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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"

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

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.

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