Statistical comparisons (adjusted for age, sex, education and wealth differences and clustered at the household, village and county level) reveal that disabled Liberians are managing similarly to non-disabled Liberians in terms of income and education, but experience many perceived relative inequalities including in life satisfaction, transport access, political participation and social inclusion.
PLoS ONE 14(7)
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.
Purpose: Determine the association of different social factors with Functional Capacity Evaluation (FCE) performance in adults.
Materials and methods: A systematic literature search was performed in MEDLINE, CINAHL, and PsycINFO electronic databases. Studies were eligible if they studied social factor’s association with the performance of adults undergoing FCE. Studies were assessed on methodological quality and quality of evidence. The review was performed using best-evidence synthesis methods.
Results: Thirteen studies were eligible and 11 social factors were studied. Considerable heterogeneity regarding measurements, populations, and methods existed among the studies. High quality of evidence was found for the association of FCE performance with the country of FCE and examiner’s fear behavior; moderate quality of evidence with previous job salary; and low or very low quality of evidence with compensation status, litigation status, type of instruction, time of day (workday), primary or mother language, and ethnicity. Other social factors were not studied.
Conclusions: Evidence for associations of various social factors with FCE performance was found, but robust conclusions about the strength of the associations cannot be made. Quality of evidence ranged from high to very low. Further research on social factors, also within a biopsychosocial context, is necessary to provide a better understanding of FCE performance.
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
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.
Source e-bulletin on Disability and Inclusion