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Are persons with disabilities included in the effort to leave no-one behind? Mapping disability data in development in Asia and the Pacific

CBM GLOBAL’S INCLUSION ADVISORY GROUP
February 2022

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In the Asia Pacific region, UNFPA and partners work together to implement the Incheon Strategy to “Make the Right Real” for Persons with Disabilities. The Incheon Strategy is the region’s first set of disability-specific development goals to track progress towards the fulfilment of rights of persons with disabilities.

In the region, it is estimated that there are over 650 million persons with disabilities. However, without accurate, timely and disaggregated data, countries are unable to develop effective policies and programmes, monitor the wellbeing of persons with disabilities and evaluate the equity and impact of development efforts. This endangers country commitments to ‘leave no one behind’ and undermines their obligations to the Convention on the Rights of Persons with Disabilities.

This groundbreaking report demonstrates the importance of ensuring data is inclusive and provides recommendations for immediate action in order to improve the collection, analysis and reporting of disability data

Uganda's disability data landscape and the economic inclusion of persons with disabilities

Development Initiatives
November 2021

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This report looks at the landscape of data on disability in Uganda – summarising what data on persons with disabilities is available, who produces and uses it, and how – as well as what this means for the economic inclusion of persons with disabilities.

 

For persons with disabilities to benefit from and contribute to society and the economy there needs to be effective policies, programmes and services that support their inclusion, particularly in employment. Reliable information and data on persons with disabilities, known as ‘disability data’, is essential to planning and for decision-making. When it is of high quality, accessible and used effectively, disability data can help organisations of persons with disabilities (OPDs), civil society, government and businesses better understand and prioritise interventions that are vital for supporting persons with disabilities and ensuring their inclusion.

 

OPDs, civil society and the government have an important role to play in strengthening the landscape of disability data. Developed as part of Development Initiatives’ work on data to support disability inclusion, in consultation with Uganda’s disability rights movement, this report presents an analysis of Uganda’s landscape of disability data. It highlights important data sources, challenges and recommendations, providing a valuable evidence base to inform efforts aimed at strengthening the enabling environment for disability inclusion.

A National Survey of the Social and Emotional Differences Reported by Adults with Disability in Ireland Compared to the General Population

McCONKEY, Roy
2021

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The disadvantages experienced by adult persons with disabilities are well documented. However, limited evidence is available on the extent of differences in comparison with the non- disabled population. In this study, selected indicators of social status and mental wellbeing derived from past research, were used with national samples of adult persons in Ireland with a disability (n = 440) and without a disability (n = 880) recruited through household quota sampling. In addition, comparisons were drawn with equivalent data derived from a contemporaneous national census. Although many of the differences were statistically significant, the effect sizes were mostly medium to low. Moreover, when the inter-relationships among the various indicators was taken into account using Discriminant Analysis, persons with disabilities were less likely to be employed; they reported lower levels of social engagement and had poorer emotional wellbeing. They were also older, more likely to be single and have no children. The study illustrates the potential of using comparative data to monitor the impact of national actions taken to reduce the inequalities experienced by persons with disability as well as highlighting the arenas into which professional supports need to be focused.

Disability Inclusion and Global Development: A Preliminary Analysis of the United Nations Partnership on the Rights of Persons with Disabilities programme within the context of the Convention on the Rights of Persons with Disabilities and the Sustainable

WESCOTT, H N
MACLACHLAN, M
MANNAN, H
2021

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Purpose: This paper provides a preliminary snapshot of the proposed priorities approved by the United Nations programme designated to support the progressive realisation of the CRPD, the United Nations Partnership on the Rights of Persons with Disabilities (UNPRPD) outlined by specific Convention Articles and, more broadly, the Sustainable Development Goals (SDGs).

 

Method:A content analysis of project proposal summaries approved for funding by the UNPRPD was conducted against the CRPD and SDGs. A matrix of data was produced to draw links between proposed objectives and established international frameworks guiding global development.

 

Results:This analysis provides two sets of information. First, a look at the distribution of rights identified in the initial project proposals and accepted by the UNPRPD, establishing a baseline of priorities and outstanding need. Second, it identifies issues that need to be addressed to ensure the advancement of all rights outlined in the CRPD and equitable achievement of the SDGs.

