This joint guidance note provides harmonized guidance on how humanitarian actors can collect data on PwD in the process of assessments and studies and encourages all Clusters to develop specific guidance on data on disability partners should collect in the process of monitoring and reporting activities
Purpose: To describe the experiences of growing up after acute paralytic poliomyelitis and strategies used to adapt to the new situation.
Methods: Seven women and seven men (mean age 70 years, min–max 61–78 years) with late effects of polio, who had contracted paralytic polio in their childhood. Data were collected using semi-structured interviews, transcribed verbatim, and analyzed by systematic text condensation.
Results: Memories of contracting acute paralytic poliomyelitis involved being immobilized and sent away from home for surgical and physiotherapeutic treatment. Growing up in a social context that was often tough and unfriendly resulted in the development of strategies, such as optimistic thinking, trying to blend in, trusting one’s ability to manage, and to handle the preconceptions and expectations of others. At the onset of late effects of polio, some of these strategies were still functioning, whereas overachieving, disregarding pain, and weariness were not.
Conclusion: The challenges of growing up with a disability following paralytic polio led to the development of various psychological strategies for managing daily life. By understanding these experiences and strategies, knowledge may be gained in assisting rehabilitation professionals to better support persons with late effects of polio in adapting to the new situation.
This report illustrates how rehabilitation contributes to achievement of several of the Sustainable Development Goals (SDGs), improves global health, and promotes the realisation of human rights for all. The purpose of this report is to provide evidence to stakeholders upon which to build successful strategies to improve the availability of quality, coordinated, affordable, and user-centred rehabilitation. By situating disability and rehabilitation within global discourse and policy, it is intended to provide guidance on the implementation of effective rehabilitation-focused policy and practice, contributing to progress towards global development goals.
SDGs 1,3,4,5,8, 10 and 11 are considered
The report concludes with sets of specific recommendations for different stakeholders (states, donors and civil society, including disabled people’s organisations), which have the potential to strengthen rehabilitation services and improve the health and wellbeing of millions around the world. Included in annex are case studies of government donors and their progress towards meeting the recommendations set out in this report. These case studies are intended to serve as examples for stakeholders for how some of the recommendations have already been included within national policies and activities, where gaps exist and identify areas for improvement.
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)
Every 3 seconds someone develops dementia and it’s one of the leading causes of death worldwide. Despite being some of the most at-risk in times of natural disaster, conflict and forced migration, there is a lack of awareness that dementia is a medical condition, meaning people with dementia are being neglected when they’re most in need of support.
This report investigates ways humanitarian emergency responses can protect and support people living with dementia. It draws on the experiences of people affected by dementia, Alzheimer’s specialists in affected countries, humanitarian organisations and inter-governmental organisations including the World Health Organisation and UNHCR.
Our findings reflect a wider issue of a lack of support for older people and those with disabilities in humanitarian response. We have found that people with dementia are systemically overlooked, due to a lack of global awareness of the condition and associated stigma.
The report is a collaboration between the Global Alzheimer’s & Dementia Action Alliance, Alzheimer’s Disease International and Alzheimer’s Pakistan.
The importance of addressing both safety and accessibility for inclusive urban mobility is discussed.
