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Addressing the disability data gap in humanitarian action

COLLINSON, Sarah
October 2020

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This Humanitarian Practice Network Paper (Number 83) explores the challenge of improving the collection, analysis and use of disability data to support more inclusive, impartial and accountable humanitarian action. It considers both the obstacles in this area and the potential opportunities for improving practice going forward. The paper draws directly on the experience and outcomes of a recent UK Aid-funded multi-partner action research project led by Humanity & Inclusion which explored how the use of the internationally validated Washington Group Questions on Disability can support the collection of more reliable and comparable quantitative data on persons with disabilities in humanitarian settings.

Based on a broader desk review of practice-based reports and case studies, this paper also draws on a further range of methods and approaches that have been taken to collect, analyse and use data and information to support inclusion of people with disabilities across different stages of the humanitarian programming cycle, focusing particularly on instances where qualitative information is used in combination with quantitative data. The paper looks at the collection and use of data on the accessibility and inclusiveness of humanitarian programmes, as well as data on the number, needs and capacities of persons with disabilities

COVID-19 Disability Rights Monitor

2020

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Evidence is emerging that persons with disabilities are being disproportionately affected by the Coronavirus pandemic and emergency measures being taken by governments worldwide. As governments rush to respond to the virus, it is more critical than ever to guarantee that measures taken are fully inclusive of persons with disabilities and prevent human rights violations from taking place.

 

With the endorsements of the United Nations Special Rapporteur on the Right to Health, Mr Dainius Pūras, and the UN Special Rapporteur on the Rights of Persons with Disabilities, Ms Catalina Devandas Aguilar, a coalition of six disability rights organisations is today launching a major international monitoring initiative entitled “COVID-19 Disability Rights Monitor” to conduct rapid independent monitoring of state measures concerning persons with disabilities. The first element of this global initiative is the launch of two surveys requesting official information from governments and requesting the testimonies of persons with disabilities and their representative organisations. The surveys aim to collect information about what states are doing to protect core rights of persons with disabilities including the rights to life, access to health and essential services.

Aid out of reach: A review of the access to humanitarian aid for women and men, girls and boys with disabilities affected by Cyclone Idai, Mozambique

BAART, Judith
WESTER, Mirian
2019

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The objective of this study is to generate empirical evidence on the barriers to accessing aid for women and men, girls and boys with disabilities in a post-Cyclone Idai context. By doing so, it also seeks to contribute to policy development for an inclusive humanitarian response in Mozambique

The research followed a qualitative design, using interviews and focus group discussions followed by inductive analysis to reveal dominant themes and stories. Data was collected in 30 in-depth interviews with women and men, girls and boys with disabilities and/or caregivers in communities (Beira), as well as in resettlement sites (Dondo).

Every learner matters: Unpacking the learning crisis for children with disabilities

McCLAIN-NHLAPO, Charlotte
et al
June 2019

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This paper was developed by the World Bank in partnership with Leonard Cheshire and Inclusion International. It is an attempt to add knowledge to the current understanding of the importance of learning achievements, with a focus on children with disabilities. While the premise is that inclusive education refers to the inclusion of all children, the focus of this paper is on children with disabilities.

The aim of the paper is to:

  • Provide an evidence-based review of educational participation of children with disabilities.
  • Establish a case for focusing on learning achievements for students with disabilities.
  • Take stock of current mechanisms of measurement of learning outcomes and review their inclusivity.
  • Explore evidence of practice and systems which promote disability-inclusive learning for all. 

Four case studies are provided - from Pakistan, South Africa, Canada and UK.

Three Circles Tool - organisational capacity assessment & planning tool

ADD International
April 2019

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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.

Young persons with disabilities: Global study on ending gender-based violence, and realising sexual and reproductive health and rights

McCLOSKEY, Megan
MEYERS, Stephen
July 2018

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This study provides an analysis on the situation of young persons with disabilities concerning discrimination and gender-based violence, including the impact on their sexual and reproductive health and rights. It also provides an assessment of legal, policy and programming developments and specific good practices in service delivery as well as best-standard prevention and protection measures. Finally, policy and programming recommendations are provided to assist in greater promotion of the rights of young persons with disabilities, with a particular emphasis on preventing and responding to gender-based violence, and realizing sexual and reproductive health and rights.