 

Conclusion and Implications:Disability inclusion is necessary to achieve the SDGs in an equitable manner by 2030, as well as implement the CRPD. The UNPRPD supports a diverse range of projects spanning many of the Convention Articles and global goals; however, full participation and scope of disability inclusion requires programming in all areas of both instruments, and this has not yet been fully integrated in the UNPRPD funded project proposals.

 

Limitations: This study was limited to the available UNPRPD project proposal summaries that were successful, and did not include all the proposals submitted for consideration. The proposals accepted for funding give insights into the disability inclusive development priorities chosen for project implementation by UN agencies.

SDG-CRPD Resource Package

OFFICE OF THE HIGH COMMISSIONER FOR REFUGEES (OHCHR)
December 2020

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OHCHR developed a package of resources to support realizing the Sustainable Development Goals for persons with disabilities. These include resources on policymaking (Policy Guidelines for Inclusive SDGs; Training Materials and Videos) and resources on monitoring (Human Rights Indicators on the Convention on the Rights of Persons with Disabilities and a Data Sources Guidance).

 

SDGs:

The Policy Guidelines on inclusive Sustainable Development Goals set out the main actions that should be used to develop policies to achieve the goals for persons with disabilities. Training Materials complementing the guidelines include tools to develop in-person and online trainings. The videos mirror the guidelines and can be used for training and awareness-raising activities.

 

There are Policy Guidelines, Training Materials and Videos for SDG goals 10, 16, 17, 1, 3, 4, 5, 8 and 11. There are thematic briefs for SDG goals 2, 6, 13, 8, 11, 9 and 17.

 

CRPD:

Presented article by article, the indicators are key to facilitating understanding and implementation of the Convention’s provisions. They provide guidance on actions to measure implementation of the CRPD and to track progress over time. Data sources guidance mirrors the human rights indicators and provides examples of different sources of data to inform the outcome indicators.

 

There are indicators and data sources guidance for articles: 1-4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15 and 17, 16, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29, 30, 31, 32, 33.

Disability Data advocacy toolkit

LOCKWOOD, Elizabeth
et al
October 2020

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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.

CitizEMPOWER: The importance of supporting inclusive citizen-generated data initiatives

LEONARD CHESHIRE
October 2020

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These recommendations provide guidance on how to ensure more inclusive and effective implementation of Citizen Generated Data (CGD) initiatives and partnerships that engage communities effectively, and especially young people, persons with disabilities and civil rights defenders.

 

The recommendations focus on:

Inclusive Partnerships and Effective Collaboration including a "Spotlight from Uganda: Using WG questions in the national census"

Data Access and Disaggregation including a "Spotlight from Madagascar: Youth generated data and accountability"

Resourcing and Funding including a "Spotlight from International Non Government Organisations: Using Washington Group Questions (WGQ) in humanitarian and development settings"

Crimes against humanity: Decades of violence and abuse in Mexican institutions for children and adults with disabilities

AHERN, Laurie
BRIZUELA, Lisbet
MILLAN, Ivonne
RODRIGUEZ, Priscila
ROSENTHAL, Eric
October 2020

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In this report, Disability Rights International (DRI) has thoroughly documented and detailed human rights violations against people with disabilities - a culmination of the 20 years of work that DRI has carried out in Mexico. DRI’s investigations cover a wide range of institutions including orphanages, psychiatric hospitals, institutions for people with disabilities and for homeless people, among others. The documentation of such a large number of institutions provides an overview of a scale of violations of the rights of persons with disabilities in Mexico  

Generating disability statistics: Models of disability measurement, history of disability statistics and the Washington Group Questions

Development Initiatives
September 2020

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This paper provides an overview of progress towards the creation of accurate and comparable disability statistics, the critical issues that impact on the measurement of disability, and discusses one of the most prominent international efforts to improve data on disabilities – the Washington Group on Disability Statistics.

Inclusion Works Uganda Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Uganda?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Uganda, and will be helpful for anyone interested in disability inclusion, especially in relation to employment, in Uganda. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This SITAN has been briefly updated from the June 2019 SITAN.

 

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.

Inclusion Works Kenya Situational Analysis

ROHWERDER, Brigitte
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Kenya?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Kenya, and will be helpful for anyone interested in disability inclusion, especially in relation to employment, in Kenya. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This SITAN has been briefly updated from the June 2019 SITAN.

 

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.