Case studies provided are:
- Accessible public transport for employment, Senegal
- Training and ICT solutions, Kenya
- Tuk Tuk drivers certified on accessibility, Laos
- Designing Bus Rapid Transport (BRT) systems for accessibility, South Africa
- Improving accessibility to transport, Brazil
- Making public transport more inclusive with technology, Singapore
- Taking efforts to be more inclusive, France
- A model city for accessibility, Brazil
- Prioritising accessibility, Czech Republic
- Getting all residents and visitors to engage in all aspects of city life, Luxembourg
- Communications training, Russia
- Metro access audits, India
Recommendations are made to governments concerning strengthening poicy frameworks and removing barriers to accessible mobility
The specific goals of this publication are first, to conduct an analysis of 1 year of conflict related trauma in Gaza; second, to highlight the role of the Health Cluster partners, including the World Health Organization (WHO) as the cluster lead agency, in supporting the local health system; and third, to document success stories, challenges and lessons learnt
It is commonly assumed that there is a lack of disability data, and development actors tend to attribute lack of data as the reason for failing to proactively plan for the inclusion of people with disabilities within their programming. However, it is an incorrect assumption that there is a lack of disability data. There is now a growing amount of disability data available. Disability, however, is a notoriously complex phenomenon, with definitions of disability varying across contexts, as well as variations in methodologies that are employed to measure it. Therefore, the body of disability data that does exist is not comprehensive, is often of low quality, and is lacking in comparability. The need for comprehensive, high quality disability data is an urgent priority bringing together a number of disability actors, with a concerted response underway. We argue here that enough data does exist and can be easily disaggregated as demonstrated by Leonard Cheshire’s Disability Data Portal and other studies using the Washington Group Question Sets developed by the Washington Group on Disability Statistics. Disaggregated data can improve planning and budgeting for reasonable accommodation to realise the human rights of people with disabilities
Sustainability 2019, 11(11), 3091
Handicap International (HI) commissioned a study on on explosive hazard victim reporting and data management processes in Iraq. The overall objectives of the study were to:
- Understand what explosive hazard victim reporting and data management processes exist in Iraq;
- Identify who is collecting such information, for which reasons and how it is being shared, and how it is being officially used;
- Identify whether international victim data collection good practices and reporting standards are being followed up, and make concrete recommendations to help meet the standards;
- Understand the successes, shortfalls, and challenges in data collection and information sharing;
- Identify the needs of the data collection community in terms of ensuring sufficient victim reporting and data collection;
- Identify if and how the data on victims is being collected and used by government authorities and the international fora.
Desk research was carried out and data collection took place in March 2019 in Erbil, Baghdad and Ninewa governorates in Iraq. In total, the qualitative researcher spent 3 days in Erbil, 4 days in Baghdad, and 6 days in Ninewa governorate to conduct interviews through a snowball approach. In total, 22 interviews were conducted with a variety of stakeholders, including humanitarian mine action actors, government officials, hospital directors, police and community leaders. This report provides an overview of the main findings.
This study explores participation of people with disabilities in social protection programmes, with Tanahun District of Nepal as the study setting. This research uses mixed methods to assess coverage (through direct survey), how coverage varies amongst people with disabilities (e.g. by gender, impairment type), as well as challenges and facilitators to enrolling in or using relevant social protection programmes. This research benefits from a population-based study design and from the use of the Washington Group question sets
The European Journal of Development Research (2019) 31:929–956
This tool has been developed by ADD International for use with partner DPOs, based on existing good practice in the development sector. It was developed with input from MEL staff across the organisation in July 2016, based on ADD’s long experience of organisational capacity building practice with DPOs , and was then piloted with DPOs before being finalised. It replaces the Five Core Capabilities tool which we have previously adapted for use within ADD International’s programmes. The key elements of the Five Core Capabilities tool have here been incorporated into a simpler model with three main categories – the three circles – and includes a system for identifying progress against specific plans within each capacity area by exploring a total of 23 different aspects of capacity within these three broad areas. The three circles tool supports organisational capacity building in the following ways:
- To support discussion and learning within partner DPOs on the key aspects of organisational capacity,
- To analyse gaps and weaknesses in organisational capacity, and to identify and prioritise practical action needed to address these,
- To identify specific organisational capacity building support needed from ADD/other sources to address the issues raised,
- To track progress on strengthening organisational capacity over time.
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.
Background and purpose: The increase in use of everyday information and communication technologies can lead to the need for health professionals to incorporate technology use competencies in practice. Information and communication technologies has the potential to improve participation in daily life among people with disability. The aim was to review and describe evidence of the use of information and communication technology, including mobile technology, for improving participation in everyday life. A secondary aim was to describe how study outcomes were related to participation.
Materials and methods: A scoping review methodology was used to identify studies through databases as MEDLINE, CINAHL, Cochrane Library. Thereafter, the studies were screened and assessed for inclusion.
Results: Eleven studies were included. The most commonly used technology were videoconferencing and the telephone. Ten of the 11 studies reported a change in participation in everyday life. Participation was mainly described as involvement in a life situation or related to activities of daily living.