Bridging the Gap: Examining disability and development in four African countries. The case for equitable education

GROCE, Nora
et al
June 2018

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Over the course of a three-year project the Leonard Cheshire Research Centre worked with research teams in four countries: Kenya, Sierra Leone, Uganda and Zambia to better understand the relationship between disability and development in each country across four domains: education, health, labour markets and social protection. This mixed methods research used a range of interrelated components, including policy and secondary data analysis, a household survey of 4,839 households (13,597 adults and 10,756 children), 55 focus group discussions and 112 key informant interviews across the four countries. 

 

This report explores key findings in relation to education. Key findings discussed include school attendance, cost of education, inability to learn and gap in educational attainment.

Part 2: The feasibility of utilising photovoice method and the World Health Organization Quality of Life instrument in evaluating the Community-Based Rehabilitation programme in Namibia: A pilot study

SHUMBA, Tonderai W.
MOODLEY, Indres
2018

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Background: Evaluation of Community-Based Rehabilitation (CBR) programmes in Namibia has been primarily quantitative, focusing mainly on outputs, including numbers of persons with disabilities served, referrals made and activities implemented. Little or no evidence is available on experiences and quality of life of persons with disabilities, despite the CBR programme being operational for more than 20 years. The 2011 World Report on Disability recommended the use of appropriate tools to fill the research gap by integrating the experiences of persons with disabilities and their quality of life.

 

Objectives: The overall objective of the larger cohort study is to develop a monitoring and evaluation tool that can measure and integrate the experiences of persons with disabilities and their quality of life within the context of the CBR Programme in Namibia.

 

Method: An adapted photovoice process was conducted with six purposively selected participants over a period of 1 month. The World Health Organization Community-Based Rehabilitation (WHO CBR) Matrix was used to identify the themes and subthemes. Participants were requested to complete the World Health Organization Quality of Life (abbreviated version) (WHOQOL-BREF) instrument at the end of the photovoice process to determine their quality of life.

 

Results: Administering the WHOQOL-BREF instrument at the end of the photovoice process measured both the quality of life of persons with disabilities and at the same time indicated the convergence and divergence in the two data collection methods. The study demonstrated a stronger convergence than divergence of the two methods. A feasibility criterion was mapped for future studies.

 

Conclusion: This study demonstrated that photovoice is a flexible method that can be used with a variety of disabilities and has the potential of being combined with the WHOQOL-BREF assessment form. A larger cohort study may consider implementing photovoice and WHOQOL-BREF on multiple study sites and be able to compare results, considering geographical and demographic variables. The feasibility of utilising each method alone and in combination offered valuable insights on future conceptual framing of CBR programme evaluation. This conceptual framing will allow CBR practitioners to appreciate how these two methods contribute to a rigorous process of CBR programme evaluation.

GEM report summary on disabilities and education

UNESCO
2018

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In support of the run-up to the 2020 GEM Report on inclusion and education, this paper contains summarised content related to disabilities and education in previous Global Education Monitoring (GEM) Reports since 2010. Reports cited from 2010 and 2015 monitored countries in the Global South. The GEM Report started monitoring countries in the Global North from the 2016 Report onwards only.

 

Topics covered include: compliance monitoring; the role of civil society organisations; lack of data; marginalisation; data on primary school attendance; intersection with other disadvantages; different education related challenges; and ten education policies to counteract marginalisation.

Global education monitoring report, 2019: migration, displacement and education: building bridges, not walls

UNITED NATIONS EDUCATIONAL, SCIENTIFIC AND CULTURAL ORGANIZATION (UNESCO)
et al
2018

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“The 2019 GEM Report continues its assessment of progress towards Sustainable Development Goal 4 (SDG 4) on education and its ten targets, as well as other related education targets in the SDG agenda.


Its main focus is on the theme of migration and displacement. It presents evidence on the implications of different types of migration and displacement for education systems but also the impact that reforming education curricula and approaches to pedagogy and teacher preparation can have on addressing the challenges and opportunities posed by migration and displacement. It gives voice to experiences in host and home communities.


With the help of case studies, it illustrates approaches which work and could be scaled up. In this way, it aims to be a tool for practitioners. It will make the case for investing in education of good quality in rural areas suffering from depopulation and in slum areas suffering from large population inflows; in countries with high rates of emigration and those with high rates of immigration; in short-term refugee emergencies and in protracted crises. Its analysis, conclusions and recommendations advance the aims of SDG 4 and its call to leave no one behind.”

Pacific regional consultation – IASC guidelines on inclusion of persons with disabilities in humanitarian action

DOMINIK, Georgia
January 2018

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The Pacific Disability Forum (PDF), in partnership with the Inter-Agency Standing Committee (IASC) Task Team on Inclusion of Persons with Disabilities in Humanitarian Action and the International Disability Alliance (co-chair of the Task Team), held a regional multi-stakeholder consultation for the Pacific in Nadi, Fiji from 24 – 25 January 2018.

