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Innovative data use: can we learn more from what is already available?

DANEMAYER, Jamie
September 2023

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A short talk given at the Disability Innovation Summit: Inclusive Interactions conference organised by GDI hub on 13 Sep 2023.

The use of published datasets on the prevalence of disability is reviewed. The numbers of datasets and their harmonisation is described and the advantages, limitations and opportunities for use are outlined. 

Assistive technology in Korea: Findings from the 2017 National Disability Survey

DANEMAYER, Jamie
LIN, Myung-Joon
July 2023

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Explicitly monitoring the need, use and satisfaction of assistive product (AP) provision is essential to support population health and healthy longevity in ageing/aged countries, like Korea. We present findings from the 2017 Korea National Disability Survey (NDS) on AP access and compare them to international averages, introducing Korea’s data into the wider coherence of global AP research.

 

Disability and Rehabilitation: Assistive Technology

https://doi.org/10.1080/17483107.2023.2225565 

 

Assistive Technology Changes Lives: an assessment of AT need and capacity in England

AUSTIN, Vicki
PATEL, Dilisha
DANEMAYER, Jamie
MATTICK, Kate
LANDRE, Anna
SMITOVA, Marketa
BANDUKDA, Maryam
HEALY, Aoife
CHOCKALINGAM, Nachiappan
BELL, Diane
HOLLOWAY, Kathy
2023

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The aim of this research was to undertake a Country Capacity Assessment (CCA) to inform a more integrated approach to Assistive Technology (AT) provision in England. The results aim to support policymakers in identifying actions to strengthen service delivery to better meet disabled people’s needs, improving outcomes for AT users and reducing inefficiencies in the current approach. This report was prepared by Global Disability Innovation (GDI) Hub for the Disability Unit in the Cabinet Office His Majesty’s Government (HMG). The research was undertaken from November 2022 to March 2023 and led by the Global Disability Innovation (GDI) Hub, which is the World Health Organization (WHO) Global Collaborating Centre on AT access, using WHO tools in the Assistive Technology Assessment (ATA) suite

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.

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.

How can innovative partnerships make data stronger and more inclusive?

WELLS, Claudia
SABITI, Bernard
CARANZA TRESOLDI, Javier
October 2020

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Development Initiatives (DI) Director of Data Use Claudia Wells, Senior Strategic Partnerships & Engagement Manager Bernard Sabiti and Founder and Director of the GeoCensos Foundation Javier Carranza Tresoldi explore the power of partnerships to improve data. Looking at the benefits, challenges and nuances of collaboration between all kinds of actors, they share case studies of what works and practical advice to build strong partnerships. 

Global Leprosy Update 2019

WORLD HEALTH ORGANISATION (WHO)
September 2020

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A yearly update providing data from 160 countries around the world on the state of leprosy. The data will be useful to policy-makers, planners and researchers. 

The main leprosy indicators are now all based on a denominator of 1 million population. The key indicators are the case detection rate, the disability rate and the case detection rate in children.

The sub-title, “Time to step-up prevention initiatives” is the main focus of the Editorial comment on the last 3 pages, emphasizing the Triple Zero targets

 

Weekly Epidemiological Record  4 SEPTEMBER 2020, 95th YEAR No 36, 2020, 95, 417–440

 

How can we measure disability in research related to the COVID-19 response?

MACTAGGART, Islay
KUPER, Hannah
August 2020

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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

Status of disability in Kenya: Statistics from the 2019 census

Development Initiatives
August 2020

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This report presents research that was undertaken as part of Development Initiatives’ work on data to support disability inclusion. It provides analysis of government budget allocations to disability inclusion programmes in Kenya over the period of financial year 2016/17 (FY2016/17) to financial year 2020/21 (FY2020/21). The analysis focuses on disability-relevant ministries, departments and agencies at the national level, including those led by the State Department for Social Protection, the Office of the President, the State Department for Early Learning and Basic Education, and the State Department for Vocational and Technical Training. Due to limitations in the available data, the analysis looks primarily at the education and social protection sectors. This report has been funded with UK aid from the UK government, and was developed with the support of the Inclusive Futures consortium. The opinions expressed are those of the author(s) and do not necessarily reflect the views or policies of the UK government or other members of the Inclusive Futures consortium.