Conclusion: Delivering an intervention to improve participation through information and communication technology can be a valid option in rehabilitation. There is a need to measure and describe the intervention and its outcomes in relation to a definition of participation in future studies.
Este primer informe regional de la situación de las personas con discapacidad en América Latina ha sido elaborado por RIADIS con la finalidad de realizar un primer acercamiento al estado de la implementación de los ODS bajo el enfoque de la CDPD y la reformulación del Programa de Acción del Decenio de la Organización de los Estados Americanos (OEA). En este sentido, el informe pretende identificar los avances y buenas prácticas que se encuentran realizando los gobiernos de la región en materia de la aplicación de la CDPD a través de la implementación de los ODS en la región, así como establecer las oportunidades y los desafíos que se presentan para que las organizaciones de personas con discapacidad puedan seguir conquistando nuevos espacios y haciendo efectivo el ejercicio pleno de sus derechos. El presente informe se enfoca en diez principales áreas temáticas, identificadas como prioritarias por las personas con discapacidad de la región, quienes aportaron al abordaje de las mismas, tanto a través de las respuestas que se recopilaron de la encuesta inicial, como a través de las contribuciones grupales e individuales obtenidas en el taller de revisión del borrador del informe regional.
Las diez áreas temáticas que se abordan en el presente informe son las siguientes: 1. Educación inclusiva 2. Mujeres con discapacidad 3. Personas indígenas con discapacidad 4. Inclusión laboral de las personas con discapacidad 5. Reducción de riesgos de desastres y acción humanitaria 6. Accesibilidad 7. Acceso a la justicia 8. Derecho a vivir de forma independiente y ser incluido en la comunidad 9. Recopilación de datos 10. Participación de las personas con discapacidad
This document provides a rapid review of the evidence on disability inclusive approaches to HIV prevention and response. The purpose of this review is to inform DFID’s policy and programming around integrated approaches to HIV, care and treatment. After briefly outlining the methodology in section 2, section 3 provides an overview of the evidence base on disability and HIV programming, and section 4 provides an overview of key barriers to accessing HIV-related services for people with disabilities. Finally, section 5 provides a series of case studies highlighting lessons learned including key enabling factors. This review finds that overall the evidence base on disability inclusive HIV programming is limited, with the majority of evidence from disability-specific interventions targeted at specific groups of people with different impairments
Purpose: Evaluating physical fitness in individuals with intellectual disabilities (ID) is challenging, and a multitude of different versions of tests exist. However, psychometric properties of these tests are mostly unknown, and both researchers as clinical practitioners struggle with selecting appropriate tests for individuals with ID. We aim to present a selection of field tests with satisfactory feasibility, reliability, and validity, and of which reference data are available.
Methods: Tests were selected based on (1) literature review on psychometric properties, (2) expert meetings with physiotherapists and movement experts, (3) studies on population specific psychometric properties, and (3) availability of reference data. Tests were selected if they had demonstrated sufficient feasibility, reliability, validity, and possibilities for interpretation of results.
Results: We present a basic set of physical fitness tests, the ID-fitscan, to be used in (older) adults with mild to moderate ID and some walking ability. The ID-fitscan includes tests for body composition (BMI, waist circumference), muscular strength (grip strength), muscular endurance (30 second and five times chair stand), and balance (static balance stances, comfortable gait speed).
Conclusions: The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness in adults with ID. Recommendations for future research include expansion of research into psychometric properties of more fitness tests and combining physical fitness data on this population in larger datasets.
Humanity & Inclusion has created a learning toolkit to improve the collection of quality data on persons with disabilities and improve its use by humanitarian organisations.
Until now, existing guidance on the Washington Group Questions (WGQs) has been specific to national data collection efforts on persons with disabilities. To address the lack of guidance for humanitarian actors, Humanity & Inclusion (HI) is launching a learning toolkit on collecting data in humanitarian action, which includes an e-learning, a training pack for enumerators and various supporting resources that can all be found on the HI website.
Gathering evidence on the use of the WGQs in humanitarian action:
To respond to the need to collect, analyse and use data on persons with disabilities in humanitarian action, HI has been implementing a project, funded by the UK Department for International Development, to test and assess the use of the WGQs in humanitarian action. An action-research was carried out with over 30 humanitarian partners in Jordan, the Democratic Republic of Congo and the Philippines, with the evidence used to develop learning materials.