The workshop was the first in a series of regional consultations which will support the development of the IASC Guidelines on Inclusion of Persons with Disabilities in Humanitarian Action (“the Guidelines”). 

The Guidelines will assist humanitarian actors, governments, affected communities and organizations of persons with disabilities to coordinate, plan, implement, monitor and evaluate essential actions that foster the effectiveness, appropriateness and efficiency of humanitarian action, resulting in the full and effective participation and inclusion of persons with disabilities and changing practice across all sectors and in all phases of humanitarian action. 

Disability inclusion and the sustainable development goals : practices and challenges

AL-GHAIB, Ola Abu
WILM, Susanne
October 2017

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This research was commissioned on the occasion of the 2017 High-level Political Forum (HLPF) in New York to investigate how far the global commitment to disability has translated into implementation, monitoring and reporting processes at national and sub-national level. Four case studies were commissioned, exploring the extent of disability inclusion in alignment with the SDGs in Bangladesh, Kenya, Sierra Leone and Zambia. DPOs played a pivotal role in the research, with more than 40 DPOs consulted through key informant interviews and focus group discussions. In Zambia, the research was implemented by a local DPO – the Zambia Federation of Disability Organisations (ZAFOD). A literature review identified internet-based policy, legal and strategic documents related to disability and the 2030 Agenda, as well as documentation and reports on different SDG nationalisation initiatives.

 

 

Making disability rights real in southeast Asia: Implementation of the UN Convention on the Rights of Persons with Disabilities in ASEAN

COGBURN, Derrick
KEMPIN REUTER, Tina
March 2017

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This edited collection evaluates national implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD) across all 10 countries of the Association of Southeast Asian Nations (ASEAN) region. Working with interdisciplinary and country-specific research teams, the book presents case studies of CRPD implementation across Southeast Asia, including detailing the factors that influenced each country to ratify the CRPD; the focal point structure of implementation; the independent mechanism established to monitor implementation; and civil society organizations’ involvement.

The book also evaluates the implications of CRPD implementation for human rights and development in ASEAN, including the degree of institutionalized support for persons with disabilities; the development objectives of the CRPD against the strategic objectives of the ASEAN community; and the way these developments compare with those in other countries and regions

Human rights and disability: A manual for national human rights institutions

CROWTHER, Neil
QUINN, Gerard
REKAS, Abigail
March 2017

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(Updated Dec 2018)

This Manual is designed to provide practical guidance for national human rights institutions (NHRIs) that are actively working to advance the human rights of persons with disabilities, as well as those NHRIs that are seeking to strengthen their efforts in this area. This Manual provides practical guidance and recommendations about how the role and functions of NHRIs can be directed to provide better protection for persons with disabilities, to promote greater awareness and respect for their rights, and to monitor the progress made and obstacles encountered in advancing their rights.

There are three parts to the manual.

  • Part I: The concepts - the human rights framing of disability
  • Part II: The law - international human rights law and disability (CRPD and others)
  • Part III: The practice - what NHRIs can do to contribute to the process of change

 

 

An Online Survey on Identification of Evaluation Capacity, Needs and Current Practice of Programme Evaluation in Community-based Rehabilitation

WEBER, Joerg
POLACK, Sarah
HARTLEY, Sally
2016

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Purpose: Evaluation of Community-based Rehabilitation (CBR) is important for developing good practice and providing a foundation for evidence of efficacy of practice. Since not much is known about the extent to which monitoring and evaluation (M&E) are carried out within CBR programmes, this study aimed to enhance knowledge by focussing on current M&E activities, the need and capacity of programmes to conduct evaluations and the challenges experienced. 

 

Method: An online survey of 15 questions was developed, field-tested and sent out to 236 CBR managers in Africa, Asia and Latin America.  

 

Results: The majority (86%) of the respondents indicated that their programmes had been evaluated in the past.While this was mainly done by international donors (87%), only around half of the respondents reported programme participants as the main audience. Just over half of the programmes (54%) included people with disabilities, their families and community members in evaluation processes. Insufficient financial resources were considered the most important challenge to conduct evaluation, particularly in the African region and among smaller programmes. The complexity of CBR was also indicated as an important barrier to evaluation.