Global Multidimensional Poverty Index 2020 - Charting pathways out of multidimensional poverty: Achieving the SDG

ALKIRE, Sabina
et al
July 2020

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The global Multidimensional Poverty Index (MPI) measures the complexities of poor people’s lives, individually and collectively, each year. This report focuses on how multidimensional poverty has declined. It provides a comprehensive picture of global trends in multidimensional poverty, covering 5 billion people. It probes patterns between and within countries and by indicator, showcasing different ways of making progress. Together with data on the $1.90 a day poverty rate, the trends monitor global poverty in different forms.

The COVID-19 pandemic unfolded in the midst of this analysis. While data are not yet available to measure the rise of global poverty after the pandemic, simulations based on different scenarios suggest that, if unaddressed, progress across 70 developing countries could be set back 3–10 years.

It is 10 years before 2030, the due date of the Sustainable Development Goals (SDGs), whose first goal is to end poverty in all its forms everywhere. The MPI provides a comprehensive and in-depth picture of global poverty – in all its dimensions – and monitors progress towards Sustainable Development Goal (SDG) 1 – to end poverty in all its forms. It also provides policymakers with the data to respond to the call of Target 1.2, which is to ‘reduce at least by half the proportion of men, women, and children of all ages living in poverty in all its dimensions according to national definition'. By detailing the connections between the MPI and other poverty-related SDGs, the report highlights how the lives of multidimensionally poor people are precarious in ways that extend beyond the MPI’s 10 component indicators.

 

The data is not disaggregated by people with disabilities.

Inequalities in utilization of essential antenatal services for women with disabilities: An analysis of the 2017-18 Pakistan Demographic and Health Survey. DHS working paper. No.166

HAMEED, Waqas
ASIM, Muhammad
July 2020

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Although the number of disabled women entering motherhood is growing, there is little quantitative evidence about the utilization of essential antenatal care services by women with disabilities. The aim of this study is to examine inequalities in the use of essential antenatal services between women with and without disabilities.

This study analyzed data from the Pakistan Demographic and Health Survey 2017-18 on 6,791 women (age 15-49) who had a live birth in the 5 years before the survey. Multiple logistic regression was used to test the study hypothesis. 

Research questions addressed were:

1. What are the levels of inequalities in the use of essential ANC services between women with and without disabilities, and by the type of disability?

2. How is the relationship between women’s disability and the utilization of essential ANC antenatal moderated by women’s wealth status and urban versus rural residence? 

COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State

LANDES, Scott D.
TURK, Margaret A.
FORMICA, Margaret K.
McDONALD, Katherine E.
STEVENS, J. Dalton
June 2020

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In order to investigate whether people with intellectual and developmental disabilities (IDD) are at higher risk of severe outcomes from COVID-19, the COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State were compared. Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living inresidential group homes and New York State through May 28, 2020

 

Disability and Health Journal, https://doi.org/10.1016/j.dhjo.2020.100969

 

Ear and hearing survey handbook

WORLD HEALTH ORGANISATION (WHO)
May 2020

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This survey handbook provides guidance for planning and implementing hearing loss surveys, including information on possible data collection tools. The survey handbook aims to enable countries – particularly low- and middle-income countries – to gather data by planning and implementing population-based epidemiological surveys.

The main uses of data collected by such surveys are:

  • to provide an accurate picture of hearing loss prevalence in a given area, which could be a country or an area within the country (e.g. district or state);
  • to provide an overview of the most common probable causes of deafness and hearing loss in the study area;
  • assess global and regional prevalence and trends

 

Using this survey handbook for data collection will help to ensure comparability of data collected through studies conducted in different countries and by different investigators. This will facilitate the estimation of global prevalence and the examination of hearing loss trends over time.

Disability Royal Commission: WWDA’s response to education and learning issues paper

SANDS, Therese
April 2020

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In 2019 the Disability Royal Commission released an issues paper on education and learning. The issues paper asked 13 questions based on some of the key issues and barriers experienced by students with disability.