Development of a learning toolkit for humanitarian actors:
In addition to the findings of the action-research, HI gathered inputs from over 30 humanitarian organisations working in 22 countries to inform the design of the learning toolkit. Specific focus was given to the development of open source materials that would be accessible with screen readers, on mobile phones, and in hard to reach locations. The content was then informed by selected subject matter experts in inclusive humanitarian action and data collection.
What is included in the toolkit?
An e-learning on Collecting Data for the Inclusion of Persons with Disabilities in Humanitarian Action – The Application of the WGQs providing an entry point for humanitarian actors who would like to understand how to plan for and use the WGQs.
A Training Pack for enumerators giving guidance, session plans and activities to deliver training on using the WGQs (developed in collaboration with RedR UK).
Supporting resources providing practical guidance on the application of the WGQs in humanitarian contexts.
Who is this for?
The toolkit is tailored to a full range of humanitarian actors who would like to understand how to use the WGQs in their own work and organisations. The content has also been designed to provide technical guidance for programme and technical staff: with a practical focus on different topics relevant for the use of the WGQs –from the human rights based approach that underpins them, to their planning, use and the analysis of the data produced.
Where is the Toolkit available?
The e-learning is available now on disasterready.com and on Kayaconnect.org (accessible for mobile phones and tablets). Organisations interested in hosting the e-learning are welcome to contact the project team members. Toolkit resources and more information about the project are available for download in the project webpage.
This report evaluates existing policies and practices on how older people have been excluded from data in disaster preparedness and humanitarian responses in Bangladesh, India, Nepal, Pakistan, Sri Lanka, Cambodia, Indonesia, Myanmar, the Philippines, Thailand and Vietnam.
In order to evaluate existing policies and practices in the collection of inclusion data, the research employed two main methods: a review of documents and a survey. The review of documents was conducted in three stages: a global literature review, followed by a policy review and a practice review. The survey analysed the responses of 72 respondents from 10 countries .
This report presents the findings of an analysis of data collected by HelpAge International and its network members using HelpAge’s Health Outcomes Tool. The tool is designed to collect data to better understand health and care in older age, and to measure the impact of HelpAge’s health and care programmes. It was developed in response to the challenges posed by the lack of data on older people’s health and care, particularly in low- and middle-income countries, and the resulting lack of understanding about how best to provide age, gender and disability sensitive services for older women and men. The tool was used between 2014 and 2017 in nine low- and middle-income countries across Africa, Asia and Latin America,1 and gathered data from over 3,000 older people. The findings are presented here in the context of the current debate and evidence on older people’s right to health.
This report explores three different areas in relation to ageing and health: older people’s access to health services; availability of care and support; and the impact both health, and care and support services have on older people’s health status, functional ability and wellbeing.
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
Purpose: Despite the importance of the evaluation process in lower limb prosthetic rehabilitation, prostheses are rarely evaluated properly in the Arab world. This is partly due to the absence of any suitable Arabic evaluative tool. The aim of this study is to translate TAPES-R (a standardised evaluative questionnaire) into Arabic and to investigate its psychometric properties on lower limb amputees. Such a tool would ultimately be of benefit for clinical follow-up and research purposes.
Method: International standards were followed for the forward- and back-translation of the TAPES-R questionnaire. A sample of 111 Arabic-speaking volunteers with lower limb amputation completed the translated version of the questionnaire. The responses were then statistically analysed using factor analysis and Cronbach’s α to assess the content and construct validity, and internal consistency (reliability) respectively.
Results: Factor analysis showed that the questionnaire’s items (included in the analysis) can be divided into three distinct dimensions as was originally suggested. The distribution of the items within the three dimensions is comparable with the original questionnaire. All three parts of TAPES-R showed high reliability; where Cronbach’s α were .892, .894, and .873 respectively.
Conclusion: This study found that the Arabic version of TAPES-R represents a valid and reliable tool.
Limitations: The questionnaire is designed to be emailed or posted, but the majority of the amputee population in Jordan did not have these services, so direct contact with each participant was necessary.
Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)
Source e-bulletin on Disability and Inclusion