Inclusion Works Bangladesh Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Bangladesh?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Bangladesh, and will be helpful for anyone interested in disability inclusion, especially in relation to employment. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships. This situational analysis (SITAN) synthesises the most recent existing literature and evidence (drawing on government and non-government sources available online) about Bangladesh generally and on factors relating to persons with disabilities involvement in formal employment.

 

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.

Inclusion Works Nigeria Situational Analysis

THOMPSON, Stephen
June 2020

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This situational analysis (SITAN) addresses the question: “what is the current situation in relation to formal sector employment for persons with disabilities in Nigeria?”. It has been prepared for the Inclusion Works programme (which works on disability inclusive formal employment in Bangladesh, Kenya, Nigeria and Uganda), to better understand the current context and available evidence in Nigeria, and will be helpful for anyone interested in disability inclusion, especially in relation to employment. It focuses on persons with disabilities, employers, policy, the disability movement, and partnerships.

 

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.

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.

Disability Data Lab learning paper: a practical guide to disability data

JENKINSON, Astrid
et al
December 2019

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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.

Making visible the invisible: Why disability-disaggregated data is vital to “Leave No-One Behind”

ABUALGHAIB, Ola
GROCE, Nora
SIMEU, Natalie
CAREW, Mark T
MONT, Daniel
May 2019

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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

https://doi.org/10.3390/su11113091

Using concept mapping to develop a human rights based indicator framework to assess country efforts to strengthen rehabilitation provision and policy: the Rehabilitation System Diagnosis and Dialogue framework (RESYST)

SKEMPES, Dimitrios
et al
October 2018

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The process of developing an expert guided indicator framework to assess governments’ efforts and progress in strengthening rehabilitation in line with the Convention on the Rights of Persons with Disabilities is described.  A systems methodology - concept mapping - was used to capture, aggregate and confirm the knowledge of diverse stakeholders on measures thought to be useful for monitoring the implementation of the Convention with respect to health related rehabilitation. Fifty-six individuals generated a list of 107 indicators through online brainstorming which were subsequently sorted by 37 experts from the original panel into non overlapping categories. Forty-one participants rated the indicators for importance and feasibility. Multivariate statistical techniques where used to explore patterns and themes in the data and create the indicators’ organizing framework which was verified and interpreted by a select number of participants.

 

Globalization and Health (2018) 14:96
https://doi.org/10.1186/s12992-018-0410-5

Inclusive education and accountability mechanisms. Paper commissioned for the 2017/8 Global Education Monitoring Report, Accountability in education: Meeting our commitments

ABU ALGHAIB, Ola
TROMP, Roseanne
October 2017

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"The adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) and in particular Articles 24, 31 and 33, which requires countries to develop an inclusive education system for all children as well obliging them to implement and monitor the process, presents both a challenge and an opportunity to the countries of the world. This report discusses the advances that have been made in terms of the implementation of inclusive education system for people with disabilities, as well as the challenges that are still ahead. The UNCRPD requires ratifying countries to submit Country Reports on the implementation of the Convention to the UN Committee on the Rights of Persons with Disabilities. The present report is unique in that it is based on a thorough analysis of these Country Reports. In addition, it is based on a thorough review of literature about inclusive education for people with disabilities"

 

Global Report on the participation of organisations of persons with disabilities (DPOs) in VNR Processes

INTERNATIONAL DISABILITY ALLIANCE
2017

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Within the Stakeholder Group of Persons with Disabilities, a working group was created on the Voluntary National Reviews (VNRs) aimed at raising awareness among Organisations of Persons with Disabilities (DPOs) to engage with their governments in the national consultation processes on SDG implementation, with particular focus on the 2017 44 volunteering countries. The VNR working group are compiling an outcome document reflecting the work that DPOs carried out at the national, regional and global levels. A comprehensive report – called the Global Report on DPO Participation in VNR Processes – will be issued in draft form prior to the HLPF and will be updated afterward with concrete findings. 

The report will showcase the national level DPO work carried out in different regions as well as best practices and challenges, and will serve as a case study for Member States. It will additionally be useful for DPOs as a model to engage with their government. The case study will feature the volunteering countries of Denmark, Italy, Sweden, Nigeria, Togo, Kenya, Ethiopia, Argentina, El Salvador, Peru, Guatemala, Indonesia, Bangladesh, India and Jordan.

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.

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