Women With Disabilities Australia (WWDA) have now submitted their response to the issues paper which highlights key recommendations to improve the lives and experiences of students with disability. The recommendations stem from the following key areas:

  • Inclusive education
  • Intersectionality
  • Inequality and discrimination underpin violence
  • Restrictive practices – torture and ill-treatment
  • Exposing violence – desegregated data and intersectionality
  • Building strengths through inclusive education

Protection and COVID-19

GLOBAL PROTECTION CLUSTER
2020

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The Global Protection Cluster (GPC) and its field operations are working closely with partners and governments to ensure the inclusion of those in need of protection as a result of conflict, disasters and climate change in national and local COVID-19 preparedness, prevention and response activities. This page shares protection-related information and resources on COVID-19, including examples of operational tools produced by field clusters.

Inclusion Counts: Disability Data Tracker. A data collection and advocacy guideline for Organisations of Persons with Disabilities. (Spotlight on adequate standard of living and social protection)

ADAMS, Lisa
2020

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This guideline is intended to be a tool for Organisations of Persons with Disabilities (OPDs) and their allies on how to advocate for the rights of persons with disabilities within the global development framework known as the Sustainable Development Goals (SDGs). The thematic focus of this guideline is on an adequate standard of living and social protection.

 

The guideline has three main parts:

  • Introduction and overview
  • Assessment tool to evaluate where your country or sub-national region is in terms of implementation of CRPD Article 28
  • Advocacy strategies to support implementation of CRPD Article 28 within the SDGs

 

The guideline also includes Annexes with further tools, resources and good practice case studies

India’s disability estimates: Limitations and way forward

RAKHI, Dandona
et al
September 2019

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With India preparing for the next decennial Census in 2021, disability estimates and data collection methodology between the Census 2011 and the most recent population-level survey for India and its states were compared, to highlight the issues to be addressed to improve robustness of the disability estimates in the upcoming Census.

 

Data from the Census 2011 and from two complementary nationally representative household surveys that covered all Indian states with the same methodology and survey instruments–the District-Level Household Survey-4 (DLHS-4, 2012–2013) and the Annual Health Surveys (AHS three rounds, 2010–11, 2011–12 and 2012–13) were used. Data from DLHS-4 and AHS 2012–13 round were pooled to generate estimates for the year 2012–13. Data collection methodology between the sources was compared, including the review of definitions of each type of disability. The overall, mental, visual, hearing, speech, and movement disability rate (DR) per 100,000 population were compared between the sources for India and for each state, and the percent difference in the respective rates was calculated
 

Global Disability Summit: One Year On – accountability report 2019

EQUAL INTERNATIONAL
September 2019

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This first accountability report, one year on from the Global Disability Summit 2018, presents independent analysis of the 171 sets of commitments made by governments and organisations at the Summit. It also sets out the results of a self-reporting survey completed by Summit participants, updating on progress made against their commitments so far.

 

The wider impact of the summit is discussed.

 

The results of the first GDS18 self-reporting survey demonstrate that significant progress has been made on implementation of the 968 Summit commitments. Work is reported to be underway on 74% of the commitments and 10% are reported as already completed, contributing towards an improved and increased visibility of disability inclusion within development and humanitarian action.

 

Appendix 2 gives country level case studies: Case study developed by Users and Survivors of Psychiatry Kenya; Case Study developed by the National Federation of the Disabled Nepal (NFDN); and Case Study developed by I Am a Human, Jordan

 

Rapid assessment of avoidable blindness (RAAB) and disability and equity survey. Nampula, Mozambique

SIGHTSAVERS
July 2019

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This report describes the findings of a rapid assessment of avoidable blindness (RAAB) conducted in Muchinga Province, Zambia in 2017.

The prevalence of blindness was just over 4% and the major cause was cataract, followed by glaucoma. Only 37% of people who require cataract surgery have received it, meaning there is an urgent need to scale up access to cataract surgical services in the province.

In addition to the standard RAAB questionnaire, an additional two sets of questions were administered to the participants to understand their disability and socioeconomic status: the Washington Group Short Set of Questions on Disability (WGSS) and the Equity Tool (ET)

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