 

Conclusions and Recommendations:  Although evaluations have been widely implemented in CBR programmes, many of them are not locally owned, and people with disabilities and their families are often not included in evaluation processes. The issues of limited financial resources and CBR complexity reflect current discussions in other areas of mainstream development. It is therefore recommended that models for evaluation in CBR should learn from, and be embedded in, ongoing developments in mainstream evaluation in international developm

Cross-cutting Capacity Building Learning Review

LIPSON, Brenda
GARBUTT, Anne
March 2016

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This short report is based on an analysis of the individual case studies on capacity building in Cambodia and Bangladesh. The purpose of this cross-case report is to present the views of the two consultants with regard to the following:

  • Points arising from the experiences in the two countries which shed light on the ADD approach and working model of capacity building.
  • Recommendations for ADD to reflect upon in its work to strengthen the capacity building model and the overall monitoring, evaluation and learning on this work.

Participatory Monitoring of Community-Based Rehabilitation and other Disability- Inclusive Development Programmes: the Development of a Manual and Menu

Madden, Rosamond H
et al
2016

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Purpose: This paper describes a three-year research project leading to the development of the CBR Monitoring Manual and Menu (MM&M). The MM&M is a practical toolkit that meets the needs of CBR managers and stakeholders, and is consistent with the philosophy of CBR and community- based disability-inclusive development. It is designed to produce meaningful and locally useful information and data, based on international data standards where possible, to enable aggregation at regional, national and international levels.

 

Methods: Five complementary workstreams of research were carried out from 2011 to 2014: 1) literature review and analysis; 2) participatory action research with CBR stakeholders; 3) analysis and refinement of validity of concepts andstructures; 4) consultation and review; and 5) synthesis of results. This article documents the method and key results of each of the five workstreams, and the lessons learned along the way.

 

Results: The MM&M is now freely available on-line at thttp://sydney.edu. au/health-sciences/cdrp/projects/cbr-monitoring.shtml. Collaboration among members of the development team continues, chiefly via an on-line group to which new members have been welcomed.

 

Conclusion and Implications: At the time of writing, the MM&M is the only international monitoring product, known to the authors, that consciously sets out to reflect both a ‘bottom- up’ and ‘top-down’ perspective of monitoring information and data.To achieve this for a complex programme such as CBR, and to align with its principles, it was essential to use a multi-component and multi-stage strategy for tool development, involving a diverse multidisciplinary team including collaboration with CBR stakeholders.

Developing human rights based indicators to support country monitoring of rehabilitation services and programmes for people with disabilities : a study protocol

SKEMPES, Dimitrios
BICKENBACH, Jerome
September 2015

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This paper seeks to develop a study protocol that can assess and improve the provision of rehabilitation services for people with disabilities across the world. The research targets a knowledge gap that exists whereby there are no indicators to reliable identify the performance of rehabilitation systems and monitoring technologies. The paper provides a detailed analysis of the issue before outlining and justifying a choice of methods for data collection and analysis, and the likely impact and use of the study results

BMC International Health and Human Rights, 15:25

Capturing the difference we make : community-based rehabilitation indicators manual

WORLD HEALTH ORGANIZATION (WHO)
2015

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This manual presents indicators that "capture the difference (Community-Based Rehabilitation) CBR makes in the lives of people with disabilities in the communities where it is implemented. This manual presents these (base and supplementary) indicators and provides simple guidance on collecting the data needed to inform them. The indicators have been developed to show the difference between people living with a disability and their families and those without disabilities in relation to the information reported in the indicators. This comparability provides valuable information to CBR managers, donors and government agencies alike, which can be used to guide decision-making, support advocacy and improve accountability. Further, the ability of the indicators to provide a comparison of the populations of persons with disability to persons without disability aligns with the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which states that persons with disability have equal rights to those without disabilities...this manual serves to standardize the monitoring of differences made by in the lives of people with disabilities and their families, making it possible to compare the difference CBR makes across areas and countries. This manual aligns with the WHO Global Disability Action Plan 2014–2021, and may also be used to monitor other development plans in an easy and efficient way”

Operationalizing the 2030 agenda : ways forward to improve monitoring and evaluation of disability inclusion

UNITED NATIONS DEPARTMENT OF ECONOMIC AND SOCIAL AFFIARS (UNDESA)
2015

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This note concerns monitoring and evaluation of disability and inclusion in light of the sustainable development goals. The note identifies steps which can be taken by individual countries and the international community as a whole to address the gaps in data disaggregation and collection concerning people with disabilities. The note concludes with a discussion of possible ways forward for better monitoring and evaluation for disability inclusion in the 2030 Agenda for Sustainable Development

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